Time Sensitive Social Media Campaign-PAIN UNDERTREATED-Tell stories NOW!

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CDC SPPAN social mediaThe CDC has initiated a social media campaign which asks the public to tell stories of those affected by prescription opioid addiction or the death of a loved one, using the hashtag #RxProblem. However, we have two public health crises—undertreated pain and prescription drug abuse—which must be addressed together. To make sure we connect better pain care to this issue, SPPAN has added #AnotherRxProblem.

We encourage everyone to share this photo, including the hashtags #AnotherRxProblem and #RxProblem, and adding your own personal message.

The CDC campaign ends May 15, 2015, so ACT NOW to help the CDC and others to understand the whole story!

The CDC campaign ends May 15, 2015, so ACT NOW!
The CDC campaign ends May 15, 2015, so ACT NOW!
The CDC campaign ends May 15, 2015, so ACT NOW!
The CDC campaign ends May 15, 2015, so ACT NOW!
The CDC campaign ends May 15, 2015, so ACT NOW!

77 thoughts on “Time Sensitive Social Media Campaign-PAIN UNDERTREATED-Tell stories NOW!

    1. Just had a facet joint injection…had sedation felt ok ..but since I can’t stand up straight. Laying on my stomach for the injection had me in tears with severe pain…can they do this injection. On your side??

  1. I have been living with Chronic Pain and/or Fibromyalgia since 2001….possibly longer, that’s just when I was diagnosed. I also have a LONG list of other ailments to add to my pain and I have been blessed with approval of disability. I am thankful for what I have and for Medicare but it’s not enough! AND many times it is insurance that decides what I can and can’t have….how can they override my doctor who sees me and KNOWS what helps me and what doesn’t??? I have to pay the full amount for some of my meds because insurance refuses to help and one in particular is something I HAVE to have due to constant Charlie Horses….muscle cramps (?)….no we’re talking FULL BLOWN CHARLIE HORSES that come out of nowhere!
    Alot of people who don’t understand Medicare think it’s the same as Medicaid as well….they fuss at me for not having surgeries I need then I have to explain that I still have to pay at least 20% of everything, they think it’s all free!
    I know that I am more blessed than some but still…..it really sucks when insurance companies override my doctors and I end up having to pay full price for the meds necessary for my problems as well as pay for my insurance.

    1. Hi, just wanted to tell you that I totally understand what you are saying, I was diagnosed in 1987 with FIBROMYALIGA, CFS, IBS, RLS & ARTHRITIS & None of the meds that is approved for Fibro helps Me, I have tried them all and the only one that helps Me a little bit is””Neurontin”” and Pain Meds, and I know that the pp’s work but my Doctor said that the””SO CALLED EXPERTS “” Say they don’t help People with FMS, and I know differently, the only thing that I don’t like about the pp’s or any meds I take is””My body builds up a TOLERANCE TO THEM, I REGRET NOT GETTING CONTROL OF MY LIFE WHEN I WAS FIRST DIAGNOSED, STRESS IS THE WORSE THING FOR US AND I GET NO HELP OR COMPASSION FROM MY OWN FAMILY, I HATE MY BODY AND MY LIFE, If I have to be like this for the rest of my life then I am ready to go Home. I will Pray for you and your situation and hopefully we will be HEALED BODY AND MIND FROM THIS CRAP

    2. Sheila Ross….same here! Medicare is not the same as Medicaid! We don’t get anything for free! and if you own your home..well forget even a little bit of help! My husband is retired and I am also blessed for getting on S.S.D I worked for 14 years at this one place where I still hold a 401K at least. Hubby has no other income other than his retirement. So we live on a fixed income. I’ve had many, many surgeries to count and will not – NOT have anymore regardless! I’ve lived in chronic pain for the last 5 years and it’s not pretty. My heart goes out to ALL chronic pain patients and also their family – who stands by there side day in and day out for support.

  2. We need to organize some marches or sit ins! Get Washington to realize that this is injustice for humans! In humane treatment! USA can head to some other country and tell them how to treat a minority or ELSE! Then we treat the minority of pain patients like junkies criminals and worthless degenerates.
    Just because the pain is lasting and chronic does NOT mean it should not be treated with medications that will provide some relief it should the the opposite! We have the right to a reasonable quality of life!

  3. I had a doctor who understood pain management, addiction, and neurology. He was understanding and compassionate. He moved out of the area, and now I have doctors scheduling appointments with me just to say “I’m not the doctor for you”. They don’t want to deal with my list of chronic conditions/illnesses. They run when they know you need help with pain. I’m a single mother and work, but since I cannot get a doctor to help, I am not sure how much longer I will be able to work. I am deteriorating fast. I found another doctor to try to see if they will help, but I have to wait for over a month to be seen!
    This government watchdog is NOT watching out for people who are truly in pain, only addicts. The difference between an addict and a pain patient? I don’t know any chronic pain patients who go out and purchase street drugs when they can’t get their prescriptions. So please, government, explain to me why people like me must suffer?
    I have been on and off pain meds for years. Have quit “cold turkey” many times, for extended periods of time. I don’t want to be on pills. I just want to be able to function and participate in life!

  4. I was diagnosed with fibromyalgia (fibrositis it was called at the time) and d-IBS 37 years ago, but pediatric medical records indicate I have had both all my life. In 1989 I was diagnosed with cluster headaches (a form of migraine). For years I was on an the lowest dies of a particular opioid that worked to control the unrelenting, widespread, profound chronic pain of fibromyalgia until the FDA discontinued its use and production due to misuse by addicts and resulting deaths. I then went through a series of different low dose opioids and other “fibromyalgia” medications or options information trying to find one that worked to curb the pain a bit, that did not cause severe d-IBS, anaphylaxis, severe cluster headaches, severely increase my pain levels beyond tolerable, or nausea accompanied by vomiting. Finally 5mg oxycodone was prescribed and assisted me a bit. I have never used more than prescribed, wait as long as possible before taking the next dose, signed all “pain contracts”, never begged or sought more than the 30-day supply, generally use a 30-day supply in 45 to 60- days rather than in 30-days, may not take it for days on end without experiencing any withdrawal symptoms if I can stand the pain or I am not not in a severe flare-up. However, in the last year and a half I have found pharmacists in my small rural town unable to fill my RX for weeks because their allotted quota has been filled. Or I am asked why I am prescribed the medication (note: my physician has taken to listing on the RX “prescribed for severe SI joint pain,” which I also have due to fibromyalgia and severe nerve damage from an accident that broke my heel and resulted in a 39% disability in one leg) to stop the questioning of her RX. Understand that my pain is undertreated. 5mg does not do the job of my previously discontinued opioid. I am afraid to ask for a dosage increase even though I have told my physician that when I take the dose I have to wait 2-hours to get a bit of pain relief that only lasts maybe, if lucky 2-hours and then wait in agony for another 2-hours before my next dose when I am in a bad flare-up. I do not want to be thought of as an addict. I know I am not, I can go days and weeks without a dose. Unfortunately, due to the fact that all other options (RX) are not available to me due to extreme sensitivity to various drugs, coating on the exterior of generic drugs, dyes, etc., the 5mg oxycodone is all that is available to treat my chronic, widespread, unrelenting pain from fibromyalgia. I do use other home remedies (hot baths, topical treatments that are ineffective, but I try to think they help…mind over matter).

