Promoting simplistic policy responses to complex social issues rarely produces meaningful solutions. Such has been the case during the past month as lawmakers at local, state and federal levels have targeted elimination of a single, FDA-approved hydrocodone product (Zohydro ER) as the linchpin action to effectively address our nation’s growing medication abuse problem. For them, facts be damned.
FDA’s Commissioner Margaret Hamburg has undercut their reasoning and loose “facts” as well, pointing to our need for a far more complex approach to turn the tide on medication abuse in the United States.
I’ve detailed the errors of their Swiss-cheese arguments in the following blog posts at this LINK.
Notwithstanding, the opioid clock ticks on and the figurative pendulum continues to swing from opiophilia to obiophobia and back again. A recent editorial in Journal of Pain Research, entitled “The damage done by the war on opioids: the pendulum has swung too far” discusses that “media sensationalism, neuromythology, and mischaracterization of pain patients as drug addicts has even deterred some prescribers from treating pain patients that they have successfully treated for years without problems of drug aberrancy”.
On May 10, just hours before the above open access article was released, the New York Times ran an story entitled Opioid Boom Leading More Doctors To Turn Away From Prescribing Painkillers. I don’t deny the merits of this particular story, as opioids certainly are not the panacea for all patients and clearly should not be prescribed pervasively for chronic use without careful deliberation and assessment.
But largely missing from the national conversation and media coverage are the voices and stories of the tens of millions of people that must endure pain on a daily basis. Instead, the day-to-day struggles of these individuals (and their families) to achieve even a marginal quality of life are buried under an avalanche of commentary that stigmatizes and marginalizes these people. That must stop…NOW. It’s time for all of us to step back.
It’s time for us to remember the people with chronic pain and to honor their humanity as they struggle to find some relief from debilitating pain. And that’s where I ask you, to help me, help you.
I want to amplify the stories of people living with chronic pain. It’s time we build awareness among lawmakers, physicians and our neighbors of what portraits in courage look like and why people with chronic pain deserve access to educated providers that could bring them a degree of pain relief.
I believe that people with chronic pain are entitled to be part of the discussion and part of the decision-making. If you agree, I invite you to share your story of coping with chronic pain. I’d like to help you tell your story so that those who are in the position to make decisions that could affect your life and the lives of those who care about you, understand your life, your hopes and your struggles better.
If you’re interested in helping raise understanding and awareness of the lives of people with chronic pain, please comment below with your story. The plan is to get these stories out to people that can make a difference.
I absolutely agree with you. This mass “Opioid” addiction that John Q Public 8s screaming about isn’t as black and white as the law makers and public at large would think. I am a 46 yr old woman, I have 3 compression fractures in my vertebrae. I also have 3 in my neck as well. I have had 2 open heart surgeries, I know what pain is. I have been on pain meds for about 17 years. I am not out stealing or hurting others for a pain pill. I have never overdosed. I have been treated by one physician the entire time. What gives these law makers or the public the right to gamble with my health? Are they going to clean my house, or help take care of my disabled husband because I am in too much pain to l7ve a normal life? People in America need to snap out of believing whatever politicians or law makers say. Also the police aren’t going to talk about the millions of us who are not abusing the medicines we so desperately need, no you will only see the ones who are doing wrong. But I think what law makers, the police, etc. are failing to say is, we didn’t have this “opioid epidemic ” as they call it, not until they closed down all our pain clinics, and basically tied our doctors hands. This helped usher in the REAL crisis, HEROINE, HEROINE, HEROINE!!!!!! Why can’t people see the truth? Because they just don’t care, it’s not affecting them. But if this attitude keeps on, our doctors will soon be REQUIRED to ask permission to treat us for even the most basic things. And you public, you voter, it will be your fault. Don’t believe anything until you do your own research. I really hope these stories reach people, I don’t want me, my husband, my neighbors, not even these law makers to suffer needlessly in pain. Gid please help us!
omg! Finally we can talk about something other than $making CANCER. I too have been in pain since age 15 yes 15 that’s over 30 years now & almost daily it boggles my mind that I’ve been dealt this many problems with my health 1 after the other as if I was some stunt women it all started at age 15 actually 12 when they discovered deformity scoliosis then after having rods corrected & fused on my whole spine I had this lovely $ hungry surgeon suggest yanking these off my spine after fused for over 12 years just because he would make more than the common discectomy I also needed only to have the original surgeon yell at me months after “I told you those Rods were to stay in for life” as if I had made a mistake. Then I had a 4 level fusion with extermination and so on and so on. All this time I have had to deal with incompetent doctors treating me like a splinter in there hand and never being given any help with any thing to help manage all this pain and the affects it has had from everything from sex, relationship, daily driving to run arons to anger to even my belief in a so called god. So yes I am angry with the system and I am angry that people care more and have more sympathy and support for people whom usually aren’t even in much pain plus Im sorry they at least get to die a in a dignified manner. When we will kill a horse without question I am angry I have had to keep suffering days, months & yes even decades with absolutely 0.00 quality of life. They will not take away pain pills until they start giving funds to these scientist whom will finally care about something other than big time $$$$$ making big C!
I don’t take pain meds much. They have always made me sick. Recently I’ve been dealing with arthritis in my spine and nerves flaring throughout arms, legs,and neck/ back. Numbness in fingers, hands, arms, toes, feet, and legs. At first they gave me shots in joints to ease pain but after finding arthritis in my spine and realizing shots in joints wasn’t fixing anything but making me hurt myself thinking I could still do things that hurt me worst. Now I’m in therapy and on meloxicam and muscle relaxers. I hate pain meds but if I didn’t have them I would scream loudly whenever a nerve flare erupts or a muscle locks up due to a ill nerve response ( my ribs). Never had pain like a rib being ripped out to make another woman. That’s how it feels. Can’t breath. Lasts about 30 sec to 2 minutes. Happens more often now once a day sometimes more often. Going in for MRI,x-ray and blood test findings. Hopeful.
I have been looking into indica dominant strains of marijuana for pain relief. I’ve found several topical thc\cbd ointments that really work for muscle pain and make u feel calm at the same time. Plus they have drinks and edibles that really make ur body calm and easing pain. When in pain, being calm doesn’t come easy. I’m sharing not to say opoids are not, great smoke pot. I’m sharing so you know there are options out there that can greatly help better the quality of life we all have left to live. My wife says my disability is a burden to her. Married 20 years. 2 kids. I forgave her, but like a curved dagger twisting in my gut the pain of what she said haunts me. I have a strong faith in Jesus Christ and suicide isn’t a option. I do know pain and loss. I quit my job cause I could no longer lift more than 2.5 lbs. Can’t drive well but must where braces on arms so they don’t fall asleep. We’ve had problems but now we have “the burden” ( me) to deal with. So please think with an open heart and mind when dealing with ur pain. When dealing with the relationship I’m no expert. But I know forgiveness is what is needed. Not for for tat
I forgot to add in my last post, they decreased my medicine, with all the issues, deep down I want off but I am not getting the help I need to get off the medicine and they do help my quality of life. It really sucks people abuse them it makes it hard for me and people are seriously injured. I don’t get the withdrawals everyone is complaining about my drs advises me to hydrate and people who do have serious issues don’t have a hard time getting off the medication if these drs actually help he’s you. I started taking less oxycodone when they send me to a good therapy but I haven’t found one yet that was helping me overall. They help one part only and I have multiple injuries. I fear driving now. It’s difficult for people who don’t abuse these drugs now to heal because the abusers. Everyone needs a dr who runs the right mri and it shouldn’t be a problem. My physians know I am miserable and they help me find ways to cope and take less medicine. I feel my pain still with the dosage they have me on they will not up my medications anymore either. The little I gets me out of bed. The withdrawals for me don’t exist because I drink a ton of water. I hope everyone who is having trouble withdrawals Takes my advice and drinks ph 7 or above water. A gallon a day it sucks to tinkle a lot but it beats the withdrawals that come with the pill.
So, though I want to offer up my reply, I feel the absolute neccessity being in a matter of hours, I am having yet another spine surgery(though on a different area of my spine)this being my 2nd surgery on my spine in 6 months time but completely medically neccessary due to my 20 year old cervical spine neurostimulator implant “leads” having shifted in my cervical spine and therefore no longer allowing for any pain relief. And, I really need to speak to my Spine/Pain mgmt Dr regarding what I have concluded and discussed about 3 wks ago with the P.A that works with my specialist in the very important matter regarding the possible weining off of the Fentanyl 75 MCG dosage patch as I have come to the conclusion that what was for many years is no longer helping in the blocked nerves that at one time was helping me but over the past 2 months I on average now have a minimum of 3 or more spasm attacks all throughout my spine. And, just one week ago I had my 6 month appt with my Thyroid Specialist after I had explained what I have had to endure and my decision as to my Fentanyl patch. And, she explained that I would be a ideal candiate for Medical Marjiuana. And so now I only need to figure out as to which of if not all of my Doctors that I need to have this very important discussion with and praying I can get some decisions. FYI, I have DDD(Degenerative Disk Disease) plus Severe Fibromyalgia, and Chronic Occipital Neuralgia Headaches, Thyroid Disease, Spinal Steniousis ,also High Bloodpressure, so with all that being stated, I am truely praying that somebody in the realm of my many physicians will be open to my medication options. I honestly do not feel that anyone should be forced to live in this horrible never ending cycle of pain.
Why are we only given these narcotics as option and they have given them to us and now they will yank away after dr.’s yes Dr’s not pt’s have caused this crisis. I don’t know how many x’s I’ve heard this person that person got hooked on pill’s after a leg broke (acute) or a car accident when these people should have never been supplied these strong meds! These so called dr.’s only prescribed knowing they shouldn’t for money yes money they caused this whole thing and they are to blame!
I now been given this stupid MEDTRONIC pain pump they tried to put in me in my 20’s thank god I was smarter and I knew not to do that. Now it’s not working and they won’t take it out and they are threatening me no break thru meds if I don’t stop the cannabis when it’s the only thing that helps at this point. I don’t want this machine bulging out of my stomach nor the horrible side affects that come with it. Please if there anyone out there to suggest or help me please because I’m really at the end!
How do you heal? I am on oxy side effect suck! Everyone dealing withdrawals stay hydrated you need just drink water! Make sure it has ph 7 or 8 or higher. A gallon a day! Start with a half gallon and find a water that taste good to you if you hate water . It will help the withdrawal taking these pills as little as you can really difficult for me because the pain and burning in back is not a joke I seriously cry. Constiparion isn’t fun. I’ve been in 3 car accidents I’ve been rear ended 3 times never my fault. Completely stopped and someone just drives into me stopped at res lights. One lady didn’t stop at the res light hits me. I have serious spine problems, these pills are very expensive they are a nightmare I want to be done with. they weaken my immune system and cause organ failure. Doing my best to regain strength. It’s so hard. I am weaker than I have ever been. They do help my quality of life I can’t lift anything without them or sleep it hurts to lay on back side at night i am a mess. I have 2 rotator cuff tears both arms , ruptured implants, miniscus tears both knees, t 6 t 7 t 8 cervical spine tear fissure tears everything that can happen to a disc I have it. Broken nose. Nuerologist waste of my time! I nerve problems headaches so intense I cry. Jaw pain brain injury, concussion, broken fingers, ankle swelling mri said my ankle has fluid. Rib injury, stomach pains, i am missing something for sure lolThe person who hit me doesn’t have insurance, I am having trouble getting better. I can’t see a surgeon too expensive. 80,000 orthopedic the plastic surgery is 60,000. I have worst lawyer. I feel like no cares about my well being in his office. I can’t fire him so here I am seriously sick without help. Just medicine He makes me cry. I am so messed up I can’t get out of bed at times. I am getting infections. Nothing is fixed leaking silicone tears broken nose I’ve been living like this for over a year. Oxycodone helps me but who wants to take a pill everyday to function I want get my spine Heath back my arms and knees are weak. That’s not including the head trauma and reconstructive surgery that no one is helping me with. Any advice! I have the worst luck ever.
I was a floor tech, which meant I buffed floors and then waxed them with a very old heavy buffing/ waxing machine. That’s where my back problems started but I didn’t know it at the time. The doctor sent me to a pain clinic which started doing esi’s on me. So many I lost count. If I had a bad day he’d call surgery and get me in to inject more steroids in me. Well he missed his target. What should have made me better changed my whole life. They used depo medrol because it is supposed to be the best steroid medication to inject. But when going in your spinal cord it causes a caustic reaction, your nerves becomes infalamed to the point where you are in more pain then when you first went in. It became so bad the spasms it was causing in my back would drop me to my knees, I’d crawl to the toilet to throw up from the pain only to make it worse on my back. That was 2010. I couldn’t sit for any length of time, I cried myself to sleep, I got divorced, was working as a can and getting up 3 or 4 times in the middle of the night to walk to try to calm it down, the pain made it impossible for me to sleep, lay, work, do anything but because I’m determined I didn’t give up. Doctors would not help because I had no insurance. I lost my home, my career, my life as I knew it. I took a part time job and rented a bedroom from a friend just to have a place to go. By the time I got on state insurance I was in bad shape. They did a mri and seen I had possible nerve clumping seen with arachnoiditis. The university said it would not give me any pain meds except ibuprofen, but they were all about more injections. So I got more. Only to come out of it in worse shape than before. I went to a hometown doctor who did prescribe me Vicodin to help but it barely touched the pain. So as my symptoms progressed they gave me medication to give me a quality of life I wouldn’t have otherwise. But because of the opioid crisis they wanted me to see a different doctor to prescribe my medication, but they were my go between. So I started going to pain clinics, the first one read my mri report and said my gosh, how many steroid shots have you had, I told him to many to count around 30 I suppose. He then diagnosed me with arachnoiditis with bilateral disc tears leaking spinal fluid and offered my doctor choices. He said there was nothing they could do to help, as did the next 4 pain clinics I went to. I finally went to another pain clinic my parents drove me to, and he was all set to give me an injection again until he read my reports. He told my parents if it were his daughter he’d load her up in the car and find a specialist to take me too even if it meant driving across country. Well I found one in California, I set up a go fund me account to get there, but I had to get new mris before and bloodworm. Everything was sent to him. So I flew out to see him as he said he’d help me. He prescribed supplements, magnets, and more medication to help me. While he was talking to me he told me in his yrs of practicing I was one of his worst cases. Asked me what happened, I told him I kept getting esi’s and he said well they went into your spinal cord instead of where they were aiming. But because I couldn’t fly out there every 3 months I couldn’t get the pain control he gave me so I had to rely on my doctor. Dr. Tennant was the doctor I saw. He said I had adhesive arachnoiditis and it was bad. Now he’s closed his practice and a lot of his patients are without medication to have a quality of life, I still am on the same dosage I was 3 yrs ago for pain, but my doctors are always at me to find someone else to take over my medication. There were 3 specialists for this rare disease and 2 of them have now retired and the third one won’t except any patients. I do my physical therapy, I also work 3 hrs a day a few days a week just to have some normal life or to feel like I’m still contributing. That that’s what my medication allows me to do. If you take the medication away I’ll be like the others who are bed bound and in unbearable pain. As one doctor stated with adhesive arachnoiditis it’s the pain is equivalent to a person in stage 4 bone cancer at the end of their life without the release of death. That’s the pain I and others endure on a daily basis. Pain medication is our only way to having some quality of life. You take that away you are responsible for killing me. There’s been a 30%. Increase in suicides because pain medication has been taken away and nothing releases it except for pain medication. We are not addicts so please stop treating us like we are. We are human, you are torturing humans with what you are doing in the most inhuman ways. Let us have a quality of life, I want to be around to see my son get married and to be able to SEE him get married. You are treating pain patients as though we are terrorists from another country. I thought we had rights to medical care, I thought doctors took an oath, until you’ve been in our shoes don’t you dare say you understand because you have no idea.
I apologize that I am using this box to add a comment, not reply. I cannot see how to otherwise. I have analyzed the FDA’s behavior.
Based on merely applying possible reason and reading what the British magazine “The Economist” had to say about “America’s False New Epidemic of Narcotic Addicts (via Rx Pills) here are my findings:
1. We do not have a massive epidemic of Narcotic pill addicts.
Virtually ALL of the Doctor Shopping was done for DIVERSION (resale of product to pre-existing addicted people) purposes. By Senior Citizens living ONLY on a fixed income who could hardly pay for even the prescriptions they needed themselves. They would work as a team with a child, grandchild or savvy neighbor who knew of this opportunity. It was easy to add 2 more cash pay doctors to the one you already saw, or start with one your insurance covered and cash pay out-of-pocket 2 or more. The prescriptions are all generic so with any discount card they are cheap.
2. The savvy younger person could get almost $20 per Vicodin and maybe more for oxycontin (largest sizes) then they split it up. Old person has just moved up 2 socio-economic levels, can eat some meals out, take an annual cruise. No wave of new addicts.
3. This story I DID HEAR about certain people living with their families over a few years. I NEVER, EVER heard of anyone I knew or they knew having a narcotic pill problem EVER! Only Rosh Limbaugh when he got skinny and would not disclose his secret diet (Oxycontin).
4. Then EVERY STATE that I know of made that legally-questionable access to every medical professional DEA Website available for free or very cheap. IT says every single control drug (or more) you have picked up in any pharmacy anywhere in any county in the state! Their work was FINISHED!
5. So why the Stalin “The Terror” State? Why the lies? Why let us all suffer and contemplate death at least 5 or 50 times a day? Why the change in status to a C-II? And even while scared shitless and acting that way WHY to the Doctors and Pharmacies actually treat you like a scumbag addict or diverter when you would have been a “fabulous patient” a mere few months or a couple of years sooner?
* Suicide as a hopeful outcome. You will stop costing this country anything.
* Payoffs or kickbacks from cartells because if people screaming in pain can get the same base product from somewhere else, that market will exponentially grow.
*Prisons and Jails: For the people caught buying the things illegally in the spirit of the law who were led to buy the illegal thing.
* The Medical Assholes who have looked at each of us with disgusted shame and me also as a drug dealer (diverter) as I am self-pay but now these same jerks DO accept cash because they want to sell you Ketamine? Let me say at first I thought they might be jerks who were confused and I was devastated. Now I know better. These are MONSTERS who see us in the ER screaming in pain and this triggers their true desire to kick someone when they are down, not help them and now they have a handy excuse. One ER “doctor” made me wait 3 hours at a not busy place. I was not screaming. He came in shouting “I AM NOT GIVING YOU PAIN MEDICINE” (migraine mixed with Cluster Headache). “Fine, but why are you screaming in my face? Why are you extremely rude? Who are you?” He stormed out. A regular other Doctor took perfect and quick care of me. Eventually I stepped out “Who is that hobo that was shouting in my room?” Same usually nice staff talks shit to me “we are getting your paperwork…Dr. Hobo said you refused all treatment… “Dr. Hobo is lying”. If steroid shots and blah blah blab are available I would gladly have them over nothing. And I have issue 2…Go to your PCP….I don’t have one and this issue is chronic and it is Friday… Hmmm all of you are acting like big nasty bitches with Dr. Hobo here…you ARE allegedly in existence for the care of other human beings…your behavior is disgusting to the ones that pay your bills…Yuck.
Who waits for three hours just to refuse all treatment?
Hi Melissa. My name is Sandi. Without me going into detail i know exactly how your feeling. Dr. Tennant was also my doctor. There are 4 doctors in their group of Intractable Pain Management. Did Dr. Tennant give you their names? Ive seen 3 out if the 4. One of them who has his clinuc in Rowland Heiggts Ca only cares about getting miney from his patients. I was seeing him for littke over a year and he charges 3 times the amount that Dr. Tennant and my doctor that im seeing now charge. Im very thankful that Dr. Porcelli (my doctor now) agreed to see me. If you havent already please check into the other doctors that are with Dr. Tennant’s intractable pain management clinics.
My Mom has head/neck cancer and is in her third relapse for her disease. This tumor is in her cheek and is literally eating her face off. Her oncologist has had her on a pain regiment for months, but now says she must go to a pain management doc who decided to completely change her regiment, dramatically decreasing her meds!! What can be done to change this bullshit so that cancer patients aren’t lumped together with all others at a pain mgmt doc?! This doctor (Dr. Guskiewitz Gainesville FL) told her he has over 1000patients and doesn’t have time to spend on her case and basically she HAS to take what he prescribes or go without!! Is this even legal?! This law is the biggest bunch of BS to put it mildly!
My father recently died of bone cancer a very painful disease. The last two years of his life I seen him get off his deathbed wracked with pain and tousled around to be transferred to a town 30 miles from our hometown just to get his meds refilled.. I will never forget the pain that caused him and the fact that he was a victim of the government and their one-size-fits-all Solutions that rarely fix anything.
I was in explosion roof caved in. 16 broken and fractures bones collapse lung they gave me 2 weeks of pain meds that’s all. So I had to go on street to seek help. If govt don’t want to help Fuck paying state tax. I hoped I get caught in drug sting going right to channel 7 news.
Necessity Defense is what started the medical cannabis movement. If the government gives you no legal access, they’re violating your human rights. I have a small number or pills remaining and I’m scared s***less of what I am going to have to do when they run out. I don’t know where to buy drugs, but I may have to find out.
I can’t believe this is happening, I have osteoarthritis, have had both knees and hips replaced and had major shoulder surgery numerous back injections (I also suffer with a bad back) all because the doctors said they could fix me. ha, ha
Last year I broke my back twice, once from a fall at home the other from a car accident where I was rear-ended. The car accident left me with a bulged disc in my neck and two more in my back.
I can’t imagine trying to function without my meds and I’m no where near as bad off as some of the other folks writing here.
What do we do? Why can’t we march on DC? Every other group with a bitch marches on the capital WHY NOT US? I would like to hear from others who feel the same as me.
I am one of the many disenfranchised chronic pain patients.Sadly,as a vet,we had a new Yale grad becoming pain.management phyisian.He’s from India,which actually surprised me,most Indian Drs are very compassionate.For over two years he gave my regular meds,75 fentanyl patch and morphine.I asked if he ever had experienced pain himself,of which he said no and very long winded tirade about how people who think they have pain just are seeking pity. As a Vietnam era vet Orthopedics,field support for Airborne units+surgery tech,morgue tech,I wasn’t expecting such arrogance.He proceeded to lecture that pain is totally mental.I’m sitting in the office ,2shot knees,rotor cuff tear,old fx hip multiple rib fxs. (Many injuries that weren’t treated because I couldn’t get an appt in Orthopedics @the VA)but we have to pay if civilian care,I’M100% & I get flipped off. Now that the POTUS has stated opiates are horrible murderous drugs ,I asked about cannabis oil,I’m retired Military,this Fed agency. Even though in Va our Gov signed the bill legitimizing it.The Va states No. Now,the pain Dr is pushing SUBOXONE-( withdrawal medication for heroin,)not for pain,if we do use the cannabis oil,the Va will ban further healthcare treatment,as though they care now. When a pain doctor,never knowing what pain feels like says in arrogance that pain even fx pain is totally psychological,I have to question if he’s the sharpest pencil in the box?. The pain Dr despises me so much,he sees me only by force of administration otherwise he fills 30 day script (I went 7-8months without being seen)but in June i believe he’s planning on terminating all my meds (I’ve been taking exactly same dose x20+yrs) without incident. Being on opiates as many of you,was the last resort,I can’t take N-,Saids,Tylenol so I’m extremely limited.I’m angry also because I went from a chronic pain pt to being profiled. At this point he s terminated the fentanyl patch,no titrate down,suddenly terminated. Other VA Dr s don’t see any issue with using cannabis oil but my pain Dr refused to acknowledge pain is real.
He simply states,if you hurt doing something specific,do it twice as much and eventually it will stop hurting. This doc,has to be the winner. I’m very cognizant that mind/ body does correlate but with such crass uncaring words,NO!. I have known several vets,who couldn’t endure the pain.They no longer are living; what little quality of life they had was stolen,which I surmise is going to become more noticeable,especially since states have enacted euthanasia./I PRAY COMFORT TO EACH OF YOU,MY BROTHERS AND SISTERS WHO SUFFER NEEDLESSLY!!!!!
Read on Twitter docs just got back from a conference said if you’re not writing scripts like Suboxone you are not doing your job! There you go! Next epidemic..but big Parma..
I am baffled. I have been on Fentanyl 100mcg q48h for 8 years as well as oxydone a 20 other drugs. I was forced to endure withdarawls that made me violently ill. My dr totes himself as being an autoimmune specialist. I have not had any blood work, physical or any appointment last ill ng over 10 minutes. I am not able to gind a dr because according to the physicians network, he has not treated me. He did culture me for MRSA which came back positive and i received no treatment for 9 months. He authorized open chest surgery when I had full blown MRSA. I have Lupus, Sjogrens, Sarcoidosis, chronic pancreatitis, cystic liver, gastroparesis. Breast cancer is in my family…no mammogram for 6 years.
I am so depleted of the ability and desire it takes to beg and plead for the continued prescribing of medications I have taken for the relief of symptoms caused by 2 terminal illnesses and secondary conditions causing auxillary pain. I have been taking the same meds, at the same dosage to maintain the pain levels allowing a somewhat meaningful life. I have never asked for early refills, increased dosages, or increased strengths. I just need the pain to be tolerable. Iam more than likely dependant on these medications for the management of chronic debilitating pain, but I am going to die dependant on them. Does this addiction indicate what the DEA considers a substance abuse problem? I am having difficulty understanding that due to the fact that they allowed the dispensing of 27 medications , 2 of which are opiods, knowing the exact facts that they do now. They created this health care crisis themselves. Patients are now facing the return of debilitating pain and withdraw symptoms which is unnecessary discomfort to face in the already difficult journey period of the final phase of life. There are also people that have already succumbed to the pursuit of illiicit, illegal street drugs as a replacement for the unavailable medications. Hurrah!!; Way to satisfy the problem of overdose from opoid drugs, it is much better to have to face US , law abiding, compassionate, citizens forced to the streets to purchase relief of pain in the form of uncontrolled, very dangerous drugs to replace discontinued Rx medications. The deaths from prescription opoids deaths may be reduced but I am sure you will see an increase in deaths related to the pursuit of obtaining pain relief from unscrupulous methods and extremely addictive, much more dangerous drugs. I am so sickened by the terminology labelling patients that are unfortunate enough to have been stricken with pain from the tradgedy of terminal illnesses. I am so PROUD TO BE A TERMINALLY ILL CITIZEN OF THIS FINE COUNTRY that I can count on to protect me and shelter me from harm. Not in this life. I am sick of having no rights but be expected to teach our children how it is important to fight for freedom and protect this country. There needs to be a political overhaul. I hope physician assisted suicide is available to patients who cannot cope with the restraints caused by unbearable pain. I am scared when I look at my medication box and consider a much easier way to avoid all of this unnecessary suffering.
I am so sorry and understand completely! Sad when we have to go to Mexico, Canada, risk seizures & become completely stigmatized for taking a pill AS IT WAS ORIGINALLY CREATED FOR!!! I’ve lost 2 Psychiatrists & Dr’s, ONLY because CVS & Express Scripts were keeping me safe. They made my only subscribing pain dr of years submit 37 pages to get my last bottle of Soma that I needed to avoid seizures & to taper off of. It worked for YEARS! My psychiatrist of 18 years passed away & his practice was closed. CVS had no meds & said “you’ll live! Narcotics are first come first serve.” I haven’t increased my dosage of ANYTHING in 6 years.
I’m a 43yr old female Engineer w/ severe degeneration of C2-C6, Radiculopathy, pancreatitis, Trigeminal Neuralgia & neuropathy (just a few) were sending me to the ER constantly. Chronic nerve pain, arthritis & panic are daily. I didn’t choose this. I don’t drink, smoke or do illegal drugs. Same Dr’s & pharmacy for yrs. Soma 350 MG(4/day MAX ) & 1 mg klonopin / day gave me a life back, have kept me out of the ER for 5 yrs & have allowed me & GET OFF everything else I’d been put on: Gabapentin, Neurontin, percocet, methocarbamol, Meloxicam, wellbutrin, Paxil, flexorall, Seraquel, skelaxil, steroids, norco, hydromorphone, ativan, valium, etc.
The Az, CDC, CVS & FDA guidelines are forcing me & others to get off Soma without warning or tapering. That’s cruel. I don’t want a seizure. My Dr’s have called CVS & Express Scripts 30 times. They’re scared for me & IRATE!
Please give people access to at least taper off safely. We’re not all seekers.
Oh Tracey, I am so so sorry this is being done to you. Like you my Mom has a life threatening illness. She has head and neck cancer and right now, I am watching a tumor in her cheek literally break through and eat her face offf. Her oncologist had to turn her pain management over to a pill doc. On 7/24 we met with him for the first time and he decided to increase her OxyContin to 3 pills daily, instead of two, and leave her IR oxycodone where it’s been at for over 8 months now, 2-10 mg tabs every 4-6. Insurance wanted a pre auth to add the additional OxyContin, so he told me we would use Xtampza while we waited for her approval. I went in 7/30 to pick up Xtampza Rx and was given 2 of those at 36 mg each AND a new Rx cutting her oxycodone down to ONE 15 mg tablet every 6 hours?! I’ve called daily trying to get someone to explain why we went from adding 30 mg to her current regiment to cutting it clear down by 45 mg daily?! No one will answer me and they are now being beligerant and treating my Mom terribly. Told us they have over 1000 patients and don’t have time to spend this much time on one patient, and if I didn’t like it I could take her back to her oncologist (knowing full well I can’t) or find a new Dr. It’s baffling and so abusive to a very sick cancer patient!! I’m with you on the baffled, angry, sickened feelings this is all causing for truly sick people. Bet those that are merely pill seekers, opiod addicts, haven’t missed a dose or even had to take a reduced dose! Such bullshit!! Be well, Lady!
I would have been blessed to inherit our POTUS’s good gens,but I have not. I am the post WWII baby,where they lacked nutritious supplies & good medical care in E Europe.
I was BORN with bilateral Hip Dysplesia,progressive spinal Scoliosis & till date,had undergone 6 Spinal Fusions.
Yet,I was able to graduate from a Nursing School,providing care to patients : first in Hospital Critical Cardiac ICU. Since my spinal pain 2 / to Degenerate,Disc Disease & both legs Radiculopathy,I have decided that Home Health Nursing would be less stressful on my back & I did not have to stay on my feet 12 H / day.
I loved Nursing more then anything more then raising my children. Last 2 years I endured 2 Failed lumbar Fusion,which left me with severe bilateral legs Neuropathy & Radiculoparhy. Intractable pain,24/7,loss of independence,inability to ambulate without the walker and / or a cane, for a short distance..
Yes I would rather be dead ,then to live like that.
Without the great training of my fantastic Pain Management Doctor,I would be reduced to a creaming from nonstop pain,bed bound vegetable.
For this administration Histeria over an a Real Opioids problems ,but not addressing good,honest people who must depend on pain medication to allow them enjoy even for a little bit their children & grandchildren – they dare to refer to well trained,quality of life saving docs – as a ‘drug dealers ‘ it’s a dirty shame !
We do not walk ( device free), we can’t enjoy a game of golf or even recline long enough to watch on TV a nice movie or a decent Golf game .
You all are terribly lucky not to have our problems. For a Opiods epidemics ,you must look at the docs prescribing liberally to themselves ,their friends & family members & not doctors who are trying to help us preserve a little dignity in advanced age,patients suffering with a real,intractable & severely debilitating pain.
Unless ,you all can come up with or have FDA block another pain methods,unless you are hoping to end all of our lives & save some $$ instead of paying to us Soc.Security Benefits for which we have paid in for 50 & other even longer years.
Please do not look at everyone depending on pain relief medications as JUNKIES,we lead honorable & productive lives for many years .o
Thank you for writing the article and trying to help people in pain. I had a botched laminectomy at L5-S1 level, in 2011, in my small town. The surgery caused excruciating rectal//ana/geintal/buttock/posterior thigh pain. I could not sit for months, and I could barely move around my house. This is actually still the case because, although I have been to doctor after doctor, in different fields, I always end up with the wrong doctor. I have been to AL, TX, NY, MD, MN, FL, NC, KY, and to many doctors in TN. None have wanted to become involved with my complex problems. I mentioned to the back surgeon, early on, that I though I had a pudendal nerve problem. This was because all my symptoms, including bowel/bladder problems, feeling of sitting on sharp objects, anal, vag, rectal pain, constant bladder infections, and many others, are that of pudendal neuralgia. He got angry and told me we no longer had a doctor/patient relationship. He labelled me as a drug seeker, although I had not asked him for pain medicine of any kind. After his surgery, I was fortunate enough to have a PCP give me medicine, until he could get me into a pain clinic. Of course this was back in 2011, before the media and everyone else started making people with true pain, look like drug addicts. It has gotten to the point that our lawmakers, doctors, and the media want to make the general public, that knows nothing about chronic pain, think that taking one pain pill is going to cause addiction. I wish they would focus more on making sure that patients could sue doctors who ruin them. Just the opposite though, doctors are protected. I am told that Tennessee is the worst state for that, as well as for having decent pain management. The botched back surgery also caused my pelvis to tilt, resulting in me needing a hip replacement. That surgeon also did the surgery wrong. He put the device in at a steep angle causing me to fall, and be in constant pain due to hip instability. The implant would slide around, during my sleep, and I would wake up in severe pain. It took nearly two years for me to find a doctor that would diagnose the problem and do a revision surgery. By this time, the problems caused my back to get worse, which was because the back surgeon had put a pedicle screw in my S1 nerve root. I now have severe L3-L4 stenosis. It took another six months to find a reputable surgeon that would take on my case, probably because of all the bias I have faced, as a result of the spine surgeon labeling me as a drug seeker. I went to a new gynecologist, because me PCP insisted, after I asked him to give me a referral to go somewhere for pudendal problems. The gyno. did a vaginal ultrasound. I did not feel like this was the test I needed, but I went along with him. It was normal, but all the probing caused me to have even more pain in my private areas. I initially hoped this would subside, but it did not, and I am left with more chronic pain on top of what I already had. The only thing that has relieved my pain, in eight long years, has been a trial injection for a pain pump. The doctor approved me for the pump, but he left the facility a few weeks later, before I could schedule surgery to have it put in. The new doctor did not deal with pumps. I was devastated, and went to a new pain clinic where the doctor wanted to immediately put in a spinal stem, without doing new imaging. When I disagreed with his plan of treatment, he became angry and started to storm out the door. He stopped and said he would do a ct myelogram. This is what showed that I have severe stenosis. The doctor put in my records that I am a sad, angry woman, simply because he did not like me personally. My follow up was with a nurse prctner who was really nice. He actually called me on a Saturday morning to tell me about the test because he was concerned about me having cauda equina syndrome after seeing the test result. He said I needed to have surgery for that before getting a spinal cord stem, proving that I was justified in disagreeing with the doctor. Unfortunately, he did not like working there, and returned to his former job. I cannot win. I finally found a neruosurgeon, in Atlnata, to do my back surgery for stenosis; however, the added chronic pain, from the vag. probing, has caused me to be in so much pain that I can barely move. I am afraid if I proceed with the surgery, before finding treatment and pain relief for the rectal/anal/genital pain, that I will return home from the surgery, and be in trouble because my pain clinic told me they do not prescribe more pain medicine, to anyone, than I am already getting. I take 50mcg of Fentanyl. I suppose this is a lot, but it doesn’t control even half of my pain. I truly live in so much pain that I am in tears most of the time. I wish my problem was drug addiction because I would rush to the nearest rehab center, that would be so much better than having all my problems. I need badly to see a doctor that deals with pudendal problems. I would never have thought, in a million years, that my severity of pain was possible, before the surgeon messed me up so badly. I can also not believe that the United States is so pathetic to target chronic pain patients, rather than the big drug dealers, just to make it look like they are dong something. I am sure good people run into bad doctors everyday, but if anyone has been through as much bias, from so many doctors, in addition to dealing with so much pain in so many different body parts, for eight long years, I would like to meet them. If I do not get help soon, I am going to be bedridden, but no one in the medical field seems to care. Jo in TN
I suffer from chronic pain. If you ever go back to Florida look up Dr. Frey & Dr. Daitch, their practice is called APMASS. Advanced Pain Management and Spine Specialists. They had me going from a pain index of 10 to a 2. Unfortunately I moved back to Michigan, only 1 pain management place in Traverse City an hour away that I’ve tried to get into since Sept. They say they don’t get the faxes from my Dr. A lie and never call back. I stay in bed all day, I wish they had euthanasia here, I’d be beating down their door.
Deb Rowe
hi joni , i went through 4 years of complete agony , from a doctor that told me i had hernia that i never had, cut through nerves in my pelvic area , 50 doctors later, 10 major operations , turned down for a morphine pump by 10 more doctors, i had a doctor that heard about me , contacted me through my son , did the trial and 10 days later put in the pump inside me , i woke up from the operation, the doctor standing by my bed side ,asked how i was filling, i thought i must be dreaming, when i learned i was awake i thought i had died and gone to heaven, any way here i am 8 years later, with my second pump put in me a year ago, they only last 7 years , even though i get it refilled every 3 m0nth with a needle it is well worth it, i take 5 mil of oxycode twice a day to give me about 90% pain relief , i read all of your letter , i suffered equal to you, but for less time, if you would like to contact me i will leave my info, when i am sure we have a private connection ,i will include my ph no, i moved to hawaii 8 years ago , and built a small resort with my miracle morphine pump along for the ride, p s i lived in bed for those 4 years with full nursing care, it was like being trapped in hell in my own skin , ring a bell.
Hello. I have been diagnosed with Joint Hypermobility Syndrome. Its hard to diagnose and only 1 out of 5,000 have it. Im a mom of two kids ones a toddler and the other a teen. I have shoulder and back pain every day. There are dayd its hard to get out of bed. My doctor tells me the only way she can keep me on my pain meds is if there is trama or I am for going some kind of therapy. I guess having my children and all the damage it did to my hip is not considerd trama. Needless to say the only physical therapy in my area does not take meda-cal. The only treatment for my condition is physical therapy and pain meds and I cant receive neither.
I am an alcoholic. I broke my back at age 22 and I’m 37 now. Was put on pain meds the day I broke my back. I used both alcohol and my meds for pain management. In 2004 I quit drinking. Recently I have been forced too taper off my meds, I went for the only avenue left for me, alcohol. They take me down 5 mg every 2 months it was more severe but I begged and threw a fit because that’s what I was left with. I see no future for my self. I am terrified for the day I have no access too my meds. This all started because of a doctor specializing in pain in my area got in trouble for a pill mill. I’ve never gone too this doctor. Only ever went to one doctor, yet I’m punished for it. There are so many laws like this passed by people who either don’t care or are just uneducated on the particular subject. I can’t stand it much longer. I feel like giving up and drinking myself into oblivion. Lawmakers never listen. They just pass laws that they are pressured into they think might make them look good. They rarely change them because that means admitting fault, so they stick too their original stance. I have no clue how to fix this or help myself beyond drinking because that’s legal. I was sober for 13 years. Thanks ignorant law makers, good job
I’M SORRY FOR WHAT YOU DEAL WITH DAILY. MY SON. GOES THRU THE SAME THING. MY SON IS 41 AND BROKE HIS BACK ALSO. HE GOES TO A PAIN CLINIC. HE HAS INJECTIONS THAT COST THOUSANDS EVERY 6 MONTHS FOR HIS BACK PAIN AND RESTLESS LEGS SYNDROME. HE HAS HAD SEVERAL OVER THE. LAST FEW YEARS. THE INJECTIONS DON’T HELP. HE IS DRINKING TO HELP WITH THE PAIN. I WORRY WHAT WILL HAPPEN. WITH THE PEOPLE WHO SUFFER DAILY FROM CHRONIC PAIN. WHY SHOULD THEY SUFFER BECAUSE SOMEONE ELSE ABUSES THE. PAIN MEDICATION. DO YOU NO OF A DR IN THE GREEN BAY AREA THAT WOULD BE HELPFUL? TIRED
DO OF SEEING HIM IN PAIN. ONLY 41 AND HELPLESS TO THE PAIN?
Hello,
I am in the same situation as many of you. I have extensive bone damage from an incurable cancer called Multiple Myeloma. It destroys bone integrity, and in my case I have lytic lesions in my iliac (pelvis), my backbone, my ribs, my sternum and skull. I am in remission after going thru a bone marrow transplant in 2014, however the damage in the bones is permanent. I have been prescribed oxycontin for pain, with Norco for breakthrough pain. Now the insurance is saying no Norco. I try to keep a good attitude toward all people, it is healthier to live loving as opposed to being bitter, however the temptation to wish these people would have to walk a mile in our shoes is almost overwhelming.
Blue Girl
I recently was diagnosed with Hepatitis C and Cirrhosis after an attack of Acute peritonitis, and underwent the Harvoni treatment after I healed from the emergency surgery. While I’ve suffered from low back pain since the age of 30, I’ve always used Chiropractors and Advil to survive the episodes of crippling low back and neck arthritis. However this has all changed since I was diagnosed with Cirrhosis . My current situation prohibits any non-steroidal anti-inflammatory drugs, as I am now prone to lethal bleeding and liver failure. This leaves me seeking other pain-relieving solutions which so far, have not worked. …And now they want to fuse my vertebrae, which more often than not -makes for more intense pain. Yet I am told I will not be able to have any opioid help, of which the only safe one is hydromorphone (dilaudid) which I will be refused by all means at the disposal of my HMO. I am now 66 years old and wish for the ‘end of life’ that I may go into Hospice, for a decent night’s sleep. I haven’t had one since July, 2016.
I am so sorry to hear about your condion. I myself am a person who has had 7 back surgerys and due to 2 failed surgerys at first.I do know as a pain patent also. I feel like you do to a certen degree. Pain is a very personel problem we face alone. And if you can have family surport and understanding it makes life a whole lot more easyer. And i hopw you do.i have a lot of pain also for 12 yrs i have been battling this war in my body. And i also know how you have to seek and find any happness in your life to want to keep fighting evenhelps with any nerve pain and burning of nerve pain. We live in a time where people are not going to be to understanding. And we have to be our own doctors to some degree.i am sixty and that also is not much help to us. Each road we take we have to chart out on our own plan of action.and stress keep it at bay. It also helps to keep pain down. Try to keep your mind busy and off of thinking about pain. I know pain like you know also. And never let your faiith down ok. I will try to keep in touch if it is possible. God bless you. And hope you can find peace. And you can do this belivie me.
Paul, I have no answers, only understanding and love to send and wanting that good sleep for you that you desperately need. Nona
14531 W Sunset Ave
Yeah it kind of the seconds me because I deal with it level of pain good I can only refer to your suicidal pain I live to go to a methadone clinic I tell them I’m an addict because I can’t get any help from anywhere else first of all I don’t have health insurance second off they just look at me and think I want to get high but it’s come up upon but five or six years now and I’m tired of being talked to like a junkie I’m tired of jumping through hoops because they think I’m a reckless human being they know they have me hooked and they think they can you please Dr money and self-esteem as they try to humiliate you and check every daughter you have they’re just struck me from 100 milligrams a day overnight to 20 milligrams all because I decided I wanted to speak out lady decided that I had to see the doctor in a week and she was put me on 20 milligrams in till 6 so I’m planning an escape where do I get help can I get help would I just be another statistic on the street most likely I grew up in some of the worst neighborhoods always drugs around but never was an addict now doctors what are scared to treat it drove me to buy illegal drugs I had a child when I was 15 I was home I said 13 live in the street life and never did I try drugs until I was hurt the bottom line is I’m just another number I’m just another very face they don’t care about me for my well-being I think it’s time for a change…..
for six years I have been able to function. Thanks to a Dr who weeded thru all the drug seekers when he started his new practice in our area. He said he had over a hundred individuals who came right away and within six months he had ten people truly in need. I asked for no pills, no more up and down and stomach upset. Low dosage fentynl and anti seizure. I have added tumeric in liquid form three times a day. I have a life!!!!!!! But I moved and Dr moved and it is not looking good. I think part of solution would be take away dentists ability to give hydrocodone etc to patients. Really a couple days of tooth pain given this drug, that is where I personally see and find friends having left over meds of these drugs…Dentists give this way to often for something temporary and excedrine could handle.
Tooth pain is high up as the most agonizing painful pain there is. Colleen you must have nerves of steel where your teeth are concerned. But what about your family members. Would it not bother you if they experienced the endless merciless tooth pain???
As for you and all the people exactly like you, i hope only tooth pain because any toothpain is horrific. I hope i am there beside you WHEN THEY DRILL ON YOU so I can toss you a handful of ibuprophen & SPRINKLE THEM ON your writhing body and say…. ssshhhhh, stop your fake tears. Ssssshhh take ibuprophen. No pain meds for any of your suffering. Awwe you want compassion or comfort?? Well, CHEW ON colleens letter –or– the enactment of the law that prevents providing pain meds for comfort.
I hope that you are being sarcastic in that comment that you made because while tooth pain is one of the worst pains, it is temporary. When you get a tooth pulled Maybe 3 days worth of Tylenol 3 and you should be set. And if you’re having that kind of issue with your teeth, then I’m guessing that could possibly be your fault for not taking care of them.
Please! Lets NOT start talking about FAULT because many people think that ADDICTION is a CHOSEN thing. Judging other’s pain is a huge mistake. If a person is in pain– THEY don’t have a little scale to tell them how much pain they are having..
IF you ARE and ADDICT pain is everyday! LIFE is painful. Life is humiliating because of the labels and the misunderstanding and the freaking ignorance… Addiction IS pain. IT is painful to be an addict and people who are ignorant of the truth believe that it is a party of some kind.
I would LOVE to give any one of THOSE People just ONE WEEK of the BEST of life that an addict has after the drugs stop working… AND.. THEY ALWAYS STOP WORKING!!!
Warren E. Justice BA, AA, CARPS, CADC, CCIMS, CAS
Vanessa wow all i can say is what a crule bitch u are. I will have u no some people are born with defects in there teeth and did you no and THIS IS GOING TO SHOCK YOU BUT SOME PEOPLE ARE POOR!! YAP CAN YOU BELIEVE IT ! THAY HAVE THE NURVE TO BE POOR AND THATS SO THERE FAULT YA YA WE ALL NO THAY WORK AT WAL-MART AND YES THERE INSURANCE IS MEDICAL WICH DOSE NOT PAY FOR FILLINGS, ROOT CANALS, CROWS,CAPS, ONLY ONE TEETH CLEANING A YEAR, AND NO PARSHALS!! ONLY PULLING OUT TEETH OR ALL YOUR TEETH FOR A FULL SET OF DENT. NOW ASK ME HOW I NO ALL THIS? WELL CUS I WORKED IN A DENTIST OFFICE !!I BET YOU DID NOT NO THAT DENTIST MAKE MORE MONEY THEN MOST PLASTIC SURGEON’S DO. AND BTW DENTIST ONLY GIVE FOR PAIN IF YOUR LUCKY FUNKY NORCOS WICH ARE 98%TYLENOL 2% IF THAT. CODINE. AND YOU CAN HAVE BEAUTYFUL TEETH GET PREGNANT AND LOSE THEM ALL FROM PIEREA OF THE TEETH AND GUMS .DAM SELFISH LAZY BABY HOW DARE THEM NOT PULL THERE WEIGHT NO PUN INTENDED. I HOPE YOU LOSE YOUR TEETH FEEL LIKE SHIT ARE TOO BROKE TO BUY INPLANTS WICH COST 2500 &UP EACH NOT INCLUDED WAS THE DENTIST OTHER OVE R THE TOP FEES.WITH NO TEETH YOU CANT GET A GOOD JOB OR A JOB ! EAT FOOD RIGHT,KISS ANY LOVE LIFE SELF RESPECT GOODBYE AND PEPOLE LIKE YOU WILL THINK YOU ARE A DRUG ADDICT LAZY DUMB.ECT….
HOW CAN PEPOLE THAT ARE IN PAIN GET TOGETHER TO SAY ENOUGH IS ENOUGH AND FIGHT FOR YOUR RIGHT NOT TO BE IN PAIN ITS NOT A FANCY FREE GIVE AWAY ITS YOUR DAM RIGHT NOT TO LIVE IN PAIN ! HELL YOUR NOT LIVEING YOUR BAIRLY EXISTING. ITS CRULE AND SETS AMERICA BACK TO THE DARKAGES. BTW MY VERY DEAR FRIEND KILLED HERSELF BECOUSE OF ALL THE PAIN SHE WAS GOING THROUGH WITH KIDNEY FAILURE AND A EVIL EX HUSBAND THAT ONLY LET HER SEE HER DAUGHTER ONCE A MONTH FOR A DAY IF REALLY LUCKY OVER NIGHT .CUS GEE SHE CANT BE A GOOD MOMMY IF SHE TOOK PAIN MEDS .I WATCHED MY DEAR FRIEND WITHER AWAY FROM PAIN AND LOSS OF BEING WITH HER LITTLE GIRL.AND I WILL BE DAMED IF A SNOTTY STUCKUP ASSHOLE LIKE YOU WILL REPERSENT ALL PEPOLE IN PAIN. MY FRIEND KILLED HER SELF BTW IT TOOK SOME TIME WE FOUND OUT CUS SHE HAD TO SLOWLY SAVE HER MEDS AND GAVE UP ON THAT AND HUNG HERSELF.
God Bless you, Sir. And all my sincere respect and gratitude for serving to protect my freedom and safety. There is a communication breakdown and some doctors have no compassion for us. I had been on Fentanyl patches, oxycodone and 20+ other meds for 8 years. I am terminally ill. On my last med eval appt my doctor refused to fill any of my meds. I submitted a clean urine test and he could give no reason. He has not examined me, done blood work, no physicals nothing in the past 4 years. I can’t cope. I attempted to take my life last night but was unsuccessful. I cant live like this. I will find another way. I dont like blood. Once again, best of luck, God Bless and thank you.
Lydia,
First of all, you did not actually read Colleen’s post correctly. She said she has to get pain meds by getting her left over pain meds given by dentist. She is in chronic pain and cannot get it, yet those w/tooth pain and I’m not saying tooth pain is not bad pain. What she is saying for a couple days of pain, a patient can easily get pain meds and like above dr. prescribes more days than needed. Why else would she be able to get their extra’s? some take the entire week or whatever….and that is difference between dealing w/acute pain and giving extra so dentist/dr. doesn’t have to bother w/possibly having to call in more in a couple of days. People tend to take more days than they need if they have it because it just plain out makes you feel better.
You obviously do not understand CHRONIC DEBILITATING PAIN EVERY MOMENT EVERY DAY
FOR YEARS. Pain comparable to excruciating nerve pain 50% of your day….plus a numerous other sources of pain. I understand what you are saying about needing a little something for tooth pain. It would be ok, however, it needs to not be given for cases that necessitate it.
I am not the one w/chronic pain in our family. I watch it every day. I also have a son who has basically lost all of his teeth, has had multiple abcess teeth etc. (yes, it is due to his negligence in taking care of his teeth) but he has gone to work many a time w/excruciating pain. I’m not saying that’s good either. If he took pain meds every time he had a tooth problem, he would not be able to work due to pain meds.
I have had to have dental work done w/o any anethesia and it sucks but I live w/someone w/ such chronic pain that it’s no comparison. I know it’s temporary and just like I learned before childbirth, we have the capability to psych ourselves out for short periods. I’m not saying that pain meds are not warranted for dental work. There is no reason a person who has had a cavity filled should need anything more than advil or the like. Have you ever had a dry root canal?
That does not seem like correct term I am using. That is something pain meds would be
warranted for.
You are really over exagerating-seriously-the endless merciless tooth pain?
Again, if the dentist, ob/gyn etc. didn’t promote pain meds as much as they have, then if you only have like one cavity and are not use to pain-maybe for 2 days-but not a freakin week
Pain meds when given for even a short period too long can become addictive. When you use them even one day past when relieving pain warranted for such an addictive drug to be used only for extreme pain.
Unless you really want to suffer… for your sake(to help prevent any remote cause for addiction) and for those that have had to already withstand withdrawal from pain meds because of being prescribed a week of pain meds when 2 days would suffice, do not understand how pain meds work.
I can’t even pronounce or spell all of the conditions my 40 yr old daughter has and has had since birth. She has had several brain surgeries, extreme nerve damage (yes, I’m talking same pain as when dentist hits a nerve that is not numbed) constantly. Yet, she wishes
she could use marijuana rather than pain meds. She wishes she could go even one day w/o severe pain (even taking pain meds)
Pain medication is all she can use and it really does not even touch the nerve pain, it only helps other pain she has. however, she feels like a horrible person because of the stigma on pain medication. For her to be in the car at all is excruciating. Yet, we have to drive 45 min to a dr. who will give her any pain medication. She has to go in every 2 months which doesn’t sound like a big deal but it is to her. She is miserable. We all dread apt. day.
Please in future….don’t criticize someone til first you read correctly what person is saying and second….well, be careful who you criticize because often times you end up eating your words because you may end up suffering from similar pain in some way as chronic pain sufferers do.
I’ve learned my lesson on that. I’ve had more than my share of pain so feel bad even comments about your tooth pain or family members.
I guess also it is easier for me to deal w/tooth pain because of the attitude I adopted like I said before child birth. Keep calm, focused, I think about anything other than procedure being done. I am 65 yrs old and had my first child at age 20 so it was when you just went through labor and delivery w/o anything to help pain. I only had shot to numb localized pain where they cut me for more room during delivery. I am not some super woman. I just have learned there sometimes are different ways to get through acute pain.
I pray chronic pain is something you never have to endure or witness. Life long life long every second of every day can’t sleep, can’t get comfortable, causes extreme depression, affects the entire family the rest of their lives too pain. Not a couple days of tooth pain. I understand what you are saying too tho…I hated seeing my kids get immunizations and I hate seeing my great grand daughter get them now. I hated seeing my granddaughter have to go thru a broken arm at 4 yrs old
Love how you put that… I have had chronic pain for 23 year’s from a botched gallbladder surgery. I am on high dose of fentanyl, am going to have a stimulator implanted, praying it works. No one can understand what we go through every second of the day, unrelenting pain. I’m sick of Drs thinking we r addicts, and I get fighting mad when junkies r the reason we can’t get our meds we need to even keep breathing!!!! It should never get u high, just releaves enough to knock the edge off the pain… I m sorry but I feel like they need to focus on herion user, if you’re going to do that to your body u deserve what u get. You have a choice not to take, we chronic pain patients do not!!!!
Please do not get a pain PUMP. You will be adding poblems then you have now ok. Try everybthijg first. And read up on all of this first ok please for your own sake.
Gee thank you for your words ……. NOT! AWWWW DONT YOU FOKES JUST LOVE THE PAIN POLICE. THAY ARE PEPOLE THAT HAVE NOT IDEAL WHAT TF THAY ARE TALKING ABOUT BUT THAY ARE GOING TO POLICE YOUR EVERY MOVE. GEE THIS REMINDS ME OF A HISTORY LESSON AMERICA WENT THROUGH IN THE 20’S WHEN A BUNCH OF DOGOODER NOSY GLADIS CRAVITS GOT TOGETHER AND MADE BOOTLEGGING AND HELP PUT THE MOB TOGETHER IN AMERICA !HELL ITS EVEN GIVEN US NASCAR FROM THE BOOTLEGGING CUS THE CARS HAD TO BE FAST .AND IT HELP JOE KENNYADIE IN POWER .AL CAPONE PRETTY BOY FLOYED. BABY FACE NELSON. AND GAVE US SAINT VALLENTINES DAY MASSACRE. GLADDIS GO BACK TO YOUR SEWING AND LET US IN PAIN HANDEL ARE LIFES. THAY MAY NOT BE MUCH TO YOU BUT THAY BELONG TO US …….NOW BEAT IT…
try putting a dab of clove oil on the pain with a q tip; don’t use a lot. clove oil is very powerful but has been used forever for dental pain. consult with the pharmacist if you have a good one. you will find clove oil in the drugstore and maybe in the grocery store.
OK SHE WILL USE THE CLOVE OIL AND WHEN YOU OR THE ONE YOU LOVE IS IN SUPER BAD PAIN. JUST PUT A DAB OF TYLENOL ON IT …….G.T.F.O.H.
Colleen, the DEA for years have a system to where they can monitor a Dentist that gives out too many opiods like Percocet or Vicodine, especially a General Dentist. Any situation as far as Dentistry goes to where a patient is in excruciating pain, usually because the patient has a very bad infection which if left untreated can cause an abscess. When a person has an abscess a dentist will lance and drain the abscess and give the patient a course of antibiotics and just enough pain medication to help with the pain and then when the full course of antibiotics is finished the patient will go back to the general dentist or the specialist to either get the tooth pulled or get a root canal. Your just mad because you can’t get your “low dose fentanyl” any more. My advise to you is to go to your nearest pharmacy and buy some Excedrine instead of picking on Dentists!!
Dentists need to be careful about prescriptions, but I have failed back syndrome and cancer pain. Dental pain can be worse. My dentist gave me 10 5/325 hydrocodone/APAP after my root canal. It was inadequate, but kept me from going insane from the pain. We don’t need more restrictions, we need more individual treatment and to spread knowledge about harm reduction.
Steve, For future dental procedures, NSAIDs are generally more effective than opioids because most of the pain is inflammatory. As long as there are no medical contraindications, my experience is that certain selective NSAIDs that have less risk of bleeding are often the best option after root canals and extractions. Examples include celecoxib, meloxicam, oecetodolac.
Yes I hurt my back 5 years ago am being persribed Percocets for pain and even though I’ve spoke to my doctor several times that still in slot of pain they will not up the dosage I’m currently taking 30 MGS a day total and have turned to marijuana to help with pain together it helps.
Hello, I am looking for fellow opiate addicts/dual diagnosis patients who continue to struggle in society whether it comes to a stigma related to your addiction, mental health past incarcerations, ETC.
Here is some background on me. As a child, I was diagnosed with ADHD very early on & I had a very precocious desire to ingest anything mind-altering. After my affair with LSD, mushrooms and other “mind -opening” drugs which I considered to be a happy and consciousness-expanding time in my life. Everything changed the day I tried heroin, as a sophomore in high school. I’m going to skip ahead to say that in over 20 years of struggling with this addiction(including being an incredibly functional methadone patient for 14 years on & off) I’ve been to many treatment centers all over the world and have also tried many psych-med cocktails as well as had a brief dalliance with suboxone. I REALLY want to get back into my field of work(Theater) and its been over 10 years since I have actively worked, I am on probation and I have NO idea where to even BEGIN looking for RESOURCES LOCALLY! If anyone is interested in joining a BLOG to provide resources to and from other addicts, please contact me @ solangelsands@yahoo.com
Dr Judin,
I have spent 22 years in Law Enforcement. In 1997 I was hired by the 16th largest Police Department in the Country. In 2002 I injured my lumbar spine in the line of Duty. I started with Chiropractic care, then physical therapy while continuing to work the inner City streets, dealing with violent gangs and criminals. 6 months after the initial injury I had to end up having surgery, L4 L5 S1 laminectomy. I returned to work in a cruiser less than 3 months post op. A few months later I tore my right rotator cuff in my shoulder with severe labrum damage, I underwent shoulder surgery in 2003, off work for a few months and the returned to regular duty in a cruiser. 3 years later I fractured C-3 C-4 in my cervical spine, I underwent a cervical surgery- fusion with cadaver bone @ C3-4-5, returned to regular duty 3 months post operation. 3 months after returning a vehicle hit our cruiser head on while respondeding to a shooting, this impact caused severe damage to my cervical spine, breaking my neck in several places. In 2008 I underwent another cervical surgery procedure that entailed a fusion with fixation procedure involving C-2 to C-7, 2 6″ titanium rods were surgically installed in my neck, one on each side, all the back side vertebrae bone was removed to allow proper implimintation to protect my spinal cord. Due to continued wear and tear to my lumbar spine, I had to undergo another lumbar surgery, same as my last cervical fusion with fixation procedure wher I had 2 more 6″ titanium rods installed from L-1 to L-5 S-1. Needless to say that I have been on some form of pain medication since early 2002, over the years Dr’s, (including Pain Management Specialists) so by 2011 I was on a pretty strong pain reliever, 30 mg Oxeycodone IR, with promising relief to a lot of my pain, then another surgery, dose was increased and I even agreed to have a spinal cord stimulator installed in my lumbar spine. Needless to say, Dr’s forced me to retire from my Profession, the only profession that I have ever known. The stimulator failed, still in my body, BWC refuses to remove it. Long story short, with all the media stories on heroine overdoses in Ohio, the Dr.’s cut my medicine completely off this year. So now with severe pain and suffering, my Wife was diagnosed with Cancer Sept of 2014, after Chemo and Radiation, a surgery in 2015 to remove half of her liver because of the Cancer metastasis, now she is Stage IV with no other medical options available. I am taking care of her and trying to function while in severe, constant pain with no medicine for relief. I am at my wits end, Dr’s are afraid to prescribe the opropreate medications for my pain, which makes it extremely difficult to function on a daily basis as well as trying to take care of my wife. Please any advice. Guidance and/or reccomendations will be greatly appreciated thank you for your time and consideration.
I am a breast cancer survivor. I did chemo and eventually had a bilateral mastectomy. The severe pain has never subsided after surgery. I’m 38 years old and I’m just waiting to die without having to carry out a “selfish” act so I can finally be out of pain. The medical industry is so hostile toward people in chronic pain that I don’t seek treatment for pain anymore. I don’t even try to get the 1200mgs of gabapentin I need to control the nerve damage pain. I had to have my husband hide our firearm because I fantasize every day about walking into our bedroom or out into the front yard and putting a 9mm round in my temple. I didn’t want my life prolonged just to spend each day thereafter in so much pain, wishing for death. I should have kept the cancer, enjoyed whatever time was left, and died sooner. I cannot enjoy my life in this condition. I made a huge mistake trusting those oncologists.
Marilyn,
Oh my word. I was diagnosed with breast cancer at 35, in 2015. Bilateral Mastectomies, no chemo or rads. Just pain every single day since. Every day. I looked forward to surgeries so I would be under and momentarily out of pain. I havrnt found anyone with a story close to mine. I wouldn’t hurt myself…3 young kids, etc. But, I hear you. Wanted to tell you that. I have thought about the cancer being a better than my quality of life now as well. Just started Nucynta…it’s already breaking thru and leaving me with pain. Anyways, I’m here and I truly, deeply sympathize.
Thank you for sharing your experience with breast cancer and the surgery you had to tolerate from the nonsensical oncologists. I really NEEDED to hear from a REAL PATIENT on the subject, as I have a huge limb in my right breast. I have not goNE forward even on a biopsy for several reasons. I did have a sonogram and exam by OBGYN, who said it’s rounded edges might not necessarily mean cancer….even though at 65 years old I run a bigger risk of cancer. But the MAIN REASON I have NOT PURSUED jumping into the BIG MONEY MAKING CANCER INDUSTY is that I am already SUFFERING SUCH SEVERE INTRACTABLE CHRONIC PAIN in both my back and legs from having fallen for the FALSE ADVERTISING of Manufacturers of ADR- ARTIFICIAL DISC REPLACEMENTS. I made the MISTAKE of allowing two to be put into my LUMBAR BACK in 2005. The FDA NEVER Passed it for 2 levels in the LOW back. But STUDIES done AFTER THE FDA ALLOWED THE BIG MONEY MANUFACTURERS TO CONDUCT TOTALLY UNETHICAL TRIALS to Evaluate their products did NOT come to light until AFTER the FDA PASSED their Faulty Products. It is hard to believe that the FDA DID “NOT” REQUIRE WHETHER OR NOT THEIR PRODUCT REDUCED ANY PAIN for the Patients as part of the CRITERIA OF THEIR STUDIES. Why on Earth would Anyone go through with back surgery if they were not in PAIN. The ELIMINATION OF PAIN or for GODS SAKE at least LESSENING OF THE PAIN SHOULD BE THE ONLY REASON besides function for the Surgery.
Not only that the FDA ALLOWED the Doctors Conducting the Trials to INVEST IN THE PRODUCT THEY WERE TESTING…which could Only Result in UNETHICAL RESULTS. We DEPEND ON THE FDA TO PROTECT US FROM MEDICAL PRODUCTS THAT CAN HARM US…BUT THE FDA DID NOT PROTECT ANYONE BUT THE BIG MONEY PHARMACEUTICAL MEDICAL MANUFACTURING COMPANIES. THERE NEEDS TO BE AN AGENCY OR FOUNDATION SET UP TO OVERSEE THE MEDICAL INDUSTRY, THAT ANSWERS “ONLY”to patients to insure that the FDA IS FUNCTIONING TO PROTECT AMERICAN CITIZENS INSTEAD OF AIDING AND ABETTING BIG CORPORATIONS IN MAKING BILLIONS OF DOLLARS WHILE PATIENTS, AMERICAN CITIZENS LIVES ARE PUT IN JEAPARDY.. To ad insult to injury the FDA STUDY ONLY PERMITTED THE NEW ADR TO BE TESTED AGAINST A CERTAIN TYPE OF FUSION THAT HAD BEEN ABANDONED A DECADE EARLIER, BY SURGEONS FOR ITS HIGH FAILURE RATE. NOT ONLY WAS THE STUDY COMPLETELY UNFAIR, NOT ONLY DID IT PROVE NOTHING BUT THE FDA… DID NOT REQUIRE THAT THE SIZE OF THE IMPLANT BE APPROPRIATE FOR THE PATIENTS. …IT BECAME KNOWN LATER THAT THE IMPLANTS WERE MADE TOO LARGE FOR PETITE PEOPLE ( you might be OK if you were 6 feet tall…but at 5’2” tall..I ended up with my Surgeon Forcing Large Implants into my Small Spine…which ended up implanted CROOKEDLY. I ended up with scoliosis above the implant and two to 3 inches shorter in height.
I ALSO WOUND UP WITH CHRONIC INTRACTABLE PAIN THAT EVENTUALLY LED TO MY FACET JOINTS DEGENETATING. SUBSEQUENT STUDIES DONE A FEW YEARS AFTER FDA APPROVAL PROVED THAT THE ARTIFICIAL DISCS DID “NOT” RESTORE NORMAL MOTION TO THE SPINE…EVEN THOUGH THE MEDICAL MANUFACTURER GUARANTEED IT DID. INSTEAD THE HYPER MOBILE MOVEMENT CAUSED FACET JOINTS TO FAIL IN PATIENTS. AND INDEED A RECENT CT SCAN REVEALED ALMOST EVERY FACET JOINT IN MY LOW BACK IS INDEED EITHER FAILED OR FAILING SINCE THE SURGERY..
THE PAIN GOT SO MUCH WORSE I COULD NOT LIFT MORE THAN A POUND OR TWO OR STAND OR WALK FOR MORE THAN A FEW MINUTE…NO MATTER HOW MANY PAIN MEDA I TOOK.
ADDITIONALLY I DEVELOPED A NEUROPATHY IN MY LEGS OF BURNING PAIN CALLED RSD/CRPS ( FIRST MY LEGS WERE RED &,SWOLLEN..NOW THEIR ICE COLD BUT WEATHER THEY ARE HOT OR COLD MY SKIN FEELS LIKE IT IS ALWAYS BURNING AS IF ON FIRE.
NEEDLESS TO SAY I HAVE BEEN ON PAIN MEDICATIONS FOR MANY YEARS…I WISH I WAS NOT ADDICTED TO THEM .. I HAVE HAD TO TRY EVERY TYPE OF MEDICATION AND HAVE BEEN TREATED LIKE ABSOLUTE CRAP BY PEOPLE WHO HAVE NO IDEA HOW BAD PAIN CAN BE. ONCE WHEN I COULD NOT GET MY MEDICATION…and got a very bad reaction to a pill I was given that takes all narcotic medication out of your body withing a few seconds I went into such horrible relentless wrenching to vomit without anything in me that that I had to be taken to ER in ambulance & driver treated me as if I was a plain drug addict, yelled at me & told me I was going to a hospital where people are “REALLY SICK” unlike his PREJUDICE OPINION of anyone taking a narcotic medication. I almost died in the ER as well, because my blood tests showed my potassium level had dropped so low I could have had a HEAR ERTHMIA HEART ATTACK & DIED & THE ER STAFF DID NOT GIVE ME THE IV POTASSIUM I NEEDED & ALLOWED ME TO WRENCH IN PAIN FOR HRS WHILE THEY LAUGHED AT ME. THAT IS HOW BAD THE STIGMA IS, ( of course I was in a bad area at the time and years earlier when I tried to withdraw on my own from the medication, I had been treated appropriately in that ER), but even so they should have given me something to stop the wrenching as I was within a tenth of one percent of having a heart attack erythema from low potassium which the wrenching could easily have set off).
. PRIOR TO MY PAIN PROBLEM I ADMIT I COULD NOT UNDERSTAND HOW UMBEARABLE IT COULD BE. THE ONLY WAY ANYONE CAN TRULY UNDERSTAND IS TO EXPERIENCE IT THEMSELVES. I WOULD NOT WISH IT ON ANYONE…or so I thought, but after all I have been through and all the pain I continue to suffer relentlessly I think that is the ONLY WAY THOSE WHO TREAT PEOPLE SUFFERING WITH PAIN BADLY, THOSE THAT ARE SO GREEDY THEY DISREGUARD THE PAIN OF OTHERS FOR THEIR OWN PROFIT COULD ONLY LEARN FROM EXPERIENCING IT THEMSELVES ENOUGH TO EMPATHISE. I AM HOPEFUL THAT THE MEDICAL MARIJUANA MIGHT HELP MY DEPRESSION & PAIN ENOUGH TO BE ABLE TO GET OFF THE OTHER PAIN MEDICATION & THE SURGERY THE XT SCAN SAYS I NEED. BUT THE PAIN HAD SPIRALED SO OUT OF CONTROL THAT MORE ENTRUSIONS SCARE ME..I FONT WANT MORE PAIN IN AN ATTEMPT TO GET RID OF thevpain I ALREADY Have. AS for CANCER TREATMENTS I BELIEVE THAT THE MEGABILLION DOLLAR MEDICAL INDUSTRY TRY TO COVER UP THE NEWEST DISCOVERIES IF NEW WAYS OF TREATING CANCER FAILS TO USE THEIR PRODUCTS IN NEW POSSIBLE CANCER CURES AS WELL. IT IS TIME FOR A REVOLT OF US ORDINARY CITITZENS. WE NEED TO INSIST THEY STOP THE GREED AS A REASON FOR THEIR TREATMENTS AND FOR THE MEDICAL INDUSTRY TO REGAIN THE ALTRUISTIC MOTIVATION THEY PRETEND TO EMBRACE FOR REAL. (EXAMPLE I SAW ON HBO VICE SHOW LAST YEAR THAT A CANCER RESEARCHER HAD MANIPULATED VIRUSES TO ATTACK ONLY CANCER CELLS & SUCCESSES IN BRAIN TUMORS, EVEN LEUKEMIA ETC. WHY IS IT THAT WE ARE NOT HEARING ABOUT THIS ANYMORE, WHY HAD HIS FUNDING BEEN CUT. WHY IS IT THAT RESEARCHERS IN SPAIN HAVE PROVEN THROUGH PROPER STUDIES THAT CANNIBAL CURED CANCER..BUT THAT IS HUSHED UP HERE AS WELL. OBVIOUSLY if cures are found that do NOT CONTINUE TO MAKE BILLIONS FOR THE MEDICAL INDUSTRY IT WILL NOT BE ALLOWED…THE SAME GOES FOR THE ENERGY INDUSTRY !!! Eventually they may wake up & stop the psychopathic behavior & embrace empathy for their fellow human beings!!!
“hostile” is right when speaking of medical providers and patients with chronic pain! It’s ridiculous. In the beginning of my chronic pain odyssey, I only went to see my PCP for the first time about it because I had called a medical supply store about a posture brace and found out insurance would cover one if I had an RX. The doc refused to give me an RX. For a BRACE. Turns out, I have ehlers-danlos syndrome, and bracing is critical for keeping joints in place in order to manage my condition. Chronic dislocations will mess you up (and are painful). Anyways, why wouldn’t you prescribe someone a brace? What harm is there? The beginning of a dangerous medical supply addiction? I don’t even mean to joke about it…but really, I can’t think of any possible, serious explanation. Other than her wanting to shut things down right then and there because she heard me mention “pain.” She told me to do aerobics and sent me on my way. One of my friends with ehlers-danlos had a pcp who, out of the clear blue, decided to not to prescribe her pain meds anymore. She’d managed a daily low-dose opiod regime for years. Not to mention, SHE’D HAD BRAIN AND SPINE surgery the previous month.
I’m sorry you are having so much pain. I too am exhausted on all levels by my pain. I pray for death nightly so that I can b out of pain. I’m not suicidal, I have so many things I want to do but Know I never will. I totally understand what you’re saying…God bless you and I pray someone will listen to us.
I did not read a lot of the stories on here, not because I didn’t want to or have the time, it’s because it gets me down. When I see the way people write, the descriptions they use, i know they are feeling similar pain to mine. There is the saying that you wouldn’t wish this on your worst enemy, but if I truly wanted someone to suffer, I would give them this. It slowly breaks you, every day, you have a constant fight within yourself wondering how much more you can take.
I am 30 years old and have had 2 spinal fusions, I had a Neurostimulator put in, it then got infected and I got Meningitis so it was all removed, and now I am stuck with an even higher level of debilitating pain where my medication is no longer adequate.I hate so many things about this pain. Especially the fact that I had dealt with lower back pain since I was around 19 then when I finally had it scanned when I was around 27, it was too late, and the Neurosurgeons believed a fusion of L5/S1 would help stabilise it and hopefully decrease the pain. Little did I know how much worse it could get.
Not knowing when it will end it was also slowly kills you. I always think to myself it could be worse, and I know it could be, there are people so much worse out there, but this is invisible, and I look fine on the outside, but inside I am slowly dying. I can’t function in a normal environment. I hope that the people above have the strength to continue. One day at a time. I had to give up everything I used to do and cannot work at all, I cannot be in a relationship and I’m not sure what my purpose is. But I have to find one. I will be having 1, or possibly 2 operations next year and whatever I am left with after that I will have to deal with.
Good luck to everyone and I hope you continue to find a new strength within yourself everyday and surround yourself with people who at least try to help.
During each of my operations I have had complications where I was temporarily paralysed, once from the waist down and the next was my whole body. During that one there was about 6 doctors and nurses around me as well as my parents. During this time my heart beat was racing and my temperature was continuing to go up and my body was shaking uncontrollably, my eyes were slowly closing and I believed I was one blink away from dying. During this time I said goodbye to my parents and thanked them for everything they had done and begged the doctors to bring me back if I went. I truly believed my eyes were not going to open ever again. That moment was the saddest moment in my life and is just one of the moments that makes me want to beat this. I have been to pain levels I cannot even describe. I think about it every day. I thought I would share just this one story to see if anyone can relate to the trauma that pain causes every single day.
Hi I can totally relate to you, Nor only you suffer with pain, but the SIDE effects, like rashes, insomnia, Then u get scared and start reading about liver issues, wow to carry on look back how you are a survivor despite the Dr. And specialist, Times u take meds u feel a lot better, but body does change and do will the effects of any meds, Which I’m going through that fun ride now. At first norco worked great for yes. Then I get rashes, no sleep this is day 4, No one ever touched on the whole aura of chronic pain, You need a spine of steel to survive it all. The opinions of others are my very least concern. Stand tall and talk back. Persevere u owe it to your life quality.
I had promised that I would write & put my first nightmare of a story here a long time ago. Finally here it is.
I had endometriosis & andenomyosis, had it for years, since I was a teen, but was being told I just had ‘bad periods’. I always had to lighten my workload for a week to ten days out of the month from my early 20’s & it progressed to where I was lucky to have 3 decent days a month.
I had been going to a woman Nurse practitioner, thinking it best as a woman would understand, WRONG. I had been going to her since I was 20. Every single month I complained to her about my menses. Every. Single. Month.
She prescribed Naproxen.
She finally, after years, referred me to Boston where another woman doctor gave me four 5 mg percocet for 30 days, yes you read that right, four pain pill doses for 30 days worth. Even her nurse was appalled & apologized, I left Boston in tears.
The two women doctors had decided there was no way possible that I had Endometriosis.
I finally begged another Dr in my small town to see me. He knew, as he said, he could tell I had endo just by hearing my description & seeing me. He gave me an adequate amount of medicine for the pain (first time ever) & told me to schedule an appointment with the doctor I had been seeing, the woman, to get a shot of Depo-Provera as the cost there was a sliding scale. He said the Depo-Provera would help shrink the tissue & maybe help me feel a little better but the main reason was to help him see during surgery.
He only took me on because he felt so bad for me as he was soon retiring.
I went as instructed to get the shot of deep-provera. When she gave me the shot she jabbed the needle in my arm & said ‘I doubt very seriously that you have endometriosis!’ with such an attitude that I left in tears at her treatment of me.
I reported what happened to the new doctor. Well this was enough for him to write both doctors, the one I had been seeing for so long & the so called specialist in Boston a very scathing letter (which I was only able to read after getting my records).
He really told them both off in a very professional way. He said they had been torturing me by giving me a paltry amount of pain medicine & how unprofessional they had treated me, how he was appalled that they were calling themselves professionals in health care, & on & on. It really felt good to read that letter later. It was also discovered that both women ‘didn’t believe in pain medications’.
The first surgery was scheduled for diagnose purposes only. I ended up being in surgery for 3 ½ hours, originally only to be an hour & a half.
He released my left ovary from the pelvic side wall & cleaned up what he could. He told me I had three choices, to have a complete hysterectomy or go on extreme hormone therapy or do nothing, which he mentioned really wasn’t much of a choice.
After a few days of being miserable I scheduled the surgery for a hysterectomy, I was only 34, this was 1998. It was ten days after the diagnoses surgery. He found so much endometriosis, on the ureters to bladder, bowel, my left ovary was stretched to 6 inches & had adhered to the pelvic side wall again, endo was just everywhere. I also had Andenomyosis, my uterus was 6 ½ pounds. It was an 8+ hour surgery. He decided to leave my right ovary as it was healthy, & my cervix. He didn’t want me to go into ‘surgical menopause’. He also made sure to send both those women my surgery reports.
As good of a job as he did, my pain started coming back full force within a mere two months. I went to see him again but he was just days from retiring. He said I was only his second patient that had pain after surgery in close to 40 years.
When looking for a new doctor I was not believed by so many, or they would jump at the chance to do another surgery. I was told to remember they are running a business & to be careful in my selection of a surgeon.
It just didn’t ’feel right’ to schedule with many of them.
In the meantime I had found a new primary care doctor because there was no way I was going back to the woman that had treated me so badly. The new PC prescribed me just enough pain medicine so I didn’t pull my hair out but it barely touched the pain enough to do anything other than stay as sedentary as possible. I had to crawl around the house so as not put any pressure on my abdomen.
I finally found one in Boston, almost two hours away. He prescribed what he said was a ‘’new percocet’ that was time released. It was 20mg oxycontin, 2 times per day plus 6 instant release percocet 5mg. He was a busy doctor so my surgery was scheduled ten weeks later according to his schedule, it would be 8 months after the last surgery & 1999. This doctor too found endometriosis everywhere previously mentioned. My right ovary was already destroyed in that short time & my cervix was pre cancerous.
He had a bowel surgeon there as well. They did the ‘ bowel bath’ to check for endo there as well & found a lot. I was in surgery for another 9+ hours.
So, three surgeries in an eight month period. I thought all would be well & I would no longer have to deal with debilitating pain. Boy oh boy was I wrong.
I knew pretty much right away that he didn’t get all the Endo. I continued to see the Primary care doctor. Thankfully she did believe me & continued to prescribe the same medications until I found yet another new surgeon because this one too was retiring. *sigh*
I did so much research that I knew more than many doctors I had been scheduling to see. It was time that I ‘interviewed’ them. I had come to the realization that many women with endometriosis & andenomyosis had had up to 28 surgeries!
There was no way I wanted to go through that. So, I was diligent in finding the right doctor. It took me just shy of two & a half years. I went to so many doctors, dozens. Many said i was pill seeking, many said it was impossible for me to have any pain at all because I had had a full hysterectomy. I can not express how frustrating & depressing & not to mention how painful this was, for two & a half YEARS! I was also back to crawling around the house despite the medications I was being given.
My life was reduced to a sofa, a bed & very little else.
I finally found the right doctor, one of my statements when ‘interviewing’ a new doctor was- ‘I can tell the difference between endo & adhesions’, many doctors said that was impossible, some even rolled their eyes at me. I can assure you I definitely could tell the difference, in fact I still can. When this one doctor replied ”well, of course you can’’ to my statement, I knew I had found ‘the one’. He was (now retired too) the leading endo expert in the world. That surgery revealed 12 out of 13 samples positive for endo, adhesions everywhere. He had to cut through scar tissue & found a 2’’x1’’x3’’ piece of Endo that he said must have been there since I was a teen, in the cul-de-sac area. I had another ‘bowel bath’ which discovered more endo. So many other things that I just can’t describe & an endo specialist for 35 years had never seen. I am extremely lucky I do not have a colostomy bag, among other issues. They use my surgery recording for teaching purposes now.
While recovering it was discovered that I had popped some internal stitches which required silver nitrate treatments.
I told my PC that as soon as the silver nitrate treatments were finished that I was ready to detox off the pain medications. Bad idea.
About 8 weeks after surgery though, despite feeling better in my abdomen area I was experiencing a lot of new, different pain. I had gone to the Emergency department & my Primary but she was on vacation. I had some kind of bite mark/rash on the back of my right knee, oblong. I felt awful & achy all over & had the worst headache I had ever had in my life. I had said if I had had a gun I would have shot myself.
When my Primary care doctor came back from vacation, now this had been going on for at least ten weeks at this point, she did not believe that I could possibly have so much pain & made me sign a pain contract. I was again being treated with malice, plain olé malice, & disbelief.
I kept complaining though, as I felt like death. Finally she ordered a blood test when I could not bend my head an eighth of an inch, which was another 4 weeks later.
One day there was a message on my answering machine to come to the doctor ASAP as it was extremely important. I had to get a ride but got there just before closing. She said ‘’It’s no wonder why you’ve been feeling so bad & healing so slow from your surgery, you have Lyme disease’’. I suppose that was as close to an apology that I was going to get. The numbers were so high that she said she couldn’t believe I was walking, well that was barely walking. It took me 4 rounds of antibiotics, 3 months each, & over a year to start feeling better.
I found out later (after getting my records that they wanted to hospitalize me for IV antibiotics but because I didn’t have insurance they did not, just wow, thanks *sarcasm*).
I was finally ready to detox off all pain medications & did it in six weeks. I had no desire for them once I started feeling human again.
I was pain free for almost a decade, until I got CRPS/RSD. That nightmare is here as well, down the page.
Many thanks for what you do to help so many patients Dr Fudin.
Carole
I forgot to mention that I have to be very careful to not eat any soy products, or anything that helps produce estrogen in the body. I know fairly quickly if I have because I still have adhesions & a small amount of endo on the left side. It certainly is what I consider ‘nothing’ because the pain that is caused is merely a nuisance. I am aware of it though, especially if some kind of estrogen is consumed. I can not ever have Hormone replacement because of this, at least that is my understanding. Every time my hormones are checked they are within range.
When that nightmare ended, I thought I was home free. I had a new appreciation for life. It felt really good to be able to stretch in the morning, still does. Even though I now have CRPS/RSD I still strive for appreciation in life. Having medications for the pain allow that to happen, otherwise I would once again be living on a sofa & in bed. I would rather die than to allow that to ever happen again. Thankfully I do get my medications now. It is not easy but the end result is that I get them. I still worry but worrying is useless so I try my best not to.
Anything can happen to anyone at anytime. Having access to important quality of life pain medications is a necessity that many groups like PROP, DEA, SOME doctors, & many of the ‘Powers That Be’ just do not understand at this time in history. Unfortunately WE are all living ‘it’.
I am hopeful that with more stories, & more understanding, things will soon change & pain will be treated with kindness in understanding & easily accessible to those who need & require it for a life that they can enjoy because the pain is being treated & sits towards the back of the mind instead of consuming their mind.
Again, many Thanks Dr Fudin for everything you do in helping the thousands upon thousands of patients that are not being heard.
My name is Gayle, I am a 48 year old Grandmother, have worked my entire life. Mostly in retail management, my last job(@a large beverage co.), ended when I threw out 3 discs in my upper back. I saw several doctors, had numerous treatments and tests. All trying to just get better so I could do my job! After three months of working with the pain as it continued to get worse I was told to go on a medical leave until I could get better. After many treatments and combinations of medicine I was told that the herniated disc at T-6 was pressing on my spinal cord & would eventually cause paralysis & I would be in a wheel chair without the surgery to fix it. After getting a few more opinions, my husband & I decided to try the risky surgery. The surgery didn’t go well, they took a part of my rib to fuse the vertebrae together but it didn’t work. Now I have scar tissue that causes severe muscle spasms on top of the chronic back pain that only got worse after surgery! I take Soma for the spasms, 5 a day though the dr can only give me 4 a day. I suffer with that every month when I run out, a spasm will send me right to the floor in pain, it temporarily paralysis my left side! I used to take 8 oxycotin a day (15m), Gabapentin, mobic, & the Soma (also prescribed 40m oxytocin to help me sleep but rarely took those, too strong). Now I take 6 percocets a day with the soma, mobic, & Gabapentin. Not enough to ever be completely pain free anymore! I hate being limited! 2 years ago I had a stimulator implant to help with the pain, it does! It got me out of bed, For around 4 to 6 hours a day I can get up to do a few things around the house. I have to pay someone to clean for me. My insurance ran out a year after I went on leave so my husband(then fiancé) went to the courthouse & got married. So I would be covered on his insurance. It took 2 years for social security to get me a hearing, but I am now permanently disabled! Throughout this whole mess I have had numerous bad experiences with pharmacists! I had been going to Target, they stopped carrying my meds, switched to Walgreens but they told me that my doctor was on a list and they couldn’t fill for him. CVS by my house the female pharmacist looked at my scripts put them on the counter face down and walked away. She didn’t utter one word! I felt like I wasn’t even human! I left there crying! I even switched my meds a few times to try to have something they would fill without giving me a hard time! But that doesn’t matter, they judge you on appearances and I don’t look sick! I wore a back brace for two years but was able to stop wearing it when I got the stimulator. I wear it to the pharmacy sometimes so they will sympathize with me! It’s a shame that I have to look disabled to get the pharmacy to fill prescriptions that my doctor writes me! I didn’t ask for this life, it is no way to live! I have pain 24 hours a day, 7 days a week! Whoever put these restrictions on our meds has taken our quality of life! I understand that there are bad people out there that abuse these prescriptions but what about the ones who need them and don’t abuse them? Where are our rights? Who speaks for us? They didn’t take drugs out of the hands of addicts! They just limited the supply, not the demand! I just want to be left alone to live the best life I can! With the least amount of pain possible! I am tired of being judged by people that don’t know me! Please help us have a voice!
Wow Gayle, you have just told my story. . I’m late in reply, as I just found this site, but had to respond. My issues (medical ) are different but has the same debilitating end, as yours. I was a pharmacy technician for many many years and I knew the sigma that was already placed on people taking narcotics, not to even mention a C2 drug. I have lost my license from the pharmacy board because I have to take these meds. I can’t work either because my pulmonary Embolisms have not ended well with lung capacity. Which, was after I wrecked riding my motorcycle, already leaving me hugely affected with hitting the pavement about 20 ft over my bike. Impacting my head, shoulder, knees & hip from the pavement. I need quite a few surgeries but after the first one, I had the PE’s from DVTS earlier. . Now my blood is so anemic that trying to get clearance for surgery is exhausting. I need a hysterectomy due to extreme pain with cancer found in the uterus. Is just all a mess. I finally have a good repore with my pharmacy but cringe when at times they don’t have my meds. I also don’t look sick enough, I get that vibe off other pharmacies. . Even though I do everything pain management requires & everything every Dr. Wants from me. I feel like a second class citizen from All this. I get tired of being poked & prodded at by Dr.s and being dictated by a body that won’t help but doesn’t have “the full blown wheelchair or dying look. Everyone assumes I’m ok because I smile, laugh & try to carry on. They don’t see the crying, rolled up, heating or ice pads, someone else cleaning my house & all the other behind the scenes. It’s sad that society has this stigma of what “sick” looks like. I don’t want to live on meds to just be able to move. I want to be fixed. I know I have things I want to do & places to go. The same as all of us do.. Thank you for sharing. I wrote way more than intended but it’s frustrating to have to be treated so bad that I (you & us) walk out of appts or places in tears trying to keep myself together. . Hope you start healing in the right direction with supporting people. ..
Hello My name is Kimberly Samuels . My story is quite long so I’ll do my best to shorten it up.
May 2005 I was 35, married Six kids Blended Family at my postion for 18 years and “On Top of The World” well I broke my right elbow (Spiral Break) and was told I could wear a cast 9/12 months or more or I could have surgery pins, plate & screws and would have use of my right arm just physical therapy. Well in my situation working full time and taking care of Our Rather Big Family who were all still young decided that was my Best Option.
Surgery went Horribly Wrong. The anesthesia was placed in the wrong spot, I was left on Life Support and Paralyzed from the Neck Down in Intensive Care and that day they weren’t able to complete the surgery. (No pins, plate & screws.
Well of course at this point the anesthesiologist “THOUGHT ” I had an allergic reaction and didn’t follow the Neurologist that was brought in and said I needed a steroid to try to counteract it. So I was left basically just to sit.
My Doctor performing the surgery said they needed to have another surgery to finish and I was so scared since what had just happened. Did end up having the surgery but a whole new Surgery Team was brought in.
Well again let me try to shorten this up.
I am no longer Completely Paralyzed. This took about a month and 1/2, I have Syringomyelia, Syringbulbia, CRPS, Horners Syndrome,Peripheral Neurapathy, Monoplegia my right arm and my hand hangs backwards at my wrist. Severe Carpal Tunnel into my neck due to overuse of only having use of my left hand. Spascity, Bulging Disks hyperthyroidism and a few more Dx but you understand.
I have Delibitating Chronic Pain!
Now recently the past few years have had A nearly impossible time finding my Prescribed Pain Medications. I am on Medicare Disability & Permanently Disabled. Every month I end up having to go from Pharmacy to Pharmacy to get turned away for every reason under the sun. I end up going to a small Independent Pharmacy who will fill my medications BUT, Will NOT accept my Insurance therefore I have to pay over $1800.00 out of pocket for my PRECRIBED PRESCRIPTIONS! I’ve tried mail-order who filled them for a few months back in March, April & May 2014 to abruptly not fill June and tell me because I Live in Florida they believe its best to see a face to face pharmacist?
I have even been on Action 10 Investigation News with Adam Walser telling my story. I could tell you many instances of what I have gone thru. The bottom line is,
THIS People (Myself) Want to have Some Quality of Life, I have a Family, Husband, my Kids are now grown (Its been almost eleven years I have been living with pain from that day.
I have 3 grandkids and I don’t want to just exist I want to LIVE!! I have been on every option almost possible and the medication I am taking now gives me the opportunity to have Better Days. The conditions I have are Not going away No one deserves to live in pure pain. I’ve seen a specialist in New York at Mount Sinai a and Dr.Barth Green In Miami.
No one should be turned away due to others mistakes.A person with diabetes gets their insulin, a heart patient gets their meds. Aperson with chronic pain should get their medications as well.
Thanks for doing this story. I hope that someone can take a minute to truly understand. We just want some quality of life!
Thanks and Sincerely,
Kimberly
My mother’s story:
My mother started having back and knee problems in her 30s. She had been a social worker and teacher all of her adult life.
At the onset of her severe problems, my parents owned a lucrative preschool/daycare center, after a cerebral aneurysm forced my dad to retire from his chemical engineering career.
By her mid-forties, my mom was completely disabled, and retired from work permanently.
We made the move from Southern California to our state when my mom was in her 50s, shortly after my husband and I were married.
My parents settled in a tiny, rural town where the nearest doctor was, at least, 20 minutes from home.
Nonetheless, they quickly found a kind, caring, general practitioner, in a major city, 35 miles away. He referred my mom to a pain doctor in the same city.
At that time, when she was no longer able to get relief from over-the-counter pain medicine, her doctor mercifully prescribed her three 7.5mg Hydrocodone pills daily.
Although they were originally prescribed by her new pain doctor, who also gave her a few successful lumbar-injections, her GP was happy to maintain the monthly-medication, given my mother’s severe arthritic conditions.
The medicine made such a difference in my mom’s life. She was able to thoroughly enjoy playing with the grandkids, walking with my dad, shopping, as well as so many other day-to-day activities which were previously out of reach.
In short, she regained some of the missing quality of her life.
Then, we lost my wonderful father to pancreatic cancer.
Following my dad’s passing, my mom made a fateful decision to find new doctors much closer to her area. She has always hated driving long distances by herself, and, without my dad at the wheel, she found the 35 miles prohibitive.
She settled for one of the very few GPs, in a nearby town. He, in turn, referred her to a local pain doctor, “Dr. X. ”
Doctor X performed several epidural injections for my mother. One or two, out of the several shots, gave my mother additional relief.
While Dr. X continued to schedule more injections for her, he also continued to prescribe her life-saving pain medication.
Then, prior to her last injection with Dr. X, he told my mother, “If THIS injection doesn’t work, there is nothing else I can do for you, and you might as well not come back!”
My mom was, understandably, devastated since the shots had, in the past, given her a bit of comfort, no matter how fleeting.
After this last encounter with the lovely Dr. X, her GP took over her pain medication prescription, filling it every month, for several years.
One day, about a year ago, a completely-preventable event occurred that, we believe, is the cause of my mother’s declining health.
She called the pharmacy, (CVS), as she always did, on the 29th day for all of her refills, including her Hydrocodone.
From here, we are not exactly sure what happened, or who, at CVS, caused the disaster, but their actions ruined my poor mother’s life.
It started when she got the call from CVS.
The pharmacy-technician told my mother, “I just got off the phone with your doctor and he will not allow us to fill your Hydrocodone.”
A bit confused, my mother asked, “Why not?”
The tech continued, “Well, according to Dr. X’s office, you are no longer a patient there.”
Doctor X.
My mom had not seen the grumpy old pain doctor in over two years.
At first, my mother laughed off the error, and patiently explained to the young tech that her GP was her primary doctor now, and had been for years, and that he, and he alone, filled ALL of her prescriptions.
She hung up the phone, thinking she solved the problem, and that CVS would call the appropriate doctor.
But, then, the phone calls started.
The first person to call her was Dr. X’s nurse.
Although my mom was surprised to hear from her, she always liked his nurse, despite his own terrible bed-side-manner.
“What are you trying to pull?,” the woman demanded of my then-71-year-old mother.
My mom, of course, was quite confused.
The nurse continued by accusing my mother of giving Dr. X’s name to the pharmacy, in an attempt to have her pain medicine filled by multiple doctors, at the same time.
Of course, my mom was flabbergasted. She explained the pharmacy’s mistake to the woman, and apologized profusely, even though it wasn’t my mother’s error.
Then, the nurse from her GP’s office called my mom, nearly immediately after she hung up from Dr. X’s nurse.
Her GP had, by now, finally received the request from CVS. They had also received a call from Dr. X’s nurse.
Together, the two nurses had obviously discussed my mother’s underhanded attempt to fill her medicine twice, and the second nurse tore into my sweet mother in much the same way as the first.
By now, my mom was in shock. Could something like this ACTUALLY be happening?
The final blow that day came from the pharmacist at CVS.
He had heard about the debacle, and called to inform my mother that CVS can only fill this “type” of prescription from one doctor.
After trying to explain to him that she only had ONE doctor, the pharmacist finally filled my mom’s medicine.
The next day, she picked up all of her medicine, and was very aware of the suspicious glances from the pharmacy staff.
When she arrived home, she had an urgent phone-message from her GP’s office, stating that the doctor wanted to see her as soon as possible.
My mother went in for an office visit the following day.
At the appointment, the nurse asked her, “Exactly what ARE you doing with all those pills?!?”
My mom, still in shock, and still not fully understanding the gravity of the situation, told her plainly, “Well, I’m TAKING them.”
The nurse, who was obviously not happy with my mom’s answer, continued, “Well, we JUST gave you the same amount of pills only a month ago! Where did THOSE go?!?”
My poor, innocent mom, said, “Well, I took those too.”
When the doctor arrived, he very-shortly told my mom that he was switching her to Tramadol, and that he would, never again, prescribe Hydrocodone to her.
My mom left the office without protesting, assuming that, if the first medicine worked so well and, essentially, allowed her a comfortable semblance of her pre-arthritic life, then this new, doctor-recommended “Tramadol” would certainly do the same.
Nothing was further from the truth.
In the following months, my mother began to suffer terribly.
All of the old aches and pains, that were, for 15 years, held at bay, came back to crush her.
She couldn’t walk. She couldn’t shop, spend time with friends, do any housework, or even travel the two-hours to visit my family or my brother’s family.
She brought out her old cane that she had used only sparingly during recent years.
But, most importantly, she couldn’t sleep. She was suddenly only able to achieve about three hours each night, because the pain was excruciating.
Over the past year, my mother has begged her GP to prescribe her a better medication.
It turns out that Tramadol gives her severe migraines, and a stomach ache. In addition to her arthritis, my mom has diverticulitis, and colon polyps. Any unusual change to her medications typically causes tummy troubles.
In general, they make her feel dizzy and fuzzy, as though she were drunk. I have the same reaction to this medication, so it might be an inherited allergy.