    I ask that you do not penalize those of us with chronic pain who use our medication only as prescribed because there are those who don’t and who are addicts. Please use the other resources and means at your disposal to weed our addicts and drug abusers. Do not make it such that I would have to drive 2 to 4 hours round trip on an almost monthly basis to get medication that permits me to continue to work by managing my pain within tolerable limits due by decreasing pharmacy quotas of opioid medications. Do not paint chronic pain patients with the same brush as drug abusers and addicts.

    Please excuse all typos. I am writing this on a cell phone and it has a tendency to do strong autocorrects to standard words.

    1. I have had fibromyalgia and IBS all my life (56 years), and a 39% permanent disability in my leg along with a severely bruised and never to recover sciatic nerve that affects my SI joint. For 19 years.

  5. Just a quickie:
    The town I live in is full of drug addicts and pill poppers so it is very hard for someone like myself to get properly treated for my pain. I finally found the only pain management clinic in town and the cost is almost $200 a month plus a addt’l $75 when you get pill counted and pee tested. I am soooo tired of having to fight the stigma around here that because I am on pain medicine I am a addict or even worse a druggie. NO, I am in pain. It is PAIN medicine, isn’t that what they make it for? I have to live in horror every day for the rest of my life due to all of my chronic pain issues and I also on top of that hell have to deal with not receiving proper pain medicine treatment. I am sooo afraid to tell my doctor that I am not getting enough medicine to accurately treat my pain because if I lose him there is no one else and all of the other doctors that use to treat pain are too scared to any more because of the DEA. I always over take my medicine because I don’t have enough given to me per month but I have 2 kids to take care of and the only way that I can function and live some type of quality of life is to take what I need when I need it, its that simple. I find myself having to go sick for a week before my appointment most times and even have to beg and borrow from other fibro having friends. I am so sick of pain not being treated as a serious medical condition because it is!!! Pain is really real and even thought you can’t see it its there all the time. It sucks living in pain every day. Because I am 30ish and have 2 kids and try to stay active to ease my symptoms I hear all the time, oh but you don’t look disabled….well you don’t look stupid but we both know looks are deceiving at times. I am in real pain. Treat it with real medicine. Stop running scared from the DEA because people that have to live in pain with no medicine are the ones who end up dead. Pain won’t kill you but living in pain will make you want to kill yourself. We know the risks of the meds on us but personally speaking I would rather have quality of life not quantity at this point. Sorry for the rant but I am so fed up. If I have to deal with my conditions, that’s enough. Please don’t make things worse by questioning me or shaming me if I need a few extra pills a week. Until you have taking a walk in my very comfortable dr. schools shoes do not judge me. Get off of your high horse and piss off.

    1. Living In Pain, Rant all you want~!! make’s me feel good also when I rant 😉 Something has to give somewhere!!

  6. I have Fibromyalgia, DDD, 6 bulging discs, Carpal Tunnel Syndrome and Osteoarthritis. I am in pain every second of every day. In October, 2014, my pain got so bad that it threw me into a heart attack. I understand that there are people that abuse pain medications…but…I also know that there are legitimate people that need our pain medications just to make it through the day! I don’t see why we should be punished for the abusers. I am 54 years old and I have an 8 year old daughter…do you have any idea what I would give to be able to have my life back….be able to play with my daughter when she asks me to without having to tell her that her mommy is hurting too bad? Taking the pain medications helps me to make it out of bed every day….PLEASE….don’t take that away from me and my daughter!

  7. I live in Canada and have suffered with FM and OA for 15 + years. We’ve moved to a small northern town, cost of living is lower than the bigger cities, but the doctors here brush off pain as weakness. My doctors is slowly decreasing, each month, the amount of pain meds he gives me, without discussing it with me, or giving me other options. I’m taking more time off work each month due to pain, am becoming very withdrawn and angry. Spend more time crying from lack of sleep, lack o support than I do enjoying life. I also have neuopathy in both legs due to nerve damage which makes even walking an excruciating exercise. Why he won’t listen or try to find other options is beyond me?

  8. Please correct the problem which the government has created! While they were trying to help our nation with the pill addiction problem they were addressing, they also created a problem for those of us with Chronic Pain and have made it near impossible to be treated for our pain! I have Fibromyalgia, RA, Osteoarthritis, Myalgia’s, TMJ, IBS, PTSD, Anxiety Disorders, Panic Attack Disorder, Agoraphobia, and other diagnoses that go along with the ones listed. My Rheumatologist had to limit the pain medications he could give out starting last yr. and stop treating many of his patients for pain, and it has ruined what little bit of life I had while being treated. It’s bad enough that I can’t get medical assistance in TN unless I’m diagnosed with Breast or Cervical cancers, but now I can’t even pay cash to be treated! My pain is unbearable most of the time, so bad that even my hair seems to hurt! My muscles are so tight that it’s pinching the nerves in my neck and back, my hip joints rub together while walking making even grocery shopping a dreaded chore. Sleeping is out of the question while I try to find a position in a chair or bed that I can lie in for more than 5 mins at a time. The knots that come up when I’m stressed in my hands, feet, and bends of my elbows and knees feel like they will burst out of my skin. The Carpal Tunnel in both hands and arms, Neuropathy in my hands, feet and up my arms and legs Sciatica down both legs are unrelenting….on and on and on! I truly consider giving up several times a day and night anymore. This life is not worth living like this, in this much pain. I stay for my loved ones, but my quality of life can’t make them happy, they worry and stress over my pain every day. Someone has to fix this problem, I can’t go on like this and I’m sure there are many many more like myself.

  9. My story falls under “another RX problem. I wasn’t going to tell it here, because if have written so otten on my blog this past year, and after more than 45 years of chronic pain I am all too aware of how quickly another person’s pain becomes an old, boring story. I was diagnosed with osteoarthritis and degenerative disc disease 45 years ago, and today I have both issues all the way up my spine. My first herniated disc was in 1968. I have had both arthritis pain and nerve pain, with both diabetic and spinal neuropathy in my feet. I have had frozen shoulders, and temporary loss of strength in both arms at different times, more than once.
    I HAVE BEEN UNDEERTREATED FOR CHRONIC PAIN UP UNTIL THIS PAST YEAR–BECAUSE I CANNOT TOLERATE PAIN MEDICATIONS. Specifically, I cannot tolerate morphine or any of its derivatives (along with many other medications for other problems).

    I have not even seen an orthopedic surgeon in more than 30 years. The last one I saw, who was my boss at the time and took as good care of me and my pain as possible, told me not only were my bones in poor condition, but I needed to accept that this was a degenerative process that would continue, and unless I intended to have repeated surgical procedures the rest of my life I would have to learn to live with it and keep moving. I kept moving.

    I retired two years ago at 72, and moved to a city where there were many excellent physicians. I didn’t retire because I wanted to, but rather because after the most recent bulging discs imploded on either side of the T1 vertebra, causing it to slide over and tilt upward, the resulting scoliosis added to the pain of the injury site left me barely able to get around and in constant, unforgiving pain. I still could not tolerate pain medications, and my physician had tears in his eyes when he said “there’s nothing I can do.” My diabetes was out of control, my blood pressure was very high, and I had cardiac problems–all of which were becoming worse as I finally had to give up the fight to keep moving. I arrived in this new location, expecting a very brief stay.

    The pain was so bad I sat in my recliner night after night, unbid tears flowing uncontrollably, begging God to give me relief or let me die. I still break out in a cold sweat thinking of those endless days and nights.

    Then my new physician sent me to a board certified pain physician. He and his team have worked with me for over a year now, and I am once again managing my own life and home, and teaching part time. I volunteer for an organization that serves the needy in my town, and for my church. I am a chronic pain advocate. I can drive, again. I use a treadmill several times a week. But I do not use opioids.

    But until pharmaceutical companies work to find danger-free medication for chronic pain sufferers, and/or until politicians stop making chronic pain a scapegoat issue and preventing pain patients and their doctors from utilizing the best pain preventatives and management available, I must speak out.

    Again and again, I must tell my story, adding it to the millions of other stories, all of which are unique to each patient. There are no cookie-cutter treatments, no easy recipes for the amount of pain medication a patient will need.

    I thank God daily for my pain management team and their leader. Without them, I would not be alive. And I most definitely do not want other people to suffer without caring, adequate pain management as I have had to do because of my own physical makeup for most of my life. Please, acknowledge us and help us.

    1. Bless u I almost know how u feel. I have osteoarthritis, fybromealgia, osteoprosis ( FX T 12) R.A. and what else? have had 1 shoulder replaced and need the other one done. have had both knees replaced 15 yrs ago, back surgery to clean out vertebras. I am not spelling very good tonight! Neurosurgeon said there was nothing more he could do. I decided then to try a Pain Management Clinic. Doing fair with what all they do. Have had 6 wks of PT and an doing better with my back. Had my neck epidural at T2-3 yesterday, some of the shoulder pain is better. Shoulder Dr told me 4 yrs ago I need this one replaced but I had the down time…3 months of doing hardly anything. I am 74! Could be worse and I am thankful everyday it isnt.

      1. Hello Linda. I’m not sure how much information your PM clinic gave you about your cervical ESI procedure BUT in case they didn’t (many do not) here is a good summary on the dangers of this procedure which is NOT approved by the FDA (or even manufacturers of the steroids used in the injections; ie: Kenalog)

        http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3642757/
        the label for the steroid Kenalog, manufactured by Bristol–Myers Squibb, was changed to indicate “epidural injection was not recommended.”

        Despite the danger of ESIs and the fact that they are not approved by the FDA, many PM clinics fail to inform their patients about the risks with this procedure.

        ESI are the “most commonly performed intervention in the management of chronic low back pain in the US” (and most lucrative)

        Can financial incentive obscure providers to the potential pitfalls of such a procedure?
        -Well respected institutions such as Beth Israel fail to even mention any, other than extremely minor complications in their summary of ESIs found here:
        http://www.bidmc.org/Centers-and-Departments/Departments/Spine-Center/Hot-Topics/Understanding-ESI.aspx and here:
        http://www.bidmc.org/Centers-and-Departments/Departments/Spine-Center/Hot-Topics/Transforaminal-ESI.aspx

        Chance of never ending excruciating pain faced by those with arachnoiditis-featured on Good Morning America:
        https://gma.yahoo.com/risks-behind-epidural-injection-140149879–abc-news-health.html

        1. Coonhound: Just to keep the records straight, I have had 3 epidural injections and will be going for my 4th tomorrow. My physician told me of all the risks each and every time. I considered them acceptable, given the pain I was in. I have had no injury from these procedures, and each one has helped tremendously, allowing me to resume a lifestyle I had almost forgotten, it had been so long. I don’t regret a single procedure, I fully trust the skill of my physician, and I am not nervous about tomorrow.
          Furthermore, I see my insurance bills. If the hospital and/or my physician is getting rich on this amount, considering the cost of the equipment and staff, God bless ‘em!
          Keep room in your campaign for those of us who need and value this procedure. They have managed to take everything else away from us – including many of the physicians who used to help.

    2. Hi Mariylee, thanks for sharing your story again. I have fibro, arthritis, migraines, degenerative disk disease. Like you, I cannot tolerate any of the usual prescribed painkillers. My surgeon did not believe me and insisted I take them anyway. I had a terrible fibro flare that lasted 5 months and the pain meds max de it even worse. My rheumatologist finally after 20 years has accepted that I cannot take the painkillers or the usually prescribed fibro drugs like Lyrica. Your story’s makes me feel legitimate. What can we do ?

  10. I was recently diagnosed with CRPS last December for the same reason a lot of others did, lack of knowledge of this condition. I am in phase 2. If people without this condition went out and got a horrible 3rd degree burn, went into a freezer and let thousands of people run their gravelly hands all over it is what I feel daily. To be given Tramadol, or to even think that it should be put on or just below the level of even regular strength Vicodin is an insult to all of us, majorly. I know that if it was you or your family member near and dear you would not want this kind of suffering to go on, knowing there was something that could help, or at least ease the pain, but it was always out of reach due to red tape and politics, you would be on here too speaking up. It would be tantamount to being sliced wide open and told to go home and take a Tylenol. Really? Stop making us look through the locked glass door at our relief without a key. Our doctors need re educating about this disease. They need to stick their hand in a bowl of ice water with a lot of ice for a minute without pulling it out early. Feel that pain and then tell us we are not allowed to have anything to help ease (as the pain will never go away) this horrible pain!! Walk a mile in our shoes (if you can even put one on) or burn your arm or any other part of your body and then put clothes on it without protection over the burn and then look us in the face and tell us we can’t have real medicine to help ease it.

  11. I have had RSD now for 13 yrs due to an awful experience with an anesthesiologist who attempted my epidural when my daughter was born. I have type 2 RSD which leaves me with pain and other repercussions from my head to my toes !!” The fact that most doctors look at me blankly when I mention RSD is probably why it took 2 yrs to diagnose me and by that time it had spread all over. The last thing that WE WHO ARE IN PAIN need is to battle insurance companies to get the help we desperately need while we are trying to just get through another day . Most days I can’t put socks on my feet let alone shoes!!”. I am a single mother of a 13 yr old girl , so in order for me to put being a Mother First before this disease, I NEED HELP !!” DOCTORS NEED TO BE RE-EDUACATED , AND INSURANCE COMPANIES NEED TO TAP INTO THEIR HUMANITY!!” ….

  12. I was diagnosed in 2 week of January with CRPS 8 years ago . I had a bunion surgery on my left great toe and was in a cast about 2 weeks . My first experience was burning and sharp pain in my foot . The pain was terrible it took 3 month for a diagnosis . 5 sympathetic nerve blocks were done no relieve .I live in Northern Michigan near Marquette , there are no Doctors here with the knowledge to help me with CPRS . We traveled 15 hours to Philly to the DREXALL University of medicine . Ketamine clinic was available there . I WAS hospitalized for 5 days of inpatient treatments . This Nerve medicine works and should not be denied in any State . Please pass a law not prohibiting Ketamine in all states this is a life saving drug for CPRS and works very well for RSD/ CPRS . God bless all that endure this pain every day all day long .

  13. After two years of pain in my back, migraines, and foot burning nuropathy. I came home after working a 12hr shift and cheering practice ( I also coached my daughter’s middle school squad) I hopped down off of the bar stool and extreme leg pain ended me up in the ER and three day stay in the hospital after four MRI’ s along with ultrasound and ct scan I came home in a walker dragging my foot behind me it would turn red hot, to purple cold. It took three neurologist and a pain management dr two physical therapist along with five medications and a cognitive behavior specialist I have four out of 8 dr ( dont forget your old pcp) telling ya it could be RSD …..? Still in a wheelchair raising four kids and waiting on a approval from my insurance to start botox that was already told to me that most likely wont help ! …..Hoping that more Dr’s will get educated and understand what type of hell we are living in.