Also, the Tramadol barely touches her pain, so she takes it sparingly.
Time and time again, she has discussed these issues with her doctor.
When she asks for the Hydrocodone, his only reply is, “No. I’m not going to give you that.”
At some point in the past year, since her pain has been so severe, her GP referred her to a rheumatologist.
Her GP even threw her a small bone once by saying, “When you get to the rheumatologist, HE will give you a more appropriate pain-reliever. ”
But, the specialist ALSO refused, stating, “No. Sorry. Your GP will have to prescribe that to you.”
My mom does nothing but suffer. She cries all the time, and has given up nearly everything in her life that she used to enjoy.
She is now forced to rely heavily on Ibuprofen, a medication that upsets her stomach terribly, even more than the Tramadol.
A few months back, my mom was given the name of an excellent pain doctor, who is a bit further away than her current doctors.
However, according friends in her area, who suffer with similar conditions to hers, this doctor is always willing to prescribe anything and everything to help his chronic-pain patients.
My mom changed her insurance company, and waited until January to get the chance to visit this new, highly-recommended doctor.
After all, a lot of her friends go to this doctor, and have successfully started regimens that include every pain-relieving medication on the market.
Some of them take the Hydrocodone, but in MUCH larger doses than my mother EVER did, while others get relief from Oxycontin, Morphine, various patches, and even implanted-pain-pumps.
For months, she waited patiently for the chance to see this famously-understanding doctor.
When her first appointment approached, the new doctor’s office requested a number of records, including notes from her GP, and a pharmacy-generated list of her medications.
While she did not see her doctor’s notes, she hand-carried the medication list.
There, on the list, dated about a year ago, in large, bold typing, are the words, “NARCOTIC ALERT! SEE NOTES!”
We can only imagine what that hand-written notes say.
So, needless to say, this wonderful, helpful doctor promptly informed my mother, at their first meeting, “No. I’m not going to change your medicines, but I want you to know you can take up to 10 Ibuprofen daily.”
My mother is lost.
It is important to note that no one, in our family, has EVER had a substance-abuse problem.
Not one of us has ever even been a drinker. No one even has wine at dinner!
My mother was, for many years, a social worker. She worked, often, with troubled-teens who battled various addictions.
My mom looks like Mrs. Santa Claus, dresses like a congresswoman, and speaks like a Harvard professor.
There is NO way ANYONE could EVER peg her to be a drug-abuser.
Except, the pharmacy-technician, who was 20-years-old, and facing a certain-scolding from her pharmacist, made a critical error that is, quite literally, costing my mother her life.
I hope the young lady got a nice Christmas bonus for catching the addict.
The way my mother has been treated this past year borders on elder-abuse.
My mom should be enjoying her 70s, running here and there, and spending time with family and friends.
Instead, she’s writhing in pain, worried about whether or not she can even get up to go to the bathroom.
If her pain wasn’t so well-known controlled before, I would think, maybe, this is just the natural progression of the disease. But, if that were the case, she would not have spiralled down-hill immediately following the removal of her medication.
At the very least, some doctor, somewhere, during the course of the last year, should have weaned her slowly away from her previous medicine.
It is nothing short of a crime against a sweet, elderly woman, who never committed a wrong deed in her entire life.
I want justice for my mother, and for every other victim in this “war” against drugs!
My heart goes out to your mother. I am in my 70’s also with a somewhat similar experiences (but not as awful as what happened to her). I have a double spinal compression fracture, and the Oxycodon do help. I am not addicted. CVS has been the worst. I have been told that I use too many different CVS stores; therefore I am a problem. My GP said he would not prescribe the pills because my grandchildren “might steal them.” I did find a good doctor who knows I will not abuse. I wish your Mom the same ending.
I appreciate these stories that each person has shared and how they have been dealing with pain and the difficulities they feel when it comes to the fear of not knowing whether the medicines that are taking for their pain could be stopped and based on what my dr. has told me, if you take the medicine as prescribed you will not get addicted. I honor those words and I do not take more the dose written. What I take does not take all of my pain away but it does help me to be able to deal with my pain easier. I have been in pain since Auguest 23th,2014 when I had a ruptured disc and it took 12 days before I was able to see a neurosurgeon who immediately said you need to have a MRI today and you need to be entered into the hospital and emergency surgery must be done as you have Foot Drop and the nerve damage has already affected your leg and foot. God knew how much I could bear as I truly believe I could not have continued in the amount of pain I was in without the surgery to relieve me where the disc was sitting on the nerve endings and was causing great damage to my leg and foot. I had visited the ER Department of the hospital four times before I was able to see the neurosurgeon and the ER only gave me pain meds and sent me home. My husband and I were told the ER staff could not do a MRI or a Cat SCAN. Once I was seem by the neurosurgeon and did surgery on my back he informed the hospital and the ER Department that this was not true and that I should have had a MRI. The policy of the ER Department has been changed based on the situation that happened to me and if a patient returns back to the hospital with the same problem over and over they are to be admitted to the hospital. In the mean time it has been over four months since my surgery and I have spent 3 weeks in a rehab. center doing physical therapy and occupational therapy 6 days a weeks and since leaving the rehab. center I have gone to physical therapy two times a week for the last 3 months plus and I am no better as far as the Foot Drop and the pain is worse now and I am only able to be on my feet a few minutes at a time or I will suffer with great pain. I have discussed my situation with the hospital staff several times and we are considering a malpractice law suit and we have done a lot of research on the best way to handle this situation. The ER staff has admitted to the hospital staff that they did not check me for foot drop. I truly believe the ER staff is responsible for my pain and I feel that my health insurance company should not pay the ER portion of my bill. The ER staff should feel really bad for the matter in which I was treated. I truly believe they thought I was seeking drugs. I have never been on any drugs unless it was prescribed for me by my dr. and I have never taken anything other than the way it was prescribed. I am an older person who deals with arthritis pain and I have for a number of years. I am bein treated for Lupus and have been for several years. I am also on predisone. I am so disappointed with the situation that my husband and I dealt with and we are sitting here with no idea of what to do?
I wrote a short story about developing drop foot and the pain I am in. I did not give a lot of details as the point of me writing was to say, as a person who suffers everyday in pain whether it is from the foot pain and calf pain or from previously been treated for Lupus and arthritis it is on going pain. I have since spoken with my rheumologist and had a good talk about how doctors decides about giving out pain medication. It is my understanding from him that again if medication is taken as directed and you and your doctor are staying together on your medication that people who are in chronic pain and need relief are not the people who are abusing medication. He agrees that there are situations where patients must have relief from their chronic pain and these patients can be treated without problems of drug aberrancy. I think most doctors will not prescribe drugs without careful deliberation and assessment of each patient. The doctor has a reputation to uphold. I have been in pain for many years from having Lupus, inflamantory arthritis and issues where pain has taken over my life and my doctor is very strict what he prescribes and all medication is monitored and controlled closely. I trust my doctor that he will do what is best for each and every patient and no prescriptions are going out that door without careful thoughts of putting his signature on a prescription. You need to be well established with a good doctor who has an upstanding reputation in his field and who has been your doctor and knows your medical issues as he should have been who has been treating you all during your period of illness. I had been given a dose pack of steroids prior to my recent back surgery and a prescription for hydrocodone to take until I could get in to have an MRI and see a Neurosurgeon and after the surgery, I spent 3 week in a facility for physical and occupational therapy and while there I was on hydrocodone. I requested my records from this facility a few weeks later and sure enough it is written in there that I had been on hydrocodone before coming to their facility to get physical therapy and occupational therapy. When I got there and I had just had back surgery for a ruptured disc and prior to the surgery I developed drop foot as the ER Department of a local hospital whom I visited four different time prior to my surgery did not check me for drop foot. I could not believe they had labeled me as if I was an abuser. It is very important that if you are written a prescription for 30 days and your pain gets out of control call your doctor and ok that you might need to take more because you will run short and the drug stores will not refill until 30 days from your last prescription. Keep yourself legal and like everything else document everything and know what is going on with your medical records and what is going into them.
I became a chronic pain sufferer over a period of time but didn’t seek medical treatment till 1995 and things where difficult at first finding the correct pain care. It was like doctors didn’t believe me till I had several test ran like MRI’s , Cat Scans and a EMG .
At this time I didn’t know much about pain management and doctors would not prescribe anything stronger than hydrocodone. It took too many of these pills to do my unrelenting ongoing chronic pain any good and I kept running out early, this looked like abuse . A certain Pain Specialist I was seeing told me he had a surgeon that could alleviate my chronic cervical pain with surgery but was afraid I would say I’m still in chronic pain after surgery and want more hydrocodone. I told him this is not true if I wasn’t in severe chronic pain I would not need this medication, what do I need to do for this surgery. He said two weeks in detox and he will set up the surgery. I was very naïve at the time and did the two weeks. After my time in that hell hole I go back to my trusting Pain Specialist that had the answer to my chronic pain problem only to find out he lied to me ,no such surgery existed. I wanted to jump over his desk and strangle him but my better half took over, I was very upset and angry like anyone would be. I was afraid from then on I would be red flagged as a abuser of any opioid medication that would be of any help for my chronic pain. I thought this would show up on my medical records and any type treatment of my chronic pain would cease to exist.
Even though I finally found pain relief from a compassionate Pain Specialist 3 months later for 9 years, all good things seem to come to a end. Now things have been turned totally upside-down and insane for the world of chronic pain sufferers, along with doctors that try their best treating us and pharmacist that try to fill our scripts .I cant believe the things I’ve been through and heard of from other chronic pain sufferers. Over the past 15 years the treatment of chronic pain is a utter disgrace in the year 2014.
Even though I’m on the lowest dose possible to keep my chronic pain under control I still worry this too will be taken away. At each appointment I get scared I will be told my doctor can no longer prescribe what little medication I do get. I appreciate the pain relief I do get , it means more to me than people can imagine. If only regular people knew what its like to suffer day after day from never ending chronic pain maybe they would understand , but I don’t wish chronic pain upon anyone.
Our government should implant a computer chip in between the thumb and index finger for those that truly suffer from chronic pain to make us legit chronic pain sufferers so Pain Specialist can prescribe to us and assure pharmacist will fill our scripts with no scrutiny or backlash from law enforcement. I truly wish this can be resolved as it seems the U.S. is behind in the treatment of chronic pain.
Not one American citizen should have to suffer from ongoing chronic pain no matter how much offered by anti-opioid zealots who may spew out corrupt information and lurk at the fringes of the discipline of pain management.
Dr. Fudin , thank you for your compassionate caring and ongoing time you give to us that need this space to write about our personal struggles with chronic pain.
I hope and pray Dr. Kolodny along with PROP and their new president Dr. Jane Ballantyne read these stories of those that need the correct pain treatment program.
Im 20 years old and Ive lived my entire life in chronic pain. It has slowly started to take my life away. Id compare it to dying in slow motion. I can no longer go out for long periods of time. Ive been called a drug addict multiple times. Even after surgeries and I was screaming in pain Ive been denied meds because Im “overreacting”. Ive watched my friends be denied help and told to leave because they weren’t a common patient. I have 4 of the rarest pain syndromes in the world. Hardly anyone knows about them and I don’t blame them. Even though there are less than 1000 people in the world who have them we still exist. We aren’t crazy or making it up. No one would choose to have their lifes taken away from them. The ones who have kids have to struggle to take care of them or go their school events. To be a child and watch your parents struggle is heartbreaking. But its even worse for the patient. We watch everyone around us try to compensate for whats been taken away from us. We have to pretend we don’t see our loved ones be torn apart by watching us struggle. Chronic pain doesn’t just effect the patient.. It effects everyone around you. It shapes their lives and teaches them to be compassionate because you never know who you are standing next to. If you met me at the supermarket you’d never guess I was chronically ill.
I was an award winning filmmaker before Chronic Pain from a MVA sent me into a downward tailspin. The first few years, doctors chased their tail trying to find a diagnoses that would fit my pain pattern. It only took 5 years, for us to find a treatment solution that would work to manage my pain effectively. Up until that time, it was a nightmare fighting excruciating pain daily. Pain is expensive. I live on a fixed income and require weekly therapy appts for mobility and pain reduction. Up until now, Ive had help and support from extremely compassionate and kind people. Im lucky. Without those treatments, I would have ZERO quality of life. I dont know what I would do . Others are not so lucky. Having chronic pain doesn’t make me LESS THAN or STUPID or MALINGERING. It makes me HUMAN. I have become more compassionate to myself and towards others… I have embarked on a path of Activism around the issue of Chronic Pain to give a voice to the many voiceless ,who have less functionality than I do. Ive decided to address the issue of Pain, and all the raging politics around it, with what I know how to do BEST- make a documentary film on the issue. Its called : “Pandemic of Denial” because that is exactly what is happening right now, globally. Chronic Pain patients nos. escalate daily ; they cost families, workplaces and insurance plans more and more, pain patients get dirty looks and are discriminated against daily, because society doesn’t believe its a legitimate disease. Strangers tell us to get over it and get a life. We dont WANT to live in chronic unrelenting pain, every day the rest of our lives ! Would THEY ? Society just doesn’t get the Chronic Pain patients struggle. It takes one to know one.. Only another pain patient truly gets it. I hope to change that, with the help from a whole lot of friends…
Tina,
I wish you much success in this endeavor. I read so many of these forums and realize that there are 1000s (minimum) people who, like myself, suffer from chronic pain. I have often wondered why we cannot all rally together in some type of movement to protest the actions of government agencies and others, who would take away one of our most important civil liberties…The RIGHT TO PURSUE HAPPINESS. When the Declaration was written, one of the charges against the King stated: “He has erected a multitude of New Offices, and sent hither swarms of Officers to harass our people and eat out their substance”. Does this sound familiar? Can one be “happy” while in constant pain? Are we being denied one of our “inalienable rights?” You could just be the catalyst to begin the campaign. Please let us all know how you are coming along in this effort and when we may expect to see your documentary. Surely all reading this will support you.
I am Cyndi from Barberton, Ohio USA, after reading many post here I almost don’t know where to begin.
A touch on who I am, I just turned 50 in Dec.2013 I grew up in the children services/CSB here in ohio and from the poor job they did in our health care I went into the world un prepared for everything as far as misdiagnosis’s right up to flat out ignoring issues. I raised 5 boys and 3 girls only one natural son I have 5 grandchildren and 3 great grandchildren. I worked in the medical field taking care of the elderly I seen some horrible things in that field so redirected my education and put myself through school as a hair stylist with a full license, I worked on a national styling team traveled doing shows all over the world I fell in love with it all. My point is I worked hard raised my family never had a record for trouble other than a run away and 1 speeding ticket as an adult in 2001 I started having these huge panic attracts I hid it from everyone it got so bad I would lock myself in the bathroom at work finally I just had to start addressing what was happening to me, so yes I was set loose in the world not knowing my family medical history got diagnosed schizophrenia with panic disorders the ruled I was not allowed to work with the public so I was placed on SSI/SSD and in 2002 I fell down some stairs backwards and broke my back, so then not treated properly went into chronic pain and sciatica, my legs would just go right out from under me so pretty much became home bound so the med’s began they was treating my back and leg pain with Oxycodone-Acetaminophen 5-325 and a anti-inflammation med, I can’t recall the one I started having more and more issues with my legs started on IC Ropinirole HCL for RLS and in 2004 my left leg started hurting so bad I couldn’t put wait on it much at all I didn’t go to the Dr. fast enough it swelled up and was a bluish purple all behind my knee and in front so finally went to ER they asked me what I thought was wrong with my leg, I went power walking a few weeks ago maybe I pulled something, she then informed me she believed it to be a blood clot found out it was, after 28 days in the hospital my foot was one stage away from gangrene so they started discussing amputation, I wasn’t having that started working my leg and foot so much the circulation got better so I didn’t loose my foot but all the way to 2009 I was getting new clots in both legs, groin and calves they put a filter in my chest with round one of blood clots but they treated it totally wrong never typed my blood to try and see if there was a reason I was clotting and all that time I was on coumadin my legs stayed 4 to 5 times larger than normal they kept me on bed rest so long during all those yrs It took me forever to be able to walk down my street no therapy nothing my PC Dr. wasn’t keeping the blood thinners correct hardly ever took my PT?INR’s so I called the hospital got the name of the oncologist that took care of me in the hospital he worked at the Cooper Cancer Center he took over the PT?INR’s and got it so in control that we only got check 1 a month still no test done to find out why I kept getting new clots, now mind you all the bed rest didn’t do my back any favors either, then 3 dr.’s all at the same time retired and I had to find new my oncologist went to work for Cleveland Clinic and the Cooper Cancer Center gave me a new Dr. well the new PC and the oncologist decided to bring me into the new millennium and changed my blood thinner to Xelrelto well they failed to tell me it had no antidote if I had any emergencies, found out I needed a hysterectomy they miss judged the time to be off the thinner before surgery and a 2 hr procedure turned into a 22 hr fight to save my life, the nicked a artery with the robotic’s and sliced me wide open and lost control of the surgery they lied to my husband for the whole thin 20 hrs later they told him they would bring him to me he asked where I was the said ICU when he walked in the room the crash team had a nurse sitting across my chest and others all around the bed trying to get my heart going again and ventilating all at the same time, 6 transfusions a lung collapsed and congestion heart failure later he got to see all this they had him call the family, including the smallest of my grandchildren so they could say goodbye, my hands was tied down and they kept me under if I showed any sign of agitation so I hardly remember a lot of it. Once I got 5 weeks from the release of the hospital found out my gallbladder had to come out in all this they damaged my bladder and bowls so I still have to wear pull ups, 4 months after surgery my left side of back was hurting so bad I went to the ER when they asked for a urine specimen I went and got so scared when I looked in the cup it was damn near black so was in from july 1 st. till the 10th they told me to stop the thinner and my bladder stopped bleeding followed up with PC he insisted it was not the thinner so I took 1/2 the dose and in less than 4 hrs it was bleeding again so went to see him again asked him to check my PT?INR and he said why I said so you know what dose to start the Coumadin again he said why would I do that I said well idk maybe cause I was told I would be on thinners the rest of my life he said no you dont need it he said we will find out when you clot, so in dec. on New Years Eve went to ER found out I had DVT’s 3 in the right calf and 2 on the left calf so I fired him and in January hired my current PC met him on all the visits back to hospital after all the surgeries he took such good care of me, he went back to day one started with aggressive therapy in home and a visiting nurse he had changed a lot of my meds the pain pills gave me 10 mg and now has added Oxycontin 20 mg ER for breakthrough pain the pain med is every 4 hrs but for the first time in all these yrs I am getting better, I have to go for some test on the 7th to find out once again if my lft leg shin down is going to be amputated so I am freaking out and this morning I go to CVS in Barberton and I could tell the way the girl was checking me in to fill my scripts something was up, well they made me wait 1 hr and no one else was there then they called me up said I was ready gave me my husbands meds and mine but said U couldn’t have the Oxycodone 10’s but gave me the Oxycontins ?? they have been filled on the same day every month then she proceeded to tell me infront of a friend they will no longer fill any of mine or my husband meds from the current Dr. I asked why she said he is under investigation so I came right home got online and sent a mesg to my frien sheila kim who runs the site I listed and she called me while she searched his info, there is nothing against him never has been his licensees was good till 2018 so she advised me to copy the info we found and wait till they give me my script in the morning then show them the paper work and insist what they did today was inappropriate, if they have a internal investigation they should have notified him first not his patient in front of a person who now knows mine and his business, also after the surgery I woke up a diabetic to so I am in waiting and so worried for myself as well as my husband and I want to get involved here to try to get us help and help for others suffering at the hands of the pharmacies and Dr.s who miss use there power to help only who they want. I am afraid of what is to come yet and promise to come back and tell you the out come and my heart goes out to you and all your families thank you for putting up with this drawn out story. God Bless You All ……. Cyndi
I just wanted to say THANK YOU Dr. Fudin from the bottom of my heart for really understanding patients like us. I have M.S. Lesion’s in my spinal cord & on my brain, therefor I stay in Chronic Severe Pain in my back and Chronic severe Migraines up to 3 days a week. I think if the politicians would try to learn the word empathy things may not be like it is now. Or if it were them or their loved one in Chronic Severe Pain 24/7 I really feel there would be a world of difference in the way those of us left behind are being treated today. So THANK YOU VERY MUCH for your caring concern for us left behind in chronic severe pain 24/7.
While in NY I had been treated for my pain by my Oncologist, Neurologist and surgeon who worked as a team. After another surgery .we move to Fl to be near family. I am still shocked by what I experienced. My NY doctors sent me to a doctor in FL. I was given two rx’s and went to the first pharmacy about 100 yards from the home. I would spend the next 24 days going to over 30 pharmacies (mostly Walgreen and CVS)before I got the rx’s filled (not by Walgreens).. The Walgreens by our home told me they did not carry the meds in stock. I asked if they could order them (at this point I was not familiar with the situation in Fl). I returned four days in a row, finally being told by a pharmacist that they would not fill the rx because I was not an existing client (having just moved there). They lied about not having it in stock. I went to another Walgreens and was told I needed to get it filled at the Walgreens closest to my home (which would not fill it). it were not so serious it would be laughable. I was treated extremely poorly by the employees of Walgreens. One asked me why I felt I needed the pain meds and if I tried Tylenol. This one said they would consider filling it if I gave them a written explanation of my long term pain management goals. To anyone not from Florida I realize how insane this sounds. Dealing with the effects of Cancer I have a pharmacist demanding I do homework for him to analyze and decide if he will fill my doctors rx.. Please, anyone reading this, see what is happening in florida now and help us fix the problem.
I have A PLASTICITY AND THE PLASMA CELLS ARE CHANGING IN MY SPINE I AM LEFT IN THE CARE OF THE PHARMASIST YES WHAT SHE THINKS I SHOULD HAVE FOR MY PAIN THE DOCTOR I HAVE IS AFRAID TO WRITE MY PAIN MEDICATION … SO I GO TO PAIN MISMANAGEMENT …. I WAS DROPPED FROM 8 MIL TO 2 MIL NOW TO 4 MIL AND A 1/3 OF WHAT I AM USED TO TAKING THAT WORKED I AM NOT ALLOWED ENOUGH TO HAVE MY PAIN MANAGED AND IT GETS SO BAD I WANT TO BLOW MY BRAINS AND A DAY DOES NOT GO BY I THINK ABOUT THAT I NEVER USED TO MY LIFE SUCKS
I THINK ONE DAY I MIGHT HAVE TO LOOK ON THE STREETS SOMETHING I WOULD NEVER OF THOUGHT OF THIS IS NOT HELPING THIS IS MAKING A NEED FOR THE BLACK MARKET A BIGGER PROUBLEM SO THE PEOPLE FIGHTING THE WAR GET MORE MONEY THEY ARE THE ONES THAT NEED TO BE LOOKED AT ,,, NOT THE POOR HURT PEOPLE I MUST TAKE MY MEDICINE SO I CAN SURIVE RIGHT NOW THE PAIN IS UNBEARABLE IT FELLS LIKE SOME ONE IS TRING TO TEAR OUT MY SPINE AND THE SHARP STABBING PAIN IN THE LEFT LEG ALSO I HAVE NECK PAIN THAT GIVE ME MIGRAINS AND THAT ISUE IS NOT TAKEN CARE OF I HAVE THOUGHT OF MOVING OUT OF FLORIDA I KNOW A FEW MYSELF THAT HAVE OR MAY BE OUT OF USA ALL TOGATHER I OWN A SMALL BUSINESS I AM GETTING TO THE POINT I CAN NOT WORK SO EVEN SHUTTING MY DOORS AND BECOMMING A BURDIN TO MY COUNTRY .AT ONE TIME I COULD FUCTION WORK PAY BILLS NOW THEY CALL ME WANTING TO BE PAID . THESE PEOPLE SHOULD BE ASHAMED I HURT SO BAD I HAVE TO TRY TO STAND HUNCHED IN FRONT OF THE COMPUTER BECAUSE MY HURTS MY BUTT EVEN AND IT FEELS LIKE CRUSHES MY SPINE
this is not just FL. This problem is every where . I am a cancer survivor as well. And what I’ve encountered is , it seems the medical community and public alike do not believe that the long term side effects of chemo,radiation, surgeries are painful. Everyone seems to truely believe that a cancer survivor can just pick up where they left off in their life as soon as treatment is over. The medical community seems to push this crazy myth. As for me I don’t really know what happened on the operating table but I woke up with something bad wrong with my back. After a few years that no one would tell me or help what was wrong.I finally was told I had 2 herniated disks as well as all the forever side effects of cancer treatment
I am so with you! Moved from NY to MI then developed my pain issue, LPHS. Moved to FL to be closer to family for help and because the warmer weather helped my pain. I can no longer use medical marihuana that I was prescribed because bot yet legal here. Plus I found out after moving that it’s impossible to get meds filled and impossible to get into pain management. I needed he nephrologist to call physicians on my behalf. Wouldn’t have moved here had I known that my medical care would suffer and my poor autistic child gets no education because we can’t afford to put her in private school
While in NY I had been treated for my pain by my Oncologist, Neurologist and surgeon who worked as a team. After another surgery .we move to Fl to be near family. I am still shocked by what I experienced. My NY doctors sent me to a doctor in FL. I was given two rx’s and went to the first pharmacy about 100 yards from the home. I would spend the next 24 days going to over 30 pharmacies (mostly Walgreen and CVS)before I got the rx’s filled (not by Walgreens).. The Walgreens by our home told me they did not carry the meds in stock. I asked if they could order them (at this point I was not familiar with the situation in Fl). I returned four days in a row, finally being told by a pharmacist that they would not fill the rx because I was not an existing client (having just moved there). They lied about not having it in stock. I went to another Walgreens and was told I needed to get it filled at the Walgreens closest to my home (which would not fill it). it were not so serious it would be laughable. I was treated extremely poorly by the employees of Walgreens. One asked me why I felt I needed the pain meds and if I tried Tylenol. This one said they would consider filling it if I gave them a written explanation of my long term pain management goals. To anyone not from Florida I realize how insane this sounds. Dealing with the effects of Cancer I have a pharmacist demanding I do homework for him to analyze and decide if he will fill my doctors rx.. Please, anyone reading this, see what is happening in florida now and help us ix the problem.
My mother-in-law has ankylosing spondylitis, and has been taking the same dose of OxyContin (80 mg BID), along with amitriptyline, and high-dose gabapentin for many years. Prior to getting her spinal cord stimulator about 8 years ago, she was required to see a psychiatrist by her insurance company. She has no history of mental illness, just real pain caused by a real illness, and was embarasseed to have to go through with this. In addition, it delayed her getting the appropriate treatment for several months. About 4 years ago, when her pain physician died suddenly, we found her someone quickly to fill her next prescription, but is likely only because we had friends in the field. I think of the many patients who did not have family members who could help get an appointment with a new pain physician quickly. We have so few specialists in this area as it is. About 1 year ago, she had a tablet endoscopy. Although these tablets usually pass right through the GI tract, hers became lodged, possibly due to the amount of scar tissue she has in her lower intestines. The tablet had to be surgically removed when it became lodged in her colon, along with removal of a segment of her colon. We discussed her chronic pain with the surgeon prior to surgery, and he assured us her pain would be managed. She is a reasonable, kind, educated, and compliant patient . She was well aware she would not be pain-free after the surgery, and always has reasonable expectations. (She is never pain-free, and has many non-pharmacological ways of dealing with her chronic pain, including closing her eyes and using imagery. Unfortunately, having her eyes closed was mistaken as not being in pain.) However, after the surgery, the surgeon only gave her the same PCA dose he gives to all patients. There was no continuous rate, and he would not continue her long-acting pain medication at home, and simply said, “there is going to pain after surgery.” She did not sleep for several days, and became confused after a dose of diazepam was ordered, since she couldn’t sleep. He wanted to decrease the pain meds. We talked to the nurses and the patient advocate. Although the patient advocate was kind, she was unable to help us. It was truly unbelievable the way we were treated by many of the nurses. We later asked for the medical records, and several nurses described us as difficult, that the patient did not appear to be in pain, and, in one instance, that she overheard “the patient’s husband and son discussing sneaking opioids in from his car” when really we were discussing the importance of not leaving her home meds in the car, due to the hot, summer temperatures, and because they were controlled. We just wanted the physician to understand what she needed as a baseline, to get her to what an opioid-naive person would be with zero pain medications, and then provide her with additional pain medications for the acute surgical pain. He wouldn’t believe the math or take any recommendations, althought they were asked in a polite, respectful way. I now understand the “game” some pain patients must play of either being overly kind or extremely angry to the involved health professionals in order to get the treatment needed. After 3 days, we finally got a pain physician consulted. She was also rude at first, likely due to her being warned to watch out for our family and the drug-seeking patient. After she finally read her whole chart, she apologized, understood why we had requested the patient advocate, and restarted routine and “as needed” opioids. Her confusion resolved, she recovered and went back to her previous home-dose upon discharge. Unforutnately, my mother-in-law now has cancer. However, because of this diagnosis, she is treated more compassionately for her pain. I wish it did not take a cancer diagnosis for patients with chronic pain to be treated with respect.
Another day with chronic pain, trying to look to see if a pharmacy will fill my legal pain prescriptions today after going to 5 locations with despair, I was treated rudely in front of my friend and others in the store pharmacy department by john at a CVS on us 19 and Cortez blvd. Weeki Wachee Florida at 2:49 pm on June 8th 2014
I walked up to the counter limping with my cane and the pharmacist John walked towards me looking at my prescriptions— Then out of his mouth comes “Can I help you Bud?” in a demeaning way. I asked “could you fill these prescription please.” He looked at the prescriptions and said “Let me tell you two things, first of all we do not fill a out of county prescription’s” (I live on the county line, on the boarder, if you walk across the street I am in that other county. I am wondering if he was new to the area ) and 2 we do not carry one of those meds” After talking he threw the prescriptions back to be on the counter like they were garbage.
In no way what so ever did this man care that I was in so much pain, hanging on the counter and I could hardly stand. I needed to get my meds filled. Why does he work at a pharmacy that is suppose to dispense the medication to ease chronic pain and help people? If he wont do such thing. In no way did this man want to wait on me or treat me with respect. What did I do to be treated with so much disrespect? What ever happened to “sir”? being polite? or concerned? He does not like people with a cane that have trouble walking whom are to an extent handicapped. Or is he treating me badly because he is uneducated and stereotyping me because of my prescriptions? Did the company tell him to treat handicapped people this way?
I feel I am going backwards, my pain was being controlled with pain management and the medication. Don’t get me wrong, I had good days and bad days– but now they are all bad.
After a car accident I had new back injuries in the center of my back and neck and my condition is progressive degenerative disc disease with some kind of bone marrow plasticity and red bone marrow transformation Myeloma, can not be ruled out . As well as Severe central ,bilateral stenosis, multi disc bulges ,and multi herniated discs. I have sciatica down the legs, hips, to the feet. and it is extremely pain full with out my medication , The stabbing pain in the lower spine ,and butt ,the constant shifting of the disc’s, pain in shoulder blades, the neck pain runs up the spine to the head, and the migraines, I never got those before the rear end accident, with this new thing showing up, I need my meds more than ever.
It is only going to get worse. it seems people in the government and pharmacy and law enforcement do not care if I am hurt or someone else is. you would think they would try to help the people that are truly hurt
I would think the new laws are creating more of a problem. They are creating a need for the black market , that is what this is all over is it not , is that what is wanted ,to feed the numbers , Lets see, if they mess with someone mentally that is hurt and keep making them suffer and with the mental abuse they might become a statistic, and do something never thought of , like water boarding or some un humane way of punishment and with the pain like some un humane conditioning and that is the way I have and other ‘s have been treated that are in chronic pain and suffering . Is that what it is I am being punished for being hurt, with a handicap why in the world would our governor and other parties involved , make it this hard for someone terribly hurt to get the medication legally prescribed , they need to lessen the suffering , now wanting to control the meds we get the milligram ect. some meds work better for some people than others no one knows that but the patient ,from going to the doctor and being put in a pain management treatment these new laws are being past on the behalf of someone abusing pain management treatment that lied about his or her condition and big business wanting to make a buck and small alike ,and the people who are legit pain care patients have to pay for their greed and deceit
I would not treat a animal the way a lot of pain care patients have been treated mentally and made to unjustly suffer denying them a less painful and of course a happier and a more prosperous life , and health care professionals and law official’s and government all took a oath , and that was not to treat those suffering cruelly, not to add to the suffering of a patient or a person or civilians , and not to pass judgment on those less fortunate ,some people can not get health insurance because of medical or financial and some people slip through the cracks like Florida did not elect the Medicade expansion so a lot of Floridians can not get insurance and it is not by their choice ,The legit pain patient also should be allowed the pain medication they are legally prescribed by a licensed doctor with proper MRI or x-ray documentation and anyone person or department or corporation interfering in that process should be fined or reprimanded or pharmacy license suspended, that simple… it is one thing to have little aches and pains, but a whole different thing to have severe chronic pain.
Thank you Edward
As a politically and spiritually “awake” person that also deals with chronic pain from Ehlers-Danlos Syndrome, degenerative arthritis of the spine and GI pain from several surgeries, I can speak honestly when I say that opioids are a necessary treatment for many people at some point in their lives.
I’m 30 years old, and having lived with daily pain for almost 20 years, I have used non-narcotic drugs in the manner I’m supposed to, and still have ended up with liver problems and stomach ulcers from taking over-the-counter (OTC) meds off and on for many of those years. Thankfully, due to medical marijuana being available where I live, I have been able to avoid using opioids on a long-term basis for many years now.
However, I would hope to God Almighty that if I ever get to the point where I need them long-term, they would be available. Opioids, when prescribed at the right dose and without extra acetaminophen, have virtually no organ-destroying effects and side effects can be easily managed with herbs and supplements to promote regularity, etc.
Consider this: Before Vioxx was taken off the market due to devastating cardiovascular side effects and many subsequent deaths, my rheumatologist pushed me a lot to take it. I refused, and I’m glad I did: I have mitral valve prolapse (a condition in which a heart valve is faulty), and the consequences of taking such a new, dangerous drug could have been horrible.
There is definitely a stigma attached to having chronic pain in the U.S. right now. It hasn’t always been there, and I truly have to blame the mainstream media’s demonization of chronic pain patients in general – as well as the “efforts” of the good ol’ DEA – for this problem. Can you imagine if a three-letter agency decided to put measures in place that decide for a doctor what a patient’s heart medication dose should be? How about thyroid medication? Medications affect everyone differently, and a doctor goes into his profession to help people, not fill out paperwork and be harassed at every turn for treating patients’ pain.
Don’t get me wrong: I hate a lot of things that Big Pharma has done: dangerous clinical trials, vaccine cover-ups, and psychopharmaceuticals, just to name a few. But the drugs that have proven themselves to be useful for thousands of years (including opium, marijuana, and other plants) should be available to everyone when they need them.
If I let it, pain could completely destroy me. I’d be unable to do the things that I love, with the people I love. I manage my pain in many, many ways that don’t include pharmaceuticals: stretching, TENS unit, cervical traction unit, chiropractic, physiotherapy, aquatic therapy, nutritional therapy, hot packs, and even plain old distraction by writing articles here.
However, there are days where I lay in bed and cry because I don’t have anything else to try to make the headaches or the neck pain stop. Those days are very hard for me, and with the headaches, I live in a dark room without color, sound, or “life” in general. I use as much marijuana on those days as I usually do in a week, and thank heavens it’s not too often. But I can’t help but roll my eyes when I’m having one of those days and I read news stories about the “evils of opioids”, where they constantly use the terms “addiction” and “overprescribing” and portray a picture of a situation that is much rarer than in actual reality.
“Overprescribing” is definitely not the problem in the U.S. today ; The problems are under-treatment of chronic pain, the public’s misunderstanding of it, and the DEA’s over-regulation of the medications people with it need in order to live robust and fulfilling lives.
So well said, thank you!
Carole,
I recommend you watch this video.
https://www.youtube.com/watch?v=I7wfDenj6CQ
“Figuring out how your brain (i.e. Carole’s brain)¬¬ responds to pain is the key to finding the best treatment for you.”
To broadly say that opioids do not work on CRPS is a very simplistic statement. It’s not a black/white issue.
In some people I have found that certain opioids are indeed effective to an acceptable degree on CRPS. Opioids are unique in that they work on blocking the pain signal (the “ascending” pathways) and also enhance “endorphin” effect (the “descending” pathways). So it gets the pain coming and going. But at what cost?
It all boils down to balancing the risk vs the benefit for the individual. But in some cases the benefit for using opioids for CRPS does outweigh the risks.
– Dr. Murphy
Thank you so much Dr Murphy,
I was honestly scared of what your answer may be.
From the informative sources you & Dr. Fudin have posted for me, I am grateful.
After the experiences I’ve had with topamax years ago (endo & andenomyosis) which was very physical &
the adverse reaction(s) from gabapentin (just shy of 8 months worth), I am extremely frightened to try anything ‘new’, almost ‘phobic’. However, in the same token, I am willing to try anything, I think most with CRPS are.
Frightened but willing, a contradiction I realize.
Doctors aren’t even sure if I have type I or type II, that from the specialist at Mass General, he said ‘I can’t decide’. Many broken bones & perennial nerve damage (foot to knee). Cold type CRPS mostly.
I feel I have fallen through the cracks & have simply ended up in pain management with a doctor that knows very little about CRPS. It is exhausting & stress inducing trying to find new doctors, especially in florida. I have been told (by one of the top 100 in country) to never have another ganglion block, it seems most want to that asap.
I wish I could write more but I don’t want to clutter up Dr Fudin’s site.
I thank you so much. You, & Dr Fudin are very kind to take the time to answer my questions with great expertise. I only wish the two of you could be my doctors.
Thank you kindly, Carole
Hi Carole,
I usually see most of the CRPS sites but not this one and have come across it 2 years later. I have CRPS as well and I believe, according to my Anesthesiologist and Pain Mgmt at MSKCC, NY I have CRPS 1 and got it from bone cancer surgery after being casted for 7 weeks. This happened in October of 2013 and since my life has taken a turn for what I never thought I would find myself in. My GOD, how much and how sorry I feel for people that live in chronic pain.
I was just wondering how you are doing and are there any treatments that are making you feel better? I take gabapentin, oxycodone, lidocaine patches, hydromorphone ER and have tried numerous meds that have made me so ill, its intolerable.
I have tried Ketamine and for me that would be the answer except it is totally unaffordable. I am no longer employed due my CRPS deterioration and I try mentally to distract myself with different things, right now music seems to be working but eventually breaks down and my CRPS is almost a 10-12 level of pain on a daily basis….I must try and stay positive and do have some support although people do tend to leave you and forget you when you have chronic pain. I can no longer do anything or go anywhere….going to the park and beach was my favorite thing. I am hoping you will respond back with wonderful news and I hope God willing you are ok and either in some kind of remission or comfortable with a little or a lot of quality of life. PEACE – Jeannie, live in tormenting debilitating pain and hope life gets better one day:)
Thank you Dr. Fudin for providing this important forum. If there is to be any hope of improvement, we need to work together putting our stories before the decision makers.
I’m proud that my story was also published on National Pain Report!
http://americannewsreport.com/nationalpainreport/my-story-the-dark-side-of-the-anti-opioid-campaign-8823978.html
Chloe,
I too am very happy to see your well-reasoned story appear on National Pain Report. Stories like yours and the many appearing on this blog will be hear. The challenge of course is getting regulators and journalists to listen in large numbers. All that is necessary for evil to prevail is for innocent pain sufferers and providers to do nothing. Or as Edmund Burke put it, “All that is required for evil to prevail is for good men to do nothing.” History has certainly shown us this, for example in the case of WWII.
Opioids aren’t for everybody but certainly it isn’t true that they’re for nobody.
To say that with 100 million people having persistent pain, an argument that any therapy is for everybody or nobody is too incredulous to say the least.
Keep you chin up and let’s keep these stories coming!
Thanks for the encouragement, Dr. Fudin.
Perhaps if we had a petition to count our numbers, it might help with the challenge of “getting regulators and journalists to listen in large numbers.” Thousands of organized people are much harder to brush off than a handful of lone voices. (Also signing a petition is a lot easier to get people to do than telling their stories.)
Maybe it could be presented on National Pain Day. Thoughts?
I am a 64yr old female who for over 30yrs endured severe headachesneck and lumber back pain. Headaches were diagnosed as migraines and every anti migraine pill was prescrible. I put up with the side effects of weight gain and constipation. My back was so painful I would get up out of bed and sit in the lounge chair from about 1am every day, this would sometimes help with the headache and back pain. 20yrs ago I told the Neurologists some how the neck was involved with the headaches and was told that was impossible. The pain in my lumber and the daily headaches were severe I lived with my husband and 2 children on a farm near a small country town, my resources were limited but my GP was good. When the pain was unbearable I would ring the local hospital and an order was there for me to have a pethidine injection.
5years ago I saw a rheumotologist for the first time he casually looked at old cervical x-rays and commented I had arthritis NO ONE had ever diagnosed this before yet I had had many x-rays CT scans MRI etc. I eventually saw a specialist who did Rhyzolysiz on 4 facet joints both sides lumber area and 3 facet joints both sides cervical area. This completly takes away my back pain for around 10mths when I have the Rhyzolysis repeated.
4yrs ago I delevoped pain in the ischial tuberosity region both sides, this now spread down into the hamstrings both sides. I cannot sit without severe pain. I have tendonitis and bursitis in so many areas including my groin which prevents me from sleeping on my side. I have been diagnosed by my rhemotologist as having chronic widespread soft tissue inflamation and prescribes OxyContin along with celebrix and cymbalta. This does give me some releif but sitting and sleeping is very difficuly. I would rather not take the oxycontin and would easly give it up if someone could give me something else to take the pain away. I dont like the look of my future for all I see is pain. I am not hanging out foe oxycontin in fact its my pain that reminds me to take the dam tablet. I live for the day I will be pain free
I am now 52 years old and was diagnosed with Lupus when I was 23, just after having my first child. The pregnancy was difficult and my health deteriorated throughout, the doctor told that some women just have a harder time than others. Before my daughter was 4 months old I had 8 of 11 symptoms of lupus and was finally diagnosed in May of 1985. The pain I have suffered these past 29 years has been mild at times and has also been devastating. My pain and lupus activity symptoms were ignored in 1988 and I nearly died as a result, the son I was carrying at the time did loose his life.
I have had to be on prednisone all of these 29 years to keep the lupus and its painful symptoms under control.
I was diagnosed with Fibromyalgia in in 1993, my life has not been the same since. The doctor I had at the time prescribed pain medication for three months and then he told me I would just have to learn to live wiith it. I had a breakdown in his office and ended up in a lock down unit at the local hospital. After finding my first pain specialist, I thought things would finally get better. Each appointment became more of a waiting game until I was waiting no less than two hours to see him. I finally gave up on pain doctors. I was in mental wards three more times before I found a good pain specialist in 2012 after being diagnosed with Avascular Necrosis in my hips due to chronic steroid use. My doctor is very conservative with opiods. He tests his patients randomly, makes them sign a contract stating that they will not be treated for pain by anyone but him; even in a hospital setting, and insists that his patients come into the office on a regular basis. Opiods are not the only weapons at the doctors disposal. I have had steroid injections for the pain I have from the Avascular Necrosis, nerve root injections, physical therapy, been treated by a pain psychologist, and see my psychiatrist on a monthly basis as well. I am being treated with antidepressants and even anti-anxiiety medication on an as needed basis. Thankfully, I have learned ways to calm myself when the pain becomes too intense and I rarely have to use the anxiety medication.
Treating chronic illness and chronic pain should be taken very seriously and the patient has every right to have access to all medications that can ease their pain. Unless one has lived with extreme pain near acute levels on a daily basis, they haven’t gotten the experience to decide which medications should be available to chronic pain sufferers.
If pain medications are monitored and patients are tested on a regular basis the odds of the patient becoming an addict drop significantly. It’s not the patients they need to be concerned about, it’s the easy access to these medications through illegal means that needs to be addressed.
This is definitely something that needs to get out there! My pain started in early 2006 while I was active duty USAF. I’ve run across the same reaction as a lot of others. I have small fiber fibromyalgia. The pain is 24/7, and it is intense. Without a combination of long acting morphine and gabapentin, I would not be able to function. From fall to spring, I have to take vicodin with those. The cold air adds another layer of pain in the skin of my legs on top of everything. I had a doctor (and I use that term loosely, which is sad because he’s a VA doc) tell me that anyone who takes more than 1 short acting pain med at a time is “after the high.” I’ve tried to explain that those who have a high, chronic, pain level doesn’t get the “high.” I’ve had docs tell me my pain is all in my head. I had a neurologist say “you have an aura of sadness about you.” Well no shit, I’M IN 24/7 PAIN.
I’m sick of the know-it-alls. There is a difference. There is opiod addicts. Those who are addicted to the high, and to the feeling it gives. Then, there is opiod dependent. Those who are in need of them to function normally in society. Those who are trying to overcome the short end of the stick. They work hard to try and overcome what is afflicting them. They DON’T WANT TO BE ON THE MEDS, but don’t have a choice.
I know I don’t want to be on that crap. I want to work. I wanted to stay in the US Air Force. I want to run and play with my 3 kids. I want to be there to teach them the usual dad stuff. It’s hard for me to tell them I can’t do something because it hurts. The heart break that comes with that statement is beyond words. I still do a lot of things that hurt badly. I pay for it dearly, in the way of crashing into tremors and high fatigue.
STOP THE MISINFORMATION!
My story began 6 years ago. Increasing pain and fatigue in my legs and arms. Migraines too. Doctor dx’d me with fibromyalgia. Lost my job due to this nasty conditions. Fibro fog and medication put my dental patients at risk. I was a dental assistant and loved my job! Had to move closer to family for help and farther from my kids. I get migraines 2/3 times a week that put me down. Having access to narcotics when I need them would prevent a lot of the migraines.
Having tried every pain medication under the sun with no success I finally found one that worked. I’m always told that narcotics don’t work on fibro. I’m here to tell you that they do! It’s a crock when doctors try and tell you this. I’m a veteran and I use the VA system. I’m allowed 10 pain pills and they have to last me 3 months. I get no refills without asking my PC to refill the medication. I have to be very choosey about taking them. This means I go thru many days in extreme pain. My quality of life sucks. My day ends near noon everyday due to pain and having to rest. Not easy for someone who loves to be outside. My hobby is gardening and working outdoors. Raising chickens and vegetables for a self sustaining life style. Not easy to do when your day is 3/4 hours long.
Doctors should be allowed to treat patients as the patient needs. The government should not restrict the doctors like they do. It’s wrong! It’s wrong to punish those in need for the few that abuse the system. Restricting doctors from doing what they took an oath to do is wrong in so many ways. Brain washing doctors to believe that chronic pain is not helped by narcotics. I’m sure the studies have been backed by the government and records altered. I don’t trust the government we have right now. The system is not working as it was intended to work. But, that’s a whole different topic that I won’t get into.
I hope these stories reach the people who need to see them and can change the restrictions placed on doctors to provide care that is needed. I hope the quality of life can be improved for those suffering in pain like myself. There may be fewer people that become addicted to narcotics but I’m sure the national suicide rate will go up. People who want to abuse the drugs can get them easier than those of us who need the drugs. Restricting the doctors is not the answer.
Thank you for giving me the opportunity to voice my opinion.
I so agree with your statement.
I do not understand why ‘they’ say that opioids do not work for fibromyalgia.
‘They’ also say it doesn’t work for nerve pain. I can attest that opioids work for both, I have nerve pain & someone I know has Fibro & requires a low dose opioid.
I think ‘they’ just want to believe anything to keep people from taking anything that has an opioid in it. Such stigma ‘they’ have created. & yes, brainwashed physicians into thinking opioids don’t work for certain kinds of pain. Next they will start saying opioids don’t work for a broken leg.
I say, people do not have Cymbalta receptors, they do not have Lyrica receptors, they do not have Acetaminophen receptors, or any other receptors. People have opioid receptors for a reason!
Sure, some of those drugs may work for some. Most respond best to opioids, even very small doses work better than the other choices but ‘they’ would rather risk all kinds of crazy side affects than to have someone getting better relief from an opioid.
Fear, fear, fear. Just because some choose to abuse. The ‘some’ that choose to abuse, as you point out, will always, always find a way to do so.
I too hope the people that *need* to see these stories do see these stories.