  14. I’m going to get right to the point. PAIN AND OPIOIDS. They do help us. Yes, they’re in every group abusers and non-abusers. Those that it helps for medical necessity should not have to be punished, denied, ect. for those who choose to disregard the contract they signed. I am one voice speaking for many, many others.
    Problems:
    Medical professionals profile and are afraid to prescribe.
    CDC there are alternatives, to wean out drug abusers.
    Utilize the resources you have vs taking the easy way and punishing all.

  15. I was diagnosed in April 2013 but was not told this then or ever. In April 2015 I got a copy of all my VA medical records and discovered I have CRPS.

    I have watched and looked at Dr Padreep Chopra (RSDS.org) information on no narcotics when one has CRPS, as it has been proven to “mess with ones Glial cell.” I should be taking, per Dr Chopra & RSDSA an NMDA Receptor drug, and yet the Black HiIlls Health Care System (BHHCS) has refused to properly tapering me off narcotics to take an NMDA Receptor drug.

    The “Pain Dr for BHHCS” claims I have refused to work with him. Which is not the case.. He makes me feel that it is all in my head. Also makes me feel Belittled, Degraded. That I don’t know my own body pains. I have had setback after setback. He talks over me, not wanting to hear what I have to say. I currently went to see the Pain Dr. at Fort Meade. My wife had done some research on RSD / CRPS and was asking for me to come off the Codine that I am currently on.. Instead to have me put on an NMDA Receptor drug called Methadone. We were told that is not as good and an Opioid as well.. Also wanted LDN- Low Dose Naltrexone to go along with the Methadone. But was told no on that as well… We are requesting for a 2nd opinion with the option of being treated by Dr. Alan R Brewer in North Platte, NE and was told we can go see him but Pain Dr. was not going to refer me there.. The Dr. wants us (me and my wife) to go thru education classes to help clear up the communication.. He also sat there and lied to both of us.. Two years ago he looked up that I went to the Naval Hospital in Bremerton Washington, cause he was wondering on other meds that I have been on in the past.. At that time he seen that I was on Gabapentin and didn’t reach the max dose on that med. So he put me back on it and I then remember why I stopped taking it.. I was mean and suicidal, and homicidal. My wife seen what was happening to me and said that I wasn’t going to be taking it anymore… Went back to see Dr. Peterson and told him what happened. Next thing we know there hasn’t been a follow up appointment until just recently. Which has been 2 years.. The only reason I have gone back to him is cause I need treatment for my RSD / CRPS.. Currently, I have had no PCP as Dr. Templeton has retired at Fort Meade VAMC for about 3 weeks.. Found out that there is a new PCP that started on Monday April 20, 2015.. But they are book up for at least a week or more..

    For me this is made worse by having been stationed for 4 years at Camp Lejeune which now validates many of my illnesses while stationed there from the contaminating water supply.

    Still waiting for proper care from this Pain Clinic Doctor.. Also has told us that he didn’t diagnose the RSD even though it says so on the VA Problems List..

    This is something that me and my hubby wrote up to send off to some people to make them aware of what is going on if this facility.. We shouldn’t have to fight to get proper care let for our veterans..

  16. I have dealt with chronic pain since 1996. I have developed methods of dealing with this pain, but I am not getting better! My Gastroparesis, neuropathy, migraines, and constant pain is worse while I suffer the effects of those who abuse drugs. I hear my doctors say we know you are in pain, but our hands are tied. I pay for my migraine meds. Because insurance does not allow for the migraines I have a month! And now we are looking at further restrictions? I understand the need to limit those who DO NOT- need medications but that has always been there.. It is in the doctor patient relationship and if we cannot trust our doctors? Deal with that! Don’t harm the patient or all of the good doctors who work themselves tirelessly on the behalf of their patients!
    Thank you for the opportunity to share my thoughts!

  17. I broke my left foot while working last year. When the bone healed but the pain didnt stop i was worried. Everybody kept telling me it was nothing but it kept getting worse. I of course asked for any type of pain medication to try since Inwas desperately trying to be successful in transition ing back to work, who could blame me? Im 26 yrs old with no safety net, i dont work im on the streets. I was orginally diagnosed with CRPS, inhad 8 nerve blocks, anti convulsant meds, aqua therapy, and i was told that despite my pain i needed to push through it every day. I did everything, i would go 5 nights in a row in agony and no sleep. I was suffering at work and almost getting into car accidents due to insomnia. I asked if I could just have something to take at night so I could be safe during the day, I was told a flat no and then looked at like a drug abuser. When the blocks and constant exercise werent getting the reaponse on top of that, inwas told there was nothing more they could do or prescribe for me. I fought for a 2nd expert opinion, turns out I have a badly damaged nerve in my foot from my original injury that was made worse by the constant activity and no resting that was prescribed. If my pain was just taken seriously and not dismisse me as a malingerer by the docs right after the bone healed I wouldnt be looking at having the nerve surgically removed. Chronic pain has destroyed my life and career Inworked so hard to build, Ive had to alsobput off completeing my masters. I did everything by the book and suffered on raw pain that would have benefited from better mmanagement. Since my quality has become so poor why cant i try pain medicine to see if it helps and helps me function? I have never abused drugs, understand the risks with opiods, and if it was becoming ineffwctive to listen to my doc about tapering down. Im a patient whos life has been taken and has been expected to fight for it on no sleep, excruciating pain that has jacked my heart rate to the point of the ER, and did everything that was conservative by the book, if that fails why cant I try opiods? Why is it bad Inwant to sleep so I can continue to work and not kill anyone during my commute? Even with my nerve being removed I could still have chronic pain for life because of the damage of it being dismissed, im looking at continued anticonvulsant meds and a spinal cord stimulator, which will make it very difficult for me to have children. If the patient is capable of understanding the risks and the quality of life is to ve improved, let them try pain meds. I have thought about buying illeagel narcotics but i didnt have the money. It also made me think how messed this was, i have legitimate pain that is destroying my life and im being reduced to buying on the black market like a criminal. People are going to try to find releif anywhere they can when they arw backed in to a wall, wouldnt that be better to come from a dr? Compared to the current state would it be so bad to open honest dialogues with patients, the dr has more control over the mmeds and where they come from, and also can make recommendations of when to taper? Treat me like a patient, im not a criminal or a drug addict. I desearve to live my life in dignity and the ability to control my pain.

  18. I have Gastroparesis, Factor 5 Leiden mutation, Hashimoto Hypothyroidism, Osteoporosis/Osteopina, Osteoarthritis, vitamin D deficiency and neuropathy. I have had 7 abdominal surgeries, 2 hernia repairs, 19 blood clots and 2 pulmonary embolisms. In 2010 I took a step and broke my leg a tibial plateau fracture,my right leg. 6 months later I had an artificial knee surgery on my left leg. 2 months later I had a complete quad rupture on left leg. On Sept. 16 2012 at 3 am I got up to go to the restroom and when I was going back to bed I shattered my left femur. I have an internal fixated. With all this I feel pain from my head to my toes. I have never abused drugs or alcohol. But I need pain control to function. I am 54 and want to live a quality life. With out pain control I can’t do anything. I understand that a lot of people abuse pain meds. But for those of us who need pain control and are under a good Dr. Should not be punished. So please help us have a quality life.

  19. I was diagnosed with RSD in 2002 after I broke my leg in combat. I saw a doctor in Illinois that did 90 lumbar injections over 180 days and my RSD when into remission. In 2013 I suffered another combat injury to the same leg and developed CRPS again. Since then I have tried every medicine (lyrica, nuerontin, prednisone, etc) as well as all kinds of therapies (scs, lumbar injections, hydro shock, acupuncture, mirror therapy, etc) with no relief. I get some relief with oxycontin but I made o feel like a junkie when I have to beg for meds. The pain is like nothing I could ever imagine. I fantasize about the docs cutting the leg off. None of them will. I wish my GOD would take me. I am a burden on my family and my poor wife. No on should ever have to suffer like this. Maybe tomorrow I won’t wake up.

    1. Sweet Ray,
      I know your guilt, I know your pain, (except
      for combat) and how you want your leg cut off.
      I also am an RSD sufferer but I can’t have any
      Injections to try and help, all I have is pain meds.
      I know what it feels like to ask a doctor for pain meds
      And they treat you like a junkie. You should go to
      A different doctor until you find the one you like.
      I know it’s a pain to do that but it’s worth it when
      You find the right one. Also, if your not seeing a
      Pain Management Specialist instead of a pain
      Management doctor you need to do so.
      I feel all the things you feel and there are tons more
      Of us out there. My primary doctor suggested I see
      A psychologist and I’m seriously thinking about doing
      That. I’m not thrilled about it but what can it hurt?
      I feel that I’m a burden for my husband and family
      Everyday. You know my husband told me one day
      That we took vows and in those vows one of them
      Was “for sickness and in health”. That made me feel
      A little bit better. Also try to put yourself in their shoes.
      If it was your wife in the same position your in wouldn’t
      You do everything you could to help her and get what
      She needs and still love her the same? I’m truly sorry
      For what you are going through but you’re not alone.
      Try and go online and find some support groups. I’m
      On one called Nuero talk. They talk or tell their stories
      And give advice and even share the things that make
      Them more comfortable and things they’ve tried that
      Might help you, like one person said that she got a bamboo blanket and it helps because it is light and
      Isn’t heavy on her skin. One person said to use those
      Socks diabetics use because they’re soft and doesn’t
      Bother their foot as bad. Just check it out maybe there’ll
      Be some things that might help you, and think about the
      Psychologist too.
      I hope this helps you, and Thank you for service for me
      And our country!
      Hope you may find some peace!

      Kelly

  20. Developed tumors in my foot and within a month the pain became so bad I had to stop working. I was doing 60-70 hours a week on my feet! My right foot started to hurt soon after but they couldn’t find a cause. Nobody mentioned CRPS until three years later, and I fear it’s too late to reverse the damage.

    During the following year of conservative tumor treatment, it became harder to walk and the tumors continued to press on my medial plantar nerve. The tumors suddenly started growing rapidly so my doc did surgery to remove them. 5 days later he checked the bandages and my foot was going black.

    Turns out on top of all this, I contracted a post-op staph infection. 8 months of wound care, further surgeries to remove more of my foot, skin graphs etc and it healed. The pain worsened. To get pain killers I underwent psychiatric evals, and pain mgmt would never give me anything strong enough.

    My pain is so brutal that I am unable to work and cannot care for myself. I moved back in with my parents as I am young and cannot even do basic tasks. It has been hell trying to get proper pain meds just to get through the day. I go out of my mind the nerve pain is so bad. I have tried everything else, seeing some of the best doctors in the country. I do everything they ask me to, yet doctors either will not prescribe enough for breakthrough or even tell me that as a clinic they don’t want to even prescribe narcotics to anyone. As many of my doctors have moved on, I am left every so often with uncertainty. All I ask for is the meds I need so I don’t go out of my mind. It should not be so difficult for someone in pain, no history of drug abuse, with a well-documented medical history and a clear presentation of severe nerve damage.

    Until one of the other procedures, treatments of other meds actually abates my pain, dilaudid and morphine are the only things that settle it down to a somewhat bearable level. And even then it’s still not strong enough that I can work or even do basic things like a short errand more than once a week without needing days to recover from the pain-related exhaustion.

    Doctors may see me as a burden they don’t want to deal with, but how about your entire existence being a burden on your family? I am alive, but not living. I have a right to adequate pain management.

  21. As I text this, my wrist is a lot of pain. I was dx in 2006. This Dr. gave me just about any pill I wanted that I felt worked. Turned out he was a quack. So I was not sure if my diagnosis was correct. Fast forward to 2014, I moved to Kansas. I have been without pain medication and a diagnosis. One doctor told me he didn’t see anything wrong with me and treated me extremely rude. I was never so humiliated by someone who was supposed to be a professional. I decided that the third time was a charm, never to return. I began to see another doctor. This Doctor knows of RSD/CPRS but not about it. I am seeing a neurologist every 6 months. She prescribed gabapentin and topamax for me. Gabapentin made my stomach bloat and I gained 43lbs, not to mention did help with pain too much. Topamax really helped with the sweating but caused sulphur burps. 5 months later I am back on Topamax but it is not helping my head and neck aches. I am not taking any pain medication because she does not believe in them. I went to see this Neurologist on April 9th, 2015 and she said she would refer me to a pain specialist and order a cream be made for me. After waiting three weeks, I hadn’t heard from the pain specialist to set up an appointment. So I called my neurologist on May 9 , 2015, to see what the hold up was. The office told me that the Doctor hadn’t done her dictation and wasn’t sure when that would be completed. Now I suppose in the mean time I suffer, lie here in bed, ignore my boyfriend needs to eat, my responsibilities to keep house, laundry, kitchen, vacuuming done? What about shopping? I’m weak, stiff, skin is extremely sensitive and have to try and bathe myself, wash my hair….i just truly want My God to take me home, I’m so ready. I believe my mind is another thing I’m losing. One more thing, I get short of breath, I don’t have a oxygen machine out here. I use to have a caregiver back home? Not here. I’m lost. I sure wish we could all get together to walk up to CMS doorstep or MEET AND MARCH FOR OURSELVES AND OUR FAMILIES!

  22. I have many diseases. Relapsing/Remitting Multiple Sclerosis, Fibromyalgia, Endometriosis, Chronic Kidney Stones, IBS, and several others. Most of these cause me to be in severe pain very frequently. I do not take more medication than I need, the lowest dose spread out as long as I can stand it, but the only thing that even touches my pain is hydrocodone/acetaminophen drugs. (Vicodin, lortab, norco, etc.) that, and Demorol (sp?) are the only narcotics I can even take for pain that I am not allergic to, due to a severe chemical sensitivity (My doctors think that is possibly from the Fibro, but no one knows for certain.) Even that doesn’t take the pain away, just makes it bearable so that I can function. I am allergic to Percocet, Dilaudid, OxyContin, etc. I am also allergic to every medication on the market for my active and rapidly progressing MS. All I can do is treat symptoms until I have relapse bad enough to require Solumedrol and Prednisone. Cannabis oil just became legal here in GA, but there is none to be had. You can’t buy it anywhere in the state and if you buy and have it shipped from another state you could be prosecuted. Whenever I try to get opiates, I am treated like a junkie, though I have not asked for a larger quantity or to up my dosage in all of my time on them (on and off since age 14, I am 35 now, if i used them daily or was hooked, I think I’d know by now.). The FDA needs to quit the witch hunt, legalize marijuana, which NO ONE has ever died from and give people with chronic pain a solid option. There are a lot of us who have incurable very painful diseases that should not be forced into a “pain contract” to get some relief. The CDC should already know the truth of this. If pill heads want to get pills, they will, no matter what the little flier at the pharmacy says. All the medical profession is doing with this knee jerk reaction to opiates is punishing those who truly need them.