I hardly know where to begin. I’ve spent over 5 years with debilitating pain and mobility issues which has been treated with nothing more than 600 mg of Ibuprofen three times a day and a mild muscle relaxer for spinal stenosis, osteoarthritis, T10-11 bulging disc, and severe SI Joint Instability. At times the pain got so intense I’d scream, thrash, cry, and at least see stars if not totally pass out and would get an ambulance ride to the emergency room. They’d give me a low dose of IV valium followed about an hour later with Toradol then send me home “to rest” with no relief at all. If it took an ambulance to get me there imagine what it was like for me and my family getting me back home by car in the same condition. At one point I was sent for physical therapy, but because I showed too little improvement within a certain time frame Medicare would no longer cover it and they stopped it. When things first started they tried me on Lyrica, Cymbalta, Neurontin, and gabapentin but they did nothing for the pain so I was given the ibuprofen and a mild muscle relaxer instead. Those didn’t help either. They’ve since (three months ago) stopped the muscle relaxer because when the still pain wasn’t addressed after five years time and got to the point it stayed between 8 and 10 on the pain scale I felt desperate and I had to try to do something myself and so one day although never a drinking person I started slowly consuming 1/2 ounce of rum every 30 minutes to an hour. I should have been at least tipsy if not outright drunk but the pain was so intense that it was over riding the rum until I got to the point where I had consumed an entire liter. Then the pain dropped to 7 and suddenly it didn’t have enough pain to fight up stream against and I don’t recall much after that but I’m told that I decided I’d started taking my muscle relaxer again and my family didn’t know if this was dangerous nor could I tell them how many or how many times I’d taken it right before passing out. It was orphenadrine. I knew better than take any such meds with alcohol and since they weren’t working anyway hadn’t taken any for several weeks before that. Why bother when it hadn’t done a thing to help in nearly a year if not longer? Anyway, thanks to that particular desperate attempt at self medicating I got a trip to E.R. for alcohol poisoning. Blood work actually didn’t show any drugs otherwise but they still told my regular doc I’d attempted to OD even though my family stated that wasn’t the case. Although I will admit I can certainly understand why somebody with severe untreated pain would do so. Thus, I was given a slap on the hand so to speak and the muscle relaxer discontinued. Told them it wasn’t working and I’d stopped taking it anyway long before this attempted self medicating incident and wouldn’t have taken it
then if things hadn’t gone so far south that I was incapable of thinking normally. It was a few months later when I again raised hell with regular doc about unresolved pain issues that I at least finally got a referral to a pain specialist who diagnosed and began treating the SI joint pain with nerve blocks. At no point did I ever actually ask for opioids…only that somebody do SOMETHING to help the pain. If they had prescribed them though I probably would have faired better. As a teenager after falling off of a cliff and then being hit by a drunk driver less than two years later I spent nearly 4 years on a narcotic pain killer and a strong muscle relaxer while recovering and never developed any addiction problem. I lived a very normal life afterwards without need of such medications and had a nursing career that included lifting around on 350 pound patients without any trouble at all until a little over five years ago when the current pain problems began and I’ll be 50 years old in a couple of years. I hardly fit the profile of an addict. If I were such a person I think I’d have gone looking for pain killers on the streets long before sitting around like a decrepit geriatric patient and totally housebound other than doctor appointments with nothing more than ibuprofen for over five years for such severe pain as I’ve had. If I hadn’t been so incapacitated and had been able to afford it (hard to hire lawyers when you’re on disability) I probably would have taken my case to court in an attempt to force somebody to help me. The thought crossed my mind more than once over these last five years. And it was most definitely criminal to be sent home from an emergency room in the exact same condition (screaming, crying, seeing stars, passing out from pain) not to mention that it required an ambulance to me get there then they expect my family to get me home. At least something is being done now though not with medications but as long as it takes care of the pain that is perfectly fine. But it is ridiculous what has been happening with health care regulations in regards to pain management. I used to be a registered nurse for many years before my own battle with pain and mobility issues began and we never used to treat patients with such cruelty. Sad to say but animals are treated more humanely than people now!
Reading this article, this 1 article, practically brought me to tears. My name is Nicole and I am 23 years old, in the past 2 years my life has changed so dramatically, this is my story:
I’ll start off with a little background. I am a daddy’s girl, always have been as I was never able to get close to my mother, but that is another story entirely. I live with my dad and we are so close. I take care of him and he takes care of me. I know most kids aren’t trusted by their parents like he trusts me, but he raised me right. I usually cook and clean and do the shopping and I take care of all the phone calls that need to be made, pretty much everything. We had a good rythem, so as you can imagine when he was diagnosed with pancreatic cancer, our world came crashing down. This was in November of 2012. Once this happened, I was in charge of his Dr appointments and anything that went along with that. Why am I telling you all this? Well it ties into my story, I promise.
Here is where my medical issues started. In May 2013, I was sent to a pain specialist for my back pain I’d been having. I attributed it to my broken bed I was sleeping on at the time or the 8 hour shifts I had worked. Little did I know at the time, but this Dr was going to be the first of many to put me through hell. I know it may seem dramatic but my quality of life has gone down significantly. This Dr., we’ll call him Dr.X. He ran some tests and gave me cortisone injections and different types of pain medication and sent me for an MRI. I was told that I had severe back spasms and a slightly bulging disc. He insisted on doing a lumbar epidural ejection to which I agreed to do. I trusted him because he was my Dr. , so I didnt think twice about it. I was happy, he told me this would make all my pain go away. Before the procedure I told him that I was born with a high tolerance to anesthesia, narcotics, and even novicaine. As was my dad and his mom. I had woken up during some surgeries when I was younger due to my high tolerance.( I wasn’t given enough anesthesia). When I was on the operating table, they administered the anesthesia and pain meds. I told him that I was still awake and that I didnt even feel dizzy or light headed. I told him I could still feel everything. He then replied “well lets just proceed anyways. ” he then lowered the two very long thick needles into my back just centimeters away from my spine. Tears rolled down my eyes and all I could do was lay still until it was over. By the time they rolled me out, my pain had tripled. A week later I told him just that. He flipped out on me and ask what was wrong with me. He asked why am I giving him attitude. (My boyfriend then stood up and yelled at him cause all I had asked him was if he was sure this is the right treatment for me. I was crying in the room. I never yelled once.) He then said he was not my dr anymore. He gave several reasons why and of course being drug seeking was one of them. I then told him he had to abide by the opioid contract that he made me sign several times. It said that he had to give me 2 weeks of the medication he put me on and also a referral to a new dr. He did just that. In the month that I had been his patient he lied to me and put down wrong things on my file and ruined my medical file to this day.
Fast forward a bit to the 3rd Dr. I was sent to. We’ll call him Dr. M . He told me that if he had seen on my referral to him that I had been treated by Dr. X, he would have thrown my referral in the garbage. I told him my experience with Dr. X and he said that I wasnt the only patient with this same story. I cried because I felt absolutely helpless. I was also seeing my primary care dr at this same time.(we can call her Dr.F) During the 2 months I was a patient of Dr. M, I had an unrelated medical issue. I had severe abdominal pain. It was a Friday that I went to the ER. They dismissed my pain as gas and sent me home that night. (Around midnight). I awoke early Saturday morning (around 3:30 am) with the severe abdominal pain. It had gotten worse so naturally I went back. I was mistreated by a nurse who asumed I was faking it so I could get drugs. She cussed at me and then when I asked to leave (because I was not getting any attention) she ripped out my iv the opposite way it had been put in. I then went to another nearby ER. They were taking great care of me and were about to run all these test to figure out where my pain was coming from. I told them everything I knew including I had just left the first hospital. They asked if they could call them to get the results of any tests they ran on me. I agreed. After they got off the phone with them, I was told it was probably just gas and that no tests needed to be run. I was once again sent home. I tried to push through due to the fact that I felt like I had no where else to turn to for help. About a day later so lioe Sunday going into Monday morning, I started to discharge blood. (Sorry if its too tmi). Worried, I once again went back to the first ER. I was terrified and in excruciating pain. I was then greeted by a Dr. He explained to me (as I sat I the hallway on a chair) that he could lose his job if he treats my pain. He repeats several times that if he treated me, the whole ER would be shut down. He said that I needed to get off the drugs and that they dont give patients with my problem, any pain medication. That its against the law. In pain and now sobbing I called my dad and explained everything to him.I also called Dr. M and he called the ER a d ddemanded a pt test….what he told me should always be administered for any one who comes in with abdominal pain. Shortly after the scan, the ER Dr comes in and reads me the results: I had an ovarian cyst rupture twice.
It was then when I realized that my records had been tainted. On my medical records it says I have my appendix removed, I still have it. It also said I took 9 narcotic pills a day, I didnt and dont. And when I asked them to change it, they said they couldn’t. I realized how I was perceived, in the eyes of all the Drs, all I was, was another druggie.
Fast forward a bit, to where Dr.F (primary care) had gotten me in to see stanford drs. I was seen by 2 pain specialist there. Short version? They told me it was all I my head and that I need to get off the pain meds for 6 months to clear up my record. I was told that because im 22, I cant be given pain meds. That ill abuse them. They sent me to multiple physiological drs and each one came back with a clean report. They couldnt find anything wrong with me psychologically. But that didnt keep the drs from saying the pain was all in my head.
Fast forward to September 5. This was the day of my dads Whipple. Its a major surgery for pancreatic cancer. That day I was at the hospital all day long into the night. As I was going to my car I did one of thoes double steps that happens sometimes and almost fell. All of thee sudden I got the worst pain in my hip. I couldn’t put any weight on the leg. I saw my pain Dr. The next day. (This was a new pain dr, but he is the one I currently see. Lets say his name is Dr.A. ) I told him everything. He acted as if he cared but he to had the same opinion of me. He explained to me that, aftter seeing the very first MRI of my back, that there was no reason I should have ever been given that epidural ejection. That there is supposed to be a medical reason visible in order to have that procedure done. And I didnt have one. I was told this by a few drs, along with the fact that it was done wrong. For the next 6 months he was trying to diagnose me with my hip pain. Every appointment was a fight. Him saying I was drug seeking and me telling him that something was wrong. He screwed me over more times that I can count. But I wont go into the details. This novel that im writing is already long. Just know that the list included; cussing me out, calling me a liar, him writing me a prescription and then canceling it as soon as I left so I looked like a liar to my local pharmacists. , yealling at me, telling me that I had only 2 options and they are I either do what he says or I go and find a dr to get me m9re drugs like I want. Yup he said that exact thing.
So fast forward to now…well I was finally diagnosed with Ehlers-Danlos and hip dysplasia. I needed major hip surgery called a PAO.
So why did I mention my dad?. Its because I would have given anything to not have these health issues so I could be there for my dad. So our medical bills wouldnt have double between my dr visits and procedures and his treatment for the cancer. I would give anything to be able to work so we could have enough money to pay the dr bills. Why would any one give up all of that just to have some pills? I dont understand why anyone would want that. But to most drs ive met, to them…im one of thoes drug seeking son of a B****es that screw the system just so they can get high. I want my story out there. I am not one of thoes people. As a matter of fact I hate those kind of people. Because of them, I suffered for so long before I got the surgery I needed. Because of them, I suffer with pain on a daily basis , terrified of the day this dr turns his back on me. Because of them, my dad and I are up late at night wondering if we will make it this month financially. We moved into this house in 2009. My dad worked hard for this house and now we may lose it all. I did my best to get the basics of my story out there. But this doesnt even begin to show everything. I will answer any questions a d reveal any details, just please get my story out there. Not just for my dad and I, ut for the thousands of others that this type of thing has happened to and is happening to right now. This has to stop. Where are you supposed to turn to when drs do this. We are told to go to the ER or to the Drs if we are sick or hurting. What happens when those drs treat you like crap. How do thoes people get help. Who helps the ones who aren’t faking. Who do we turn to?
Nicole,
I wanted you to know that I do understand what you are going through. All of my chronic pain issues started at the age of twenty-three, from a work-related injury. So believe me, I know what it’s like to be discriminated against and dismissed by the medical community.
When you are a chronic pain sufferer you are often treated horribly, by the very people that are supposed to be there to help you. In medicine, one would assume that the younger the patient is, the better the care would be, but with chronic pain the rules change drastically! This is just one of the many problems we are face with, in the broken system, that is health care.
I’m sure you have had those in the medical community say to you, “…but you are too young to be in this much pain…etc.” These are meaningless and thoughtless “cliches,” that make no sense. Yet, many physicians still use them, just like the famous line, “…it’s all in your head.” I have found that in medicine, this type of backwards thinking is prevalent throughout the eastern half of the U.S and especially in the northeastern part of the country. Many in the medical field continue to believe in myths and stigma, instead of evidence based medical findings. Thankfully, there are those that form opinions based on reason, science and understanding. They are physicians who have a tremendous amount of compassion for their fellow man. We owe Dr. Fundin and physicians like him, a great deal of gratitude for helping chronic pain sufferers fight for proper care, amid such adversity and ignorance!
The many forms of neglect and abuse you have been witness to Nichole, is practically the normal “standard of care” for those who suffer from chronic pain. Skepticism, judgement, ridicule and dismissal of chronic pain seems to be ingrained within medicine. Astonishingly, the system actually promotes and even rewards this kind of mistreatment and lack of proper care!
The emergency room (ER) is by far the worst! If you have “chronic pain” on your medical record, it is no different than having “drug addict” tattooed in big, bold, lettering across your forehead. These kinds of false accusations lead to a reckless disregard, by the medical staff, for the patients well-being. The further delay in treatment could cause any number of serious medical complications, even death! Since there is no real accountability, legitimate chronic pain patients often fall through the cracks.
A fellow chronic pain advocate and trusted friend Carol, came up with a great idea, when discussing the poor treatment of those with chronic pain in the ER. Set up an “emergency care protocol” with a trusted physician. It can be with your primary care doctor or pain management specialist, whomever is competent and trusted by you. This protocol would be an emergency plan, so that if you have an urgent medical condition, that needs immediate attention, a plan is in-place so that the ER personnel will not ignore or dismiss you. The plan should include you calling your doctor and your doctor notifying the ER ahead of time, so that you get attentive and proper treatment! I believe every chronic pain patient should adopt this measure to safeguard themselves from having a catastrophic event happening to them at the emergency room.
Also, try to immerse yourself in all the information out there about Ehlers-Danlos syndrome. It is a very complex condition that comes with all sorts of complications. You need to know as much as possible about it and try to find a specialist for adequate medical care. You may find yourself having to inform your physician about your condition because Ehlers-Danlos is still a relatively unknown diagnosis by many. Believe it or not, some physicians do not “believe in” this condition, much like the stigma of “fibromyalgia” and other chronic pain conditions, at one time or another. Just one more reason why we desperately need more education and awareness about chronic pain in society and a fully funded “Institute of Pain,” devoted solely to chronic pain research.
Remember, the best advocate you can ever have is “You!” That saying is true on so many levels. In the world of chronic pain, educating yourself, is the key to your very survival. Never let anyone tell you differently!
Best regards,
C.M. Phillips
Indeed, the “pendulum has swung too far”! I cannot believe this is happening but we have no choice but to fight it. Thank you for all that you do to help us.
In 2008 I donated my kidney to give back “quality of life” to a man who was living off a machine to keep him alive. I watched my own father suffer through kidney failure, and how his life was slowly being robbed from him. No one should EVER have to live a life of just merely “existing”. It’s not enough to just be “alive”. One must be allowed to actually “Live”, and in order to do so, there must be “quality” to that life.
Ironically I donated my kidney before my body started to fall apart on me. Starting at the age of 31, my back started to have issues. I am now 36, and have since had 5 spine surgeries (both lumbar and cervical), 3 of those surgeries being fusion surgeries.
Now that I only have one kidney, I cannot take any anti inflammatory medications, or nephrotixic medications. I am very limited to pain management medications, but I tolerated vicodine well and used to be able to have access to this prescription to (at the very least) tolerate my pain. I remained on the same dosage for 2 years, never increasing the dosage, or abusing my 30 day supply of my narcotic pain prescription..
Ironically now, the only little relief I had from pain has been taken away from me, and there is very little quality to my own life now. I went from working a full time job, to now living on disability, in which I am very ashamed of. To further add insult to injury, I have recently discovered that I have a genetic disorder concerning a collagen deficiency, in which there is no cure. It has been explained to me that my future will consist of multiple surgeries still to come, putting me pack together, as the strings in this rag doll body continue to fray and fall apart.
I stay active with swimming, I eat healthy, I do all that I am supposed to be doing for someone in my condition, who is typically 30 years older then I am now, but I am not 30 years older then I am!! I can only function every other day, and at 3 hours at the most. At my age, this is extremely difficult to be so actively idle… But my body decides for me what I can, and cannot do. I have no say, or control over the matter. My pain medication at least allowed me the ability to function on a limited, but acceptable basis. This is far from the case now, and my life has dramatically changed, and further declined, since this law has gone into effect.
When I was on vicodine, I could at the very least function every day, for maybe 5 hours…. But that is just not possible now.
I just had my 5th spine surgery, my 3rd cervical fusion, and I was prescribed ONE WEEK of pain medication. For those who arnt familiar with what a fusion surgery is, it’s a procedure where they remove a disc from your spine, and implant fake or donated bone in it’s place, and hold it all in place with metal plates, screws, and rods. It typically takes 6 months to a year, for that fake or donated bone to “fuse” together with the vertebra above and below where the disc was removed. For me, it took 2 years for the 1st cervical fusion to finally fuse, and a little over a year for the lumbar fusion to heal. It is a termendous amount of inflamation and pain, for a long period of time.
Now my third fusion that I just had last week, I’m expected to live through this fusion process with no pain medication at all. I honestly don’t know how I’m going to get through this year, and maintain sanity.
I would donate my kidney 5 times over then go through another fusion surgery, if that demonstrates at all, just how painful this procedure, and recovery is from this procedure.
Not everyone has 2 kidneys, so if you hsppen to be one of those people, you are simply out of luck if your in need of pain management. That is now the law…. And it’s not a very smart one.
For anyone who doesn’t understand chronic pain, my best description that one might be able to relate to, would be like having a tooth ache. It’s constant, and there’s nothing you can do to take that pain away until you get it fixed. Now imagine that there is no fix to that tooth ache… And you have to learn to just “live with it”. Let me know how excited about life you are after just one week living in that kind of pain. Let me know how your outlook has changed after being told that there is NOTHING that anyone can do to fix that constant tooth ache. Exercise, heathy eating, ice…. Those “remedies” only take you so far…. They are “pieces” of pain management, but far off the radar from actually being an acceptable form of pain management alone.
It’s not right. It’s ludicrous really.
I will never regret donating my kidney, and giving back quality of life to another human being, but it is ironic, that now my quality of life has been taken away by an u fortunate genetic disorder, and comicated further by this new law. because of the medications I am limited to due to my generous gift and act of compassion I have given to another, I am judged by many, with preconceived notions about my motives for wanting to have just a little relief of my pain, and it’s all stemmed from the overwhelming, misinformed, and ignorant sound bites flooded in the media, all in the effort of creating more hate and prejudices against our fellow human being.
My doctors hands are tied, and they cannot help me because of this law passed, and the ones who really care, and know my medical history, are just as frustrated about this new law as I am. They agree that it is just simply WRONG.
If I were a dog, I would beg to just simply be humainly put down. Unfortunately, no such compassion exists for us mere mortals who struggle through life with chronic pain… Rather due to lobbiests who get rich quick with politics and getting absurd laws to pass in the house, and who must live fortunate lives with no pain or suffering, ever, decide our fate. Us “low life opiate addicts” that we have become coined as, are just trying to hang on to life, only to exist in pain.
Please explain to me how this law makes sense, and exactly, how it solves the problem in which it has been pitched to the public to remedy? I have many more questions, but I’d like to just start with that question first.
May you always remain immune from a life of pain. I am decent enough to still hold on to my compassion towards others. It’s a shame so many others have lost that grand quality.
Actively idle, and with all my pain,
Your brilliant creation,
-Carrie L. Wesp
I worked for 20 years in the IT business, and was a church musician for 30 years. Four years after becoming a dad, my health took a turn for the worse. Turns out I have a genetic connective tissue condition that makes all my joints too loose. This of course causes stupefying body-wide pain. After three years of diagnosis, brain and spinal cord surgery and beginning pain management, I am finally at the point where I can manage my malfunctioning body and contemplate possibly returning to work, with the support of assisstive technology and the ADA. Unfortunately, that would be completely impossible without pain management. My daily dose is at the high end of the range for this particular medication. Is it an opioid? I don’t know. I shouldn’t have to care. The only thing I know is, it is safe and effective, and with it I can function enough to be productive, but without it I cannot.
As a 47-year-old white male, I feel very lucky that the medical establishment takes pain complaints from my demographic more seriously than from any other, and manages pain levels in my demographic better than in any other.
There is a fear campaign going on that ends up acting as anti-pain medication. The needs of actual patients cannot get lost in that noise. I have read the absolute horror stories of people whose lives are ruined because of poor implementation of unsound rules based on incomplete policy regarding over-regulation of medications. If you want people with chronic pain conditions to actually return to the workforce, then you’re gonna have to help enable that by putting in reasonable controls were necessary and not where not. Just don’t make decisions, especially for other people, out of fear. The whole question is not a moral issue in the first place; it’s a medical issue.
Agreed, and Nicely said! I don’t know your demographics, but at this point, I’ll move to anywhere that will allow me to LIVE my life and function in the best capacity that I can, in the least amount of pain as possible. My state has completely made that life impossible for me. It’s bad enough feeling oppressed, living on disability, but now I’m forced to live in pain too? Why?
If there’s abuse out there, it’s certainly not by the people who take these medications in order to function, and have some sence if normalcy back in their lives.
That would be like closing all the banks for everyone because of the people/corporations that engaged in ponzi schemes, inside trading, the whole banking FAIL….all the illegal actions that took place…. It’s the same concept, only, the banks and people who were the ones commiting crimes, and devestated many lives, were….spared? But if your in pain, and the only medication that works for you, or the only kind you CAN take due to only having a certain amount of a particular organ in your body that cannot process alternative medications, but the one that does, and has been working for you happens to have this “scary” ingredient in it…Sorry… Go fish? Insanity.
How is this absurd scenario not blatantly obvious to the masses? How did this house bill get passed without more demonstrations against it? Oh yeah… It’s because we’re disabled! Kinda hard to get out there and be heard, if it’s difficult enough to just to put shoes on without hurting ourselves, or even taken seriously about a chronic pain condition that doctors are not very educated about. Just saying….life is hard enough already… And now we have to basically go to war… In our condition… In pain…. Just to knock some common sense back into some heads? I all ready feel defeated….
Dr. Fudin, thank you so much for providing this forum. It is so important for this perspective on pain management to be heard. I have Ehlers-Danlos Syndrome hypermobility type, migraines, have had a few ovarian cysts and many issues caused by EDS that have needed to be managed with opioids over the years. It has been a nightmare. I have had to switch insurance companies because of something one doctor who misunderstood me put in the computer for every doctor who treated me, to see. Once you’re branded by one doctor, that’s it, it’s over. I had major hip surgery in 2009 and the recovery was awful. It made my hip more stable and I was able to bear my full weight on it, but I had more pain after than I did before the surgery. My pain was managed well before the surgery and for a while after. Then the surgeon wanted my PCP to take over pain management. He gave me one 30 day fill of what I had been taking for about a year. Then he went on vacation and the on-call doctor refused to refill it while he was gone. I talked to his MA and tried leaving a message, in hopes of clearing the issue up. It was completely mis-stated by the MA. So when I tried to explain it to my PCP when he came back, he wouldn’t even listen. He had made a decision based on wrong information and labeled me a drug-seeker. He told me he was already uncomfortable prescribing narcotics long term to someone so young before the, “incident,” and the incident just proved he was right. He was SO wrong. He put a note in the computer that came up as a warning to any doctor that pulled up my chart, wether it be in a regular office, physical therapy or the ER. And once that was there, every doctor who talked to me was condescending, talked to me like I was lying about everything and refused to give me anything stronger than 800mg Motrin. I switched insurance, but I had to wait for months until the next open enrollment at my job. I eventually found a doctor with my new insurance who was willing to put me back on the same narcotic rx and dose I had before. Finally. I was finally able to leave the house for more than just dragging myself to work and dropping off/picking up my son at school. That doctor had me on a very strict pain contract and was hesitant to do it at all, but at least I was back to having a somewhat decent quality of life. It still wasn’t pleasant and my pain never went below a 6, but it was an improvement. 3 years after the surgery, my hip finally began to feel better. I was finally able to be comfortable enough with just Motrin. So, I stopped taking the narcotics on my own with 3 refills available to me. I think that is one of the biggest misconceptions of doctors. I feel like they think I WANT to be on narcotic pain medication. I would give almost anything to not need them to be comfortable. For so many reasons. Anyway, I was ok with just Motrin aside from the occasional joint dislocation or other injury that required a short term narcotic medication treatment, for about 2 years. Then I had another major medical issue come up involving kidney stones and some other yet-to-be diagnosed problem with my kidneys. For the past year, I have been passed around from specialist to PCP to specialist and back again. I finally got a pain management doctor who is willing to prescribe the medication that works. The only medication I have tried (which is a lot,) that works. But as nice as that is, I feel like he thinks now that I have what I want, he can stop looking for the cause of the pain as actively as he should be. This is not the case. I want to figure out the cause so we can treat that, instead of the pain, and I can stop taking narcotics daily. For the last year or so, I have not left the house aside from doctor appts and the occasional trip to the grocery store on a good day. I am getting the medication that works, but not nearly enough of it. I do not have depression or a history of addiction. In fact, quite the opposite with having stopped on my own in the past once I realized I no longer needed it. Aside from my pain management doctor, every single doctor I see makes me feel like they think I am a drug-seeker. Adding to the issue, is that I used to work in the medical field so I have a very solid understanding of what medications are available, which ones work for me (due to having lived 33 years with chronic joint pain and injuries,) what doses they come in and medical lingo in general. So I feel like I can’t win. If I don’t speak up and speak their language, I don’t end up getting the treatment I need. But if I do speak up and speak their language, they treat me like I know these things because I am a manipulative drug-seeker. The current reason I have for needing daily narcotic pain meds is hopefully going to be fixed. But even after it does, I have chronic joint pain and frequent injuries and the pain has only gotten worse as I get older despite all of the alternative therapies I have tried, such as yoga, meditation, distraction, reflexology, acupuncture, herbal remedies, homeopathic treatments, diet changes, you name it. The only thing I have found that gives me some quality of life, the ability to leave the house for any length of time, participate in my children’s lives, etc, is a combination of a particular opioid and an anti-inflammatory. All medications have side effects and some of the side effects for non-opioid meds are just as bad if not worse, than those for opioids. Regardless, if I have some say in the matter (it being MY body and life and all,) I choose what works and allows me to live my life, over the courses of treatment that make me feel drunk or very sedated, are less effective or simply don’t work at all. I don’t feel like we as patients have nearly as much of a say in this as we should. Give me the information so I am sure to be making an informed decision, and let me choose. People are given a choice in many cases to have elective surgeries that are very risky, so how is this any different? It is disappointing, to say the least, that doctors have been swept up by the media’s one-sided coverage of this issue. They are educated and should use their knowledge and experience to decide for themselves how to treat patients as opposed to falling prey to the emotions intentionally evoked my media stories of individual tragedy. There is a reason these medications are around and I am thankful to live in a country where they are abundant and available. I feel like if I have insurance and live in a first-world country, there is absolutely no reason why I, or anyone for that matter, insurance or not, should me made to suffer when there are things that can help so readily available. I hope someday, someone invents a machine that allows a doctor to plug in to a patient’s body and feel first-hand the pain we are in. I would like to see my doctor try to survive just 24 hours with my pain and only taking Motrin! I have been dealing with/fighting with doctors about pain medication since I was a kid. I wasn’t diagnosed with EDS until I was 16. As a young child who played a lot of sports, I had many dislocations and other injuries over the years. I was first accused of being a drug seeker as a 9 year old. I was in the ER after having dislocated my knee. The problem was, I had managed to put it back in on my own before I got carried off the soccer field. But there was so much pain and swelling even after the joint had been reset, my dad took me in to make sure there was no other damage, and for pain control. The doctor didn’t believe us that it had dislocated at all and told my dad I was probably being dramatic so I could get narcotics. He said that because I had had them in the past, I was most likely already addicted. Seriously? Who says that to a 9 year old kid?!?! Anyway, sorry for jumping around so much. This issue has been such a huge part of my life for my entire 33 years on this earth, it’s difficult to concisely and thoroughly explain. I can’t possibly write down all of the times I’ve been under treated or denied treatment completely wether for a dislocation, other injury, migraine or other ailment. The bad experiences with doctors and pain meds far outweigh the good. I am ready for that to change and so thankful there is a venue in which to start voicing the stories of chronic pain sufferers who need and are capable of using opioids responsibly. Thank you!
Hello All,
I am so happy that I found this site. I am a 35 yr old Disabled Veteran and Chronic Pain Patient. I have 4 anchors in my left shoulder and nerve damage from the surgery 10 years ago. This unrelenting pain caused my severe cervical spine problems to go undiagnosed for years. Finally 3 years ago my PCP listened to me because I was sitting in his office crying because my head hurt so bad.
I was diagnosed with 3 herniated cervical discs, and one bone spur. Of course, being the VA, we must try all conservative treatments first, nothing worked and they waited two years and until I could no longer feel my thumb and forefinger of my left hand and my left arm would just “fall asleep” for no reason and the headache just never went away. New MRI shows 4 herniated discs, 3 bone spurs and one of the discs was severely compressing my spinal cord and nerve roots.
Cervical ADR(Artificial Disc replacement) surgery was scheduled for 3 months later, then cancelled(due to Surgeon availability) and rescheduled for 4 months later(total of another 7 month wait time). I was informed that this surgery had 50/50 chance of helping with my pain, numbness and headaches. I thought well if I have a 50% chance I should take it, I was so very wrong. For 1 year leading up to the surgery that MIGHT help with my pain, my pain was managed very well. This was because my Neuro Team was prescribing and I was never made to feel bad about the meds that I needed to continue to live my life as a wife, grad student and mother. Following the surgery, my pain was still adequately managed. But unfortunately, the surgery only took away my headaches. My nerves were permanently damaged because of the length of time they were compressed and now instead of 24/7 headaches I have a deep bone pain in my neck where the ADR was placed.
Fast Forward 4 months post op and I was pushed back to my assigned PCP and he was told to take over my pain medication. The first thing he did was change it something else at a different dose that did not work and then promptly went on Vacation, leaving me with no other option but to go the VA ER where I was treated like a Junkie until the patient advocate came to help me. He contacted my PCP’s Boss, the Chief of Staff and they filled me enough of the meds that worked until my Dr got back. He got back and filled my meds one time and since I had moved a few earlier pushed me out of the clinic I had been treated at for over 5 years. I asked if I could please be seen at the VA’s Pain Management clinic and I was denied because they will not take patients already on Pain meds, WTH?
The past 3 months have been pure hell and I finally contacted my Senator and I got approval for Fee basis care at a local civilian PM Clinic, my first appointment is next Monday and I am scared to death that I will have to suffer this pain for the rest of my life with no help and no support. I still have 3 other herniated cervical discs to deal with on top of the pain from the ADR. I don’t want to live like this and I feel as if a piece of my soul is dying every time I have to see my PCP and she makes me feel like a Junkie.
I am building a website as forum, support, and research site for Veterans in Chronic Pain. The VA just passed a new policy to get ALL veterans of Pain meds, no matter their situation. This is cruel and unusual punishment in my eyes. But the VA is famous for its Blanket polices and if all the public ever sees is the one side of the story where a Vet killed himself by OD’ing on his pain meds and they won’t share the stories of responsible Vets that get their lives back with these medications, then this war will be lost.
I hope this fight ends soon, or their will be many deaths that no one hears about because they won’t add anything to the media hype of “Pain Medications are BAD”.
People, please check out “Petion2Congress: First Do No Harm” and sign petition. There have been more than 7,000 letters and emails sent to Capitol Hill since earyly 2012. Again, what has been done for us? Or “to” us? Why must we fight for our constitutional rights? You all better buckle up and get on board!
Michele B.
I have already signed this petition and I have written to my Senators and Congresspersons. I am also working closely with an aid to one of my representatives. So I hope you weren’t yelling at me thinking I have done nothing for this cause, because I am doing everything I can. We need more personal stories, we need this page to get out to the many Chronic Pain Patients in this country. I am surprised that there are only 113 responses to this post.
Jenn
Thank you Jenn and all responders. Let me assure everyone that the right people are watching this blog!!! Your voices WILL be heard.
Dr Fudin,
I thank you from the bottom of my heart for this website and blog. 5 years ago this would not have been on my radar at all, how quickly ones life can change. The policy makers of this country might not be in pain at this time, but an accident can happen at anytime. Where would they be if suddenly they were suffering from daily debilitating pain and because of policy they were responsible for passing, they had no access to live saving pain medications? I live everyday in fear of my quality of life being taken away, and it has recently.
I am finally meeting a new Dr. next week and I hope and pray that I can get the help and medications that I need in order to live my life. I find it cruel that all of the true pain sufferers must fight daily for pain relief in a country where the medicine is so readily available. Thank you once again for your activism and support.
Jenn Schiavo
It is comforting that the ‘right people are watching this blog’, however as much writing as many of us have done, it is extremely aggravating that our comments seem to fall on deaf ears. Writing here & to representatives, petitions, & other blogs.
I am so tired of traveling 850 miles roundtrip just to see a doctor & get much needed medication prescriptions for a syndrome that is known to be one of the most painful syndromes known to man or woman, CRPS/RSD. It takes me at least 3 days to recover from this trip, lately upwards of 5 to 7 days.
I know change won’t happen overnight. It would be so nice to see some change in perspective from ‘the powers that be’.
I am calling for some of these ‘right people watching this blog’ to perhaps put up a comment in recognition of us. We are out here. Unfortunately, there are probably another hundred stories for every one that someone has written here, probably more.
The perspective of chronic-intractable pain patients needs to be changed in this country.
I thank you so kindly Dr Fudin for all of your hard work. I’m sure it is as frustrating to you as it is to us.
Carole
Jenn,
Yelling at you? Seriously??
I’ve looked for this petition & can’t find it. Thank you all for being so brave to share your story. I’m beat down, no hope.
Here it is Michele-
http://www.petition2congress.com/5202/first-do-no-harm-dea-targets-physicians-who-treat-their-patients/view/
And don’t give up hope, not yet, too much work to be done.
I am one of the migraine patients who DO need Opiates. As I have had migraines since 1956, I have been on a plethora of medications, some pain killers, some migraine medications. I have tried reflexology, acupuncture, acupressure, bio feedback, meditation, distraction, herbs with the help of an herbalist, Native American Medicine Man with herbs, healing cleanses and smudging rituals, elimination diets, not to mention pain classes. The only two exercises I’ve been able to do for the past 14yrs are walking and swimming/water jogging, due to four small migraine induced strokes which really affected my balance and coordination, among other things.
My first Neurologist, with the medical plan that I’ve been on since 1980, was outstanding. He diagnosed me with migraines at that institution, found out that I had migraine induced prinzmetal’s angina, migraine induced epilepsy, what medicines I could and could not take, took my case files, sans identification info, to Migraine and Pain Symposiums, and Conventions all over the world on his own dime, off and on for five years, trying to find ways to help me, (I’ve nearly died on a few occasions due to my migraines). On one of these trips he heard promising results about Stadol Nasal Spray. I’ve been on this medication now for close to 22yrs, with NO adverse side effects. It helps, but by itself doesn’t relieve enough of the pain. I’m not talking getting “Rid” of the pain, just getting it down to a “6,” on the Pain Scale, (0-10, with “10″ being the worst pain ever), a “3″ would be nice, but hasn’t happened since before 1985! So many migraine medicines that I’ve tried either don’t work, don’t work any more, I’m allergic to, can’t take due to other medications I’m on, or other conditions where they are contraindicated. I’m left with very few choices of those that are available. That wonderful Neurologist retired 8 or 9 years ago, and my primary who as also outstanding, retired 6yrs ago. My current doctor only recently referred me to a Neurologist/Migraine Specialist. I’ve had one meeting with her. Both medicines she thought might help, after I looked them up, are contraindicated due to other medical conditions that I have. There just isn’t much out there for someone like me.
My migraines are truly daily. I was medically retired in 1990, and won my Disability case in 1993, retroactive back to 1990. My migraines haven’t been below a “5″ in 25yrs. I don’t go anywhere, or do anything except occasionally grocery shopping, doctor’s visits, or going to the pharmacy for medications. I don’t see my friends (though we do chat on the phone or computer), I don’t go to church any more, I don’t go to any movies, once or twice a year I try to go out for dinner with my husband of 29yrs, but I don’t do anything else. I spend all day and half of the night using what “Little” medicine my primary doctor will allow me, (can’t get addicted to narcotics because you won’t have any “Usable” Organs left to harvest when your gone … BIG MONEY in that you know! Nothing left on this body, however!), plus using meditation, distraction, and or bio feedback … in my house, usually in my bedroom.
Also, for info, my father and his mother had migraines, my m,other, her mother and father both had migraines. My sister and I both have them, as do all four of my adult children. Just last December, my grand daughter, who was 3yrs at that time, had her first migraine. And so the story continues.
By the way, as of the “last” time I looked this up, the United States is the only county that does NOT treat “Pain” as a problem. They use some pain killers as they are treating the patient for their illness or injury. In other countries they treat Pain as a problem, and as part of the patient’s healing process, and we did once in this country too, and knew that patients in “Less” pain, (not Zero pain), heal more quickly and with less complications than if you do not address the pain issue. Why the U.S. has adopted the, “Eat only sunshine and rainbows, don’t use ANY medication, just think Happy Thoughts and you’ll be fine” attitude, I don’t know. What I do know, is that at one time we were leaders in Health, Medicine, Education, and Work Force for our people. Now, we are barely hanging on as a First World Country trying to play catch up with the others, because we are allowing powerful companies, industries (including Big Pharma) and MONEY to make our Choices, Rule our country and putting THEIR concerns first rather than putting our PEOPLE first, including our health and well being.
P.S.
Sorry for the rant at the end, but I just can’t understand anything else that would explain our failure on how we are treating our people over here, especially Medically.
Thank you Dr Fudin for your advocacy. These are scary times for those of us who battle chronic pain.
My chronic pain stems from two little known and INCURABLE autoimmune diseases, one being Mixed Connective Tissue Disease and systemic sarcoidosis (diagnosed 2000 @John Hopkins-mediastinoscopy). MCTD is a mix of 3 classic connective tissue diseases (Scleroderma, lupus, and polymyositis) diagnosis w/ high ANA titers and more specifically high levels of anti-U1-RNP antibodies (ANA & anti-U1-RNP antibodies present 2009).http://lupusmctd.com/index.php?topic=446.5;wap2
The timing of my illness corresponds well with the pendulum swing in opioid prescribing. In the beginning, even before I was diagnosed, my family doctor (of over 20yrs) prescribed Percocet or Lortab if between appts as no paper rx was needed). I cannot imagine anyone being prescribed these medications in this day and age a doctor just by taking a patients word for it w/out some type of proof in testing/imaging/etc. When he turned over his practice the new doctor was alarmed at the amount of narcotics I was taking (120 Lortab 10/500 per month) so I was sent to pain management. I eventually settled on a regimen of Ms Contin 45mg x 3 (no BT meds) for a year or so until my sarcoidosis eventually went into remission. I returned to school to earn my BS in geography and started teaching in the county school system as well as being physically active again. Fast-forward to 2008 I became sick again. The sarcoidosis was found to be active due to vitD/calcium dysregulation and kidney stones and the ANA and antibodies were found along w/ anemia and much inflammation (SED rate 72!)and kidney stones. This took some time to diagnose despite my former confirmed illness. My health has declined since this time despite treatments. I am currently taking prednisone, Plaquenil, and Cellcept.
What do these diseases do that cause pain? They cause one’s immune system to attack and destroy healthy tissue in the body at the cellular level. I was referred to pain management in July 2010 by my rheumatologist placed on methadone and hydrocodone for BT pain. In addition to these I took amitriptyline (nerve pain), carisoprodol (muscle spasm, muscles seizing up). Since titration my medications have not been increased. They have worked well and I have neither been asked nor have I asked to increase them in over 3 years.
My rheumatologist is located in a major medical center complex in Florida. I have been referred to their pulmonology, neurology, orthopedic doctor, and urology departments, most within their medical system. These diseases have caused autonomic dysfunction (urinary dysfunction, GI dysmotility, GERD and aspiration, tachycardia, anxiety/panic attacks/etc), muscle and joint pain, chronic pulmonary issues including numerous infections, inflammation, granulomas, ‘ground glass’, fibrosis/pneumonia/chronic bronchitis/peribronchial cuffing/etc), nerve pain/numbness in extremities, spondylosis in lower cervical/upper thoracic), vascular headaches, anemia, nausea, kidney stones, etc. I could go on but you get the idea, basically I deal with many symptoms and eventually had to seek and was ‘awarded’ SSDI in July 2012. One symptom I have not had to battle with fortunately has been pain. I have pain but it is fairly well controlled by medications, TENS, Depo-medrol injects, occipital nerve blocks, euflexxa for knees, My PM doctor never ‘forced’ me to get these done but rather offered me information about them, some I even asked for. Since I moved in 2011 I have transferred most of my doctors save for my rheumatologist who coordinates my overall healthcare. I have had little problems getting my prescriptions or having them filled and despite reading with trepidation about chronic pain patients woes I considered myself quite well insulated seeing as I was a patient of a major medical center. This all changed recently. I had throat surgery (laryngeal) to strip/remove growths from my vocal cords for biopsy (and because w/ them I sounded like a bullfrog). I informed my PM doctor and asked what to do if extra pain meds were needed. She told me to let the surgeon deal w/ them as it would be easier than another out of state Rx (I live in GA) from another doctor. I did not have major pain from the surgery itself but it sent me off into a bad flare-up that I could hardly move for a few days (combo of succinylcholine reaction and no pulse steroids given). On the day of surgery I sent my girlfriend to get my Rx (just hydrocodone 5/325 #30). When she returned home empty handed I called the pharmacy to find out why (though I wasn’t supposed to talk for 3 days). I was given several reasons. 1-too much APAP w/ other BT meds I had 2-insurance wouldn’t cover (never offered cash payment option) 3-it was from a doctor other than my PM doctor. After I asked why didn’t she didn’t just call the surgeon, hospital, or PM clinic and straighten it out I found out the real reason. According to the Publix pharmacist (a 3 yr customer, every employee there knew me by name) I WAS ALREADY ON ENOUGH PAIN MEDICATION AND I DIDN’T NEED ANY MORE!!! I asked her when did she become an MD? I asked that they transfer my Rx to the hospital pharmacy and I would pick it up the next day. The next day several calls to the hospital, no Rx sent. Called Publix back and was told that they wouldn’t accept it/fill it either and seeing as I only had one transfer she was ‘holding’ it for me. I proceeded to pick up my Rx and took it directly to the hospital (in cold Jan rain I might add day after surgery) and they were very friendly and had it filled for under $5 in less than 20 minutes!!!!! Were all the lies and judgement necessary? I had been a customer there w/ known disability for over 3yrs but was met with hostility when it came to evil NARCOTICS.
Fast-forward to April. I took my methadone rx to the pharmacy at the medical building where I’m seen by PM doc to fill. Was told that since I didn’t usually fill at this particular pharmacy, I usually fill at the main hospital pharmacy, that they couldn’t fill for me as they were separate entities and weren’t accepting any ‘new’ patients’. I took it to main hospital pharmacy and was told they couldn’t fill it either because it was written by a doctor in the R*** Bldg and I needed to fill it at that pharmacy. I told him I just came from there and was refused. There was about 30 minutes of back and forth between pharmacists on phone and behind counter w/ glaring glances in between. Finally yo-yo #1 comes back and says ok, we’ll fill it this time, like he was doing me a favor! I told him I had been a patient of this hospital for almost 5 YEARS! No matter, no guarantees as the DEA was limiting their supply and they had t make sure they had enough on had for HOSPITAL patients.
Quite disturbed by this development I contacted patients services and was referred to the director of pharmacies at the medical center. She listen rather unsympathetically to my situation then told me she would talk with the pharmacist and let me know something. 2 weeks no call so I leave message once then twice. NO call back, finally pinned her down by calling her assistant who informed me she was in office and would transfer me (wouldn’t be dodging me now would she?). I was told basically that I was out of luck. Reason being that my PM doctor was not a HOSPITAL PHYSICIAN and they had no binding responsibility to fill my prescription. Never mind that 1-The Pain clinic is located on the grounds of this major medical center 2-that I was referred there by my rheumatologist who IS a PHYSICIAN OF THE HOSPITAL. 3-That they had filled my Rx from this same doctor for almost 4 yrs 4- I am a current HOSPITAL PATIENT!!! 4-my PM doctor is only ‘affiliated’ with the hospital (even though his name and picture appear on the hospitals website). I told basically pleaded my case and was told she would call back. When she did (surprisingly) I was told that with the current situation with the DEA (“they are always watching”-her exact words) they were in a bind. She was sorry that it was affecting me in this way they just didn’t have enough to go around. She informed me that IF the pharmacy located in the Bldg housing the Rheumatology Dept and PM Clinic had ‘product’ on hand I could get my methadone filled there and at that pharmacy only. I must have lucked out as they had enough on hand on the 15th (had enough the month b4 @ both pharmacies too). After thanking the head pharmacist for filling my Rx she was very kind and told me it was no problem. (Seemed like it was a MAJOR problem to ME!). I then asked if calling ahead of time would help she informed me no it wouldn’t because at that time of month they run low so no guarantees. So apparently any new patients or those coming after the middle of the month are SoL!
To add insult to injury I have been drug tested (AI) every single month save one for the last 7-8 months. Prior time at PM clinic I was tested 2-3 times per year. When I asked if anything had shown up on any of my tests the nurse told me no that it was SOProcedure now and that they were ‘weeding out’ patients due to increase in ‘lost/stolen’ Rx, early refill requests, and constant requests for dosage increases (can vouch for that as the walls are thin and it always a topic of conversation). I told her I worried about false positives but was told they would send it out for another if there was anything questionable. Several months before I was told not they did NOT do this as false positives were very rare. I informed her AGAIN that I take Prilosec and Sudafed and both can show up for false positives for amphetamine and marijuana neither of which I use. She said it was duly noted. Told the the NP about my problems filling Rx and was told again, the hospital had no obligation to them but was doing them a FAVOR by filling their prescriptions. THIS IS INSANITY.!!!!! WHEN A PATIENT OF A MAJOR HOSPITAL/MEDICAL CENTER [FOR ALMOST 5 YEARS] IS REFUSED SERVICE THEN AFTER BEGGING AND PLEADING IS TREATED LIKE THE HOSPITAL IS DOING HIM A FAVOR JUST TO FILL MEDS PRESCRIBED BY THE HOSPITAL’S PHYSICIANS AND ‘AFFILIATED’ DR’s.!!!!!!!! THIS HAS GONE TOO FAR!!!!!
I have many symptoms and prescriptions. Pain and medication to treat it are but one part of my health care. It was nice not to have to worry about my pain being out of control, now I add fear not only untreated pain but withdrawal to the stresses of being disabled and in constant fatigue, nausea, etc.
One last thing. I really feel that testing every patient every office visit is insane too. Thank god I am on disability or I wouldn’t be able to afford PM care. Wouldn’t it be a lot easier and effective to call a patient at random 3-4 times a year during the middle or beginning of the month and have them report to a lab w/in 24 hrs? I mean this is outrageous expense, especially for those who are already paying through the nose for abuse deterrent meds that should be as cheap as dirt not to mention the actual doctor visit and any other doctors and prescriptions they may have.
What exactly are these clowns (DEA) after? They’ve already instituted PDMPs, urine screens, pill counts, contracts, REMS, rescheduling hydrodone,etc. Then it hit me. They are trying to legitimize their budget and keep job security bottom line! America is tired of the war on pot (see Colorado and Washington state). It is decriminalized in 18 more states and medical in several where it is illegal.
They can say they are protecting the children, like teens wont be able to get them now and the ODs (most of which are no patients but addicts in combo w/ alcohol other non-prescribed meds/drugs). They could give a rats behind about addicts and ODs and legitimate patients like you and I for that matter. When have laws and decreasing supply done ANYTHING to curb drug abuse/addiction EVER?
One last word. It isn’t even constitutional what they are doing they have just bullied physicians and patients w/ fear and threats all the while claiming to be concerned about making sure legit patients are still able to receive legit Rx medication. I call BULL****!!! It supposed to be a free country, if an addict wants to take handfuls of Vicodin or any other drug heck that’s his problem, if he dies he knew the risk, you cant protect someone from their own stupidity nor legislate morality, it just doesn’t work. Here is a VERY INTERESTING LINK CONCERNING THE CONSTITUTIONALITY OF WHAT THE FEDERAL GOVERNMENT IS DOING. thanks to Siohban Reynolds (RIP) http://pointsadhsblog.wordpress.com/2011/06/23/bound-by-law-questioning-the-lobster-trap-of-the-controlled-substances-act/
http://pointsadhsblog.wordpress.com/2011/06/02/abusive-treatment-drug-prohibition-and-the-erosion-of-the-doctorpatient-relationship/
Thank you again Dr Fudin for all that you do and for providing the little man with an outlet to be heard on this important issue.