  23. Have been dealing with pain for almost 30 years. Have been dealing with my local VA but don’t seem to get any where with them some days. Just noticed in April I was diagnosed with RSD 2 years ago. But talked to the doctor that diagnosed me with it and he said he didn’t do that. Seems like I am always fighting something. I was stationed at Camp Lejeune N. C. for 4 years. But every doctor I see finds something new and different wrong with me. Have tried every med that they have offered me. If every doctor looks at the chemicals that where in the water and see the side effect and maybe match up what is going on in some peoples body’s.

  24. I was involved in an accident in 2010 on my honeymoon. A broken leg in 3 places with severe nerve damage caused RSD. I had never heard of this debilitating condition until then. Still there is so much not known on how to treat this. I am in so much pain everyday that some days it want to go to sleep and not wake up. The medications that I am taking cause weight gain, along with the limited mobility and I have gained 70 lbs to date. I feel embarrassed because I need pain medicine to function and there is so much abuse in my area that the drs feel like everyone is an addict faking pain to get pills! They make it so hard on those of us who need it to live somewhat of a normal life. Hello…I don’t want to take medication.. I want to feel normal again! It just causes so many other problems like I have to take large doses of Vitamin D because I don’t get enough sunshine. I can’t sleep most nights and I am so depressed. The condition is spreading into my hands so much so that I can barely hold anything without dropping it. I want to feel good for one day.

  25. My husband has had very mild symptoms of RSD from a broken hand in 93 which changed drastically in 2003. I have watched him overmedicated from Dr’s who just would continue to up his dose to getting treated like a drug addict when changing Dr’s. He has received little respect from many Dr’s. His health has deteriorated drastically in the past 3 years. He has aged beyond his years and I believe the disease is attacking his organs, developing Chronic Pancreatitous. His whole body hurts inside and out. Digesting food and having a bowl movement makes him so ill, many times he throws up. No Dr will listen. One Dr, who thought his pancreatic attack before his Pancreatitous diagnosis was Vicodin withdrawals, told us “if this was such an easy fix you wouldn’t have seen so many God damn Dr.s” as we were sitting in his office both in tears because we knew there was something terribly wrong. I even told the Dr I felt like I was watching my husband die and I thought he should be in a hospital. The Dr made him wait a week until his gastrointestinal Dr did the endoscopy. My husband could have died. I’ve caught Dr’s snickering behind my back and rolling their eyes while I watch my husband spend 60% of his time sleeping, when he’s not sleeping he’s in severe pain and 100% of his time in bed unless at a Dr. The sad thing is prolonged opioid use causes muscles to constrict which also causes more pain, yet there is nothing else to do for his pain. Other countries are so much further in research and that is the real problem. WE NEED A CURE! I’ve even tried to find research places to put him in so it can be observed just how bad it can get but nobody wants to research this late stage that I have found. So many times I am bought to tears as I discuss my fears with the pain Dr and how I feel it is killing him and Dr’s just look at me and say nothing. She says that’s because they don’t know enough. She has told me he is the worse case she has ever seen.

    1. Hi Cindy, I’m so sorry your husband is suffering the way he is…there is a video of a Dr. Getson from Marlton NJ who discusses how RSD effects you in all different ways and internally…it was eye opening for me since so much of what was going wrong with me I.e. nausea, vomiting, going to the bathroom and digestion were being caused by the RED as well as pain and tons of other stuff. He also discusses extreme cases as well. Maybe he can be of help or his office may be able to recommend someone in the area…anything is worth a shot. And the more you understand it the better you can treat it yourselves at home as well with the help of a Dr. For instance, stress and anxiety will.drive some of my symptoms through the roof, including the digestive/nausea/vomitting issues and pain.

      I hope this helps even if just a little.

  26. DRAFT BILL
    THE COMPLEX REGIONAL PAIN SYNDROME (CRPS) EDUCATION AND RESEARCH PROGRAM ACT
    STATE OF TEXAS

    Introduced by:
    HOUSTON TEXAS RSD/CRPS SUPPORT GROUP
    Amy Vallejo
    STATE OF TEXAS
    Complex Regional Pain Syndrome Education and Research Program Act
    Designate the “Complex Regional Pain Syndrome Education and Research Program Act.”
    THIS ACT will establish complex regional pain syndrome education and research programs
    BE IT ENACTED by the Senate and General Assembly of the State of TEXAS.
    1. This act shall be known and may be cited as the “Complex Regional Pain Syndrome Education and Research Program Act.”

    2. As used in this act:
    “Commissioner” means the Commissioner of Health and Senior Services; and
    “Complex regional pain syndrome” or “CRPS” denotes a debilitating and progressively chronic syndrome characterized by severe burning pain, stabbing, throbbing, pathological changes in bone and skin, excessive sweating, tissue swelling, skin color and skin texture changes, muscle spasms, decreased mobility, extreme sensitivity to touch and cold and emotional disturbances.

    3. The Legislature finds and declares that:
    a. Complex regional pain syndrome (CRPS), also known as reflex sympathetic dystrophy syndrome, is a debilitating and progressively chronic syndrome characterized by severe burning pain, stabbing, throbbing, pathological changes in bone and skin, excessive sweating, tissue swelling, skin color change, skin texture change, muscle spasms, decreased mobility, extreme sensitivity to touch and cold, and emotional disturbances which occurs in 5% of all nerve injuries;
    b. More specifically, CRPS is thought to be a neuropathic pain syndrome that generally occurs at the site of a minor or major trauma injury, but may also occur without an apparent injury to the affected person;
    c. While the cause of CRPS is unknown, the syndrome is thought to be the result of damaged nerves of the sympathetic nervous system;
    d. The syndrome is unique in that it simultaneously affects the nerves, skin, muscles, blood vessels and bones, and if untreated, can result in permanent disability and chronic pain;
    e. CRPS is often misdiagnosed because this syndrome is either unknown or is poorly understood. The prognosis for patients suffering from CRPS is generally much better when identified and treated as early as possible;
    f. If treatment is delayed, CRPS can quickly spread to the entire limb, and changes in bone and muscle may become irreversible, resulting in limited mobility, atrophy of the muscles and eventual permanent disability of patients; and
    g. Since a delay in diagnosis or treatment for this syndrome can result in severe physical and physiological problems, and early recognition and prompt treatment of CRPS provides the greatest opportunity for recovery, it is in the best interest of the public to establish a program to educate both individuals and medical professionals regarding this debilitating condition and to promote research to accurately identify, diagnose and treat CRPS.
    4. The commissioner shall establish a CRPS education and research program in the Department of Health and Senior Services. The purpose of the program is to promote public awareness of the causes of CRPS, the value of early detection and the diagnosis of and possible treatments for CRPS, and to promote research, through public and private sources, to accurately identify, diagnose, and treat CRPS.
    The Department of Health and Senior Services shall:
    a. establish a public education program through the department’s website, to promote CRPS education, which will enable individuals to make informed decisions about their health, including, but not limited to the following elements:
    (1) the cause and nature of CRPS; (2) the risk factors that contribute to the manifestation of CRPS; (3) available treatment options, including risks and benefits of those options; (4) environmental safety and injury prevention; (5) rest and use of appropriate body mechanics; (6) the availability of CRPS diagnostic, treatment, and outreach services in the community; and (7) any other factors or elements that might mitigate the effects of CRPS;
    b. notify local health departments, hospitals, clinics and other healthcare providers about the availability of information concerning CRPS on the department’s website;
    c. within the limits of funds available to the department for this purpose, coordinate, promote, and offer professional education programs, through institutions of higher education, for healthcare providers and health-related community-based organizations, which may include, but are not limited to the following element
    (1) research findings; (2) the cause and nature of CRPS; (3) the risk factors, including, but not limited to, lifestyle, heredity and drug interactions; (4) diagnostic procedures and appropriate indications for their use; (5) medical and surgical treatment options, including experimental and established drug therapies, and the risks and benefits of each option; (6) environmental safety and injury prevention; and (7) the availability of CRPS diagnosis and treatment and support services in the community; and
    d. promote research, through both private and public funding sources, to accurately identify, diagnose, and treat CRPS.

    5. The commissioner may accept and expend any grants, awards, and other funds or appropriations as may be made available for the purposes of this act.

    6. This act shall take effect on the _____ day after enactment.
    STATEMENT
    This bill establishes a complex regional pain syndrome (CRPS) education and research program in the Department of Health and Senior Services. The purpose of the program is to promote public awareness of the causes of CRPS, the value of early detection and diagnosis, possible treatments for the syndrome, and to promote research through public and private sources, to accurately identify, diagnose and treat this syndrome.
    Under the provisions of the bill, the department would:
    1. establish a public education program, through the department’s website, to promote CRPS education, which will enable individuals to make informed decisions about their health, including, but not limited to the following:
    a. elements: the cause and nature of CRPS;
    b. the risk factors that contribute to the manifestation of CRPS;
    c. available treatment options, including risks and benefits of those options;
    d. environmental safety and injury prevention;
    e. rest and use of appropriate body mechanics;
    f. the availability of CRPS diagnostic, treatment, and outreach services in the community; and
    g. any other factors or elements that might mitigate the effects of CRPS.

    2. notify local health departments, hospitals, clinics and other healthcare providers about the availability of information concerning CRPS on the department’s website;
    3. within the limits of funds available to the department for this purpose, coordinate, promote, and offer professional education programs through institutions of higher education, for healthcare providers and health-related community-based organizations, which may include, but are not limited to the following elements:
    a. research findings;
    b. the cause and nature of CRPS;
    c. the risk factors, including, but not limited to, lifestyle, heredity, and drug interactions;
    d. the diagnostic procedures and appropriate indications for their use;
    e. medical and surgical treatment options, including experimental and established drug therapies and the risks and benefits of each option;
    f. environmental safety and injury prevention;
    g. and the availability of CRPS diagnosis and treatment and support services in the community; and
    4. promote research, through both private and public funding sources, to accurately identify, diagnose, and treat CRPS.

    5. designate the Month of November as “Complex Regional Pain Syndrome Awareness Month”

    Lastly, the bill provides that the Commissioner of Health and Senior Services may accept and expend any grants, awards or other funds or appropriations as may be made available for the bill’s purposes.
    References:
    National Institute of Neurological Disorders and Stroke http://www.ninds.nih.gov/disorders/reflex_sympathetic_dystrophy/detail_reflex_sympathetic_dystrophy.htm RSDSA http://rsds.inappsol.com/telltale-signs-and-symptoms-of-crpsrsd/
    American RSD HOPE http://www.rsdhope.org/crps-symptoms.html
    MAYO CLINIC http://www.mayoclinic.org/diseases-conditions/complex-regional-pain-syndrome/basics/symptoms/con-20022844

    1. #Anotherrxproblem…..I had a hysterectomy in 2008,using a davinci procedure. I was the doctors 20th patient yet he assured me that I would be out of the hospital within 2 days and back to work in 2 weeks. I spent 5 days in the hospital in excruciating pain, did not return to work for 6 months. Had a laparoscopy in 2010 to remove massive amounts of scar tissue. Still in pain in my right quadrant, went to pain management for injections and meds. Injections hurt more than they helped, neurontin messed with my memory so bad, I couldn’t remember how to get home one day. Was told it was nerve damage from 2008 surgery. 2013 they found my colon was attached to other organs via a fistula. Had immediate surgery, removed over a foot of colon and 3/4 of my rectum. Couldn’t leave the house for over a year, uncontrolled bowel movements, denied disability and still in excruciating pain. Doc says I will be on pain meds for the rest of my life. They are the only thing that allows me to maintain a semi normal life. I will end up dead if I cannot take my meds because I cannot live with the pain. I have tried physical therapy, acupuncture, water therapy, massage, heat,ice…..nothing helps. I have tried to commit suicide 3 times due to pain. DEA needs to get both sides before making any decision.

  27. I’ve had 2 ruptured disks at L4/5 and L5/S1, with surgery for each, 1996 & 2000. I have RSD/CRPS, DDD, spinal stenosis, facet joint problems, bone spurs, osteo arthritis. periformis syndrome, fibromylagia, herniated disks. I’ve been tested every 2 years or so for lupus and RA wuth “inconclusive” results.

    The arthritis has destroyed joints in my hands, feet and neck requiring numerous surgeries with fusions @ C4/5 in my neck and also in my feet, thumb joint replacements, total of 7 hand surgeries since 2006, 3 foot surgeries since 2012, one knee surgery, and was officially diagnosed with RSD/CRPS three years ago, though we now know it first appeared in 2008 after a thumb joint replacement. My hand surgeon wasn’t aware of RSD/CRPS and assumed my joint replacement had collapsed and completely redid the surgery. My hands are so weak and painful I can’t lift anything heavier than a few lbs. If the pharmacy makes a mistake and puts a childproof cap on my meds, I have to break it off since I can’t open it. I can only wear athletic shoes because my feet are too weak or painful to wear others, and usually I don’t wear any unless I have to go out.

    At this point I’m seeing a great rehab doctor who is currently controlling my pain. I use a TENS unit, have had numerous trials of PT, sympathetic nerve blocks, epidurals, facet joint injections, regular trigger point injections and/or prolotherapy injections. I have to have fluid drawn off my knee every few months and cortisone inhections.

    I am willingly tested 4X/yearly for medication compliance. I try everything my doctor suggests. He is not a specialist in RSD/CRPS, I don’t know where to find one where I live. I get a compounded cream with Ketamine in it but it’s not covered by my insurance so it costs me nearly $300 to fill it.. It only helps tempirarily. I now have RSD/CRPS in both hands and feet and just treat my flares with that and the meds I’m already prescribed. I cannot count the days I’m too tired or in too much pain to function as the person I once was. I had to stop working in 2008 after working for the same company for 30 years. I’ve worked since I was 19; having to go on disability was one of the lowest points in my life. I will be 60 in a few months.

    My fear is that my doctor will be retiring soon and I have no idea how I’ll get treated for my pain. The attitude towards people like me who actually do NEED these medications to function, to have any quality of life, to attempt to be a part of “normal life and activities” for enjoyment is atrocious.