Coonhound
I have Lupus, Scleroderma, Primary Biliary Cirrhosis, and Chronic Hep B. I am in constant pain from the moment I wake to the moment I fall asleep on the nights I can sleep. I have tried every kind of pain reliever there is and the only ones that help are opiods. That is the only relief I get and it works. I am not an addict. I have never taken more than the amount prescribed. I recently moved from Los Angeles to Seattle where the DEA has placed such severe restrictions on prescribed narcotics that even being under the care of a primary physician, a rheumatologist, pulmonologist, nephrologist, hepatologist, and Pain Management, I still cannot get even the smallest amount needed for the pain I endure. I did not ask for any of these diseases, nor did I do anything to cause them or deserve them, nor do I deserve to be in this pain. Something has to be done.
I suffer from Ehlers-Danlos Syndrome, a congenital connective tissue disorder, of which tissue fragility and chronic pain are common symptoms. I have consulted twenty-two different health-care professionals about my pain. I have tried traditional physical therapy, aqua therapy, postural therapy, acupuncture, epidural steroid injections, rolfing, yoga, meditation, magnets, diet, supplements, ice, NSAIDS, and a variety of other non-opioid medications with little success.
For me opioid pain relievers have provided a cheap and effective way to regain functionality after lengthy periods of disability. In short, opioids control my pain, which allows me to sleep restoratively, which allows my body to heal, which allows me to more fully participate in life rather than being confined to bed with debilitating pain.
These medications have been used successfully for centuries to alleviate pain. However, due to a persistent barrage of misinformation, opioids have recently become conflated with addiction in the minds of doctors as well as the general public.
The result is a near universal knee-jerk reaction to condemn any pain sufferer using opioid pain relievers as a suspected addict. This defies the evidence. According to the National Institute of Health, a mere 5% of medical patients taking opioids as directed for a year end up with an addiction disorder.
I have never had a substance abuse problem. However, I have often been denied access to needed pain medication because my doctors were intimidated by overzealous regulators or because the doctors preferred to perform more invasive (and lucrative) “interventional” treatments.
“The DEA is cracking down on doctors who write too many opioid prescriptions,” one doctor explained as she denied my request for medication. “I have kids in college. I cannot afford to lose my medical license.”
“I’m only a primary care physician,” another doctor, explained. “you need to see a pain management specialist.” He did not provide a referral.
“I am not a prescription re-filler,” the pain management specialist said scornfully. “I specialize in surgically implanted neurostimulators. I do not want patients like you. ” He referred me to the Internet.
Unfortunately, my experiences are far from unusual. Tens of thousands of pain sufferers are subjected to similar prejudice and ill treatment every day. Do not imagine that this problem does not affect you. It affects us all because through accident or other unforeseen circumstance, anyone could become a pain patient at any time. Please join hands and do something before it is too late.
I havet I been in horrible pain due to a back injury in 2000. My Spine doctor put me on Permanantly and total disability in 2002. I had to quit my job which was very hard. I loved my job but my back pain was so bad I just could not work.
I have been treated with injections and Percocet and Kadien for some years. The percocet helped the most, It helped the intensity of the pain so that i could function better. I do have to ride a scooter when I go out as due to the back injury I can’t walk very far at all.
The doctor took me off of Percocet last fall and the pain has been MUCH worse. I didn’t have any withdrawal symptoms but the pain is definitely worse, much much worse,
I have seen Pain doctors but they refuse to give me Percocet and I am positive that it is due to this paranoid law that has made doctors scared to give people in real pain the meds they need to function.
This is just so messed up. Yes some ppl abuse their meds or illegal drugs but I am not one of those people. I am IN PAIN and used the medication as I was suppose to. Something has to be done about this. FAST!!!!
First off I’d like to thank Dr. Fudin for his support, understanding and the help he gives to us as chronic pain patients. I too am a sufferer of chronic pain living in the state of Florida. Every time I try to explain all of my conditions that cause pain I leave something out, so in short, I was injured in a car accident after the car I was riding in was slammed into by a car doing 45 mph that never braked. I was the rear passenger and sustained back and neck injuries from the crash. My condition was made worse by both a chiropractor and a money hungry orthopedic dr. who I allowed to do epidural injections. I have been through the same thing with Walgreens as many others I have spoken with and some of whom have shared in these comments. I too was a long time customer, and after the way I was treated, I won’t buy so much as a newspaper from Walgreens now. I have also experienced the stigmas of being labeled a “drug seeker” from ER visits I made before I found the PM doctor I now have. I went for my monthly appointment this week and was told that my dr. can no longer prescribe my medicine for anxiety, and was provided one last rx of it. This is because of scrutiny from the DEA. Suddenly, after 3+ years this is an issue now. But I am told it is ok for another doctor to prescribe it, it is a benzodiazepine. Problem with this is that I am uninsured. I have some medical assistance through the county I reside in, but it excludes pain management and ANY sort of mental health counseling or medication therapy. Most times benzodiazepines are prescribed from psychiatrists which will be excluded from my county provided health care. I am already paying $200 per month/per visit to see my pain management dr. and now I am looking at another large monthly payment to obtain anxiety medication. I am grateful my PM dr. was able to write the script as long as he did, but this new expense is something I don’t know how I will be able to afford. I also foresee another issue that could be coming up for us pain patients who also take anxiety meds with the pharmacies. Two dr.s writing different scheduled medications. My point of bringing this up, is it’s just more harassment of pain patients and/or our doctors by the DEA. The DEA should spend more of its time pursing illegal drugs and their entry into the U.S. rather than legitimate pain patients and their doctors. Many of us in chronic pain are still having issues at our pharmacies. I switched to Publix pharmacy after many issues with Walgreens. At first Publix was a dream to fill there, no hassles, none of those “looks” and it was a pleasant experience. Unfortunately for me, the Publix I use got a new pharmacy manager, who seems to have an issue with pain patients, so every month now I wonder what’s next with him. I long for the day I can go to my dr. appointment, and go to the pharmacy without any anxiety. Stay out of our lives DEA!
I am a victim of the so called war on prescription drugs that the DEA has directed at Florida, and that has unfairly left thousands of legitimate patients unprotected because of the lack of medicine available. It has left distributors, as well as, hundreds of pharmacist and doctors in Florida fearful and unresponsive to patient’s needs.
In 1998, I was on an airplane, traveling on business from NJ to TX when all of a sudden, the occupied chair in front of me broke, split in two (back from seat) and fell into my knees. The flight attendant attempted to fix the chair for the complaining passenger, and once she thought she had it fixed, she asked him to try the seat again which hit my knee a second time. Long story short, I ended up with a torn meniscus which required surgery. The injury did not heal as expected leading to nerve damage which then manifested into a disease named Reflex Sympathetic Dystrophy. RSD is a condition that features a group of typical symptoms, including pain (often “burning” type), tenderness, and swelling of the extremity associated with various degrees of sweating, warmth and/or coolness, flushing, discoloration, sensitivity to touch and heat or cold, shiny skin and fever. The disease, which as expected by my doctors, began to spread up the left side of my body. My doctor also told me that I would no longer be able to work in the career that I absolutely loved. Today, like almost a million other Americans, I live with excruciating chronic pain, which keeps me in bed most days and has triggered clinical depression.
This illness also contributed to the demise of my marriage of almost 28 years, and this past fall I relocated from my home in Edison, NJ to Ocala in order to be supported by my family. While in Edison, I was under the care of Dr. John Secoy of West Caldwell, NJ who is listed on the New Jersey “Top Doctors” roster. Dr. Secoy has been able to manage my pain successfully for the past 15 years without having to raise my dosage often, giving me a reasonable quality of life under the circumstances. My prescription has been for many years the same medication which consisted of two controlled substances and one medicine for neuropathy. Upon moving to Florida, I have found that the doctors I asked to take over my care have been unwilling (or afraid of the DEA?) to follow the same regimen that I have been on for so many years. The pharmacies have been having a hard time getting the medicine that has been prescribed, and even though I have been a long time customer of Walgreens, and they have all of my records from 1998, as they have been the only pharmacy I have ever used, I am now met with rudeness and suspicion because of the controlled substances. I am treated like I am a junkie, even though, I rarely get sleepy and I have NEVER gotten high, nor demonstrated addictive behavior like “losing” my prescription before renewal time in order to get extra. My current doctor refuses to provide the same level of medication I received while in NJ. Even though my NJ doctor took the time to forward my 15 year old file to him, he still treats me like I was just diagnosed, with very low doses of pain. Once he gave me a 2 week prescription and told me if I was having any trouble with the dosage to call him in a week if necessary. I called him after 12 days and told him that I was out of medicine because I misread the label and took them 1 every 4 hrs, instead of the prescribed 1 every 6 hours. Because I was totally out of meds, I took the medicine I had been prescribed by my NJ doctor, which I didn’t know was unlawful. When he saw the next day, he prescribed the same medicine he had before but changing it to the way I had erroneously taken (1 every 4 hrs). However, my urine exam showed the medicine he had not prescribed, so he sent me immediately for addiction counseling, even though I had never failed a drug test before, and I told him that I couldn’t go without any drug the night before. The addiction counselor wrote a glowing letter stating that I had made an innocent mistake, and that I could continue my treatment. Because I had become impatient with his seemingly ignorance to my level of pain, and at the suggestion of my NJ doctor, I attempted to see another pain doctor. When I revealed to the new doctor that I had been sent for addiction counseling (I thought it best to be upfront as she was going to request my files anyway), she immediately told me that she would not give me any narcotics at all. Because of the red flag in my file, which the doctor refuses to remove, I won’t be able to see any other doctor. I call his office crying in pain and he seems unfazed, and treats me with suspicion. He also prescribed me sleeping pills so that I could at least attempt to sleep the nights when my pain was high. When he didn’t see sleeping pills in my urine the next visit, he again asked suspiciously why it wasn’t present. I told him that I only take them when I need to, which may not be every night. Because of this, he sent my urine out for further testing!! This has turned my life upside down, and I have spent most of my seven months in Florida in bed in horrible pain, fighting depressive moods. The pain is more than I can bare with little or no relief from the medication am now prescribed. I had no idea that this would happen upon moving here, and I am questioning whether or not I will be able to stay here with my family whom I must rely on for support.
I believe that all options for the treatment of pain should be available, but especially for chronic pain — before the pain crosses over to more unmanageable, intractable levels.
I am a 25-year intractable pain patient who entered New Mexico’s Medical Cannabis Program a year ago after stopping long-term treatment with prescription medications. No, marijuana is not a miracle drug — it is simply another option for pain patients that have been left with so few.
I have Ehlers-Danlos Hypermobility. This wouldn’t be a huge problem if I had been diagnosed earlier, but we didn’t know I had it until I was about 20. By then I’d practiced martial arts for years and already had done significant damage – enough so that I developed chronic pain syndrome. EDS also comes with fun extras like POTS (postural orthostatic tachycardia syndrome), blood pooling, food allergies, and autoimmune issues. I’m unable to work and on painkillers 24/7.
My particular pain issues are a result of being attacked by a stranger. He shattered the left side of my face, fractured my eye socket and the base of my skull. After 4 facial reconstructive surgeries in one year, battling bone infections and implants, and a multitude of procedures and consults with every specialist on the eastern coast, it became apparent that the facial pain was not going to go away, and it was then, in December of 2000, I was diagnosed with a form of Trigeminal Neuralgia (or Trigeminal Neuropathic Pain, (TNP): facial pain resulting from unintentional injury to the trigeminal system from facial trauma, oral surgery, ear, nose and throat (ENT) surgery, root injury from posterior fossa or skull base surgery, stroke, etc.). It is a VERY PAINFUL condition. It affects the left side of my face (2nd branch). I have tried many therapies and surgeries, and have seen numerous specialists that all have come to the conclusion that Pain Management is the most effective means to treat the pain, as the nerve has been severely and permanently damaged. TNP is dreaded complication of facial surgery and is commonly known as the “suicide disease” as a result of the higher than normal rate of suicide from its sufferers. While the disease itself is not a terminal condition, the intense, unending pain inflicted upon those who suffer from it can cause it to be.
This pain is constant. It does not take a day off or go on vacation. The damaged facial nerve constantly signals an intense crushing, a heavy pressure and a burning sensation most of the day and night. I also experiences breakthrough pain throughout the day, without warning which usually brings me to my knees in pain. The triggers for these severe flares of pain can be just about anything: changes in the weather, talking, smiling, chewing or touch – just about anything that a person can do during the day. Needless to say, I am in constant pain without any pain management.
I do have a secondary condition that is starting to run a close race with the first; issues with my back (mid, lower, left hip & leg). I am sometimes unable to walk or move for that matter, luckily, it is usually only during flares, which happen 5-8 times a year)
Following suggestions of the doctors, I have tried the following medical treatments in an attempt to control, subdue, or to simply lessen the severity of the pain: Long Term Antibiotic Therapy (through catheter in chest), Anti Seizure medication, Hyperbaric Chamber Therapy, acupuncture therapy, nerve blocking facial injections, TENS Unit, anti – inflammatory medication, alternating hot and cold therapy, “embrace the pain” talk therapy, anti-depressant medication, and finally pain abatement through medication.
I have been lied to and treated very poorly these last couple years by all areas of the healthcare field. I have had to hand over a binder of my personal medical records to the pharmacist, for him to deem me worthy of getting my prescription filled. Another visit to the pharmacy, the pharmacist demanded that I bring in the drug test results from my doctor’s office if I wanted to continue to receive pain medication. The pharmacist said it was for their records, in case the DEA questioned them.
I could write a lot more about this, but will just say when I told my doctor he was baffled, saying, “Do they not know your condition?”
I share all of this information so that one can see that I and the rest of us chronic pain patients, are not dealing with a minor illness or disease, but coping with a debilitating conditions that can be managed somewhat effectively by therapy which includes pain medication.
We did not asked to be in the position we are in. We are at the mercy of our community to assist and support us so we can have somewhat of a life, a life far from the one we once knew.
Without certain medications — and soon I fear all with not be available — I can tell you honestly and without hesitation that I would be dead.
My name is Melanie, and I painfully live with medullary sponge kidney disease (MSK), Even though MSK patients are born with this disease most aren’t diagnosed until their late 20 ‘s or early 30’s as I was when I was 28. When the urologist fist told me he made it sound like it was “no big deal” and I would have “an occasional stone”. And although it’s hereditary, no one in my family is diagnosed with it at this time. My son said if he gets it he will probably kill himself as he has seen me in so much pain with very little pain medicine. My pain? Some days or moments are better than others but there is usually some kind of pain weather it’s in one of the kidneys, one of the ureters or I the urethra. Sometimes there’s blood in the urine, nausea, vomiting, fever, chills… On excruciating painful days when pain medicines don’t seem to help I sometimes wish I would hit my head just so I would pass out to end the pain. Sometimes I feel like the doctors who tell me (us) that kidney stones shouldn’t hurt should be able to feel our pain for just one day. I’ve passed quite a few stones on my own but I’ve also had 9 surgeries in only 7 years for blasting/removal of a stone(s) for being stuck or too big to pass on their own. My left kidney is shrinking in size and the cortex is thinning, with half of its function. All of us with MSK struggle to cope to get through our daily lives. We have an incredible closed group just for us with over 1,000 members. I’m planning a trip to PA this summer and I’ve already started my list ,on top of the list are my pain meds, heating pad and prayers that I can enjoy myself with little to no pain. I am putting away some pain pills like a squirrel hides its nuts, just for this trip ( I haven’t been on a trip in 5 years)!
My son has Medullary Sponge Kidney. He could not find any help here in Southern Calif., so he moved to Idaho, where there are Specialists and a Hospital that specialize in kidney diseases. They are very well aware of MSK, and now he is under the care of a specialist. By the way, he was in his mid thirties when he was diagnosed. He only found “1” doctor that knew what was wrong with him. The rest just kept saying, “You can’t feel pain in your kidneys. You just want pain meds.” He really felt vindicated when he finally got a correct diagnosis.
About 10 years ago my neck went haywire. Pain was not a major issue at the time I just felt like my head was being yanked into my next which was causing cognitive issues, vision problems and I could not think my way out of a paper bag. I had some pain in my neck, my t-spine and my tailbone but did not ask for pain meds as the cognitive problems were my main concern. Over time the pain got worse along my spine. I started getting horrible pain in my left shoulder, hand and leg yet all my test were negative except I tested positive for HLA-B27 a gene associated with ankylosing spondylitis. I was prescribed tramadol several years ago which very helpful as the pain and stiffness in my spine are pretty bad when I wake up in the morning. I had botox in my neck last year and it helped tremendously. I relocated last spring The new neuro does not agree with my other neuros diagnosis and doesn’t think I need botox, She told me to get a massage. I was infuriated. Tramadol is not classified as an opiate but I have heard rumors that it might be at some point. It has been a nightmare trying to get treatment other than medication. If it was not for tramadol I would have a hard time standing up straight in the morning,
I work in the health field and have made it my mission to help others in the same situation and to bring light to the issue of chronic pain and the challenges around treatment. I created a Facebook page, Living Well with Chronic Pain, to offer support for those suffering from pain. https://www.facebook.com/itsnotallinyourmind?ref=hl
Thank you for your work Dr. Fudin
I have had trigeminal neuralgia and other facial pain issues for more then 30 years. I have been tried on morphine, fentynel, tincture of opium and a myriad of other narcotic medications, as well as other prescriptions. Absent benefit from anticonvulsants (these can help although tn is not a seizure disorder). These meds do not work for neuropathic pain although I stay on a low level narcotic for when the pain is bad. I am not sure if it helps or it is just tincture of time but it at least allows me to feel I have some control over the pain by having a medication for it.
I am lucky in that my doctors know me well and trust me. I have been in this system long enough that I have not had to deal with being asked to sign a pain contract (to my mind, a presumption that I am a felon or prone to felonious behavior.)
This “epidemic” is not an epidemic as far as I can tell, absent as a ‘sexy’ headline for the media.
Too often narcotics are prescribed when they are not necessary, for a sprain for instance. Doctors have to stop resorting to them as the first line of defense. By the same token I have seen and heard patients say to doctors I need (this specific narcotic) and insist on it. Both sides of the coin are a big part of the problem.
As long as research dollars go towards more narcotic drugs rather then understanding the mechanisms of chronic pain we will have to continue to rely on narcotics for the main line of treatment for this devastating problem.
The National Pain Care Act was never acted upon by the senate but was amended to the ACA. Included in that is money for research as well as education of the medical community.
Until and unless the conversation changes, until and unless we are seen as people in pain, people who are suffering and deserving of treatment options outside of throwing drugs at it, and us, nothing will change. We will remain in pain, and often disabled.
The lack of treating us as any other person with an illness is treated is costly not only to patients but to the community at large. Without a change within the medical community too many of us remain disabled and a cost to society rather then a benefit as most of us want to be.
(The legalization of medical marijuana, which has been proven in a myriad of studies to be of benefit for those in chronic pain, including neuropathic pain, would also a major step forward for those of us who do not have the opportunity to see if this medication could help us.)
Carol Jay Levy
author A PAINED LIFE, a chronic pain journey
Women In Pain Awareness FB Group, administrator,
The Pained Life, 30 years, and counting.
accredited to the U.N. Convention on the Rights of Persons with Disabilities member U.N. NGO group, Persons With Disabilities
I am so thankful this discussion is taking place. I am one of those unheard stories of a chronic illness and chronic pain patient for which opioid pain medications (along with other medicines for nerve pain, muscle relaxers, anti-inflammatory meds, etc. and other complementary treatments such as PT, relaxation techniques, Cognitive Behavioral Therapy) have not taken my life away but they have given my life back to me. I have a connective tissue disease for which there is no “cure” at this time and it causes chronic Cerebrospinal Fluid leaks (also known as spontaneous dural tears or cerebral hypotension – extremely painful and debilitating condition), severe joint and muscle pain and degeneration, arachnoiditis, migraines, multiple disc herniations, prolapsed organs, fevers, vertigo, constant nausea and many other symptoms and complications. I have been in constant pain since 2000 since my first dural tear/CSF leak and progressive worsening of my connective tissue disease. Along the way I have tried to live my life to its fullest but have grieved the loss of educational dreams and a career I had to leave when I was unable to be upright for any length of time. In 2008 after the birth of my second child, I was virtually bed bound. My pain uncontrolled. After many unsuccessful attempts to build a medical team who would adequately treat my pain, I found a wonderful PCP and a pain management doctor who worked with the rest of my treatment team to get my pain under control and give me my life back. And, yes, (gasp) this was done with opioid pain medications. After some trial and error of what would be the best medications and dosage level we found a combination of Oxycontin for around the clock pain control and Vicodin for breakthrough pain along with a few different nerve pain medications and anti-inflammatory drugs. When people think oxycontin it conjures up scary images of addicts and abuse. But, I am just a mother and wife, not some scary addict. I am a success story where these medications did what they were intended. They alleviated my pain enough so that I could get out of bed and go back to the business of living. Opioids gave me my life back. Now that’s a story you don’t hear. Opioids allowed me to get up and move and stay active. They gave me the gift of having the ability to mother two rambunctious boys. They gave my husband a wife. Every day they give my family a dinner on the table, a household managed and a mother and wife who can participate in life rather than just watching it from my bed. Opioids are not the magic bullet. They are a component of a larger treatment plan and support system. But they are vital. And, unfortunately, needed. As it becomes increasingly harder to get my prescriptions due to political red tape and doctors fearing represuccions, I fear the day my pain management doctors will have to stop their compassionate work of risking their practice to treat those of us in severe and debilitating chronic pain who’s illnesses have no magic cure and are chronic and in all likelihood for life. I believe in responsible prescribing, pain medication contracts, safeguards such as only one physicians prescribing and monitoring pain medication, and frequent follow-up appointments to discuss progress and what’s working and what’s not. As a patient, I am reassured by this accountability. But I am not in support of mandates that make me drive an hour each way at least once a month to get to a physician who can prescribe my medication or laws and insurance companies dictating what dosages and types of medications I’m allowed, or the rhetoric that makes people make assumptions about me just because of my medication list. I am treated like a junkie, a drug seeker, a malingerer, even a criminal – when I am just one of the thousands of patients with chronic illnesses with no easy answers and who wake up every day in a pain that never fully goes away and who grieve loss after loss caused by their illness. I am one voice among many who can get out of bed today and live the best life I can, and participate in that life rather than watching from the sidelines, because of the benefits of opioid pain medications.
I am a 23 year old female in Atlanta, GA living with a chronic illness, Renal Tubular Acidosis (RTA). I started experiencing symptoms of my illness at 13 years old with a severe decline in my health at age 19. I was 20 when my pain turned chronic. RTA is not actively researched, and the course of action is much more about treatments and a little bit of management. I’ve had 16 surgeries in the last 3 years to address my pain issue. Some were more successful than others, but all left me still in daily chronic pain. Last year my pain became unbearable and I tried to join pain management. In Atlanta, GA, my doctors & I had a difficult time finding a pain management clinic willing to treat me because, “[they] do not treat renal pain.” I was left with no choice to go to the emergency room when my pain was out of control because I was not receiving help from my doctors. My PCP and urologists were too afraid of the DEA to subscribe the amount of pain medicine I needed to have my pain controlled. My urologists told me to go the ER. At the ER, I was quickly labeled a drug seeker and denied pain medicine. I was denied pain medication at Emory University Hospital’s Emergency Department when I had a kidney stone in my ureter. They even refused to do imaging on me to properly rule out kidney stones or not. They used their own personal biases to deny me care when I was in severe pain. The story of my chronic illness is having to prove that I am truly in pain and not exaggerating these symptoms. I truly believe I would have been able to join a pain management practice if our government and policies didn’t scare doctors so much.
I was so desperate for adequate pain relief that I even saw a phantom limb specialist who specialized in mind over matter pain relief. In December of 2013, I finally found a doctor willing to treat my pain, but because of the adversity I’ve had to face over these last few years … I begged for a Spinal Cord Stimulator to get me off all opioids. The doctor did the surgery, and I have been off all pain medication since. I am one of a handful of people living with my disease with a Spinal Cord Stimulator (SCS), so I am one of the lucky ones.
I truly believe it would not have been so difficult for me to receive pain management and even basic care for my chronic illness if doctors didn’t have to be scared of prescribing opioids. I opted for the SCS because I was exhausted and emotionally drained from being labeled as a drug seeker and treated like a criminal for using opioids.
My pain is a real thing. It was awful living in daily chronic pain. Patients living in chronic pain deserve access to quality care and options regarding their pain management. We cannot afford to forget about these individuals (myself included). We are not criminals; our pain is real.
Hi Ally, I understand and can relate with you all too keenly the increasing struggle it is to achieve substantial pain relief. I’m 53 years old, l’ve got four ruptured lumbar discs and on top of that chronic, and I mean daily almost 24/7 migraines. After surgery for the discs and spine, low level opiates and nerve blocks, epidurals, cortisone, antiinflammatories and physical therapy and every treatment possible for the migraines (including botox 64 injections into my head) I am still in intractable severe debilitating pain.
Finally I found a pain management doctor who put me on stronger opiates so I have some relief and quality of life. The problem that remains is that suddenly because I need these scheduled meds it often is a battle with the pharmacy to get my meds. Too many times I’ve been told “I can’t fill this prescription until I talk with your doctor” or with 1 day left of my last prescription I’m told “it’s way too soon, you’re just going to have to wait a couple days”. Worse, I’ve actually been told by the pharmacist “you’re really not in that much pain, you’ll be a drug addict”. Almost every time I drop off my new prescription the pharmacist takes the prescription, walks to the back of the pharmacy and quietly talks with one or two other pharmacy employees while they frequently keep looking me over. A couple of times the pharmacy said my prescription couldn’t be filled yet because my insurance told the pharmacy it was too soon based on the insurance companies directive.
While the opiate meds have helped me have some life the current drug policy and fear generated by the government / dea has made doctors afraid of prescribing meds and chronic pain patients like us are treated like drug seeking addicts or criminals. The government needs to focus more on making sure people suffering from pain can have sufficient medical treatment and meds and less on demonizing legitimate, genuine pain patients.
I am a 39 year old female with Fibromyalgia, Myofascial Pain Syndrome, Osteoarthritis, Facet Joint Pain Syndrome, Lumbar Spondylolithesis, Cervical Spondylosis, 3 failed cervical surgeries, Carpal
Tunnel Syndrome in both wrists, Ulnar Neuropathy in left arm, Irritable Bowel Syndrome, Interstitial Cystitis, Restless Leg Syndrome, Chronic Fatigue Syndrome, and Chronic Pain.
I am doing physical therapy and aqua therapy. I have gone to the pain specialist and had numerous epidural steroid injections which were of little to no help. I have been to numerous doctors with different specialties trying to help varying health issues. I have had a total of 9 surgeries trying to minimalize the pain. I have a TENS machine that I use daily. I go for a 30 min. walk as often as I am able. I work 18 hours a week which is too much to handle as it is.
I am severely allergic to all NSAIDs. Meaning my throat swells shut, tongue swells up, face swells, I itch from head to toe. So anti-inflammatories are not a possibility for me. I have taken Lyrica but had bad reaction to it. I took Neurontin but my gastrointestinal tract didn’t handle it well. So narcotics are all that make a slight dent in my chronic pain. Even so… I live each day at a pain level of 6 on a good day and 8 to 10 on a bad day. I guess now I am having to try different narcotic medications to see if there is one that can help reduce the pain enough for me to function better with less pain so that I can enjoy my time with my children rather than endure so they can have fun.
I need pain medication that is going to help. I do not want to nor have I ever abused the pain medication that I do get. In fact, I tend to not take the pain medication just in case I have a worse day in the future so I won’t have to suffer then. I would rather not have to take any pain medication. Just because others abused the system through “drug seeking” does not mean that I do not deserve to have my pain managed at a reasonable level.
I broke my sternum in a car accident in 2012, the ER missed it on the x-rays and treated me like a drug seeker when I asked for pain medication. It was obvious that I was in severe pain, but they were in a rush and gave me 6 pills to last 3 days. Said to see my family physician if pain persisted. Said I should just be a little sore for a couple of days. Well, I went to my doctor and it was painfully obvious to him that I had a broken sternum, and that I needed pain medication to help manage the pain.
I have chronic pain, and do need presecription medication to manage the pain. Restricting the amount of medication I can have to keep the pain levels down to a managable level just puts stress on me. I always have to worry if I will have enough if I have more bad days than good in that 30 day period. I have to plan my activities around my pain as well. I have chronic pain and need medication for it!
6 years ago I was diagnosed with DDD and bulging discs. I have also had fibromyalgia for about 15 years. I attended physical therapy for the bulging discs, and did have relief. A year and a half ago, I started having pain and numbness in my legs. I received an MRI and was diagnosed with a herniated disc (L5-S1) and “moderate facet arthritis”. I have asked several of my providers for help with pain control, and have been turned down. I was even turned down for pain control after a hysterectomy and oral surgery. I was told to take Tylenol. AFTER SURGERY!! My symptoms are getting progressively worse, including my legs giving out, gait problems, and inability to sleep due to pain, waking up in tears, and sitting at my desk at work crying from pain. I am currently awaiting an appointment for a diagnostic nerve block and am undergoing testing for MS.
I pray I find a compassionate doctor who is willing to treat the pain while investigating a cause.
I am a 45 year old woman who has battled with chronic illness / pain for many years I worked in the medical field and I was diagnosed with lupus it crushed me after years and tears of medications that didn’t work one caused me a mini stroke and lots of doctors calling me a liar I found out I was misdiagnosed no lupus fibromyalgia and RA okay now I had worked with a new doctor who was amazing doctor Chris Rotin my hero she worked with me and came up with a formula of meds to control all my symptoms and they work for the first time in 15 years I was able to do a days worth of work yes thank you I relocated and came to where we are now and sure enough the new doctor is on a power control kick she is a PA and tells me I’ll give you your hormones if you do your mammogram okay did it refused to give me the hormone replacement therapy next do a nerve conduction study and I’ll give you your pain meds okay done 1200 dollars later my bill she messed up called in a double script not me I filled them and for the first time in 2 years I had enough pain meds to last without struggling to get by cancels all my meds and calls me a drug addict really she has undone everything I have worked for to get some kind of life out of this condition I am tired of people doctors treating us like we are drug addicts and crazy I know what I live with the sleepiness the pain so bad you cannot walk crying in the tub so no one sees how bad you are I wish someone would listen help us please my god I pray and this doctor I have I’m filing charges against her
Dr. Fudin, I would like to invite you to read The symposium “Patients as Teachers,” “Clinicians as Learners,” a synopsis by Celeste Cooper
http://fmcfstriggerpoints.blogspot.com/2014/04/the-symposium-patients-as-teachers.html#.U15fVvldVJs
and to join us in the initiative to change the way pain is perceived judged and treated, http://PAINSproject.org
Be sure to check out the latest policy brief, OPIOID TREATMENT AGREEMENTS OR “CONTRACTS”:
PROCEED WITH CAUTION
Spring 2014 — Issue 4
http://www.painsproject.org/policy-brief-series/?utm_source=PAINS+Project+Updates&utm_campaign=b39d2fc05d-PAINS_Member_Update_May_20145_15_2014&utm_medium=email&utm_term=0_cfec7475e1-b39d2fc05d-155921925
My daughter suffers from debilitating fibromyalgia pain. She is blessed with a sensible, professional, and compassionate doctor (and his entire staff), and her pharmacy issues are mostly resolved. But that resolution required her to give up her break-through pain medication (which we were told attracts unwanted regulatory scrutiny) and substitute a second ER medication. Although this is better than nothing, and certainly better than being turned away from pharmacies altogether, it has also deprived her of the relief that the break-through medication gave her from the unrelenting pain. I thank you for all that you do to call attention to the plight of pain patients.
I’m a 43 year old female whim was diagnosed in 1998. One morning I woke up and couldn’t stand on my left leg. My knee was the size of a melon. I have been perfectly healthy and active all my life and suddenly I felt like I was hit by a run away train… After many blood tests and repeated monthly painful knee drainings, I was diagnosed with RA. I had an aggressive progression moving through my body, ankles, wrists, fingers, toes, elbows and eventually the right knee. I suffered for 6 years with and without pain meds and insurance coverage. The only thing I could do was take massive amounts if ibuprofen. I continued to work in pain because I fought so hard to go to college and become a private investigator. That dream was short lived. I begged doctors for a knee replacement and they all said I was too “young” for the procedure. Finally in 2004, I found an awesome orthopedic surgeon that took me on. Yes it’s not a pleasant surgery but being able to walk with a little less pain was worth it. But 4 months later my right knee gave from over compensating for the left for so long. Again another surgery. I still continued to work part time but the disease was getting the best if me. No one would prescribe me pain meds and I had tried anything and all that the doctors prescribed. Finally I had to stop working. No one, unless they have gone through something like this feels as worthless as you can be when you lose your ability to be a productive member if society.
4 years ago I became a patient at a pain mgmt center with a great caregiver. Yes I am on opiates and now high doses, but I literally can’t move without them. My body freezes up at night and morning are brutal. I know that pain meds aren’t the answer but for someone living with chronic intense pain all day, that little but if relief sure helps you get through the day. I don’t abuse the meds and take them responsibly so why do the people that need them get punished for the people that just want them??
I would trade in my pills any day just to have a small but if my old life back. Each day I lose more and more of myself to this horrific disease that makes you way old before your time. Prohibiting opiates is not the answer to those that really need them. Go after the abusers and not the victims of diseases that can’t even brush their teeth without some sort of pain relieving med….
Dear Dr. Fudin,
I am 63 yrs. old and have been living with severe chronic pain for over 27 years. I was injured at work in a laboratory when someone spilled plastic pipette tips on the floor and I tripped while holding a heavy box. I herniated 2 discs at the time that went undiagnosed for over 5 years causing severe damage to my spine. After 4 back surgeries I was left with Arachnoiditis, Spondylothesis and Arthritis. From the onset of pain in 1987, my husband and I had only been married for 6 months. I had also started a new job with Lab Corp. I worked until 2000 and then the pain became so bad that I wasn’t able to function at all. My chronic pain has severely lessened my quality of life. Without opiates, I would have no quality of life what so ever. I do fairly well on the narcotic regiment I’m on now. At least I can travel a little and enjoy my dogs and my husband. I loved working and that was difficult to give up but it could have been a whole lot worse. I’m extremely spiritual or I would have never made it through this horrible ordeal with the chronic pain. It takes a strong person to fight it every day. I happen to have a very compassionate and smart pain doctor. He can never give me enough medicine to make the pain go away completely but he sure does help. I wish all doctors were educated about Arachnoiditis.Thank you for hearing me express my feelings.
Good day Dr. Fudin,
I am a 37 years old female. I have 7 children, full-time student, and work full-time. This year marks 20 years of being diagnosed with Fibromyalgia. I hurt everyday and have some days were it hurts to walk, stand, lay down, sit…….
In the last year 5 out of 7 days a week I am hurting so bad I walk through the warehouse where I work with tears streaming, but I get my job done so to others it cannot be that bad.
A few years ago a doctor had me on 12 different medications taking some of them 4 times a day. At this time I had filed for disability. I was told by the judge that because I had a 4.0, my age, and because I took care of my children and they were not in the states custody then I was fine.
Since then I took my self off all medication and tough it out. I have moments where I would much rather put a bullet in my head then face the day. I even self inflict pain to distract from the other pain I am going through.
I tried going to other doctors to explain to them that I need medication for the days I hurt so bad that I cannot think and end up driving some where other then where my destination is.
I have 17 out of the 18 points that cannot take more than 2 lbs of pressure…. but since being naked is illegal in public I just deal with it. I am tired of dealing with it.
I do not like taking medication unless I am ready to just quit life because of the pain. Of course if you tell a doctor that they do not understand and want you to get a psych evaluation done.
If you need friendship and support, we would love to have you join us at Living With Fibro. I can’t imagine how tough it’s got to be to have 7 children and be a single mom. If you feel you have time to join our group we would love to have you. Not only could we be an emotional support for you, but we could learn so much from you and how you’ve done it.
Best Wishes, Susan D.
It took years for me to ‘prove’ that I medically require opiates for pain management to function. Now I’m so opioid tolerant, the doses I require are insane. I’m fortunate my primary care physician is cautious yet generous. I’ve kept logs of how/what functions improve as well as basic quality of life. Being able to maintain my own washroom functions, hold a pen, etc, demonstrate that I’m not trying to run a marathon, simply have the pain of several proven, medical diseases managed so I’m not in such pain I just give up on life. I’m only 32. I can’t give up. I have a husband, kids, I refuse to accept living in such pain that they can’t hug me, or hold my hand. I pray that Mayo Clinic can find the primary disease causing the secondary autoimmune diseases, as the minute I’m in remission, and pain-symptom free (or lesser!), I’m detoxing off the opiates. Until then, it’s Fentanyl patches and oxycodone for me.
I was 21 when I was diagnosed with fibromyalgia. I had spent 3 yrs with doctors telling me it was all in my head. I had been a newlywed, married for just a year, when I learned I had a tumor in my femur. The incredible pain the surgery and recovery caused was supposed to insure my pain was gone forever. 3 weeks after surgery I started my career I’d worked graveyard shifts and gone days without time with my new husband just to finish school. And finish I did, first in my class, with a job offer before I even finished school. They were wonderful, understanding that I needed the knee surgery before I could start, delay meant the possibility of losing my leg. So they held my job for 4 mos, and I started my first day still on crutches and a brace from crotch to ankle. Fast forward 3 yrs and I’d been the lead phlebotomist in my own lab 8 mos after starting, following yet another surgery sworn to take away my pain. Except now it was everywhere, all the time. I had doctors tell me I was crazy, a drug seeker (though never once had I asked for them.) I was beginning to believe I was crazy. I had started a new PCP but had been reluctant to see her, just to have to start all over again. It had been 3 yrs since my knee surgery, and because I loved my job, and we needed the money, not to mention the insurance, I made sure I made it into work everyday, even though that meant spending the rest of the night on the couch trying to recover so I could get to work the next day. When I finally couldn’t wait any longer, I went up to see my new doctor. And when she asked about the doctor after doctor I had seen, there was no judgement in her voice. Finally, I started telling her about my never ending pain, the restless legs, the insomnia. I wasn’t even halfway through when she stopped me, and I feared the worst. She asked to do a simple test, trigger point testing, she called it. She told me I had 18 out of 18. Then she explained fibromyalgia. I cried, so relieved to have a name, a diagnosis, instead of cruel dismissal. For over a year I put off going on narcotics, though she offered them as the best thing they had to treat at the time. So she put me on 3 10mg oxycontin a day, with 3 hydrocodone for breakthrough pain. I was alive again! I could work, enjoy it again, and meet up with my hubby and friends after work and have fun. I was 22yrs old, had just got my life back. My pain wasn’t gone completely, but instead of it being an 8 at noon, it never passed a 4 all day. Everyone said the old me was back, it was like being a newlywed all over again. Frankly, it was the best year and a half of my life. Then my wonderful doctor was asked to leave that practice. The people who started taking oxycontin and turning it into “hillbilly heroin” had made the doctors look like dealers and the patients look like addicts. Everyone was smeared with that tar, without reason or proof. She sent her pain pts to 3 different doctors, and the woman I was sent to was wonderful. She couldn’t give me oxycontin again, for obvious reasons, so she put me on methadone 10mg 3xd, plus percocet 3xd as needed. And unfortunately it did not help my pain like the oxycontin had. But I tried to make due. At this point i was on long term disability for a different issue unrelated to my pain, but unfortunately the meds I took for one effected the other, and things went all wonky for a while. Eventually that doctor left her practice because she needed surgery and after bouncing through a few different doctors with varying results, and at one point forced to go through withdrawal without any support, and being off narcotics and once again barely able to function, I started going to a clinic near my home (under the guidelines of my disability, i had to have a fulltime PCP at all times) and was trying to get back on my meds, when all of a sudden my 2nd wonderful doctor just started practicing there. She remembered me, even after 2 or 3 yrs apart, and was appalled at my condition. When she left I was semi functioning, size 6, and my prospects were looking good. Now I was 270lbs, non functioning, and miserable. She put me back on my narcotics, changed some meds, including the one caused me to gain all the weight that wasn’t necessary, and back on a hormones replacement that i desperately needed. I started to level out, could go for walks again, started losing weight. She knew I wasn’t an addict, and though my dose was high, I’d been on them 10yrs and was actually much lower than the national average. Things were looking up again, I was talking about going back to work, finally!!
Then I called to make an appt, only to learn she no longer worked there. They wouldn’t tell us anything else. So now I’m stuck with this useless doctor, who’s first act was to cut back my pain meds, then send me to what sounds like a horrible “pain consultant”. Plus, shes so incompetent she completely screwed me off disability before I could get back to a place where I could go to work and function, so now I’m on half the amount I was on just a few short months ago, having to get a job, any job, because shes to stupid to fill out a disability form, and I’m on half the amount because of this bullshit about having to protect the addicts! These are grown adults (mostly) who are going to take drugs and get high, and if its not prescription drugs it’ll be whatever else they can get their hands on. The only people who are suffering are us, the ones who need them just to live a normal life! Why are we punished for the acts of these people? There are millions of drunk drivers a year, but you don’t take the alcohol away! Billions die each year from smoking and second hand smoke inhalation a year, yet you can still buy cigerettes everywhere, and the people can and do smoke in front of, while in the house and car with children, yet they aren’t arrested for forcing their children to breathe a toxic substance! Yet you are ready to take away medication, in some cases life stastaining medicine, because of people who misuse it? Why are we punished because THEY break the law? Why tie doctors hands, and make them fearful of treating their patients in a way all the years they’ve worked and all their schooling tells them is the best way, because there are people out there who game the system and do the wrong things? ?? HOW IS THAT OUR FAULT? If someone steals my car, and runs someone over with it, would I be the one in jail? you want to protect the junkies so badly, open more federally funded Rehabs, make them easy to get into, cuz right now somebody looking to get into rehab finds it so difficult they give up. So, why don’t YOU save them that way, instead of going after something that for alot of people is the only reason they’re alive. The only way to have a life. You take away the only help most of us have, there will be a huge number of suicides that will be completely your fault. There will be people who never in a million years would normally take illegal drugs, become junkies. Would you care about them then?
We, the people with invisible illnesses, the overlooked, the mistreated, the maligned, the ignored, and the forsaken, we ask you to hear us, look at us, HELP US. Unlike most junkies, we don’t want to take the pills, we’re not looking for a high. We NEED this medication, we NEED doctors who aren’t afraid to treat us how they deem fit. We’ve been in the silent majority for so long, afraid of what we’ll be accused of, afraid of what little help we get will be taken away from us. Even though the problem with oxycontin, that made it possible to be misused has been fix, no one I’ve talked to in my support groups knows of one doctor willing to prescribe the drug. Its one of the most effective pain meds on the market, and it sits there unused, except maybe in circles where they don’t fear to prescribe because of who they are prescribing to. But us normal folk, who need it, why it might as well not exist!
We are real, with families we want to spend time with, jobs we want to do and still be able to live afterwards. WE ARE HERE, WE NEED HELP.
We will NO longer be silent!
I am a 55 year old female, who has suffered with chronic pain most of my adult life. I suffer from Lupus, I have arthritis in my entire spine, but it is severe in my lower spine. I’ve had two epidural injections into my L5-S1 nerves, going into my left hip and leg. They help, but I’m still taking Hydrocodon and Celebrex. My Rheumatologist thinks that I have Fibromyalgia, on top of everything else. I get bouts of severe pain in my upper arms, my legs, and my hands, which are debilitating to an extreme. I suffer several different kinds of headaches, including severe TMJ and migraines. Like many chronic pain sufferers, I’ve developed depression and anxiety. Pain is the center of my world.
It’s disgusting that we’ve found several medications to give men erections but have done nothing of any real value, to eradicate chronic pain.
I am a 66 yr old woman. I dont drink… etc etc I have had 3 back surgeries all fusions starting with a small one on lower back Then a bigger one in 2009 and another one in 2011…I have a rod from my shoulder blade area to my booty. And now I have such scare tissue pushing on my leg nerves I am losing the ability to walk very good I used the SAME pain Specialist after the surgeon stopped my pain meds.. SoI have been to same Pain DR for many yrs.. And he gave me100 5 mg vicoden every 4 hrs BUT he only wanted me to take 3 a day but yet gave me 10extra in case I needed them, So if I used the 10 on bad days….and went back to him…he said why did ya take the 10 extra??REALLY??? I had to call him 1 time in 6 yrs for a few extra he made me feel like a junkie…I Just want to live the life I have left as pain free as I can..which I know wont be totally pain free. I cant do anything…plan anything Go on car rides or even go on vacations…..I am just a shadow of a person and it is depressing as hell……..
I am a 47 yr old Mother to one daughter and 2 beautiful grandchildren. I suffer from chronic pain. I was a runner, I use to snorkel every weekend. I would jump of a boat like nothing. I use to love to dance. I loved going to concerts and college football games. I was that person that could not sit still ever !! Than a little over 2 yrs ago my struggle with unexplainable pain began. My Primary care Dr of 3 yrs suspected I had Fibromyalgia but still refused to give me anything for my pain. I can not tell you how much time I spent crying in her office because of the daily pain I was in yet she still refused to hear me actually what she did say to me was IF YOU want Pain meds I’M not giving them to YOU !!!! So you can just forget it !!!! Up until than I had never ever asked her for pain meds nor had I seen her for anything other than a cold or other ailments. She referred me to a Rheumatologist who confirmed that I had Fibromyalgia. His prescription he gave me was live with it and Hey look at the bright side it’s not life threatening so 3 more Dr later I found my pain management Dr who has since diagnosed me with CRPS, Painful !!!! 2 buldgeing disks Painful !!! And severe permanent nerve damage in right foot and leg from the CRPS going undiagnosed. Yes nobody would listen when I would complain about the burning and tingling and pain in my leg but he did. He prescribed me pain meds and I have to have them just to function just to enjoy my Grand children just to do the things that people who don’t suffer from chronic pain take for granted.My urine screen every month has always come back good. I have only used the same 2 pharmacies and I do not Dr shop !!!! Yet I get treated like a drug addict. I get looked at like I am a drug addict. I can not begin to tell you how for yrs after yet another Dr who accused me of seeking drugs left me crying in my car thinking I was crazy. I will never get the life back I had when I was pain free but I want to enjoy my life still and I can do that with my pain meds. I’m not seeking a high but I am seeking relief, a life, peace of mind. Why is it that the true people who suffer 24-7 with chronic pain have to be the ones to suffer from the people who have abused the pain meds because that’s what is happening and going to continue to happen WE are suffering !!!!
I suffered a compression fracture of T-12 & L-1 at 19. I have had Fibromyalgia since then though it was just diagnosed about a year ago. I have a herniated disc at L-4 & a torn disc at S -1. I had gastric bypass in 2009 & now am a chronic kidney stone former. I am 36 now and in pain frequently. I suffer from chronic migraines and severe anemia so I spend a lot of time tired. People look at me like I am an addict because it is only opioid medication that truly gives me relief. I get Tramadol but they prescribe 1 50mg pill 3 times a day and it does very little. I take 4 & two Tylenol to even get a fraction of relief. I am a student and a wife and mother. I am not ready to give in but I need relief.
I am a 60 yea old woman that has been living in chronic pain for more than 18 years. I started out with over the counter meds like aspirin and such till I was taking enough to poison myself. So I began the journey of pain meds. At first it was low dose that over time exceeded that which is the recommended dose. Then I began the Vicodin journey for several years I stayed on the lowest dose, taking only as I needed. Then a Dr says you look as if your in a lot of pain I want to put you on Oxycontin, I did’t want to become addicted then have them pull them out from under me. Well after a year that’s exactly what happened, for unknown reasons she said, ” I’m not giving them to you anymore” cold turkey 40mg 3 times a day to nothing a day. So how am I doing, I’m house bed bound the pain to even move is too much. Help me have some kind of life to enjoy my grand and great grandchildren to even just hold them would be wonderful
I’ve had fibromyalgia for 18 years now. It’s an illness of complex symptoms of which pain is a daily factor. I’m also a 19 year Registered Nurse. I suffered the first few years is constant pain where people, even my doctors, told me it was “all in my head”. I tried everything herbal anybody told me about. I meditate, I do a million little things that have nothing to do with pain medicines because I know from experience that pain meds can’t do it all. I really take exception to being labeled as a “drug addict” just because I want to live a quality life instead of lying in bed crying through the horrid pain. I get tired of doctor’s who tell me I can’t have my Norco because “you don’t treat fibromyalgia that way”. It’s MY body and believe me I know what does and doesn’t work for pain management. I’ve been horrified as over a dozen of my friends in my fibro group have committed suicide because they can’t bear the pain anymore. Yes, there are people who abuse narcotic medication. That is a fact of life. However let’s consider that the percentage of abuse is a lot smaller than the public is being told compared to how many chronic pain patients are being treated. The government has given into mass hysteria instead of looking at managing pain for the vast majority of us who just want to get through the day. I almost took my life a few years back because the pain and constant barrage of people who still tell me “it’s all in your head”. I was saved by a doctor who actually understood and with the help of Savella and my family I clawed my way back. There are still days when the pain is all consuming and I don’t think I can manage another moment of it. So when I hear all the “OMG WE ARE ALL GONNA DIE” in relation to opoid use I get really angry!! I’ve seen WAY more damage due to alcohol abuse and yet alcohol can be picked up at the grocery store. I have researched this issue at length. It’s just too bad our government officials who are supposed to represent ALL of us don’t make the same effort. We are dying out here. Why won’t you listen??
The pain was so bad I was passing out from it, and still the doctors refused to prescribe anything for it. I spent all day every day flat on my back — in the CENTER of the bed to make it less likely I’d fall off the side when I lost consciousness — begging God to let me die. And doctors still acted like I was being “a wimp who can’t handle a little pain.” “If you can get to my office, you can get to a job” — with no concerns about whether I could do the job once I got there.
I went to a lecture by a local pain management specialist, whose theory is that fibromyalgia starts because of untreated or undertreated pain, and opined that any doctor who tells a patient to “go home and tough it out” should be drawn and quartered. He reiterated that NSAIDs do not work on neurological pain (such as fibromyalgia).
It took me 7 years (and a dozen doctors) from the first request until I finally got prescription pain meds. I got Vicodin after dental work, and it was a miracle — I slept through the night without waking up in pain after a couple hours. When you sleep through the night, you don’t have insomnia-caused pain. Instead of losing all my editing clients because I’m not able to concentrate, I’m slowly increasing the number of hours I’m able to work.
Take away my pain meds, and I’ll go right back to that horrific cycle of can’t sleep because of pain, which makes the pain worse, which makes it harder to fall asleep, which makes the pain even worse….
I am a chronic pain patient. I was a skateboard fanatic as a preteen. As a teen, I developed chondromalacia patella. After a dislocated knee, I got treatment and learned that, at 15, I had five percent of the cartilage left in my knee.
Fast forward to adulthood, I entered the world of selling auto parts. For over twenty yrs I lifted everything my male colleagues did. This could be fifty lbs. throughout any day, occasionally up to a hundred lbs.
In 2001, I was in a car accident- t-boned by a truck. I have ruptures in my cervical and lumbar spine. It wasn’t until 2006 that it hurt enough to seek pain control. Then I was able to find a pain specialist. He started me on Fentanyl. I took that, developed a tolerance, and, after developing ulcerative colitis, I learned that I couldn’t be “put under” for a colonoscopy. In 2009, I finally decided to have a lumbar fusion. I weaned from Fentanyl to 10 mgs. of morphine every six hours. This was so I could have pain relief after surgery. I took responsibility for my care.
I’ve also been diagnosed with fibromyalgia, and opiods don’t help that pain.
My point in sharing is to show that, while I can no longer work, make concrete plans with friends, or clean my home, I am a human who wants to lead a full life, with some relief from the pain of my damaged spine. I now only use ten mgs. of hydrocodone every six hours. I do not seek fosage increases, I don’t EVER share my medication, and I’m the proud mother of a brilliant daughter who just earned her bachelor’s degree with honors. She was diagnosed at twenty- two with rheumatoid arthritis. If she cannot have access to adequate pain relief, she will never have an opportunity to also be a productive member of society.
I suffer with Ehlers-Danlos Syndrome. Currently, I keep it in check with prescription strength ibuprofen and Tramadol. But, even with the exercise and therapy I put myself through – yes, therapy hurts! – I know m condition will deteriorate and I will need stringer medications. What really frosts me is that I’m using drugs responsibly and I may have to suffer because other people abuse them – how is this fair?? People abuse alcohol – it kills people and destroys lives, and it treats NOTHING – but we’re not taking that away from everyone! Let’s use some sense here. Those drugs are desperately needed by responsible people in chronic unending pain – if others abuse them, that’s their personal responsibility.
i to suffer from sever pain, i have fibro, arthritis and celiac, my rheumatologist who was taking care of me would not prescribe anything stronger then darvocet. so he would refer to a pain clinic. well thank god for my pcp, he is very understanding of fibro. so i asked him to take over for the rheum. he asked me first to get a second opinion. and i did and it was confirmed i have fibro and arthritis. then he asked me to see a pain clinic doctor, so i did- well i had heard they will make you a addict. well i was given a paper to read and sign if i agreed to the doctors term. well he said to me you take 5 darvocets aday and 5 vicodan. i told him no i do not and will not take them, first off i do not want to take them and then become immune to them and i only will take them when i need them and not to just take them for no reason, i will take the vicodan when i need them for serve pain other then that if my pain is mild then i try laying in bed and if that does not help then i will try ibuprofen or tramadol. so as you can see there are many of us that need our pain meds and are not abusing them, so i am asking please find a solution to this.
I was seeing a pain management specialist for a few years. He kept trying to put me on different (more expensive) pain medications. He regularly treated me like a drug addict, despite after being on the same pain medication for years I have never taken more than prescribed, nor have I been known to take them unless absolutely needed. The pain specialist finally refused to work with me when I had adverse reactions to the medications he was offering, saying that he could not help me unless I lost significant weight. Thankfully, my GP knows me well and has no problem continuing to prescribe the same medications in the same amount. Unfortunately, after years of taking the same medication for pain it no longer helps as well. My GP is reticent to prescribe anything else so he keeps increasing the dose, which doesn’t help my pain.
If I didn’t have access to pain medications, I would be confined to my house and possibly my bed! I have so many health issues causing chronic pain that the little relief I can get makes a huge difference! Thanks to pain medications I am able to shower, to go grocery shopping, to occasionally cook, to function add a human being!
I am trying to live with chronic severe pain, as I write this every joint and muscle in my body is burning and screaming in pain. Sometimes the pain levels are so high, I can’t even think or understand what people are saying to me.Yet because of the stigma, I have avoided even asking a doctor for pain medication for over three years. The humiliation, the hoops you have to jump through, the suspicious eyes at the pharmacy and even the self recriminations are equally as torturous as the pain. No one should be fooled, taking opiates isn’t fun. Sure there are times they work and suddenly you stop shaking with pain for a few hours, you can relax and breathe. But there are times when they don’t work and you have to suffer through the side effects without any benefit. In addition, the inability to get sleep is maddening. How many days can you go without a solid four hours of sleep and function? I have finally decided to try pain meds again or go insane, but I am still full of fear, doubt and anxiety. Sure, I read that there may be a cure for FM in the near future and someday soon surgical techniques may be advanced enough to give me a real chance at a pain free life, but until then I have to gather my strength, search for a compassionate doctor and hope for some level of relief. We are not drug addicts, we are people right next to you we just want a little relief from an invisible condition which affects every movement, every thought, every breathe. Still, why is it so hard to get some relief?
I Have Been Dealing With This Issue For Awhile. I Can’t Work Etc… And I Am At The Point That The Best Decision For Me And My Loved Ones Is For Me To Petition My State For The Right To End My Life, WhicH I’m In The Process Of PuttinG Medical Records And Such In Order So That I Can File Soon. I Would Love To Live But I Refuse To Do It In So Much Pain That I Can’t Work Or Take Care Of Myself. I Refuse To Let This Push Me To Homelessness(Which Is Real Close) Or Finding Pain Relief Through Illegal Drugs
I wrote my story below about *some* of the experiences I’ve had with doctors.
What I neglected to write was a description of the pain that I endure.
Every. Single. Day. Some days are better than others. Obviously Pain Medication helps to damper the pain. Sometimes though, it’s all I can do to stay sane.
CRPS= It feels as if I am wearing a brass boot & it is sitting on top of a campfire.
= It will get so freezing cold that it feels hot & so hot that it feels cold, it *is*
Fire & Ice
= It feels as if there is a tiny little army of Ninja warriors inside of my foot/ankle/lower leg,
they have little tiny daggers & are trying to fight their way out.
= It’s Electric, Sensitive, the wind is painful, it’s Heavy, Painful getting a sock on/off
Stabbing, Sharp & Dull all at the same time.
= In the cold, it has some truly fabulous colors, just like the old Mood rings of yore.
= It runs on average of 7degrees colder than my normal foot
A strange, funny thing that has happened more times than I can count is the following. I have a dog who helps me everyday. When I have a ‘good day’ & I am able to go somewhere with him it amazes me that so many other dogs have come up to me & smelled both of my feet & then proceeded to *lick my bad foot*. They can obviously smell or sense that something is wrong. Of course when they do this it is excruciating & I pull away. They oftentimes have given me a knowing look & then run off to play with their friends. My own pup will try to lick my foot as well, although he has become quite sneaky about it because he knows I do not like it.
Thank you so much Dr. Fudin. I am so glad we have someone like you that understands our plight.
Carole
Please delete my previous email as it was not completed.
Thank you for stepping up on this important issue as our patient community relies on opioid therapy to function. Arachnoiditis Society for Awareness and Prevention (ASAP) presented this to the FDA at their hearing last year:
http://www.youtube.com/watch?v=ivKBTm8mZZk&list=UUOUBtQNU8UOxwfGGgTimFDA&index=4
On another important matter, the FDA FINALLY issued a warning which is long overdue:
http://www.youtube.com/watch?v=2bAAakMdlfY&index=1&list=UUOUBtQNU8UOxwfGGgTimFDA
The FDA failed to mention Arachnoiditis as an adverse event, and yet the Manufacturer of Depo-Medrol (Pfizer) warns of this horrible affliction:
http://www.medsafe.govt.nz/profs/Datasheet/d/Depomedrolinj.pdf
And located on the FDA’s own website, they have a link to the datasheet for Kenalog and it lists Arachnoiditis under neurologic adverse events:
http://www.accessdata.fda.gov/drugsatfda_docs/label/2011/012041s039lbl.pdf
We are frustrated that the harmed patient is denied access to appropriate pain relief which includes opioid therapy.
I am 59, a Vietnam Era Veteran. My pain journey began at age 18, with a letter. Not all can be disclosed due to the government regulations. So I will simply say, “I had a back and jaw injury.”
My injuries were complicated with the oil based myelogram dye used for contrast imaging for diagnostic purposes. Over the years of continued surgeries to repair the domino effect of back fusions, I was given several Pantopaque Contrast Myelograms before the days of Magnetic Resonance Imaging.
My pain is caused by Adhesive Arachnoiditis, which has added other central nervous system complications. I am unable to use the usual neuropathic medications or sleep aids, thus my only remedy is the use of opioids and muscle relaxers. Health complications throughout my body are due to lack of whole body managed care. My pain is labeled as intractable, meaning no more surgeries allowed. For the last 10 years I have relied on an intrathecal pain medication pump of Dilaudid aka hydromophone. I am at my maximum allowed dose by my doctor who fears the forever deadly inflammatory mass. Mixing other medications has only caused more complications from undesired side effects.
I am forever attached to my pump maintenance doctor. In another year I will need another replacement unit. It will be my job to locate a trained surgeon. There are so few doctors left who use the pump for pain care. It wasn’t that many years ago the Pain Management recommendation was to use the pump to remove the oral pills from being abused by the patient or other family member or theft. Now there is a shortage of Pump doctors for all the patients who need them.
My pain pump was the replacement device for a 9 year old spinal cord stimulator. I still rely on a cervical stimulator for my arm pain due to failed cervical surgeries. I rely on extended release Morphine and Codeine for break through pain.
Yes, I have been damaged by medications trying to find a balance to a quality of life. I do not rely on Rx’s to fight side effects. When ever possible I use herbal and natural to cleans my body of the toxic effects of all the medications. I use biofeedback and meditation. I have been hypnotized and taught self hypnosis during the many month long pain in-clinics used in the old days.
My daily existence is spent trying to find rest as my limbs and body jerk spasticly. If something is important, I must spend 2 days of preparation to attend an event. Even then, I may only be there in body as my mind is in constant pain control mode. Much of life depends on the weather conditions that effect the barometer.
True pain patients with REAL diagnosis will not sell their pain medication. When left with undertreated pain, patients will doctor shop. It is not depression, but hopelessness that causes one to seek permanent pain relief by suicide. After 40 years, there isn’t too many paths I have not tried or considered at one time or the other. It has been a learning experience for doctors and patients. The moment either believe they hold the only answer is the day they are both doomed.
I have Medullary Sponge Kidney (MSK). Both of my kidneys are filled with hundreds of kidney stones, extensive Nephrocalcinosis, which is a fancy word for calcium deposits that continue to multiply and take over my kidneys, and I suffer with repeated infections. My kidney function bounces all over the place, and on top of Chronic Kidney Disease (CKD), I can now add Polycystic Kidney Disease (PKD) to my ever growing list of kidney troubles, according to my Nephrologist.
I have been in pain management a couple of times in the last few years, after having to fight tooth and nail to get there. I’ve been told over and over again that there was no way I could possibly be in pain because I didn’t have any obstructing stones at that particular moment. I’ve been forced to go to the ER over and over again in excruciating pain, unable to walk and in tears. I’ve had numerous surgeries. MSK is not well known in the medical community, so patients are generally made to feel like we’re crazy.
We’re frequently accused of being drug addicts and lying to try to get pain medications which is hilarious when you think about it – how can you possibly be an addict when for many MSK patients it’s virtually impossible to find a doctor that will write a prescription for pain meds, much less ongoing pain treatment that’s adequate? When you go to the ER they only give you enough IV medication to get the pain under control while you’re there, and you don’t test positive for street drugs or prescription drugs when you go, because…see first question. Most people who have had (a) kidney stone can sympathize to some degree, and jokes are made all the time about how painful kidney stones are, often being compared to childbirth. Imagine never, ever getting a break from that pain – that’s what we as patients all over the world deal with on a daily basis. I’ve had three children and childbirth is a walk in the park compared to dealing with this.
It’s always very intimidating to see a new doctor because of what I just described above. How do you convince him/her that you’re in constant, unrelenting pain because of your kidneys when you have a disease that 1) they’ve probably never heard of and 2) the information about that disease is outdated and inaccurate?
You do an extraordinary amount of praying before you go in – or at least I do. You continue to pray while you’re there. You pray for compassion and understanding. You pray that the doctor you are talking to isn’t too high and mighty to see you as an individual with a rare disease, and views him/herself as a partner in your care, instead of being a dictator that doles out cookie cutter treatments. You pray that they’re willing to listen and be educated about a disease they know nothing about by someone that does know about it because they have to live with it. You pray that the doctor will be willing to work with you to find something that actually works instead of just trying to make money off of something they really have no interest in understanding and would rather do expensive, useless treatments instead.
I was fortunate enough to get good doctors both times that I was in pain management. They both took the time to let me explain MSK and how it affects me, and they both allowed me to send them more information about it that reflects the true symptoms and complications associated with it. The first doctor worked with me to find a great combination of medications that helped tremendously. I was with him for several months, but I ended up moving from Florida to Tennessee and had to start all over.
I’ve been out of it for 7 months now but I’m reluctant to get back into it and I’ll explain why. The most recent doctor I had was great too as far as listening to me about MSK, but he wouldn’t put me back on the medications I was on previously because he said the dosages were too strong, even though my doctor in Florida told me that they were low dosages and they worked well for me. I was able to function on them. He did prescribe some medication, but at my very first appointment, he started talking to me about injections and a spinal cord stimulator. He was very excited about the spinal cord stimulator and seemed to really be pushing it. I explained my reluctance to do either one, and I gave him very specific reasons for that. Nevertheless, I watched a video of the procedure he wanted me to see, agreed to a psychological evaluation, took the DVD about spinal cord stimulators that he wanted me to watch, agreed to do my own research, and think about it – mainly because I was afraid of being discharged as an uncooperative patient if I didn’t; but also because I didn’t know anything about them and I’m all about learning about new things. The way he talked, this was the answer to all of my problems.
I really did do the research, weeks of it, and decided I didn’t want to do it. It would mean more surgeries on top of all of the surgeries I’ve already had (14 so far just for kidney issues with 11 of those surgeries being in the last 8 years). I will have to continue to have surgeries for kidney stones for the rest of my life – that’s just a fact, and with each one it gets harder to recover. I’ve also had surgeries and surgical procedures for other things that weren’t kidney related. I just don’t want to go that route when I know medication works for me but he just wasn’t willing to prescribe it. Honestly, I feel that that’s my right as a patient and my doctor should respect that.
We discussed it at my second appointment the following month, and I told him I didn’t want to do it and why. He continued to try to talk me into it, telling me how it was so much better than medication. He showed me a video of an interview he did on CNN, talking about one of his patients that had great success with the stimulator after falling off some scaffolding and breaking her back, then injuring it again later. I won’t lie, it was impressive. That’s fabulous for her and I’m glad she’s found something that works, but I’ve never broken my back – I have crappy kidneys that are progressively hardening. They’re two totally different things. He also told me a story (with a smirk on his face), about one of his colleagues that had the surgery done and who sometimes complained about getting “zapped” if he moved wrong or laid down wrong. I’m sure that’s very amusing for people who don’t have to actually endure it, just like kidney stones are.
He was probably just trying to lighten the mood a bit, but that’s horrifying to me – plus it takes more surgery to correct. We ended this appointment with him telling me he had 16 of these surgeries, either the trials or the permanent placement surgeries scheduled in the next two weeks with consults for more scheduled into the middle of the following month. I agreed to think about it some more. Maybe it’s just me, but that seems like an awful lot of people jumping on the bandwagon…either that, or they were being pushed.
I ended up getting his PA at the appointments after that, and I was asked about the stimulator once. Again I explained why I didn’t want it and it was never really brought up again. Due to losing my insurance for a while, I had to stop going in October 2013. So again, I was in pain management for less than a year. I ended up in the ER in November, the day before Thanksgiving, after having slept off and on in my recliner for a week with my heating pad on high because I was in so much pain that I couldn’t lay down flat, couldn’t take a deep breath, could barely even move. Diagnosis – renal colic; that’s the thing with this disease, you never know if it’s colic, a stone that’s going to require emergency surgery, hydronephrosis which is where your kidney backs up with fluid and swells, or a really bad infection that’s going to lead to sepsis. They gave me IV pain meds to get things under control and sent me home with a small prescription to get me through for a few days. I also had pneumonia, but they neglected to tell me that at the time.
I haven’t been on any pain medication since then and it’s extremely hard. I’m so fatigued all the time because of the CKD and some days it’s hard to even get out of bed, much less make it downstairs. I’m a co-admin for our closed Facebook group and I haven’t been as active as I should be because I can’t, not because I don’t want to be. I don’t do much online writing anymore. I’m now a single mother and I have two kids in school, so I try to stay in bed while they’re there, so I can go downstairs and spend some time with them when they get home, help with homework, etc. I sleep a lot – I can’t help it, my body just shuts down. If only the pain shut down too, but that never happens. Sometimes it’s a little easier to deal with than others because it varies in intensity, but it’s always there. Always. I really don’t go anywhere unless I have to. When I go to the store, I have to take a nap when I get home. The house work is never really caught up. I’m just trying to do the best I can with what I’ve been given to work with.
My new insurance went into effect in March of this year, and when I asked about pain management, I was told specifically that Medicare is trying to force people out of it by making it as difficult as possible for people to get into it. I was told they are refusing to cover a lot of things related to treatment and medication. Whether that is a fact or one person’s opinion I don’t know, but that’s what I was told. The doctor I was seeing doesn’t take my plan, but another one in the same practice does (which doesn’t make a whole lot of sense to me if they’re in the same practice, but okay). I was debating making the call, because I wasn’t really sure if I wanted to start taking medication again even with the pain I’m in.
Going through withdrawals if something happens and I can’t afford the medications or the pharmacy suddenly decides to stop carrying them isn’t easy or fun, and I wasn’t sure if I wanted to go through the hoops about a spinal cord stimulator and injections with a new doctor. I finally bit the bullet and called on a Monday to see what they had to say. I was told that my six months was up on the previous Friday and since I didn’t call then, because of the new laws, that I would need a new referral to the practice and I would have to go through all of the paperwork and everything again and come in as a new patient. I missed it by three lousy days.
At this point, I’m not sure what I’m going to do and I can’t help but wonder if it’s better to just suffer instead of going through all of the aggravation of trying to get treatment. I don’t know if I have the energy for all of that. Here in Tennessee, things just seem to get crazier by the day. Now legislators are trying to limit access to over the counter allergy medicines (again) by requiring a prescription because they’re used to make meth. They moved a lot of them behind pharmacy counters several years ago to try to curb the problem – that didn’t work; they’re still making meth busts every day. They started a meth registry to track people who have been convicted of meth production, so supposedly they could prevent them from buying large quantities of these OTC medications. That was a great idea, but hasn’t really worked out well in at least one county. This is local, which is how I found the story, but you have to assume if it’s happening here it’s happening in other counties within the state as well:
http://www.wbir.com/story/news/local/2014/02/24/tbi-meth-registry/5763677/.
I have year round allergies, so if I want something that actually works, it’s going to mean more trips to the doctor and more copays just so I can go outside and still be able to breathe. That means less money for monthly visits to pain management and prescriptions for pain medications. It seems like either way, I’m going to lose and I know I’m not the only one. There are people all over the state in the same boat.
What lawmakers don’t seem to understand or care about is that these laws that sound so good on paper and make them look like tough guys to some of the voters are only making life more difficult for those of us who don’t break the law. People continue to make meth despite the previous efforts to curb that, and they will continue to do so if you keep arresting them and just letting them back out of jail with a slap on the wrist. If they start requiring a prescription for allergy medications, addicts and dealers will sell allergy medications just like they do pain pills. THOSE WHO ABUSE AND SELL MEDICATIONS ARE GOING TO FIND A WAY TO DO IT, NO MATTER HOW MANY LAWS ARE ON THE BOOKS. THEY ARE CRIMINALS, THEY DON’T CARE ABOUT LAWS.
Maybe these government officials should think about being tougher on the people they have already arrested for these crimes, especially the repeat offenders that land in jail every few months, instead of making law abiding citizens (SICK AND INJURED law abiding citizens at that), suffer for no good reason. How many repeat offenders end up right back on the streets again? It doesn’t matter how many laws are in place if the “powers that be” don’t do their jobs and follow through on the punishments for the people that break them.
Our government, both state and federal can’t keep track of and enforce the laws that are in place now – much less the people who break them. THAT’s the problem; not the little 80 year old woman that has terminal cancer or the 65 year old man that worked construction his whole life and fell off a ladder. I’m not the problem either, so leave us alone and let us live in peace the best way we know how. Leave the legitimate doctors and pharmacists alone and let them do their jobs – stop making them force invasive procedures on patients because they’re “better than taking medications.” Stop treating the general population as criminals and do a better job of watching the ones you already know have broken the law. Maybe then you’ll see a real reduction in the abuse of medications.
Mary Maston
MSK Advocate
I have been living in pain for 11 years after a car accident.I have undergone 7 surgeries and 2 artificial disc’s. I’ve had 5 bone spurs cut off and my nerve endings burned. Yet I cannot ‘qualify’ for Disability because “I filed TOO LATE”. I have just been turned down for my final appeal.
I lose my insurance come Sept. and I refuse to buy that crap from the half white bastard ………..some days I just don’t get out of bed.
oh well.
Aileen Hutcheson….i feel very bad for you. it is always a fight to get help. i wish you well and completely agree with your comment.
I have been a chronic pain sufferer and a prescriber of pain medication for years. It is unconsciousable that Pain is supposed to be the fourth measure that physicians routinely evaluate, that Pain and chronic pain should be recognized as a disease; and that physicians should be routinely intimidated by ignorant lawmakers who have no concept of the difference between pain mangement and drug abuse. There are many more alcoholics whose behavior has destroyed families, killed others in autos, harmed those at work, etc.. WHere is the outrcry to minize usage of alcohol, to arrest package store and convenience store owners for supply a drug (alcohol) which has no medical use, but cost the economy millions of dollars per years, loss of hours and destruction of family values. Trying to manage pain in chronic pain suffers allows families to stay together, allow individuals who desire to work to keep on working, allows those who want to interact with their family to be supportive family members. Punishing doctors who try help those who are suffering would be like telling the politicians they can’t have their alcohol because someone is an alcoholic. I bet they would never pass a bill to prevent the politicians from having easy access to booze: but pain suffers have to worry that doctors who believe that they are here to reduce pain and suffering have to worry that they have to treat politicians who are ignorant of pain rather than treat pain suffering patients. I would only wish that some of these politicians who feel that they are saving society would have the ability to live in mine or some of my patient’s shoes for a day or two. They would be looking for disability, sitting in a fetal position and begging for help. They should be careful what they wish for; for they may be their own worst enemy. Let them know what it’s like to get up at 4:00 a.m. to take pain medicine so I can get up at 6:00 a.m. to go to work. Perhaps these “holier than thou” politicians should spend a few days at a pain management center and explain to some of these patients that they really don’t need the medication.
Dear Dr. Fundin,
I live in Massachusetts; the “epicenter” for the newest wave of opioid hysteria, revolving around the newly released painkiller, Zohydro.
Between the relentless media coverage, political incompetence, anti-opioid groups and pervasive public ignorance about chronic pain and opioids in general, it should come as no surprise to me that there would be opposition to this drug. But what I have witnessed, has been nothing short of complete insanity!
Not only was Governor Deval Patrick’s attempted “ban” on Zohydro, an impulsive and reckless decision, it was far from a rational way to deal with the states drug problems. As far as I am concerned, this was a direct attack on every chronic pain patient, regardless of whether or not they depend on these medications to function.
I have read countless articles about the “prescription painkiller epidemic.” The most one-sided and bias articles, supporting Patrick’s “Zohydro ban,” are written by journalists who live in Massachusetts but know nothing about this issue. Each time these stories focus solely on addiction, abuse and fatal “accidental” overdoses, while implementing misleading statistics in an obvious effort to support Gov. Patrick’s agenda.
Not one story has ever focused on the real epidemic, our “national health crisis” of undertreated chronic pain. Not one article has presented an objective and rational perspective discussing the the fact that there are well over 100 million American adults who suffer from chronic pain. Instead, nearly every media outlet plays right into the propaganda: blaming the escalating abuse of heroin on previous opioid use, misusing the term dependency to mean addiction and associating opioids to being the equivalent to heroin.
As a chronic intractable pain patient I have never been adequately treated in my home state. For many years now, I have had no choice but to travel out-of-state for proper pain-care. Most physicians, including the majority of “pain specialists” now refuse to prescribe opioid analgesics, even to well documented chronic pain patients, in Massachusetts.
It is beyond absurd that anyone should have to leave their own home state for basic medical care! But, the sad reality is that many chronic pain sufferers are forced to leave their homes, searching for adequate treatment. Many pain patients have been completely abandoned by the medical system and forced into extreme measures, in a desperate attempt to relieve their severe pain!
The drug policies that have been created have done nothing to curb abuse or addiction. Instead of using a rational approach to a complex problem, even more aggressive policies are made, putting more restrictions and barriers in place to adequate pain treatment for legitimate chronic pain patients! This is not the way to solve this problem, far from it. These policies are a great way to perpetuate addiction and drug abuse, while at the same time destroying the lives of innocent people suffering from chronic pain.
This states treatment of the sick and disabled is unconscionable! I know of two separate incidents of people dying from terminal cancer, whose physicians “medically abandoned” them when they became too afraid to continue prescribing their pain medications to them. Neither story was ever in the mainstream media, these were people I knew personally and both have passed.
What these “anti-opioid/ anti-drug crusaders” don’t seem to understand is that they are advocating for the mass torture of millions of people in pain. How can anyone honestly believe that creating a statewide ban on this, or any pain medication, is going to stop a drug abuser from abusing drugs? We can not continue impeding on peoples right to proper medical care, in order to protect an addict from themselves.
The only way we can truly curb drug abuse and addiction is by taking responsibility for our own actions, teach your children about the dangers of drug use, create a coordinated education and awareness campaign, as well as better treatments for those suffering from mental illness and addiction. Our current drug policies are counterproductive and only serve to hurt those in need. It is an extremely narrow-minded approach to a complex problem!
These policy makers do not seem to care about the consequences of such ridiculously absent-minded decisions. All the while, the people who suffer from debilitating chronic pain, the very people that this medicine was designed to benefit are left to suffer in unimaginable, excruciating pain, effectively being silenced.
It is long past due that we put a stop the cruel and inhumane treatment of chronic pain sufferers! We must raise our voices and end this silent epidemic of needless mass suffering once and for all.
I applaud you Dr. Fundin! I know that I am not speaking for just myself when I say, thank you! I truly appreciate everything that you have done to help give a voice back to all those people suffering in pain, who thought they no longer had a voice. We do have a voice and all of us must start to use it to fight against this huge injustice being waged against us!
C.M. Phillips
I too lived in Massachusetts (Cape Cod for 25+ years) before coming back to Florida. I still read the local paper online & find your insights into the articles that are published there, spot on.
I too, as people you knew, was abandoned by my Primary care doctor while trying to move, the forced withdrawal.
There are some really awful doctors there in my experience, and some really excellent ones too.
The excellent ones want to help but were just too frightened to give proper dosages (in my experience of CRPS).
It’s scary to see it getting worse in almost every state in the country when reading sites like this one & petitions & other intractable pain patient sites.
It is absolutely reprehensible that ‘the powers that be’, meaning the DEA, Politicians & Policy makers, sure seem to want to protect addicts, that *will* find drugs, so much more than they want to protect the vulnerable, disabled & much higher numbers of the people in intractable & post surgery & acute pain.
I find your comments so keenly written & informative & compelling, so much so that I surely hope every DEA agent, Congress Man & Woman, Politician, Doctor, well basically everyone, reads it & re-reads it if necessary.
Thank you for writing it & I hope you stay as well as you can possibly be with what ails you.
I just wanted to say thank you for so eloquently stating the plight those of us who face a life battling chronic pain face. The politicians are destroying our ability to have any semblance of a life all in an effort to keep people from abusing drugs. No laws will stop people from abusing drugs. If abusers followed the laws, we would already have stopped the problem of addiction. Making chronic pain patients and their families suffer for the actions of the abusers is not only counterproductive. It should be criminal.
Creating a situation where a person dying of cancer is denied access to medications that could ease their pain is insane. These people are dying. Even if you say you are worried they may become addicted is a ridiculous excuse. They are dying. Let them have access to the medications that could potentially allow them to spend time with their families, saying goodbye, instead of forcing them to live their last days screaming and crying in agony.
This last statement is not an exaggeration. Those who face a life of chronic pain spend many days hidden away from family, because the pain is so intense they cannot even think enough to have a basic conversation. People are dying. Not just from cancer pain, but because they are being forced to live in pain unlike anything most people will ever know exists.
Personally, I have a disease that causes pain rated as worse than labor pain. I face this pain 24 hours a day 7 days a week for the past six and a half years. Can anyone who has gone through a long, painful labor imagine being in labor for six and a half years? Now imagine being told that you cannot have access to any of the medications that could help you through that pain. This is the life I lead.
It took nearly three years of trying to get adequate treatment and submitting myself to a surgery that had only a 30% chance of helping me for my pain doctor to finally prescribe opioids for the pain. The spinal cord stimulator mentioned in your story is the surgery I was forced into, because I had pain so severe that I prayed every day for God to let me die. I was desperate enough to try anything to stop the pain, and the doctors pushed the spinal cord stimulator as the “best” way to treat my pain. Yet, how many people out their would allow a surgeon to operate on their spinal cord with only a 30 percent chance of having that surgery be effective?
This is the desperation we feel. We allow the surgery, because we are offered no other alternative. We are basically told that we can either allow them to operate, or we will be denied access to any medications that may help the pain. Finally, because I am one of the 60% who is not helped by the stimulator and because I am also one of the 30 percent of people who suffer complications from the stimulator surgery, I was given adequate pain medication, opioids, to help combat the pain and give me some semblance of a life.
Yet, because of the ferocity of the media attacks on the use of opioids to treat chronic pain, I fear losing access to these meds at each visit. I go to my doctors visits each month. I have never missed an appointment. I have a urinalysis done at each visit to prove I am taking my meds as described. I have never asked for more than I was prescribed and have never used more than my prescribed dosages. Yet, I am afraid each time these life giving medications will be taken from me, not because I have done anything wrong, but because there are others out there who are abusing them.
It makes no sense. People are committing suicide every day, because they are denied basic medications that could allow them to function. I would have been one of these suicides if I hadn’t found a very informed doctor willing to help me. But even after finding this doctor, I have to worry each month that something will happen to my doctor or some politician will limit his ability to help me. I am not a drug addict. I am a person with a documented illness that causes unendurable pain, yet I’m made to feel like a criminal and a drug addict at every turn.
Please help open up access to the help people like me need to have some semblance of a life and stop treating us like we do not deserve this help because there are people out their who abuse drugs. It is blatantly unfair to make millions of people suffer, so that other people won’t act badly. People will abuse drugs no matter what. Drug abuse was here before these medications were created and it will be here long after, whether or not you make chronic pain patient’s lives untenable.
Thank you again for your eloquence, C. M. Phillips.
B. Stewart
To, Barbara Stewart and c.t.,
I have been making my way through reading many of the comments written by everyone and I got a chance to read both of your comments. I just wanted to say thank you both so much for your kind words! I was so surprised and extremely flattered that you would take the time to comment on what I wrote!
There seems to be no limit to what some people will do to fight drugs! So many have turned away from common sense and compassion, waging a war on drugs and addiction. Whole groups of people that are now dedicated to punishing millions of chronic pain patients, for the actions of a handful of drug abusers. It has truly become a “war on reason!”
Dr. Fundin has done something very special here! He has brought chronic pain sufferers together to raise their voices against this great injustice!
Through his blog, Dr. Fundin has given so many of us the forum on which to speak. To be able to address a far greater epidemic; that of undertreated chronic pain. Our individual stories attest to this national crisis, one that is directly attributed to the media hysteria surrounding opioids and the general ignorance about chronic pain in society. This, a much bigger story and a far more important issue, that the media would like to continue to ignore!
Thank you Barbara Stewart and c.t. for your very kind words. They truly have helped me and inspired me, during a rough time!
Thank you again, Dr. Fundin, for everything you have done and continue to do for the pain community! Thank you for giving us the forum to speak during a period of time where the opinions of those suffering from chronic pain don’t seem to matter to the policy makers who are creating laws that directly affect our lives!
Sincerely,
Christopher M. Phillips
I have bilateral Medullary Sponge Kidney Disease and Loin Pain Hematuria Syndrome. I have had horrible pain since I was not much older than a toddler. My parents believed me and took me to doctor after doctor, but they all said about the same thing. “Get use to it. It’s growing pains.” I was fortunate to find a doctor when I was in my mid-20’s who diagnosed fibromyalgia, but I still did not have the correct diagnosis or treatment for my pain. I was finally diagnosed with MSK when I was 38. MSK is a congenital birth defect of the kidneys. By the time I was diagnosed my kidneys were completely full of stones. I joined a support group on FB and learned that my Vitamin D level was probably low, which was common for patients with MSK because their kidneys cannot change natural sources of Vitamin D into the usable form of D3. As soon as i began supplementing with D3, my “fibromyalgia” symptoms almost completely disappeared Then a few years ago my pain level increased to the point that I was no longer able to manage with OTC drugs. I’m one of the lucky ones, though, because my family doctor and my urologist have both had kidney stones and have experienced the pain that I have daily. My urologist thought I might be passing gravel, so I began to strain and discovered that I was passing small stones almost daily and larger stones almost every month! Getting out of bed in the morning is excruciating as my pain meds have generally worn off by then. I often dream that I’m in labor or that I have been stabbed or someone is kicking me because the pain doesn’t take a break at night. I can’t imagine my life if my doctors refused to treat my pain. I was referred to a pain management doctor a little over a year ago. Even with a good regimen, I am still not able to do the things I did a few years ago. I cannot walk very far without causing a stone to pop out and begin its journey. Riding in a car, even when the road is smooth, is painful because the vibrations cause my stones to move. I have also had to advocate for my father, my grandmother and my husband who were not given adequate pain meds following their surgeries. The nurses were afraid they would get addicted to morphine if their pain were treated appropriately. They have actually said this to us on more than one occasion, despite a history of no drug or alcohol abuse ever. Even my husband who was discharged from the hospital on a Sunday afternoon, 3 days after a quadruple bypass, was not given enough pain meds to last until he could see the doctor for his follow up. None of his other doctors wanted to treat his pain because his cardiologist was responsible for that. But they could not get him into their office sooner and would not prescribe over the phone because he had seen the doctor in the hospital and not in the office, so he was not considered a patient. He was in an impossible position. He rationed his Vicodin, trying to make it last until his follow up several weeks later. Unfortunately, he ended up back in the hospital with pleurisy. He could not take a deep breath because the pain was too great. What have we come to when doctors and nurses are more worried about a problem that might occur than the present and very real problem of pain? How can they look at a patient and see their suffering and still refuse to alleviate it? It seems that if the doctor has experienced ill health or in my case, kidney stones, they tend to be more compassionate and more likely to think it is important to alleviate pain. Too many people with real pain are treated as if they are criminals seeking drugs.
Every morning is the same. I wake up to the searing pain of being in one position too long. I’m trapped this way, my body paralyzed, until I can painfully begin to straighten my muscles that have been in solid cramps and spasms all night. When will the day come where they don’t straighten anymore. Is today the day? Sometimes I just cry. Sometimes that day in the hospital rushes back to me. I went in to have that beautiful baby girl. I was intent to do it natural with my first. Absolutely positive I would with my second. Every doctor I saw literally scared me into having a C-section. “They’ll break her shoulders, it will take too long and she will die, you’ll be rushed in for a section and having the epidural in place could mean her life or your own”. STILL I chose natural. I did it the first time. There’s no doubt I could have done it again. But out of sheer terror, I agreed to the epidural. The only ones who understand are the other injured mothers.
The Doctor (who I later found was a nurse assistant), jammed the epidural needle into my spine. I’m a tough girl. I was expecting something jammed into my spine. He started the medication and I couldn’t take it- pinching burning, fire, LIGHTENING!! I finally screamed and moaned. With the needle still in me, he asked me “why didn’t you tell me I missed??”. That made me feel guilty like I had done something wrong. He whipped the needle out shoved it back in and I collapsed back on the bed. He left in a haste. The full body uncontrollable shaking came next. I was nearly incoherent. He had just given me Arachnoditis. I couldn’t speak and bit my tongue a few times. I tried to ask if this was normal. “Oh yeah we see it all the time”. THAT does not mean it’s normal! Then I had to be catheterized. My epidural had been so misplaced I was numb up to chest level. My Oxygen was not stable. Then they started the IV drugs along with epidural drugs. This should NOT have happened! I was opioid naive. My daughter and I got a double whammy of IV fentanyl and what he was pumping into my spine. Which happens to be way too much according to the anesthesiology charts. I’m so glad my baby is here. So glad. What she went through was torture, outside of what I did. My Bp and my daughter’s Bp were all OVER the charts. I was dropping and gaining blood pressure, according to the monitor. But the anesthesiologist never came back in the room. He should have been monitoring me. The doctors had been telling me I couldn’t have her normal. No way, not with your weight, she’s too big. So when I finally said I needed to push, the only nurse in the room said oh yeah go ahead we are gonna be here a while and laughed. I gave one big push, I was CROWNING, and my mom looked down and said “there’s nothing to catch the baby!!”. It brought this nurse from her lazy standing around on her cell phone to calling a code and a team rushed in. Two more good pushes and she was OUT. Face up and all.
These are my morning thoughts sometimes. Other times they are the horrific epidural injections “everyone has to go through” at the pain clinic. At this time I was being treated for pain for Adhesive Arachnoiditis. A neurosurgeon ignored it and suggested I try these injections so I thought it was fairly safe. That needle went in so fast like a jab and I instantly burst into tears. I started to push myself up from the bed. The room was spinning. I fell completely back down and held my eyes tight, ready to vomit. I told the tech I can’t hear! I can’t hear anything!! He said it’s normal I’ll get the bucket. That was dural puncture number two. I felt like somebody had crushed my tailbone and I couldn’t lift my legs. That night, I was sick as a dog “with flu-like symptoms”. I had every symptom of chemical or aseptic meningitis in the book.
I returned to tell my pain doctor how sick I was. And my bladder symptoms were so much worse. She said sometimes that happens. Let’s try another shot in 2 weeks. During those 2 weeks I was getting sicker and sicker. I could no longer urinate any longer. I ended up with a blood infection in the ER yet again begging that I can not urinate. I was finally sent to a urologist where he told me bladder and bowel were COMPLETELY PARALYZED. I was catheterizing myself. It was pain and humility. I trusted the doctor again, and went in for my 2nd shot. Scared to death. I told the tech, who told the doctor what the urologist had told me. He said there’s no way it could be related. He either didn’t know what Cauda Equina Syndrome was, or just blatantly ignored it. Bam! Shot number 2 herded in like cattle.
This time my right leg that had been completely numb, like your lip at the dentist numb, started fiery pins and needles feeling somewhat. Was this a sign of hope? Or of things worsening? One more injection after this. Like first. Aseptic meningitis from dural puncture. It took my family traveling halfway cross country finding help. More than 15 neurosurgeons, physiatrists, neurologists, you name it. They didn’t want to say the word.
I DESPERATELY wanted to trust my doctor. Some people say to me if they were harming you why did you get more? Because I was SCARED. I was not given INFORMED CONSENT for any of it. And, not until months or even years afterwards did I find out these injections are NOT FDA approved.
I’m 35 now, mother of 2 little girls, step mother of two adult teens. I can’t even change my clothes or give myself a bath. My little girls will never remember fun mommy the way I used to be. It slices my heart like a knife. Like I might die any day from a heartache. But I go on for them and my husband.
This was not from some terrible accident. Not from some horrible virus.
THIS IS FROM COMMON, EVERY DAY PROCEDURES. Yes, you blindly blink over the consent forms, and you think “this can’t happen to me”. Well guess what. I though that too. ANY invasive procedure into your spine can cause Arachnoiditis. Which is why the FDA just put out a warning on them. They are creating an army. A broken, lifeless, army that needs care and disability.
I forgot to mention. One of the main symptoms of Adhesive Arachnoiditis is blaring pain, worse than child birth, burning, fiery pain described only as that of end stage cancer, without the RELEASE of death. This is intractable pain, and without the pain meds, which are our TOOLS to survival, many of us would not be here. Some people do choose death over suffering without proper medication, and some die from related complications. I know several who have, sadly. We continue the fight for help and to spread the word in their honor.
Dawn Marie G
Arachnoiditis Society of Awareness and Prevention
On Facebook
Dawn,
I have that spider disorder as well, followed by the horses tail. Mine was caused by the same thing, an epidural for childbirth. After that, I had a Myelogram with Pantopaque, the oil based dye that is placed in the spine. Hello Adhesive Arachnoiditis and Caudal Equine disorder! My bladder and bowels aren’t paralyzed, but the sphincter muscles for them are. Depends are a staple. The pain is so bad right now, that I want to go back to bed. On top of this, some of that dye got into my brain, and I have areas that are now dead, as if I had a stroke.
I had more epidurals, trying to relieve the pain, but they just made it worse. Then, I was talked into having a Spinal Neural Transmitter. That didn’t work very well, and after I was in a tornado, it stopped helping at all. I started to have pain in my neck and shoulders, and was told to get an MRI. With that SNT in me, that was out of the question, so I had it removed. The neurosurgeon who removed it verified that I had AA, as well as many other spinal problems. When I told my pain management doctor that I had that SNT removed, he was very angry, and told me that I should have had it reset. When I told him my reasons for having it removed, it didn’t make any difference. He actually refused to give me pain medications until I got the report from my neurosurgeon telling what I had. He wouldn’t believe me.
I barely make it through the day with morphine, hydrocodone, Lyrica, Cymbalta, and a muscle relaxer. Getting up in the morning is hard, just as you said. Will today be the day I can’t get out of bed? Will today be the day that I am paralyzed? Will I have to take the immediate release morphine today, just to make it to the computer for a bit of socializing? How will I manage to make it to my doctor this month? Will I be denied my meds because the DEA is being crazy? I hate going to the doctor every month, just to give a urine sample and get a script.
In my state, Medicaid will cover the cost of the co-pay from Medicare for only 12 visits a year. I have other doctors I have to see, all because of the AA. My blood pressure can’t be controlled. My lung function is below normal. I have osteo-arthritis in my legs and hands, because of the many mobility issues I have. Using canes and crutches for ten years caused my wrists and fingers to lose the cartilage. All the discs in my back are deteriorated. And I have spasms that jerk me out of my wheelchair or off my bed. Each of these symptoms has to be treated by a different doctor, so that means I have to pay the co-pays for at least eight visits. I am on SSD and SSI, so this really hurts me financially.
What the DEA doesn’t want to admit is, an abuser of drugs will find those drugs whether they are kept from those who need them or not. They can’t admit that there is a difference between dependency and addiction. They paint those of us who NEED those meds just to have a semblance of quality of life with the same tar brush they use for addicts. They have never been in constant, 24/7, pain that grows worse daily. Pain that makes you wonder if taking all of your meds at once is the answer. The thought of dying isn’t scary at all to those of us who need those meds, because it would mean we would no longer be in pain.
What is even worse is, family and friends who haven’t had any education about our condition either leave us, or ask us to leave them. My husband of 25 years said he wanted a divorce from me because I was “old, fat, and crippled”. I was 45 at the time, taking steroids for the pain, and was using Canadian crutches when I had to walk. As we know, 45 is still young, steroids cause weight gain, and using crutches isn’t being crippled. My mind is still alive, and I can still read and use the computer, even if my typing is slow and painful. I can give instructions on how to do the crafts I used to love so much, even though I can’t hold a needle or a crochet hook.
Because my mind is still good, I enrolled in college. I am pursuing a BS in Criminal Justice. I’m not sure if I will be able to use it, but doing the work and gaining knowledge does help distract me from concentrating on my pain. Yes, I have ADA help, getting my books in paper form instead of having to read them on the web. I also have extra time to submit my papers and projects because of the pain and ADA. Even so, I am carrying a 3.59 GPA, which is something that I take pride in. Even if I can’t walk, I can still give advice even during my schooling. I’m not sure if I will be able to do any work after graduation, but I can still improve my mind, and show my grandchildren that there is nothing they can’t do. If I can do this, they can too. They are still young and healthy, and I encourage them to do their best.
We must stand up against the DEA and the drug companies, and demand that they do research on pain, and how to relieve it, without it costing so high that those who need it can’t get it. We must insist on Compassionate Drug Laws that takes into account those of us who are in pain 24//7/365. Use that money they are using to stop US from getting the help we need to fund more rehabs and prisons for those that abuse those same drugs. This must be done by US, and those that care for us, because the DEA certainly doesn’t care about us at al.
11 years ago I had my first kidney stone. A year later I was diagnosed with Medullary Sponge Kidney. My Nephrologist said both of my kidneys are filled with stones. My treatment plan was to follow a specific diet, drink lots of water and take pain medication. As I researched I found a doctor who was able to help some by cleaning out my kidneys every 2 years. I have had multiple surgeries over the past 11 years.
My life has completely changed. I am no longer able to work, I can barely do my daily home duties. I can’t make plans or work hard like I used to, because I spend most of time trying to distract myself from excruciating pain from kidney stones. My PCP has agreed to give me 2 Norco per day. The rest I have to manage on my own. Some days Norco doesn’t even touch the pain while other days it may take the edge off.
I have 5 beautiful children who get to witness their mother screaming in agony, and suffering through life. I manage the best I can every single day. I stay away from the ER as I do not want to be labeled and I certainly cannot afford to be a hospital regular. I belong to a closed Facebook group for people who have Medullary Sponge Kidney and we are over 1,000 members strong. This is where I get my education regarding MSK AND support to go on with life in pain. Many of those people are broken down and rejected from doctors and ER’s. Some are struggling with infection, sepsis and lack of proper care.
It breaks me when i can’t show up for my kids sports or school events. MSK takes all my energy.
I pray some day someone comes up with a humane treatment plan for people with Medullary Sponge Kidney. There are only a small percentage of people that show symptoms but I know about 1,000+ that are fighting to survive one day at a time with me. Thank you for the opportunity to share my story.
I am a 54 yr old female, I suffer from Chronic Pain with a horrible disease, called Arachnoiditis. In 2004 I hurt my back and was sent to see some local Ortho’s for my pain, first thing they brought up was a series of 3 Epidural Injections, with Depo-medrol. I agreed, b/c you are suppose to trust Dr’s to help you not harm you. Of course, these injections did not go well. None of them were done with fluoroscopically , they went in blind. I ended up in the ER from the first two, then the last one, I had a instant headache. I was a Medical Assistant and I knew instantly that he had punctured my Dura, but had no idea what the rest of my life would be like. After a few months of trying to treat me, they decided it was time for me to see a PM, on my first day he diagnosed me with Arachnoiditis, which stemmed from the Epidural I had done. I was shocked, had no idea what this weird sounding disease was. I came home and started researching on the interenet. I could not believe that I had this lifetime, no cure, no treatment disease! Two months after the injection, I had to consider Disability, the pain was so much that I could not bear to work any longer. I had worked my whole life, since I was 13, loved my job. This was very depressing and hard for me to accept, but I had to move on. This disease has totally taken over my whole life, from loss of spouse, loss of friends, loss of my job and most of all loss of my social life. Chronic Pain for most of us, is not our choice, I did not ask for this. It saddens me to see all of us, that rely on opioids to even keep on going, having to fight for this right to take these medications. I know, that if these medications were not available to me, that I could not live in the pain that this disease gives you. Not only do they help us, keep on going in this world, they keep us alive. We, are like all of you with families and lives. Yes, we suffer daily from Chronic Pain, but do we not deserve the right to have a somewhat normal life beyond the pain?
Sadly, I am very aware of these stories. I heard them daily when I was a practicing general surgeon/pain doctor/GP. (board certified in surgery and by the American Academy of Pain Management)
Ironically, I fell and broke my back. Now, I am unable to get adequate pain control for my neuropathy from the post traumatic cauda equina syndrome. The pain doctor wrote, after my first visit with him, that I had exhausted all forms of therapy, (not true) and I qualified for epidurals (never proven to help spinal cord injuries) or the placement of a dorsal column stimulator. I prefer no interventional therapy since I had DVT (deep vein thrombosis) and MRSA, after the back surgery that I had to repair my broken back and a large dural tear discovered at that surgery. I feel that the opiates were stopped to try to blackmail me into getting expensive, and in my case, dangerous procedures. The doctors don’t give a damn! They are not the people in intractable pain! Sadly, i my case, it is pain that could be relieved with adequate medical care. The pain doctor, neurologist, and FP are almost useless. Now, I have to determine what part of the day that I want to suffer!
Michael, I have a question that maybe you can answer. I have what feels like a tube running from the base of my skull down the left side of my neck. Sometimes it feels as if something is running through it, similar to a tingling feeling. If I start at the lower end, and push up as if squeezing a tube, to a point under my skull, this feeling stops. If I hold pressure on that area, there is nor tingling. When I let off, the tingling starts after a few minutes, and grows longer. Is this possibly a CSF leak or a hole in the base of my skull that is letting the brain tissue leak? I have said something to my doctors, including a neurologist. The neurologist said it was just a type of migraine. There is no pain from it, but I do get nauseous when it is going on. You can contact me at RoxAnna.Burkhart@yahoo.com if you think you may know what is happening. Thank you.
My story spans over 25 years. My jaw was broke as a child and I have endured many different sides of pain. I worked as an RN for many years listening to people call pain patients drug addicts and many other horrible names. Of course they didn’t know I was one myself. After 5 surgeries I now am unable to work. Not that I could work as a nurse while taking pain meds anyway but that’s another subject. I can’t find a pharmacy to fill my meds that will take a discount drug card so I end up paying 800 a month for meds. That’s hard with no income. It’s so sad that patients can’t get meds and when the pharmacy looks and talks to you like a criminal it just kills my spirit even more. As a medical professional I understand both sides but not at the expense of withholding medical care from those that need it. Addicts find a way and still do get their fix. This has only hurt actual pain patients with real issues. I wish someone would take responsibility for whats happening. Thanks doc for all your compassion
What people have said, esp current or former medical personnel rings so true! The shoe is now on the other foot.
My doctors I have to say have been empathetic with me. We’ve tried different things to help my pain. Some of it helps, but only for a very short time. Most days my pain meds relieve my pain enough that I am comfortable sitting up for a little while, or moving in bed. I have to say, I am really tired of this. A pharmacy that I had used for about 8 years refuses to fill my pain meds! The pharmacist that would chat with me like we were neighbors now looks at me like I am the dirt on the ground!
Sorry, I have to stop. I did not ask the guy in the truck to hit me. Didn’t sign up for this.
Hello all. I’m 27 years old, mother to a 3 year old, and have my degree in elem Ed. Here’s my story. In 2010 I have birth to my beautiful son. I was hoping it would be easy. After 26 hours he was born but not without complications. I was given an epidural in which after an hour I couldn’t move my arms, or legs for over 24 hours. They kept giving me the meds and at one point stopped it 6 hours before I could push. Nothing changed. Still couldn’t move. I tried to push for 2 1/2 hours, they attempted a vacuum extractor in which it popped off my sons head twice. Eventually this we found out caused subdural hemorrhaging and he has arachnoid cysts. Once my son was born I developed severe migraines in which we believe is a csf leak. The epidural never should’ve reached as high as it did. My doctor, dr. Rozen believes there was a wet tap and they went too far into my spine. I’ve had one blood patch with no relief. Everyday I deal with chronic pain. Migraines that will last 16 days. My whole body spasms at different times. I have insomnia, burning pain in my spine. I forget everything anymore. Tingling in my hands and feet happens at various times. I cannot even get up from a sitting position without being so lightheaded I almost pass out. I was also diagnosed with tarlov cysts in my lower back and sacrum. The pain is never ending. I feel lucky I applied for disability and quickly got approved the first time. In the same breath it is depressing to know I cannot function normally. I’m 27, life shouldn’t be this crappy. My son doesn’t understand, my 40,000.00 in student loans don’t either. Chronic pain is real.. We are real. We need to find real results.
Leah, if your student loans are FAFSA, you can get them pardoned because you are 100% disabled. Some private loans can also be pardoned.
It sounds as if you not only have a chronic CSF leak, but have Adhesive Arachnoiditis as well. A blood patch can cause that to increase. The whole body spasms are called Myoclonic spasms, and there is only one muscle relaxer that can help those. Unfortunately, I can’t take it because I am on a cyclovir med for herpes, but you should check into that.
I wish you a low pain day, so that you can spend a little quality time with your son.
My late wife’s web site starts with this:
“My name is Karen Shettler Paddock. I am dead. I committed suicide on August 7th 2013, as I could no longer stand the excruciating headache caused by a Intracranial Hypotension, more commonly known as a Cerebrospinal Fluid (CSF) Leaks. A condition that is more common that many think, yet is so unknown that some doctors argue the condition does not even exist. It has been estimated that ten percent of the 30,000,000 suffering from migraine headaches are actual suffering from this condition, that is 3,000,000 per day!
Not even my love for my husband Bob, who maintains the page on my behalf, love for my dog Garth and family, could no longer keep me going, which is how powerful the pain from a CSF Leak/IH can be.”
Karen suffered with Chronic Pain for nearly 24 years! In the end she could take it no longer.
Her story, that brings everyone to tears, is now required reading of the Neurobiology Program at Duke University School of Medicine. Future neurologists graduating from that program will know of chronic pain and CSF Leaks.
If a crying husband, i’ve had only a few cry free days since Karen’s death, will help you I’ll be happy to go where ever it takes to present Karen’s story of how bad it can get.
Anyone that says “The US has the best health care system in the world” has NOT known someone in chronic pain!
http://www.kpaddock.com
Bob, you have my sympathy for your loss. My medical plan has a drug plan. When I was given a prescription that was not on their list and hadn’t been pre-approved, the person on the phone told me, “It’s just pain. Nobody dies from pain”. We do die from pain, because the pain gets so bad, and lasts so long, that we finally give up, and take all of our meds at once.
You have my permission to tell that to those future neurologists, just so that they know and understand that it isn’t just your wife, but many others. You have my love.
I fell in December of 2010, missing 3 steps & landing on cement.
I broke my knee, a tibial medial plateau fracture. First, I had to wait for an orthopedic doctor to see me for 2 weeks because it was before Christmas, gee thanks. I was given a knee brace & crutches at the ER & 3 days worth of low dosage pain medicine. Even after seeing the ortho doctor, still just a knee brace.
For months I kept telling the doctors that my foot hurt. That it hurt way more than my knee, it felt ‘sunburnt’ at night & I knew something was very wrong. Finally after months & having to go to the E.R., because the Ortho doctor seemed useless, they x-rayed my foot finding 1 broken bone in the ankle.
The pain kept getting worse & worse. My knee was healing, I could feel it getting better, my foot was acting like it had a mind of its own.
After much frustration at the original ortho (& way too much pain because I was being under-medicated, as is usual with many patients), I did some research & found an excellent Orthopedic doctor. A 2 ½ hour drive, but I was getting nowhere in my small town.
As soon as that new doctor walked into the room he mumbled to himself as much as he made it audible ”full bright mottling of lower right leg”. It was apparent that he knew immediately what afflicted me by the knowing look in his eyes. He examined me, but with the kindest voice & a warning that he would have to touch my leg & foot, knowing that I would not like it one bit. After the exam he looked at the same exact x-rays that had been done months before. He found SIX broken bones, in those *same* x-rays. He informed me that I should have been put in a cast from my toes to my hip. This was just over 3 months later from the injury. He noticed that my foot was also dropping into a pointed position & said he would like to cast it but that I had already been through enough & he felt bad for me- his words. So, he gave me a boot & said to wear in for a few hours at a time until I could stand it through the night & eventually through the day too. Reason so my foot didn’t end up staying in a pointed position & dragging.
He also informed me that first visit that I had CRPS/RSD. As mentioned, he knew as soon as he walked into the room. I told him how much pain I was in & he said he knew it was extremely painful but he unfortunately did not prescribe narcotics because I had already been receiving treatment from my primary doctor & that I would have to get them from him. He did however tell me that he would write up his report & fax it to my primary doctor, including a suggested increase in pain medication.
Well, the primary doctor reluctantly gave me a very slight increase. He also prescribed Gabapentin & an antidepressant. I was trying to be a good compliant patient & did what he told me.
After a few more visits to the outstanding orthopedic doctor my knee was healed & my foot was no longer in danger of dragging, so his services were no longer needed. I saw him 4 times in the time frame of 3 months.
After diagnoses it had also been recommended to get the infamous steroid & mixture of who knows what, shot in the lower back, a ganglion block. It was exactly 6 months after the initial fall. It was a painful procedure & I abhor needles, have been known to pass out, good thing I was lying down. Suffice it to say that it did absolutely nothing for pain but it did give me a nice UTI & bladder infection, to which, at the follow up visit the doctor actually yelled at me & said ‘why didn’t you tell me you had a UTI, uh excuse me, that would be because I didn’t have one before you stuck that huge needle in my back.
I also had an EMG. That doctor was a real piece of work. Saying things like ‘the test will be negative if you actually have CRPS’ & ‘where are the colors’ then “oh my, there is the coloring’ & ‘why are you reacting this way’? (I was in tears & screaming from the extra pain he was causing, duh).
I also went to a ‘specialist’ another 2 ½ hour drive. To which he acknowledged that yes, you have CRPS, yes, there is no way you can do physical therapy, & I want to take you off the current pain medication & give you Tramadol (which had been tried & in the file) instead, & up the Gabapentin. Well, I mentioned earlier that I was being compliant. I had been on the gabapentin for months at this point & was having horrible side effects, so horrible that when this ‘specialist pain doctor’ wanted me to not only stop the pain medication but increase the gabapentin to the max dose of 3200 mg when I couldn’t even tolerate 600 to 800mg of it that I burst out with “are you crazy? I will be put into the looney bin or dead if I do that”. I was serious & he dismissed me as if I had hic-cupped.
The side effects that I had were so bad that when my mother came shortly thereafter she said that she did not recognize her own daughter. She insisted that we go to my primary doctor asap. There, three days later she looked straight in his eyes & described (how only a mother can) how she would find me awake in the living room, unable to sleep, crying every night since she had been there & said to him ‘she is in so much pain, she is not herself, at. all., YOU are the doctor, DO SOMETHING, NOW”. Wow, I wanted to jump up right then & there & applaud this great woman, my mom. My foot wouldn’t allow me to jump though & my spirit had been in a gabapentin induced coma of anger, hostility & depression.
That was the first day that I was given long acting morphine along with the low milligram instant pain medication I had been taking since it happened, & told to stop the gabapentin immediately. I was never able to get above 800 mg of that stuff because it made me feel horrible,(about 7/8 moths of it) but in hindsight & from hearing from others I was an emotional, very angry, hostile, depressed mess from it. The combo of being on gabapentin & being under-medicated was a kind of hell that nobody should even know. I feel that it could easily be deemed psychological & physical torture. Several days after stopping the gabapentin my mood was getting better, along with the increase of pain medication it was amazing.
It cost me a 20+ year relationship.
Because it cost me that 20 year relationship I have had to move back home to Florida. In the meantime I had to travel to New England from Florida to get my prescriptions because I was having a difficult time finding a doctor here. So difficult in fact that I have to travel from Key West to Tampa even now. It’s crazy. Just so I can be treated & get needed medication for CRPS/RSD.
All because the DEA, Politicians & Policy makers have the doctors scared to see pain patients. They also have the pharmacist scared. Not very many care about the patients anymore. They care about what the DEA, Politicians & Policy makers can do to them. Why should someone that has to use a crutch & is disabled have to travel 700 miles to see A DOCTOR? The simple answer is because of *THEM*.
It took just shy of a year to find a doctor in Florida. None, zero in the Keys will see anyone that has a chronic intractable pain syndrome. Every single place I called or went to ‘no, we don’t see patients that need narcotics’, jeez, they don’t even call it medicine, it’s narcotics, treating people like junkies. Some places actually did feel bad, but most just said no very nastily. I even waited months to see a doctor here, just for guidance, told them I just wanted his advice on what to do, where to go, steer me in the right direction. They made us wait for 6 hours in a freezing cold waiting room (which makes my foot more painful & lovely colors) then they preceded to yell at me & my mother & tell us the doctor will not prescribe anything & that he wouldn’t even see me. What? Yep, that’s what they did, even after reiterating that I only wanted his guidance on how to proceed. They wouldn’t even take my blood pressure, which I know was sky high, chest pounding from pain & being upset further.
I have been through the wringer with trying to get medications filled too. First Florida prescription took easily 30+ pharmacies to get it filled, basically driving from Tampa & stopping at many then finally getting filled half way between Tampa & Key West. I had trouble here too but did finally find a very kind pharmacist willing to fill the medicines, after much discussion. It shouldn’t have had to been any discussion but it did & I am grateful that they are now being filled. There is still fear every month. There should never be fear & anxiety just to get needed medicine but that seems to be the norm now. That is why I am writing this, it needs to stop. Patients do not need any more fear reaped upon them, we have enough fear, in our bodies of the pain.
I think it’s really inhumane how pain patients are treated.
I am finally being given the proper medication. Just enough. Some days I definitely over do things & then I pay the price & must rest with my foot elevated for days on end. I am grateful that I am able to over do things though. I can get out with my dog & play catch, sometimes I can cook dinner, sometimes I can go to the store & sometimes I can even go to a beach with the dog & friends. They play with my dog & let me sit with my foot up. Pain medication will never get rid of all the pain, it gets rid of enough to have the ability to enjoy some days of life.
It was a very long journey to get here & not a fun one. I’ve had a lot of losses, as I believe every intractable pain patient does. I feel that we are all so under-medicated in the beginning of our afflictions that we lose our self identity & are in so much pain that we are down right miserable. We lose our friends, some family, careers- all because we are in so much pain that we literally can’t think straight. It seems doctors do every single thing under the sun except give pain relief, when pain relief is what is needed most. It is a last resort. I think it’s a bit backwards but what do i know? I’m just a pain patient.
I have another story about 18 years ago when I had Endometriosis, Andenomyosis & then Lyme but I do not have the energy to tell it now. Just know that that was another nightmare in my life & after it finally came to an end I did not have, nor need, nor desire any kind of pain medication for the years in between that nightmare & the beginning of the CRPS nightmare. So when ‘they’ say that patients are led to abuse medications & it’s a road to addiction – I have a really hard time believing it.
Another thing I get tired of hearing, like the “specialist doctor” had said, that pain medications don’t work for nerve pain, HA, I think it’s laughable, because other people I’ve conversed with that have nerve pain, & myself, definitely have a better quality of life with them than without them. It may perhaps be true for some but please do not try to tell me when I know for a fact that they work for me. I have gone twice without pain medications during this journey, once by choice & once not by choice, they make it so I can enjoy some small pleasures in life instead of living in a bed like a miserable sloth ready to die.
People have opioid receptors for a reason, they don’t have ibuprofen receptors or gabapentin receptors or whatever else receptors they try to force us into.
Dr. Fudin you have asked for our stories, I apologize this is so long but you did ask : )
I hope this actually does help, it took quite a bit of energy & brought back many bad memories that
I did not really want to relive, a few are here, many are not because things really can be much worse than they seem.
I thank you kindly for trying to help each & every one of us with this.
I hear your pain. I had my medical practice destroyed by policy makers, encouraged by the DEA, I am sure! Now, I am in the same boat. I have inadequately treated chronic pain!
It’s really unbelievable how one entity can get so many others’ behind it to do untold amounts of damage. Damage that will forever haunt patients, doctors, families, the list goes on & on.
I did forget to mention in my story that I had only been given 5mg percocet 4 times per day, broken bones & CRPS (after trying tramadol & vicoden of course) until that day my mother came. That day the doctor gave me the morphine sulfate it was 2 30mg per day & the rest stayed the same. Several months later he was out of the office & I saw another doctor in the same facility. He looked at my chart after seeing how much pain I was in (I was there early because I kept running out of medication, pseudo addiction= under-medicated) & he said ”well it’s no wonder you’re still in pain, for what you have you should be able to tolerate much more and get adequate pain relief”. I tell ya I couldn’t believe my ears. I had told him that I had complained & asked the other doctor many times, to no avail. It still wasn’t an optimal dose but so much better. Long story short, the other doctor was not happy about it but he did keep me at the new dose reluctantly. He got such an attitude too. Another interesting tidbit was that the doctor that actually helped with the new doses was soon gone, just gone one day because I was trying to stay with him. I moved to Florida soon afterward, into another nightmare scenario.
I think it’s absolutely horrible that you have lost your practice. Even more horrible that you being in the field know more about medicines than most of us & yet you are being inadequately treated. Just horrible. Sending you hugs Michael. I hope your ordeal soon gets better with the proper treatment(s).
I unfortunately live in the like to torture state of Tennessee. I have chronic gastritis and frequent ulcers from a surgeon who removed my gallbladder needlessly 30 years ago because I had periods of pain,nausea and vomiting. He told me while I was on the bathroom floor vomiting that I could go home.He cut the stump too short so bile drains on stomach wall instead of middle. Episodes continued and 5 doctors later they decided to”humor” me and do exploratory surgery-exact words. I am missing 30% of colon because of adhesions. Now I have IBS, interstitial cystitis, automatic nervous system dysfunction, DDD,failed back fusion where both nerve roots where compressed and pheriphral neuropathy. Pain is radiating constant from level of fusion to ankles. Hip pain and back pain prevent walking, sitting and sleeping. My pain medication was reduced 1/3 because of DEA INTERFERENCE. Before the reduction I was able to see my grandchildren and leave the bed. Because of DEA Interference I went to 6 pharmacists to get 14 kadian capsules filled. I was in tears by the 3rd. Took getting a driver to drive the hour back to Dr to get the medication. He called Walgreen. Went there and they didn’t have it. Mentioned that they did when Dr called 15 minutes earlier and it was filled. No questions asked by any pharmacist. I am not a criminal. I am 80 pounds unable to go to store at 57 years old. I have done physical therapy, tens units, mediation, hundreds of painful useless injections after being threatened with discharge and no medication. I have tried lyrica, antidepressants, and celebrex, among others. Thanks to DEA I am now a D.N.R. Easy suggestion is to stop punishing and discriminating against patients with chronic pain and arrest the drug dealers. Even my primary care physician is now limited to what he can prescribe? Why are pharmacists able to decide on who gets medication ordered? I am the one that has to give urine drug screen in bathrooms with out faucets. Apologies for length. Begging for life. And to Dr Murphy, I would not wish this on anyone.
As a general surgeon who did many gall bladder operations, there is only a cystic duct stump left if doctor does not cut it short enough! One may have symptoms from that stump.
Thing is, when people get bad adhesions, it is impossible to blame the gall bladder stump. The drainage of the common duct is not changed by gall bladder surgery. It is never touched, normally. It still drains into the middle of the duodenum(the first part of the small bowel) not the stomach. You may have had a gastric problem that was misdiagnosed at the time of your first surgery. Obviously, since then, none of the doctors has seemed to address that problem, either. I hope you can find someone to help.
Dr.Michael, they missed the adhesions although I had surgery once before for the same. They knew that but insisted gallbladder. I obviously have not seen the area but reported what I was told. I have been to mayo clinic among others. I agree that there is a problem but not a solution that I have been told about. Would be willing to try. Shame that with no one listening that colon was damaged by their delay. Even Vanderbilt charged$300 to tell me IBS without touching me. My husband held me as I tried to walk to car crying. And that tunnel is a long walk to me with people staring. Thanks for being kind enough to respond. Thankfully the side effects of morphine stops the constant diarrhea and in addition helps ease the pain.
Brenda, I am so sorry for all you have gone through. I wish we could get together with all pain patients and have a class action suit but none of us could go through this and the expense is terrible I’m sure. We lived in the Pacific NW and then moved to Idaho. I have been on the same pain medication since the early 90’s (same dose too). I went to a clinic “Minor & James” that is associated with the Univ. of Wash Hospital. Three years ago they kicked out ALL pain patients. When we moved to Northern Idaho I then had to travel 800 miles round trip quarterly to see my Dr. When they kicked us out of the clinic there was no Dr that would take me in the small town we live in. I had to go to the pain clinic, thank god they kept me on the same program my old Dr had me on. Do you have a pain clinic nearby? Many or most are there just to get everyone off pain pills so I sure hope you have a clinic that is like mine, fair. Obama just started a program that will cut the Dr’s salaries again. I think we are in for a bad ride. I am 71 and in pain 24/7, yours sound worse than mine. I will also suggest that every time you see any Dr you get their Office Notes, it will help you to understand what they are hearing and thinking of you and it helps you to remember what happened and when. I know you are unable to do much and I hope your have family that will help. I’ve tried all the things you listed too. The addicts are all that people think about and everything is done to help them, pain patient are not being listened to. The young Dr’s are not being trained to help pain patients because we are to complicated. Dr’s are really suffering too, the paperwork and the things they have to deal with (in 15 minutes) are causing them to “not take” pain patients. If the Dr’s would have banned together before Obama care and fought for us they wouldn’t be going through this hell. I really believe they could have made enough noise to stop what is going on today. I hope I am making some sense. God Bless You and all pain patients. None of us want the pain and the cost of buying pain medication.
I am always leery to share my story. Afraid for many reasons . . . that people will find out what kind of medicines I have and I will be robbed or killed, that people will find out what kind of medicines I take and they will no longer want to be my friend (I am a leader in my church), that my doctors/pharmacists/insurance agents will (and do) treat me like an addict looking to score a hit. My pain began in my eighteenth year, just after starting my freshman year of college. At times it was unbearable but that was few and somewhat far in between . . . I could handle it. By the time I turned 28, I could no longer “handle” it. I was finally diagnosed with severe Crohn’s Disease. I have spent many weeks that turned into months in the hospital for bowel resections, intra-abdominal abscesses, and peri-anal fistulas/abscesses. The diarrhea gets so bad that I have to go to the restroom sometimes 20-25 times a day. Sometimes the cramping and pressure makes me feel like my intestines are going to literally turn inside out! And the abscesses . . . wow, no sitting . . . no standing . . . no walking. So painful. I think one of the worst parts of Crohn’s though is feeling like you have a GI flu 24 hours a day, 7 days a week. Constant fevers, chills, and body aches. Arthralgia. It hurts to move. It hurts to turn over in bed. I spend days vomiting bile and dry heaving in my toilet. In 2004, I was finally awarded disability and was able to stop working. Being able to rest helped alot. My GI doctor was giving me Vicodins to help with the pain. I remember when I first started taking them I could take a half of one. I would feel like a normal person again. However, over the years it took more medicine to help. By approximately 2007 (16 years later), I was taking around 9-10 vicodins day. One of the pharmacists where I had my RX’s filled was upset . . . not about the hydrocodone but about the amount of acetaminophen I was taking. I spent the most of that summer in two different hospitals (my GI had privileges at one and my surgeon at another.) I had two surgeries that summer and when I came out on the other side, my tolerance for opiates had skyrocketed! So I was referred to a licensed pain treatment facility. I had to wait several weeks while my doctors filled out the paperwork and the facility researched my case. I was finally accepted, with a pain contract and regular pill/patch counts and urine screens. That was about 7 years ago. I am in the State of Tennessee. I say that because apparently TN DEA is making its own opiate prescribing rules and pushing even the licensed clinics into submission. I was taking 125 mcg Fentanyl patch changed at 48 hours and I could take up to qty. of 4 (30mg) oxycodone per day. Last fall (2013) the new rule came out that they could not prescribe over 10 mg hydrocodone so I changed to 30mg Morphine (MRSI). That was not a big deal. Now the state of TN says no one (unless you have terminal cancer) can take more than 200 milliequivalents of morphine per day. As a side note . . . people do die from other things beside cancer . . . but that doesn’t matter to my state. So I am being weaned down to 75 mcg Fentanyl patch with qty. of 1 (20mg) morphine tablet per day. This first month has just about killed me. I have had to start taking more and more naprosyn and ibuprofen to help with the pain and inflammation . . . that is a no-no for Crohn’s Disease. My GI system is all torn up. My pain has increased greatly. Now its not as bad as if I was on nothing but it is worse. I have no recourse but to accept it. The sad thing is though, with the rest I was able to get and the meds, I felt better than I had in years. Now I am going backwards.
I suffer from a symptomatic Tarlov Cyst at S2 ( a rare disorder that mainly affects women), along with herniated C5-6, T6-7, L2-3, and L5-S1.
The pain is SO severe, I wake up long enough to catch my breath, then pass out. Or at times I’ll collapse if I stand up from sitting. Strain and exertion, basically performing normal tasks that others take for granted, like pulling my trash to the curb, affects the flow and pressure of the cerebrospinal fluid. I wake every morning with pain and pressure at the base of my skull.
Yet I am treated with SUCH hostility and disdain by every doctor I see. Epidurals cause Tarlov Cyst symptoms to worsen, yet that is what doctors are “pushing” because they make a LOT of money from them. They do NOT care that I will be WORSE! Physical therapy will make my symptoms worse as well.
Opoids, specifically Dilaudid, relieves the pain. But how dare I mention the name of a narcotic when I answer truthfully when asked “What takes the pain away?”.
So I am forced to go to the ER when in intolerable pain, and my blood pressure spikes dangerously high due to the pain (185/116 is an example). I am screamed at and humiliated in front of other patients, and the staff, and forced to lie there for HOURS with no pain relief, but am always made to give a urine sample.
I HAD a caring doctor, then he abruptly discharged me because he was SO afraid of the DEA coming in and inspecting his files. My Tarlov Cyst and herniated discs are well documented, but I am not permitted to have pain relief!
These sadistic policies towards patients with chronic, severe pain are unconscionable. I wonder if the “Injection Mill” doctors are behind this propaganda about Opoids, since they make a LOT of money from injections as opposed to writing a prescription
I’m a chronic pain patient also. I’ve had charcot-marie-tooth disease, arthritis, a brain bleed & a leg amputation. I am sick & tired of other people telling me what I need. I am tired of trying to find a doctor to give me my meds (although I did). I’m tired of feeling like a drug seeker. They can talk to the media so can I. I’ll keep you posted.
My pain started when I was 49. I had squatted down at a wedding rehearsal to get a ring bearer to walk back down the isle to me when I felt something give or move in my lumbar area. Within 6 weeks I was bed ridden from the pain. I went to doctor after doctor to be told that my pain was only in my head. I endured multiple injections, some injections included ingredients that the doctor ordered secretly, had shipped to his house, smuggled into the clinic and then repeated injected into my back and sacral area.
You name it it seems like I’ve endured it.
Finally I gave in and spent 7 years in a wheelchair just to be out of bed for SHORT periods of time, laid down every afternoon for a minimum of 2 hours just to get the pain to ease a bit, and was in bed by 7 each night to get the pain under a little control so I could try to sleep at night. I took Tylenol and Ibuprofen for the pain for years because doctors didn’t believe me about the pain level I was experiencing. After searching for years I found a pain management doctor that finally subscribed OxyContin for my pain and I could finally spend a couple more hours out of bed each day. I attended physical therapy, water exercise groups through our hospital, acupuncture, massage therapy, magnetic therapy, slept on special mattresses, etc. trying to get some relief and get so I could do activities of daily living.
Finally after years I endured a discogram test and was told I had degenerative disc disease and I wasn’t a surgical candidate because I had to many bad discs…learn to live with it. The search for a new doctor began again. I found a pain management doctor who tried several different things to help me with my pain, including a spinal stimulator that made my pain worse, and finally had surgery to implant an interthecal pump which delivers hydromorphone directly to my spinal column. The pump was a blessing! It got rid of a portion of my pain.
Then I was told I have lumbro sacral spondylosis. For this I have to got through radio frequency ligations every 6 months. I have to take oxycodone to help with the pain each time while I wait for the doctor to fight with the insurance company long enough that they finally agree. I still have periods where I’m unable to perform activities of daily living, especially if there are storm fronts coming through our area.
I am still treated like a convicted felon every time I need the RFL procedures done, by the people who work in the doctors office as well as by the insurance company. Now if you take away my ability to get pain meds my life will return to living in bed!
I am a 33 year old workaholic, driven, adventurous woman trapped inside a body that won’t let me achieve any of my dreams. Even the simplest tasks in life have become a challenge. In 1999 I had a horseback riding accident and suffered a severe back injury. Surgery was not the answer at the time, but 10 years later after being forced to go on disability from work neck surgery became my only option. Sadly, the surgery only caused more pain and complications including a constant headache and constant trigeminal nerve pain. The right side of my face, teeth, tongue, ear, head all have severe nerve pain that never goes away. This past October I had back to back surgeries to remove the old hardware in my neck that caused these problems and replace it with a cage, plate, and a lot of screws. The damage to the muscles in my neck from years of strain after the first surgery causes constant spasms, shooting pains, muscle relaxers just can’t get ahead of it… I have knots the size of golf balls. And to date, the trigeminal nerve pain has not let up, not for a minute..
I have seen countless doctors, really excellent doctors, multiple hospital stays, but to date the pain has not subsided. We have tried tons of meds, now we are trying decreasing and even going off them because long term pain killer use can cause more pain and can cause other classes of meds to not work. I am terrified. With every drop in dose I feel more pain…. I don’t know what to do. It is terrifying.
I would love to help in any way I can. I am a fighter, and if my fight, my story can help others I would do so in a heartbeat.
My heart goes out to u. People in pain are being punished! You will never be out of pain, I can’t understand how you’re going to get any relief by stopping pain meds. What will your alternative be?
I to have chronic pain and have been on oxy. since 1996…same dose. When I feel that the meds. are not as effective I taper off for a few weeks then return to my usual dose. It helps to do that when needed. I never increase the dose. We need to fight for our rights! It is not fair that we are singled out and put in the same group as real abusers. I can not get a Dr in northern Idaho to take me as a pain patient. In Seattle I had the same Dr since before my 40th birthday, I am almost 70 now. My Dr. retired and I am seeing a Dr. He recommended but I miss my longtime doc. We now have to drive over 800 miles round trip quarterly for me to get my meds. It is criminal! I wish we could turn things back to the nineties. I know your pain rivals mine….what is the matter with doctors and those who are making the rules! I wish they were pain sufferers!
Good luck and God Bless.
Hi Carol,
Check into Angel Flight in your area. It may be something like “Angel Flight Northeast” or something like that. They are an organization that will fly patients to far away medical appointments. It is pilots that donate their time, money for gas & aircraft.
They are truly Angels.
I have had chronic sciatic pain for 14 years. I injured myself in the year 2000, underwent physical therapy, anti-inflammatory medications, nerve pain medications, multiple series of steroid injections, chiropractic care and a lumbar disc surgery. Experienced a reduction in pain for only 1 year following surgery. Again went through the round of therapies. I now use oxycodone daily to control my pain – control, not eliminate – so that I can function at home and in society. Without this medication I would have no quality of life…no job, no social activities, no time with grandchildren, no time with family. I have been using this therapy for 3 years with no abuse problems and I thank God for it everyday. My family thanks God too. This hysterical “painkiller epidemic” has got to stop. I am so glad someone is willing to get the stories of chronic pain patients heard. Many thanks!
I have Trigeminal Neuralgia. The “suicide disease.” One of the most painful conditions known to mankind. I often liken myself to a “human bug zapper” when the electric shocks sear through the side of my face .. Into my teeth… My eyeball … My tongue.. My jaw … Leaving me incapacitated for minutes at a time. The “afterburn,” which I liken to putting my face under a broiler, can last for hours. The “atypical trigeminal neuralgia pain” I am also lucky enough to have is constant. Gripping. Boring. Horrible. I am pretty much refractory to “TN” medications except one, and it helps the shocks somewhat. have had two brain surgery “microvascular decompressions” for this condition. Helpful for a while, but not a cure. I am now at the point that I cannot eat because chewing is too painful. Sometimes swallowing is too painful. I can’t sleep because of pain. Going outside in the wind or breeze is very painful. Interacting with my children is very difficult. I lost 25 pounds and I was still counting … Until my doctor prescribed me a low dose of long-acting Nucynta, last pain medicine that also treats neuropathic pain. I like this medicine. Why? Because when I take it I can’t tell I took any pain medication — it just makes the pain go from 20 to about 3. Because I can get some semblance of food in my system mid-day. Because it has helped me stop my spiral of weight loss. Because Of this medicine I’ve been able to see some of my kids activities. I’ve slept for the first time in … Months. Do I WANT to have to take this every day? No. I am working with physicians to find other answers. Until then, however, it’s giving me (and my family) a quality of life not enjoyed in a very long time.
I am a 63 yr old female who can’t remember what life ever felt like without pain. However, I do know that pain progresses over the years, as one’s mind loses the ability to describe the pain once it goes untreated for so long and becomes intractable.
I had my 1st of 7 panopaque myleograms at the age of 21, followed by a 4 level lumbar disectomy. After another 2 lumbar surgeries, I was diagnosed with “spinal stenosis” at the age of 32 and was told that it was a disease that usually only happened in older men and found at autopsy ( not true, as I now know). After a few more lumbar surgeries to clean up the “scar tissue” and “stabilizes” my spine, it was time to move unto my cervical spine in early 1991, “ if I wanted to ever walk again”. After a metal artifact was left behind during that almost 12 hour surgery, even with partial paralysis, I refused any further surgical intervention.
We tried every anti-inflammatory, anti-convulsant, sleep aid, muscle relaxant to aid me in pain relief along with physical therapies and all failed for one reason or another, leaving me with no option but opiod treatment for some sort of relief. As my auto-immune system has broken down, so has the types of choices of even the opiods I can tolerate.
I had been on 3, 80mg oxycotin per day with 4-6 , 30mg oxycodone as needed for BT. In 2010 when Purdue reformulated the oxycotin, I found I was not able to tolerate it. My Dr. switched me to only prn IR’S as we had run out of all other options. Then , my insurance company writes a letter saying that they will only fill half of what I had been getting and threatened my Dr. if he continued to write me that many IR’s he would be reported.! Amazingly, they would pay for 3 times the amount of the time released version, but not ¼ the amount of the IR version. IMO, it has to do with the type and what is being diverted by addicts. My Dr. called me and said I would have to find a teaching hospital who would help me. There is no way I could drive 4 hours!
I went into such a depression. I had been with this Dr. for 20 years, but understood he was scared. It is amazing that the government can do this to a good medicine man and his law abiding patient, The DEA chooses to protect the individuals who use the same medications chronic-pain patients need to survive, as a way to get high. I wonder how long it will take to realize that the deterrent coatings that contain BHT and the Prop Oxides are causing us cancers? Now, I have had to submit to expensive urine tests, not paid by my insurance, just to prove that I am not diverting my medications. Due to the fact that my body will not tolerate the drugs made by the companies that are all now making opiods tamper resistant, I must travel 2 hours to a “compound pharmacy” to have them make a medication “just for me” and “not covered by insurance”
This all seemed to have started with PROP? I really don’t remember so much trouble with pharmacies and insurance co.. Chronic pain costs too much and the establishment that created so much of the problem, now just wants it gone. I truly believe my congressmen could care less if I committed suicide from unrelenting pain. After all, I would just be another addict gone (if one listens to all the hype in the news reports). So wrong he would be, and so fortunate that I wouldn’t have been his Mother .
My life as I knew it changed to a life of chronic pain, doctor visits that feel more like what i think a trip to a Parole officer would be like, lots of losses, loss of friends, social life, sex life, being active, happiness, career….
I woke up one day in March of ’04 with what felt like a UTI. No biggie, right? Well, turned out to be something I never heard of named Interstitial Cystitis. A very pain ful bladder condition that has no known cause or cure. After seeing Urologist after Urologist I was pushed down the road to pain management. I had to move 3 times in the last 5 years ( out of state ) and finding a new pain doc is a feat that takes month and month and more patience than Jobe.
I have a very strict, zero bedside manner pain doc now for the last two years and he prescribed me the Zohydro as I have had this made at the compounding pharmacy. I’ve been taking it for almost a month now. I take 50mg every 12 hours and 3 short acting for break through. It cost me $175 ( with insurance and savings card ), days to find a pharmacy willing to order it and a good 3 weeks to get my body used to yet another medicine.
It is helping pretty well, but like with any ER pain med does not last past 8ish hours. My head feels fuzzy and it does not work so great on my back pain, which is dissapointing. I don’t see how the abuse risk is supposedly so high. I don’t like this medicine very much but it might just work great for the next person. Without any pain control I am in so much pain that I could not perform the slightest duties, take care of my kids …. Quality of life is and should be the goal. weighing the side effects against a life in pain….
Thank you for speaking up and I sure hope that the war on Drugs’s casualties are not the ones that need the medicine in order to life somewhat of a life. God Bless
As a result of the invasive medical means to treat a herniated disc & Degenerative Disc Disease I have been suffering chronic pain from Adhesive Arachnoiditisfor almost 25 years or over 44%of my life. First a laminectomy in 10/90 and a fusion L4thru S1 along with several series of Epidural Steroids made my pain worse by a factor of 10.
An EMG test indicated that over 2 dozen nerves were severely damaged as result of Adhesive Arachnoiditis.
Almost 25 years of chronic pain includes 12-15 years of Severe Depression. Like many Arachniacs I have unremitting back pain. Pain that I would not wish on my worst enemy.
Said by many to be “the equivalent of cancer pain without the relief of death.” It is central pain that emanates from Central Nervous System. I get lightening like spasms radiating below my waist, feeling of walking on glass, pain that feels as if leg(s) are being torn from trunk or backside splitting like a wishbone. I can not walk after 50% of bowel movements for 15-40 minutes.
I take 60mg 2/day of Morphine Sulfate and 20 mgs Oxycontin 2-3/day. In the 12+ years that I have been taking these medications without an increase in dosage or a request for an early refill. I dislike taking these but they do manage to alleviate some of the pain. I also meditate on an ice pack 2-3/day, walk 20 minutes 4-/week.
There is no cure for this malady. I have followed the history of others who have tried the Electric Cord Stimulators for over a decade. Their efficacy is dubious at best. Besides which experts at The Cleveland Clinic would not recommend one due to the extent of my nerve damage.
The use of these pain medications has allowed me some quality of life that I sincerely doubt would be available to me without them. I don’t like taking them, the morphine makes me sick, but it beats the alternative. And without the likely damage more invasive measures might cause. SCS’s offer no cure merely electrical distraction. Installation & adjustment of the devices mean the back is reopened repeatedly causing yet more Scar Tissue. Adhesive Arachnoiditis is caused when excessive scar tissue grows around the nerves and the Arachnoid membrane until the three are indistinguishable enveloped in a white sac of scar tissue causing constant pain and neurological deficit.
Why should I have to suffer the full brunt of chronic pain when medicines exist to ease it? I’m not indifferent to the heartache & loss that the abuse of these medications has caused. Preventing me from obtaining a modicum of relief by denying my access to medicine will do little to curb Drug Abuse. I am using a medication prescribed to me by a Doctor familiar with my disease, not abusing it.
Sincerely Robert Goodburn
Thank you! Will they listen? My husband has been disabled for over 11 years because of chronic pain. He has bulging disc, crumbling vertebrae on the L2 S5 -sciatic nerve. spinal stenosis, arthritis etc etc. When he was first diagnosed “floridas malpractice insurance crisis” was driving good doctors out of the state-spinal surgery was not being done. Good doctors ggt scarcer!! During his 12 years of service in the army he broke almost every bone in his body & how does he get thanked? His ex-primary care doctor tells him – I quote “no one ever died from pain” I beg to differ-He is dying! & he prefers that to living in constant intractable pain. thank you so much i’m sure to be better off a widow than to live with a drug addict.!!! My 85 year old mother died a year ago. She was another the DEA has deemed i am better off without – she had her knees replaced in her early 60’s. after the first one she swore she would Never go thru that again!! it hurt so bad! one year later the next one, it made such a difference in her life- but they didn’t build bionic knees to last 25 years. she suffered with degenerative arthritis all of her adult life She new & lived with chronic pain .she was almost deaf – unless she wanted to talk to you ! she aked her doctor for pain medication& he pretended not to understand. so she yelled ” i want the drugs they give the dope addicts” She was never one to mince words. but the doctor didn’t give in to her . can’t have another 85 yea old lady drug addict, running around – they are such a threat to society! anyhow she got to the point where she was in too much pain to get out of bed & use the toilet- she stopped drinking enough liquids & died of kidney failure yea she would have died ???? soon anyhow. When did society decide that people should NOT be allowed human dignity?? WHO has the right to treat pain patients as if : They are LESS deserving of simple human dignity, privacy or Life, liberty or the pursuit of happiness! Please do not allow us & our loved ones to be treated this way. people can die from pain.& they do every day , every age – suicide – accidental overdose or just GIVE UP ON LIFE !! these are our, mine & our loved ones DO NOT let he DEA keep killing them. Patients that are living in pain are not given any hope for a better life. .
I have grown up on Kodiak, AK. for most of my life, have been a commercial fisherman ever since I was strong enough to lift a salmon, was my fathers skiff man at the age on nine years. ventured off on my own at seventeen years old. In my early to mid twenties I had blew my back out by lifting a king crab pot (480 lbs.) up on end. I had screwed up by turning my feet towards a buddy of mine as I was flipping a pot and that’s when three guy’s on the back deck plus my buddy and I had heard a big pop that came from my lower back, as I had started to drop the crab pot my friend knew that sound for his back popped years back and he just got to my crab pot just before it had taken out my legs. For I was young at that time I didn’t know how boat insurance worked so I had turned it down many times because I thought that my friend would have to pay more so I told him to just drop me off at KANA (Kodiak area native association) and it would only cost three dollars. They took x-rays and showed me the results, I had three twisted vertebras two bulging/herniated disks. They straitened them out and after limping in I practically crawled out, they told me to stay ashore for five weeks and rest. Being young I didn’t listen and went back out in the water with five or six liters of V.O. whisky. I kept fishing year around until about my mid thirties to where I just couldn’t take the pain any more and had to find myself a land job. So I moved over to Kenai, AK. and went in partners on the first spruce shake mill in the state of Alaska with my father, uncle, and a cousin of mine, it took roughly three years and about $ 150,000.00 to get the first certified spruce in that state. After all the red tape and monies we went tits up, so I went into the oil patch and had lied saying that nothing was wrong with my back, for it was one of the questions on their form. After six to eight years I got to where everything I did was getting to be a challenge. My second wife Edie got me to quit drinking and to go see a specialist, after the MRI he put me on 40 mg. Oxycontin four times per day with brake through med’s, with in a year I was taking 160 mg. oxycontin four times per day. I had tried Methadone before hand and I liked how long it lasted and asked to jump back over to it. Then in November 23rd 2003 my wife and I was going to head up north to Anchorage for my doctors appt. and my wife had a girlfriend that was going the same day so we jumped a ride with her. I was in the back seat, my wife was in the passenger seat as her girlfriend was the driver. About 7:15 AM a lady and son was headed south who were new to the stat and had never drove on ice before had slid across the center line and hit us head on. The car we were in was as small as one of those Obamamobiles, I took up the whole back seat, the lady who hit us was in a LTD Cadillac. I watched my wife take her last breath for it was below zero that morning and her girlfriend they didn’t think she would make it so they kept her in an induced coma and two or so weeks later they fixed her up to the best that they could. As for myself, I had ended up with a busted right arm, broken pelvis and right foot, along with two shattered legs. That was the icing on the cake, from that day on everything went down hill. I really hate being dependent on anything, but the only thing that will keep the daggers and lighting bolts at bay is the medication I’ve been taking for fifteen years +. I couldn’t take the weather in AK. any longer so I moved down to WA. state and that’s not much better for how wet it is here. After about a year of being in WA. I had been through two different doctors that really didn’t want anything to do with me, then I found a really good doctor that took me on and was a really knowledgeable lady who was out to help the people. You can always tell if a doctor is knowledgeable and out to help the people in need or if their only out for making a dollar. The first year Obama had taken the Oval office is when all the doctors and specialists got spooked and strong armed from the DEA/FDA. I lost my doctor but still have her for my pcp. and I have to fly three states away every three months to see my specialist, been doing that for five years now and every day I worry about another one of obamas stupid laws stopping me from getting the only thing that helps me get through all the pain. I just found out on 5/14/ 2014 that another friend of mine that I had never met had just lost his pain doctor, and this friend of mine is in a lot of pain himself and for many years has helped other people who have chronic pain try and find a doctor. This Obama death care has got to stop, for it’s pushing a thousands of people in pain over to alcohol and or street drugs trying to manage their pain, it’s just not right especially in this great country of ours. Just today it was on the news that Obama has played 1,000 games of golf since being our first fraudulent president. He’s killing our people and catering to the illegals and the theorists, Don’t the democrat’s see that their following him over that cliff, or are they just stupid? I’m going with stupid, and we need to go back to our old way’s of taking care of our people, all it needed was to stop the waste on monies and fraud. I bet that it would of been a lot cheaper then what were ending up with, what are we ending up with? A 1,200 page nightmare that know one on the hill ever read, with Pelosi saying you just need to pass it to see what’s in it, well all you Obama lovers how do you like it so fare? And every one on the hill is exempt from it, people need to start doing background checks before casting their votes and not just voting on the party that their grand parents had voted for, you have to think for yourselves for times are changing fast and in the wrong way. All presidents will only hire the smartest of people, to where Obama had hired all of his cronies that know nothing but how to spend tax payers money, WE NEED HELP!!
I’ve watched my mom suffere from chronic pain for the last 20 years. She has never abused her meds…in fact, she consciously takes less than what she is prescribed because she knows they have side effects and she doesn’t want to develop a tolerance. I get so frustrated when people insinuate that people on RX pain pills are drug addicts ebcause most are just people who have been struck by some terrible circumstances. To have insult added to injury (literally), now they are stigmatized and denied their needed medications. It breaks my heart to watch her struggle each month wondering if her script will be filled or not. People need to know, and like you said, hear the voices, of those who are affected by chronic pain. They are your mothers, fathers, friends, lovers. They are you. Not some abstract creepy junkie somewhere.
I’m 56 years old and have a rare genetic condition called Ehlers-Danlos Syndrome. There are many types, but I have classic, hypermobile, and vascular types. VEDS is a collagen vascular disease and unfortuntely for me, I was misdiagnosed many years ago. I grew up in a poor household and my father had the philosophy that if you’re sick you suck it up and keep going, so that’s what I did. My teen years were especially difficult because I would wake up dizzy and sick to my stomach, and if I would stand up I’d nearly pass out. I was anemic, had low blood pressure, and could not participate in Physical Education because my arms would dislocate at the shoulders, as did my hips, the tiny bones in my feet, and fingers. I was constantly injuring myself, yet never told a soul and managed to graduate with honors. I was working on the yearbook, mastering Latin II, and traveling with our school’s choir. I won medals in voice and sight reading, and was chosen for both State Vocal choir and State Sight Reading choir from students all across the lovely state of Florida. Despite these honors, I was beyond exhausted all the time. As time went on, starting in my teens, I had to have a series of surgeries. After each surgery I had complications such as stitches bursting for no reason, which required emergency repairs. My skin simply wouldn’t stay together. EDS involves collagen, which is the glue that holds the body together, so I was becoming, in a sense, “unglued,” and the older I got, the worse it became.
The worst event, to me, was in my early ’20s. I was 6 months pregnant when the blood vessels in my uterus came unglued, if you will, and I delivered our baby at home, alone, in the toilet. It’s little fingers and toes were there, but the baby had been dead for quite some time. It was probably the most traumatic effect of EDS, and yet no one knew why it had occurred. The second miscarriage was at 4 months. I also had chronic pain and began breaking teeth from clenching them in my sleep. I developed endometriosis in my twenties, as well.
Ironically, in my late ’20s and early ’30s I worked at a Trauma Center in the executive office, saw doctors all the time, but never shared with anyone what I was going through. But at age 30 my doctor saw a sudden and distinct decline in my health and diagnosed me with fibromyalgia. Neurologists said it was all in my head. The pain and exhaustion grew worse, so I resigned my position at the hospital and decided to rear our adopted son at home and build a business. Through one of my contacts, I was offered a job as a magazine editor, which I accepted because I could work from home and continue my medical transcription business, while being a happy mom to our little boy.
When I was 36, suddenly my speech began to slur. I couldn’t control it so after a CT scan it was determined I’d had a stroke. A stroke at 36? “You’ve got to be kidding me!” I told the doctor. But the symptoms subsided after a few months. The fatigue and pain got worse, however, and then I realized my diaphragm wasn’t supporting my voice and I began to lose the ability to sing. This was a huge blow to me, and such a mystery! Then I became so ill I had to quit my business and resign my editorships at the magazines, at the ripe age of 36. I was bedridden for 7 months that year. Thankfully I have a husband who knows how driven I am, and he knew something was terribly wrong, as did our family physician. They tried all kinds of therapies that didn’t work, medications that made me sicker, and we didn’t know what to do because nothing about me said Fibromyalgia. I knew, deep down, it was much worse.
Because my father died at age 52 from multiple myocardial infarctions without blockages, when I turned 52, I asked my doctor if he knew anyone who loved to solve medical riddles. I was afraid of neurologists because every single one said my symptoms were psychosomatic and made me cry. I’m not a cryer, and I was sick of being abused by doctors. My physician recommended a friend from medical school. After 52 years of suffering with no relief and no one to help me, this new doctor took one look at me, off-balance and walking oddly with a cane, he knew I had some type of collagen disease. After 7 months of rigorous testing, BINGO, the tests came back from Baylor Genetics Lab: Ehlers Danlos Syndrome; types classic, hypermobile, and vascular. The doctor wiped away tears as he gave me the test results. “How have you managed all these years in such pain?” I hadn’t managed well at all, to be truthful.
EDS stole my ability to sing, to work, to clean our home, and even at times to sit up. It affects my autonomic nervous system, which affects my blood pressure. It causes me to lose my balance so I’ve had serious falls and injuries up the wazoo over the years, and I still have seizure-like episodes where I lose consciousness for hours at a time, Because EDS affects all connective tissue, I’ve had severe chronic pain all my life, which has worsened with age. Every time I take a step I dislocate tiny bones in my feet. My hands are affected, as well, as are my shoulders, hips, knees, ribcage, skin, muscles, jaws, neck, spine, you name it.
The diagnosing physician immediately got me an electric wheelchair and put me on a pain regimen that helped ease my chronic pain. Next came the appointment with a geneticist in South Florida. He examined me thoroughly, and examined my genes, as well. Both doctors gave me no more than 5 years to live.
When the FDA and DEA began restricting narcotic pain killers in Florida, my pain doctor dropped me like a hot potato. Thankfully I was referred to a pain specialist who is affiliated with a major medical center about an hour away, and he was worked diligently with me to help control my pain with the correct pain killers. With EDS, it causes too much seratonin, and therefore I had terrible side effects with anti-depressants for pain. This mystery was solved by talking with some very smart people on a site for Ehlers-Danlos sufferers, and was confirmed by a neurologist.
Some people cannot take anti-depressants for pain and I am a classic example. This is why narcotics can play a vital role in giving a person back their life. I’m so thankful to be able to get my medications each month, have a doctor who truly gets what I’m going through, and doesn’t “overmedicate” me. He tweaks my dosages regularly to keep me from getting used to the drugs. I am a compliant patient and appreciate his thoroughness.
Thank you, Dr. Fudin, for giving us a voice. Chronic pain patients aren’t addicts. They aren’t faking it to get high. I’ve never been high in my life. My medicine gives me a more normal existence, and I strongly believe that the FDA should not overlook the necessity of narcotics in people like me, who have rare diseases. I feel very strongly that despite the fact I’m disabled by a genetic disease, I’m not worthless! Life is worth living, and living it to the best of my ability. I simply need narcotics to help me do that because of an inherited genetic illness.
As a society, we have more empathy for abused animals, terrorists that are trying to kill us – don’t use advanced techniques to get information out of them… and on and on.. We even separate the difference between cancer pain and non-cancerous pain.. in how pain is treated.. As if there was a difference between the two types of pain. We have a DEA that is strong arming their registrants into violating the civil rights and discrimination under the ADA of chronic pain pts. How pathetic that one entity under DOJ is doing this to another entity under the DOJ. The various Boards of Pharmacy are turning a “blind eye” to entities licensed under them.. who are displaying unprofessional conduct and even violating HIPAA without consequences. Part of the blame needs to fall on those in the chronic pain community.. chronic pain is a primary factor from a untold number of disease states.. but.. those with the various disease states tend focus on “curing” their specific disease states.. rather than group together to get the pain portion of their disease at least properly treated.. while their is a search for a cure of their particular disease. There is suppose to be “power in numbers”, but if the “numbers’ are being sliced and diced into so many pieces that there is not going to be “power in the numbers”.
I have just published an article on Substance.com with my story:
http://www.substance.com/why-we-must-not-let-addiction-hysteria-kill-off-zohydro/
My diagnosis is adhesive arachnoiditis, acquired after meningitis,lumbar punctures, and numerous invasive injections. Currently I have an implanted spinal cord stimulator. I am posting simply to share my opinion on chronic pain and the desire to alleviate it. Until you have experienced agony twenty-four / seven, you can not possibly understand what pain will do to your physical and mental well being. The fear of addiction to opiates is very real. One must understand the difference between physical addiction and psychological addiction. It is my opinion when opiates are the narcotic used for a patient’s chronic pain, a process begins with physicians to begin to treat these patients as drug seekers. I have been at both ends of the spectrum. It was not my choice to be ill. It was not my choice to have chronic pain. It is my choice to be treated with dignity and respect by all my health care providers. Chronic pain is misunderstood by family, friends, physicians,etc. There should be the ability to seek treatment regardless of the choice of opiates or whatever means possible without causing more pain and stigmas.
Dawn’s Story
I am a 35 year old mother of two little girls. I was working full time, going to school full time, and I ALWAYS had the energy to take my daughter to the park and do fun things. In 2009 I went in to have my baby girl. Up until then, I was extremely active. Always mentally and physically. I had to go in to be induced, because my daughter was already measuring 9 1/2 pounds. I had my first daughter completely natural. The Doctor’s kept coming in, telling me she was so large, she would get stuck, and if I didn’t have an epidural, I was risking her life as well as my own because I would need an emergency c-section. After being reassured over and over and OVER that this was a perfectly safe procedure, they do it ALL the time, and there was no chance of anything happening from it, I agreed. I TRUSTED them. I was terrified. Worst decision EVER.
The doctor came in to do the epidural. I was expecting major pain. I had never had any kind of surgery, nothing, never a back problem or anything. I was frightened. He put the needle in, had to moved it around, in, out, wiggle.. Intense white lightening pain down my right leg. I was EXPECTING pain, so I sucked it up and tolerated. He informed me he was starting the medication. I tried to continue tolerating until I could no longer… I SCREAMED. HE screamed back “why didn’t you tell me I missed?!”. Needless to say, that moment would forever change my life. He pulled out, started over, and things went well. I had a healthy baby girl, completely naturally, after pushing maybe 20 minutes.
Within the next 48 hours, my blood pressure had shot through the roof, my back was throbbing at the epidural site, and I had a horrific headache. When I tried to walk it felt like my hips were dislocating from the sockets. But, I figured it was from just having a large baby. I had to lay flat from the headaches. I felt terrible. My daughter had to stay longer than me due to jaundice. My husband was pushing me around in the wheelchair to come and go to visit. I still had this killer headache for several months. The only thing that helped was to drink a soda or lay down. They kept telling me, it’s just your blood pressure. Which before this, was always on the low end of normal. They never put two and two together that I was leaking spinal fluid. Or at least, they never shared that info with ME.
The epidural site continued to throb for a year and a half. A nauseating, sickening throb that just didn’t feel right. I continued to have a lot of hip pain, sciatica started, and I started having mystery fevers and rashes. And what felt like constant bladder infections, with no bacteria present. I started seeing the doctor a lot for this, and was always sent home with antibiotics. Then the incontinence began. A nightmare for a woman in her early 30’s. I was told, it’s just from having kids. I went to doctor after doctor. I would tell them.. It hurts really bad in my lower back, and then I wet myself. Nobody would listen. With any increased activity, my back would burn, and I’d wet my pants. This continued to worsen and worsen. I started having balance issues, vision changes, and noises sounded much louder than usual. The light KILLED my eyes and head. What was happening to me?
Summer of 2010, the incontinence became constant, and I had a bad fall. I started falling down, bumping into things, and having intense dizziness when I was on stairs, looking out a window, anything to do with height. I also started with a whooshing in my ears. And the intense fatigue worsened. I would tell my husband.. I don’t know what’s WRONG with me.. I’m so tired! Still mystery rashes, fevers, and now incontinence and dizziness. What on earth? I was struggling just to make it through the day with my kids. The burning in my back was getting worse and worse. During this fall in August, I injured my thumb and tore ligaments in my shoulder, AND injured my back. I was sent to an orthopedist for an MRI. He told me “pick an injury, your shoulder or your back”. I picked shoulder.
By the holidays, any activity caused incredible back pain. I was wearing pads for the incontinence. I was falling every week or every 2 weeks. I would go to the doctor with spasming up and down my back so badly, you could literally SEE it from across the room. Still.. What is happening? Nobody had any answers for me. I made it to Christmas Day, went outside to build a snowman with my kids, bent over, and couldn’t get back up. I had never felt pain like that in my life. I couldn’t even lift my legs. I couldn’t move or even get out of bed without help. I was in bed for a week this time. My husband and I tried to go on a date. I cried trying to sit through dinner, called my mom and cried to her from the theater bathroom because I could hardly walk in there on my own, and when I sat to watch the movie “SNAP” something popped in my back. I burst into tears in the middle of the movie theater. We got up and went immediately to urgent care. I finally had my first MRI. I have never been remotely the same.
I went to doctor after doctor, physical therapy which landed me in the ER begging for help. Help me I’m wetting my pants and I can’t walk! I was laughed at. Told I was just overweight, age (at 32?!), just from having kids. My MRI showed herniated discs, but nothing as severe as my symptoms. I was sent to pain management. I needed help getting out of bed, getting to the bathroom, getting up from the bathroom. My husband had to come home on his lunch breaks to change the baby’s diaper and feed us. I picked her up one day from her crib, and I fell with her, wet my pants, and thought I would pass out from the pain. I was going to the doctor and ER begging for help. Please. I’m wetting my pants and can’t even walk. They were clueless. Pain management wanted me to have epidural steroid injections. I went through three of those. Completely lost my hearing after the first, the room spun, and I almost vomited. The third, i had the same lightning pain. They punctured my dura AGAIN, and gave me an extra dose of neurotoxic benzocaine! I couldn’t lift my legs for two weeks after each. My feet were numb, I started having extreme muscle spasms, my entire LEG was numb for a while.
My bladder went from spastic, to completely flaccid after the esi’s. I couldn’t urinate on my own. I was getting deathly ill from retaining urine. I ended up in the ER, blood flooded with white blood cells, blood pressure through the roof, thought I was having a heart attack, sweating. Crying. I can’t pee I can’t pee, the pain, help! The doctor dismissed me and told me he hoped my neck felt better. He didn’t even listen. It was my LUMBAR! I went to the urologist. My bladder was completely paralyzed. My bowel was completely paralyzed. I could no longer move the toes on my right foot, or pick up my leg. I started having twitches in my body so bad I couldn’t hold anything, and it felt like I was having electrical seizures. My toes were moving on their own like they were playing the piano. It was PAINFUL. At this point I was in bed 24/7. We spent all of our time traveling from doctor to doctor. Being told it was “something neurological” but nobody could say WHAT. I had been feeling bugs on my legs that weren’t there. Water dripping down my legs. I couldn’t even go sit in church without being on the verge of tears after 20 minutes. I couldn’t sit, stand, lay, do anything without the most intense pain of my life. WORSE than child labor! But I was praying and praying.. Help me.
We finally were referred to a major teaching hospital. She was the first doctor to mention the ugly “A” word. BUT she also wanted to operate. Which would have been catastrophic. Luckily, it fell through. THEN… My Mom and Aunt came across Dr Aldrete in Birmingham. He confirmed… This IS Arachnoiditis, and Cauda Equina Syndrome due to that. It was bittersweet. Finally I knew, but there was no cure. He said he thought he could help me. We packed up to go see him. A trip that should have taken FOUR hours took NINE because I had to pull over and get out and cry every 20 minutes. But I knew… I HAD to get there. My husband half dragged me into his office, I halfway dragged myself with my cane, and collapsed on his table. I was sweating, twitching, burning, spasming. Within 15 minutes of him starting the IV, my pain dropped to ZERO. I felt the fog start to lift. I was in utter shock. What had I been through?
Day 2 of treatment, I started having pins in needles in my bladder and bowel area. I was scared. What WAS this?! It felt like your foot waking up from being asleep, times 20. I could now stand up and get out of bed, by myself, with NO problem. My husband and aunt were in awe. It was like a miracle. After what I had been through, that WAS a miracle, and hadn’t happened in over a year! Day 3, pain stayed even lower, and my bladder and bowel function returned! It was like a dream! I took my girls on a very slow and careful walk around the hotel. My prayers had been answered! I went through all five days of treatment with my hero, Dr. Aldrete!
It has now been 8 months since my treatment. I can still get up and move on my own for the most part, pain still tolerable, bladder and bowel still functional, with the assistance of some medications now and again. I am still off the heavy pain killers. I can still rest without pain. That right there is the most important. I wasn’t able to rest and sleep more than 30 to 45 minutes at a time for MONTHS. I still can’t believe what I’ve been through. I have massive anxiety seeing any new doctors.
I still twitch, walk funny for short distances, my limbs fall asleep and I have muscle spasms, I swat at bugs that don’t exist on my legs, and I can drive all of about 10 minutes, but Dr A gave me a second chance at things. He bought me some time. Who knows what the future holds? I’m adjusting to being a permanently disabled woman, which is hard. It’s even hard to say. I have periods of grief. But I’m more of a mother and a wife now. I still deal with daily pain. Housework of any kind nearly kills me. I still need the wheelchairs and scooters and things to go anywhere. I never dreamed I would be like this at 35 all from going in to have a baby. Without pain meds my bed is my cell that I am locked away in and I feel punished. With my pain meds it’s a little further, but not much. My pain is rarely a7 out of 10. I dream of aquaquate pain control and being ably to live some sort of life again.
I’m Kayla and I am a 26 year old girl living with Medullary Sponge Kidney Disease (MSK). Its also known as “sponge kidney” or “cacchi ricci disease”. Whatever you want to call it, its painful. Those inflicted with MSK often pass numerous kidney stones and have, back to back kidney infections all in a month’s time. As you can imagine, these issues can be painful on their own and thankfully they are recognized by the medical community to be painful. What is not recognized is the chronic pain that we experience each and every day from the hundreds of kidney stones embedded in our kidneys. The MSK community doesn’t know how–or why–we have such bad chronic pain in the absence of an active stone or infection but we do. This chronic pain requires us to use narcotics to make it through our day. Unfortunately, no one cares enough to do more research on Medullary Sponge Kidney and our claims of pain often go unheard.
Speaking for myself, I was diagnosed with MSK at 17 after multiple infections, stones, hospitalizations, and emergency rooms visits. The chronic pain didn’t hit me until I was in my early to mid twenties thankfully. Before the chronic daily pain, I didn’t need to take pain medicine any other time than when I was in the hospital or when I was having an episode. Sadly, the infections and pain became more and more frequent for me as I grew older. I ended up in the ER multiple times per year because the pain I experienced was unbearable. I think my record was 6 times a year in the ER and probably 1-2 trips to the doctor’s office and/or urgent care monthly. Obviously, with a history like that the medical community is bound to think certain things about you–especially as a young woman. I heard the warnings from urgent care doctors, “I just want you to know that we can see your records and know what you’re doing”. I’d think to myself, “what am I doing? I’m getting help, I’m in pain. I don’t know what else to do.” That was a dark time for me. I felt alone, scared, and misunderstood.
After 3 surgeries to remove stones, 2 successful in 2009 and one very unsuccessful in 2011, my Urologist I was seeing didn’t know how to help me anymore and he played the passing off the patient game. See a pain management doctor I was told. I happily obliged thinking this would help me. I know there is no cure or treatment (other than fluids and diet) for MSK and was at peace with living with my pain controlled. I went to a large chain of pain specialists in the upper midwest and was lied to on multiple accounts–from successfully treating MSK patients prior to me to my pain not being from the hundreds of stones in my kidneys and it really being my back pain. The way to help me was NOT through narcotics, it was through Lyrica and steroid injections. My Urologist’s PA was kind enough to prescribe me oxycodone while I was entering the pain center with the intention of handing over my prescriptions. I was going to the ER less on the oxycodone and was living a more successful and rewarding life. Lets be clear, narcotics do not have a good reputation. And the pain doctor believed that. She cut me down from the 45 10mg pills I was taking to 30 5mg pills. I continued to end up in the ER and her answer was more Lyrica and injections. It didn’t make sense. I had finally found a good treatment for my MSK pain and she was taking it away.
After months of trying it out, I left. As a now 24 year old woman with a successful MSK online support group, career in research, and level head I set out to find a new primary doctor as I knew I didn’t want to jump through the hoops of a pain center again. I KNOW that narcotics work for me and my pain and I am at peace with that. Thankfully I did find a great primary doctor who listens to me. Over two years ago I was put on oxycodone again. About 1 and a half years ago I was put on MS Contin ER. Its now been 1 year and 2 months since I was in the ER. That is how well narcotics like oxycodone and MS Contin help me life a normal and successful life.
I think its absolutely terrible that patients who legitimately need narcotic pain medication are suffering because of the people that want to abuse it. While I am so happy to be where I am, there isn’t a day that goes by that I don’t think about the fact that my doctor could taper me down or cut me off because of the opioid abuse in America. He knows that I am a good person who uses my medicine correctly, but I know that there are forces above him that are breathing down his neck and that scares me. I refuse to go back to the “life” I was living while I wasn’t on narcotic pain medication and will fight for it.
Slightly more than 20 years ago I was in a serious car accident that left me with neuropathy, paralysis, failed upper and lower spinal surgery, degenerative disc disease, headaches,TMJ to name just some of the health issues I struggle with on a daily basis. Not the least of these issues is chronic pain. Thanks to allergies to every anti-inflammatory, my medication choices for pain are limited to only opioids. I’ve gone to the same pain management Dr.since the accident and have been on the same medication and dosage for over 10 years. I’ve never had an issue of needing replacement prescriptions. I have been able to manage my pain and my life very well until the last several months. I’d taken my rx’s to Walgreens for many years until one day, without notice, they said they wouldn’t fill it any more. When I asked why, the pharmacist said, “I don’t need to explain. We will not fill it.” That began the downward spiral of pharmacy shopping and rationing. I found a pharmacy to fill it but only when they could get it in. Each Friday I’d show up with my rx and they would say either”nope, we don’t have it this week” or “we have a few we can give you.” Who else would put up with this when they go to fill a valid prescription from a licensed physician? I was told by pharmacists to shop around. I was lectured to by pharmacists about the drug problems in Florida. We all put up with this treatment, generally silently, because we’re too afraid to alienate the pharmacist in case they might fill our script or hope they’ll continue to fill it. Not to mention the specter of withdrawal constantly hanging over your head. The whole business is incredibly demoralizing and if you didn’t have depression before, dealing just with the pain, you’ll have it now. This needs to stop! Legitimate pain patients need to have access to the meds that make our lives liveable.
I am also a legitimate chronic pain patient with painful DDD, DJD, scoliosis and more. I also have a son that has been diagnosed with severe Neuro chronic Lyme disease. He had this disease for over 2 years before having a diagnosis by CDC guidelines and this disease is hell to get rid of, if possible at all after being allowed to procreate for so long before any treatment. Because I live in Florida and was an American Pain Foundation leader, I had a feeling that the Florida legitimate pain patient population was going to start having huge issues getting treatment. I was right, it has become a hell hole for thousands of patients here. Every patient in this state has encountered pharmacy problems of being denied their legal medications. Many of them are being made to suffer withdraw symptoms for days or weeks before they are able to find a pharmacy to fill their legal prescriptions. The snowbirds have told me they won’t be coming back and I agreed with them! How inhumane is this? Hell isn’t even a proper word for it. No one is denying that Florida didn’t have a need to get rid of pill mills but our politicians have went SEVERELY overboard here!! Our doctors are in such fear that many of them are either cutting the effective doses that have helped the patients for many years or they are stopping the prescribing of opioids all together. I felt I had no choice but to start a non profit organization in FL, (Fight For Pain Care Action Network) since the American Pain Foundation was shutting down and would leave us with no way to be heard. I hoped that these pain patients would join together and help fight for our rights. To help us find a way to allow access for the suffering to be possible once again. We have tried and we have done everything nearly possible to tell our state officials what is going on here, but our cries for help? Have fallen on deaf ears! WE even went to the state capitol to rally but still we are being ignored!
Many patients here have told me they feel defeated and that they have no strength to keep fighting as they once did. I feel confident that some have commit suicide. I don’t hear from some anymore and I heard from regularly before.
Since the Florida crackdown, problems with access to effective and timely pain management has spread all over the country. It’s so imperative that all pain patients, caregivers and healthcare professionals of all types, even healthy Americans start speaking out for this inhumane treatment to straightened out. This country was founded on freedom and compassion. Our government has forgotten about the 100 million people PLUS who suffer with chronic pain on a daily basis in our country.
We need to change the conversation happening with the media. They are causing more harm to innocent people with every negative, unsupportive articles they publicize for citizens, politicians and healthcare providers to hear. I hope dearly that our voices will be heard and that the cruel human beings causing all this suffering will STOP!! That common sense will prevail. All I hear from the media is ALL about addicts. What about THE innocent suffering patients who don’t abuse medicines and rely on them daily to have any kind of a life?
Thank you Dr. Fudin so very much for continuing to help support and fight for chronic pain patients rights ! Your loved by all of us.
I wanted to add one more thing before closing this long post. sorry.. I informed my pharmacist 5 days before I was to be leaving for a very important trip I was taking. They assured me that my medications would filled on the proper day. Well… I have boarded my horses, packed my bags, etc.. went to pharmacy to pick up the prescriptions?? The pharmacist told me that Winn Dixie food store pharmacy bounced back the prescriptions and that she had resubmitted them again. She’s hoping they will come in today. This is costing me a lot of money with horse boarding by the day! So, I am currently sitting here with a day worth of medications waiting for this RX to be ready, can you believe this? What in the hell would someone do if they had a $1200.00 cruise booked? or a airline ticket to go somewhere? They aren’t refundable. This is nonsense and needs to STOP NOW! I feel as though we are being controlled and have lost our FREEDOM while living in a civilized country?
Please, everyone don’t give up! Keep fighting and most importantly don’t stop speaking out to the people we need to hear us!
Thank you for allowing me to share the story of what’s happening here in FL..
Hey Dr. Jeff, well, i got this out to the “COFWA” group……….I read some of these letters and being a medical person, and a 14 year vet of arachnoiditis, I can’t help but get wet eyes. Pitiful, what people have to put themselves through to get any kind of relief. I literally cry for them………….God love you all. COFWA folks, get your stories up here…………..Thanks Dr. Jeff,,,,,,,,,,,,,herb “doc” neeland
When I suffered intracranial pressure after an epidural for an emergency C-section 20 years ago, I was effectively treated with opiods. My condition was pseudotumor cerebri syndrome, required over a dozen spinal taps over the next 12 months, and caused almost constant throbbing headaches. PTC can cause permanent blindness, so when I developed leakage of CSF after too many spinal taps I had to have a shunt implanted into my lumbar area, which has a drainage tube into my spinal canal which keeps the excess fluid drained. A subsequent revision gave me resolution, but I was “down” almost 2 years after giving birth. But although there were terrible days, when I look back upon that 2 years I know that my pain was treated very well overall. I was able to care for my infant and have real quality of life. My suffering was kept to a minimum. I made a full recovery and stopped all medications, enrolled in college, went back to work full time, and began jogging.
Fast forward to 2007..twenty years later. I’m a busy Mom and medical professional and find a lump in my breast doing a self exam in the shower. It was invasive breast cancer and required a mastectomy and aggressive chemotherapy. I assumed that my treating physicians would treat my pain, just as the neurosurgeon had 20 years prior. I was wrong…the entire climate and attitude of the medical community had dramatically shifted. I was forced to suffer in excruciating pain… searing surgical pain, blinding headaches, throbbing long bone pain, and open sores. I was told to take Motrin. On the verge of suicide, I dragged myself to my regular doctor and begged for relief. I was finally prescribed the lowest level of Lortab. Come to find out it was the policy NOT to prescribe pain meds until the Cancer/ Chemo patient specifically asks for them. But they didn’t tell me that.
I am still very angry that this society allowed me to suffer in horrible pain, and that law abiding citizens and hardworking families are being forced to suffer and pay the price for drug addicts and pillheads who want to get high.
I have a message for the politicians and DEA zealots who have imposed this cruelty:
You just wait. Someday YOUR wife will find a lump. One day YOUR son will crush his knee in a wreck. Someday YOU will get Shingles. And when fate takes a twist and it is YOUR turn to need pain care for yourself or someone you dearly love, I hope you suffer like we have. Remember, the laws you pass apply to you too.
In 2000 I had oral surgery to correct my bite. During the surgery a nerve was damaged (5th cranial nerve, V2 section). I was diagnosed with atypical facial pain. For the next four years I continued working while trying to find that manic doctor who could stop the pain. I realized that I could no longer work with the continuous pain. I was and am on the maximum amount of the following medications: gabapentin, Keppra, Tegretol, Butrans and baclofen. But I am still in pain every waking moment. I have even had Gamma knife surgery and a craineotomy to cut that nerve branch from the brain stem, all to no avail. Still no doctor wants to prescribe narcotics because of the stigma attached and the state and federal watchdogs that abound. I have no quality of life because of the crushing pain. This narcotic scare has to change for those of us living with pain daily and with a clearly diagnosed pain condition.
I am 30 years old, have passed 94 kidney stones, and have had 25 surgeries for multiple conditions. I have a rare genetic disease called Ehlers Danlos. This disease has also caused me to have Chiari Malformation, Medullary Sponge kidneys, Gastritis and Rhuematoid Arthritis. Every day is a struggle. I work full time so I can afford to pay for insurance and medical bills, and support my family. I have an amazing little girl and i refuse to let my diseases and the chronic pain they cause debilitate me. I am limited in my treatments because of the 15 medications I take her day. I would not be able to survive without proper pain treatments using opiods. I do not take them regularly, because thankfully I have a high pain tolerance, but I do need to have these medications on hand for back up. Emergency rooms get tiring and expensive. My specialist tries to get me the treatments I need at home so that I do not have to go to the ER so often. Making this process more difficult only makes it harder on those that are already suffering. Don’t we have enough to deal with??
Megan, I have EDS and have been having kidney issues for about a year now. Do you know if your kidney issues are in any way linked to the EDS? I haven’t been able to get a diagnosis for the kidney pain I have, though I have passed many stones. Is there any chance you would be willing to email me and discuss? Juju4paws@gmail.com
I have suffered with chronic pain for 8 years. My diagnosis is Bilateral spondylolysis L5-S1, Grade 2 spondylolisthesis L5-S1, Moderate right and severe left foraminal stenosis, compromised left L5 nerve root. Recently diagnosed with dextroscoliosis of cervical spine 15 degrees, C2-C5 moderate stenosis, flattening of anterior cord, canal measures 9mm, severe stenosis C5-C6. I always thought my lack of insurance was the reason for no real pain management in my case. The only time I was ever prescribed anything it was for 1 lortab per day. When I told the spine and pain center that I was still in pain they threatened to take my one pill a day away. I eventually stopped going after 6 ESI’s and a prescription for 3200mg a day gabapentin was their answer for everything. I was paying cash for this treatment and it just wasn’t working.
Fast forward to this year when I received insurance through the ACA. I found a doctor who although very attentive expressed to me on my first visit that her office doesn’t prescribe pain meds. After receiving the results from my latest MRI she again expressed her policy of no pain meds. She went on to tell me that it’s just not worth losing her license over and that’s the reason she will never begin pm’s.
She did refer me to a neurosurgeon in which I will wait another 2 mths. to see. I hope he will do something for my pain, I have my doubts though.
I have a friend whose dog got hit by a car last week, the dog was given pain meds..I just don’t get it.
You will not get pain meds from a neurosurgeon. You need a Pain Management Specialist who does medication management; this will prevent any more of your time and money being wasted on “pain docs” who do interventional procedures only. ASK prior to making an appointment and read reviews online. I don’t get it either, as to why a dog can get pain meds, but not a responsible adult trying to work and keep a family afloat.
I was stricken with Fibromyalgia in the prime of my life. Basically I wake up every morning feeling like I was run over by a car, or that I was beaten up or that every bone in my body is broken. Every. Single. Day. It never went away even though I was treated by the best of doctors and FM specialists. I’ve tried every drug used for FM with absolutely no relief. I had to stop working. I couldn’t do any housework. My marriage fell apart. Although I have some friends, I have no social life to speak of. After about 11 years of living with this nightmare of pain I finally went in to my doctor and asked him to give me something stronger. I was prescribed Oxycodone. I couldn’t believe it! It worked! After having tried countless drugs and therapies for eleven years, SOMETHING FINALLY WORKED! I had a life again! After a few years my prescription was increased in strength because it wasn’t working as well. I developed a problem in my spine that shoots pain to my hips which prevents me from walking more than one or two city blocks. My pain prescription was changed to the same drug but without the Tylenol. [Sorry, I can’t remember the name.] Again, the relief was incredible! Except the next month when I went to get it filled I was told that they did not have the drug in stock. I went back on my old dosage of Oxycodone because I couldn’t find a pharmacist who would fill my prescription. I wasn’t getting nearly the pain relief but at least it was something. Until the next month when I was told they didn’t have ‘that’ in stock. I received a letter from my doctor saying that because of the increased scrutiny of the DEA, he would no longer be treating pain patients. This was a revered, Board Certified Pain Mgt. Specialist who was NOT in any way in trouble with the law but he just found it too difficult to treat his patients with the DEA breathing down his neck. I was able to find another Pain Mgt. Specialist but now found that the pharmacies were not even filling my Oxycodone prescriptions. The same pharmacy that had filled this same prescription for 3 straight years suddenly and without warning just stopped filling them! I began having to do what is called, “The Pharmacy Crawl”, driving to pharmacy after pharmacy desperately [and in pain] trying to find SOMEONE who could or would fill my legal and legitimate prescription. Sometimes I had to go to upwards of 6 or 7 pharmacies before I would be able to get it filled. All the while, in pain and on the brink of withdrawal. This is impossible to do when you are in pain. Heck it’s rather tedious and frustrating when you’re not. I didn’t understand why they were treating me so strangely. I felt like they were treating me as a criminal. I lived in fear that when the end of the month came I would have to do it all over again – beg from pharmacy after pharmacy until I finally, magically was able to get it filled. It is extremely dehumanizing to be told things like, “Sorry, we just don’t have it in stock” while you are wracked with pain. In the past few months I have found a pharmacy who fills my prescriptions every month but still, I’ve had to wait for 4 or 5 days and even had to do the dreaded “Crawl” again. But I am grateful as it “seems” things are getting better, for me [fingers crossed] anyway. I went over a year and a half being turned away before I got to this point and there are no guarantees I will always get my prescriptions filled every month, on time. The stress this causes is incredible, which just makes my pain that much worse. I can only use this one pharmacy and those who are in the next county won’t fill because I don’t live near them, even though they are the same chain. We are treated differently at best and inhumanely at worst. I want it to stop. I want these prescriptions treated as any other medication a person would need. Imagine if you were suddenly told one month that you couldn’t have your heart medication or your cholesterol prescription filled because “they were out of stock! And you were told this over and over or given a myriad of other reasons. You’d be upset, too. It’s not right and the DEA knows it’s not right. This has to end! A person who can barely walk should not have to go through this roller coaster of endless fear. And no one should have to live in pain! No One!
I too have been struggling through fibromyalgia, herniated discs, sciatic pain and severe arthritis for years and treated by a pain specialist for 25 years. For the first time during those years I am now going from pharmacy to pharmacy to find my medications. A patient is required to sign a document stating they will use one pharmacy only. Well this cannot be the case anymore. These pharmacies are not allowed to tell you on the phone if they have the medication so a person is forced to drive any and everywhere to find some place to fill their prescription. I do not have insurance and on a limited income and spend too much gas, money and pain ridden time doing this every single month. It is certainly degrading to be treated as a lowly person searching for their medication. I have been blessed with a great doctor but beginning in 2014 I noticed a change in the office and their concern about medications prescribed and the urinalysis procedure forced on me routinely. I can’t get one bill paid for and then another one is needed. And I might add that nothing has ever been found other than what I’ve been prescribed for all those 20 years! I pray the laws can go back to the way it was for real patients except for squashing the “pill mills”. It is hard for us in chronic pain and I believe does nothing to curb illegal use of drugs. I pray for government entities to understand the dilemma of people living with constant pain. Thank you for the forum to allow our voice to be heard.
Well said, Dr. Murphy. Thank you for clarifying some important issues. Where doctors and patients can discuss these issues together, there is hope to end the current “opioid wars.” As a chronic pain patient I deeply appreciate the commitment of a compassionate physician who took the time to provide alternative therapy for my pain when I could not take any pain medications. I now have my life back. At the same time, had I been able to take opioids for the intense pain, I would have done so, safe in the knowledge that as long as I followed the orders for taking the drugs, I would be fine. I also would not have suffered for such a long time. We must keep the conversation going.
Experience #3 I am not a chronic pain patient but am an advocate for those in chronic pain. Back in December 2013, I had a friend who was scheduled for back surgery. Her surgery was scheduled in a week. She posted on Facebook a simple quote “I don’t want to live” (this is a very upbeat person) …worried, I messaged her and asked what was happening. She explained she has debilitating back pain and had a prescription for pain medication from her doctor to get her through until surgery the next week. She went to several pharmacies and could not get anyone to fill her prescription. She lives alone, and was in too much pain to continue, so she went home. The pain she said was excruciating. She had called her doctor, but hadn’t received a return call. When she did they advised that she go to the emergency room, which she did. That helped her get through the night, and the next day. Her doctor exchanged her prescription for another, but after many pharmacies she was unable to get that fill too. She ended up going to the emergency room 4 times in one week prior to her surgery just to keep the pain down. She had her surgery and is now pain free and back to work. Difficulties in getting pain medication prescriptions filled is not just a chronic pain problem, it is an everybody problem, but people don’t realize this until they are in pain. This should never have happened, and change needs to be made.
Experience #2 I do not have chronic pain, but my sister suffered from acute pain after a double mastectomy. She had cancer, and we had to go out of our hometown for the surgery. Upon discharge I was given prescriptions to fill for her. We were staying in a local hotel a little far from the hospital as it saved her quite a bit of money. Her doctor’s didn’t want her traveling back home in case of complications from surgery. I brought her back to the hotel and she stayed with family while I went to fill her prescriptions. I was a little surprised when the first pharmacy said they were out and couldn’t call other pharmacies in the chain that were close by. She offered no help. Not familiar with the area, I drove to the next pharmacy, and was told “we will not fill this prescription, pharmacist’s discretion.” I didn’t understand my sister had Blue Cross/Blue Shield insurance, why wouldn’t they fill? It took 4 hours of driving around before I found a pharmacy willing to fill the prescription. I felt I was judged wrongly as a drug seeker and was exhausted by the time I got back to the hotel. My sister was in pain as she had to wait for her first dose after just leaving the hospital from a major 12+ hour surgery. I couldn’t believe that this could happen to me or her. This should never have happened. That was in 2011, and the problem has gotten worse. I will forever be an advocate for those in pain because of this experience.
While I do not suffer from chronic pain myself, I do have a family member that has suffered for 18 years with chronic pain. I’ve witnessed first hand as he tried facet injections, epidural injections, intercostal injections (over 300), acupuncture (6 months everyday), physical therapy (numerous times), massage, vitamins, eastern medicine herbs, several “pain” diets, numerous meds including anti-inflammatory, pain, neuropathic, tons of tests at Johns Hopkins, The Mayo Clinic, Cleveland Clinic, and specialists of every possible field of medicine. The absolute last resort over the years has been opioids. They reduce pain quickly like no other therapy, but come at a price…constipation, foggy thinking, nausea, exhaustion, but most important worry. Worry what others will think, the stigma attached, especially by clinicians, physicians and pharmacists. This is killer like no other. It’s a punch to the gut, when you feel your worst. I believe if every person could experience this just once, they’d understand the importance of opioid meds. When everything else fails, this is a lifeline!
I worked for a facility as the Director of Medical Records, from which I have since retired due to my medical conditions. I had been seen by providers at my place of employment for the entirety of my time there, some 25 + years. When I started to suffer from DJD and Fibromyalgia as well as having a physically demanding job that rarely involved a mere 40-hour week, I was prescribed opioids. Eventually the Joint Commission and its “fifth vital sign is pain” mantra came along and being the proud JCAHO accredited health center we were, we changed all of our forms and included the 0 -10 scale and played along. So followed my own personal care.
Eventually, I was on two 80 mg. oxycontin per day as well as six hydrocodone 10/500 per day. Then the news came that things were changing and pain was no longer going to be in style. No longer the fifth vital sign and woops, we may have made a mistake. I was told by my provider of the last ten years, “We are going to have to start cutting back on some of your medications.” He explained that the thinking was changing and these drugs were no longer considered to be the way to go when treating patients with chronic pain. “What would happen if you were in a car wreck and broke your leg”, he asked me, “We would have nowhere to go with your pain relief.” I explained to him, I would take my chances.
Then came the day he told me the laws were going to change. A law, Kentucky House Bill 1, it would be referred to, was going to go into effect and we would be “humanely” weaning me off all narcotic medications. By this time, I had inhumanely weaned myself off the Oxycontin “cold turkey” several months prior. I guess you could say I saw the writing on the wall. It was an eye-opener. I realized I felt really bad, and not just from physical withdrawal. I had the worst case of restless legs syndrome and didn’t know for a year that it was not going to just go away as all the other withdrawal symptoms did.
Eventually, I was seeing another doctor for the first time in nearly 30 years. I had to find a doctor in a world that was “opioid shy” to say the least. I has Fibromyalgia, Restless Legs Syndrome (24/7, all over my body), Interstitial Cystitis, Migraines, a foot with torn tendons that cannot be repaired and NO DOCTOR to treat any of these conditions with narcotics.
I got practically NO SLEEP at night for many months. I was on Ambien but they had a special session just to take my Ambien away (it seemed to me), so sleep was a problem now. I found one doctor thanks to a friend. This doctor I saw for five months before he stopped accepting my insurance. Again, for the second time in 6 months, I need a new doctor. The next doctor told me the last doctor had me on too many opioids and he would send me to a pain clinic to help me get off all these terrible drugs.
I ended up at a pain clinic where it would be months before I received any treatment as the nurse practitioner there believed I had MS. I was sent to a Neurologist where I was diagnosed with RLS and Peripheral Neuropathy, via EMG. I was still a good year away from receiving any treatment for the RLS or sleep problems, but finally, eight months after I received my last prescription for lortab from my former employer, I received some relief from the pain clinic.
The result of all of this was my having gained a substantial amount of weight due to inability to move from pain so debilitating it was all-consuming. No more gardening, hiking, cleaning he house was next to impossible, even taking a shower was a huge chore. I became a couch potato.
I cannot believe the price I personally have paid for the actions of others who stole, bought or mistook their medications. I am still not in a position where I am able to do everything I would like to, nowhere close, but those were the good old days when a patient was treated as an individual and the DEA and politicians were not in the exam room with you and your medical provider.
I will be the first to admit, I was being over-medicated, at one point. I don’t expect to be “pain free”. But some semblance of a normal life would be nice. Will I ever be able to have that in this non-patient-friendly environment? Time will tell. I know I don’t want to sit on this couch and die.
See my Facebook Page link below:
https://www.facebook.com/pages/Opposition-to-Kentucky-HB-1-Reform-HB-217-aka-Pill-Mill-Bill/595049517218134?sk=insights§ion=navLikes
I was injured while working in the building and construction industry in 1990.
Spine L4-5. Discetomy (failed)
Many reccomended meds. Therapies etc. finally settled for Opiates . Long term use , endured stigma of narcotic user. Etc. Finally after 19 or so years I had no choice after stopped utilizing opiates to have Spinal Fusion L4-5 .and now manage pain with exercise and attitude. (Faith) . The price using prescription narcotic meds. Cost me dearly. I realize any one who suffers from pain, chronic pain looks for relief but I reccomend to avoid narcotic dependent/ additive medication as best as possible. Since it’s not treating the cause only the symptom. Though I understand the need to live with and manage the pain. Hope you consider this option from some one how has been there and done that and is not involved with producing and selling Drugs no matter how noble and humanitarian the motive.
Faith , Hope and constant ongoing Pain can be paralyzing.
I’ve been suffering from chronic cervical pain that’s spread to my thoracic spine for 20 something years now. I told my story about how this happen from a roll over car accident , the roof collapsed down on the top of my head when I was 28. The pain started 15 years later after two people ran in to the back of my car just two weeks apart. The pain became chronic and I tried everything doctors wanted me to and nothing worked. I met Dr. Joel Hochman in the year 2000, he was the first Pain Specialist to get my chronic pain under control. I couldn’t believe the pain relief I received after he titrated me up on OxyContin. It made me angry doctors let me suffer for 10 long years. I knew nothing about time released pain medications. Dr. Hochman was my doctor for 12 years and I did volunteer work for him for 8 years on our website .I advocating for others in chronic pain , moderating the website and chat room. Tragically we lost Dr. Hochman to kidney cancer September 12, 2010. I had to find doctors for the better part of his chronic pain patients, it was a bad time for all of his patients that suffered from chronic pain and even worse we lost Dr. Hochman.
I found a new Pain Specialist in late 2010 who took over my pain treatment program ,2 years later he let me go for no known reason I knew of , I left on good terms ,he told me no hard feelings but its best you find a new doctor. I don’t abuse my medications, I don’t sell my medications ,I take them responsibly . All I do is advocate for the right for all that suffer from chronic pain get the correct pain treatment program . I found yet another Pain Specialist last June , he has been nice to me but wants me to do the trial of the Prialt Pain pump. I’m doing well on my current therapy of a oral pain medication , it doesn’t make therapeutic or financial sense to go down the path of the pump. Just doing the trial to see if it will work could cost around 5 K. The estimated annual drug cost per patient for IT Prialt / Ziconotide is about $1500/month.That is plus the cost of implanting the pump around 20 K – 30 K.
I’ve read up on the Prialt pump on Pub Med, http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0044647/ and its frightening all the side effects of this drug coming from the Pacific Sea Snail .And for me to even think about having a foreign object placed in my body and the possibility of infections .Every time something goes wrong with the pump surgery needs to be done to correct it. Now I’m searching for yet another Pain Specialist ,I will be 58 next month and I’ve just about had it with all these negative stories forcing doctors in to not wanting to prescribe opiates.
At what point does one say I had enough ,all this negative hype is never going to change , I’m sick of this life of never ending chronic pain. It would be easy just to give up and end this life of pain but I just cant do that after all this time and because of my religion. I could never put my 80 year old Mom whom I adore through something like that. So yet again I’m seeking out another Pain specialist and I just cant believe it has come to this. So this is a prime example of what’s happening to all that suffer from chronic intractable pain here in the U.S. and the doctors that go out of their way to help us.
I appreciate Dr. Fudin continuing to move this out of control problem forward.
I have TN (Trigeminal Neuropathy) due to a car wreck. I had a MVD (Microvascular Decompression) surgery that was a failure. I have taken a lot of different drugs that just don’t help. But the drugs that I was on I had a terrible time w/ the insurances not wanting to pay or having to get pre-auths all the time & most recently the prices went way up on those pain meds. It became a real problem this past year & so I am off all meds. It wasn’t worth the headache on top of my actual head pains to deal w/ the red tape.
I read the NYT story of the heroic soldier who is on a tortuous journey to find comfort. http://www.nytimes.com/2014/05/11/business/a-soldiers-war-on-pain.html?ref=us&_r=0
My heart goes out to him, his family, and the others who are touched by the pain of war. We owe them so much. They deserve our best.
At the same time, articles like this do not tell the whole story. This soldier suffered from depression, PTSD, and neuropathic pain. Opioids were not likely to help his type of pain (i.e. neuropathic), and his psychological condition made him a very high risk for chronic opioid therapy.
But his story is not everyone’s story. As a pain specialist, I am privileged to meet people every day who are on a journey; some lives are worsened by opioids, some lives are enhanced. However, I am certain that when properly screened and monitored, opioids can be an appropriate mode of therapy for many.
As I read the NYT author’s somewhat sanctimonious declaration that the soldier was now only taking Celebrex for his pain, I wondered if there would be a follow up article should he suffer renal failure, a bleeding ulcer, or myocardial infarction from the “morally superior” non-narcotic. https://twitter.com/jamespmurphymd/status/461190400636502016/photo/1
There needs to be a forum for the success stories (http://goo.gl/v8NuKX ), if for no other reason than to provide balance to this discussion. Thank you Dr. Fudin for providing this forum. I look forward to being inspired.
James Patrick Murphy, MD, MMM
Pain and Addiction certified
Hello Dr. James Patrick Murphy, (MD, MMM),
I have a question for you, which I admit has taken me weeks to build up the courage to ask.
If you have a patient that has neurological pain, such as CRPS/RSD, do you insist that opiates do
not ‘help’ that type of pain? Or, do you listen to the patient when they say they (opiates) do help to
relieve their pain?
I am curious because I had a ‘specialist’ at Mass General tell me that opiates did not help CRPS/RSD pain because it
is neurological. He wanted me to up gabapentin to 3200 mg a day. I could not get past 800mg per
day. Years before I had a bad reaction to topamax. I have had bad reactions to celebrex & cymbalta, rashes from both of those. With the gabapentin I became extremely hostile, angry, depressed & so much so, suicidal (which had never even been thought about at any other time in my life, before or since).
That doctor wanted to up the gabapentin, give me tramadol (which had been tried, & not only did absolutely zero for pain, it also gave me ‘metal mouth’). He said there was no way I could do physical therapy. At that time he was correct. He refused to listen to anything I said & I seriously doubt that he even read my records.
However, since getting the proper dosages of opiates I have built the calf muscle up to almost normal by doing my own ‘physical therapy’, & I am as active as I can possibly be, although I do have to use a cuff crutch. I often over do it physically causing a pain flair, I certainly ‘pay for it’ later. I have come to the conclusion that I am going to be in pain no matter what, so I can be in pain on the sofa or in bed, or I can live life to my fullest potential & stop to rest & recuperate when I must, which is more than I prefer but better than always.
Without opiates, I would be bed bound. I have gone without opiates twice, as stated in my story, once by choice, once not by choice. I was bed bound & miserable.
I thank you kindly, Carole
Carole,
I will alert Dr. Murphy to your question. For the record though generally opioids are not preferred for CPRS/RSD. However, if opioids are used there are certain opioids that tend to be more effective than others. The answer to your question in that regard is answered in “Zorn KE, Fudin J. Treatment of Neuropathic Pain: the Role of Unique Opioid Agents. Practical Pain Management. 2011 May; 11 (4): 26-33.”
Thank you so much Dr Fudin.
I found that most interesting & will be re-reading it & perhaps take to my doctor.
Could it be because I have had such bizarre adverse reactions to the
medications that are usually prescribed for CRPS? It has been advised, on more
than one occasion, to never again try medications that are in the family of gabapentin.
It was put in pharmacy records as well.
I have had strange reactions to other medications, as well as my maternal grandmother.
Thank you kind sir.
“Could it be because I have had such bizarre adverse reactions to the
medications that are usually prescribed for CRPS?” Of course. I have several patients that are intolerant to this class of medications but can tolerate many others and visa versa. Not all medications fit every patients even within a medication class. rare as it might be, I even have patients that can tolerate either pregabalin or gabapentin, but not both.