    People don’t realize I didn’t ASK for any of this to happen to me, some of it is genetic and my daughter began with symptoms in her teens. People don’t realize it is EMBARRASSING to constantly have to go to Doctors’ appointments for these problems, to constantly be searching for answers. People don’t realize how it feels to pretend you’re feeling better than you are just so you won’t be called a hypochondriac or worse. My circle of friends has shrunk because I can’t do the things they can do. People don’t realize how humiliating it is to go to the pharmacy several times monthly for medications. Many times they’re out of a given drug and I have to ask them to call other pharmacies for me because walking into a new pharmacy with a prescription for a controlled drug automatically causes suspicion, which just further humiliates me.

    And the government/insurance companies/pharmacies/doctors want to take away what little treatment we are allowed???? My wish is that they all could live MY life for one day; even better, one WEEK and then tell me I don’t need to be treated.

  28. I’ve had RSD for 21 years. Unfortunately, I also have a TBI making my life a living hell. I have been taking OxyContin for years now. I want so bad to get off of it and get natural relief. One place I wanted to go to doesn’t take insurance, no surprise. The cost, $27k. I’m waiting for the tree to bud in my backyard! My family and friends don’t get it even after all of these years!!! I’ve wanted to leave this earth since I lost my Shih Tzu, Foofie, in 2013. He was my only comfort. Are there new treatments that can help me?????

    1. I watch my husband everyday either in extreme pain or extremely medicated. The only other treatment I’ve heard positive things about is Ketamine. Maybe you can find a Dr in your insurance. Unfortunately we can’t.

  29. I was very healthy and active until an injury in 2003 which ended with 2 surgeries to my right knee causing irreversible nerve damage. I fought through with out the help of continual pain management for 5 years until CRPS /RSD spread through 3/4 of my body. I have broken 6 bones to date on the right foot, ankle and right leg due to damage caused from RSD/ CRPS. To the outsider, I am a clutz, accident prone, don’t know how to walk. I wake up each morning to a surge of searing, burning pain rushing over me, can’t open my eyes, focus a thought find the souce of the burning; it just “is” anywhere that a sheet is touching, too much pressure on my 9 inches of memory foam or a breeze. If I lay in a position too long at night I bruise, swell, feel like I can’t open my hand, my toes, remember my name, the date or day…I take my pain meds and wait…Each step I take when I get up to get ready for work, feels like each bones are breaking…all over again. Muscles tremor, Strain, and twist my toes to the Point that my foot turns purple and bruises. No make up for another 40 minutes due to my blurry eyesight and tremors in my hands. I use hand controls to drive, an armcrutch to help me walk and in order to keep my job and insurance, I never, ever complain or take off work!! I not only take pain medication throughout the day I have to count my steps, never stand longer than 15 minutes and be home by 6 to take my evening meds. . Nerve numbing medications and muscle relaxers designed to help where the rest can’t. Along with a topical compound creme made up of 4 different potent medications that just allow me me to put clothes on my legs, back and Shoulder and arm. I can’t do physical therapy, exercise, and very little helps including the 5 pain pills I take a day. But I remember life before my pain Dr. I worry about how to act, what to say, and am always scared that she will stop her practice. My one consolation in all of this? I know I am not alone and that of ALL the disabling conditions out there…RSD/CRPS should be. Getting more support, better health care, better understanding and better treatment. I work, have insurance, still put on a good show for the world but I may not be able to do it much longer. We are not the problem, we are the exception.

  30. I have had CRPS also known as RSD for 19 years now. Mine started in May 1996 in my left wrist and hand after a minor injury during a very traumatic car accident. my CRPS spread over the years until 2005 when it had spread to include my entire body, so I have been full body CRPS since then. I also have some internal involvement.
    My CRPS affects my immune system, so I get sick very easily, and when I do, it takes much longer for me to get better. I have been hospitalized for cellulitis so severe that I had to be in isolation for 28 days.
    When I go to a hospital, I never know if I am going to encounter doctors and nurses who have even ever heard of CRPS, let alone know how to deal with someone who has it.
    If I need to have an IV inserted, I try to explain the need for using the smaller needles due to the problems with my veins, but often my words are ignored, because they are the professionals, I am only the patient.

  31. Why bother, no one listens
    The government needs to have a family member who they love or they themselves suffer RSD/CRPS.or any member of the health field.
    Then tell me We don’t need help with pain.
    My story is too extensive to trouble myself with writing. Need more info, contact me at the above information

    1. Agree. All need a week in our..RSD/CRPS shoes. A BAD FLARE UP TIME, but they probably couldn’t handle our regular days.

    2. Exactly! Sick of going to Dr and they have NEVER heard of it. Do your family a favor, get you final arrangements in order. The first clinical trial just started, I was diagnosed 12 years ago but never treated for it, hurt at work so WA State turned a blind eye.
      Now I wonder how long do I really have before I’m just one less spreadsheet for the state to deal with, I never got to play with my a grandkids.
      I wake in pain, lucky if I sleep because of pain. Was a healthy 125 to 135lb woman now I lose weight no matter how much I eat! 88lbs I look like I’m 80.
      I wish a house would fall on me, because I’m sad Witch when I’m in pain.
      My husband should run away, why he hasnt?

      CDC why don’t you look at what each state is doing, because WA State is way behind in treatments if you can get them to listen to any specialists, bottom line it’s all about $$$ not people, family’s or lives.
      Greed and money isn’t that it?

  32. I am being under treated for my RSD/CRPS. I have it body wide with constant pain levels of a 9-10 and yet the pain doctor is afraid to write for more than one pill as needed. But a max of 30 pills per month. So that leaves me with one pill per day. It just doesn’t cut my pain anymore. I am suffering and he just doesn’t get it.

    I cannot seem to express to him how much pain I am in. I have tried but he’s just not getting it. I understand they are cracking down on Pain Management doctors for writing for pain medication but if you need it, you need it. I don’t want to have to take this medicine. I need to take this medicine to function.

  33. I was injured in 2001 with a wrong diagnosis so had a,surgery that caused CRPS in both arms. In 2003 i had surgeries for bilateral thoracic outlet syndrome with 1 full and 1 partial sympathectomies to cut pain level. They were somewhat successful but now pain is back with a pinched nerve in my neck and my right elbow needing the nreve repositioned which is impossible with CRPS.i tske narcotics and my ex husband accused me of abusing them and distribution.i have finally got these accusations dismissed but i am scared to take percoet even when i need it…

  34. I have had RSD for 9 years. At first it was a choice for no pain meds, then it became a necessity. I got established with a pain provider in my home state closer to my parents so when treatments happened, someone could help me out with me and my animals. 9 years after joining the pain provider, i him becoming more and more sarcastic and just handing me prescriptions as a fix instead of finding the issue. After putting my foot down after being put into narcotic withdrawl, I was discharged because they stated I was rude and disrespectful. They did not care about my feelings, that it drove 2 plus hours to see them and when you shove me off to a provider I don’t know then expect me to trust them, that’s just wrong. Not to even say that he wasn’t going to see me after I was told I was seeing him. I then have transferred to a new facility who has now lied to my insurance company because the practioner does not want me on that medicine because she doesn’t like it. Excuse me but I need to function for working and living, I can’t give up my job just because you don’t like the medication I am persscribed. I now am fighting against a doctor who doesn’t want to give me the needed medication and pain that is raging in my legs and my back. Spasms that are constant and when my spinal stim doesn’t do a lot, the pain is uncontrolled. I wish the CDC would tell I physicians and insurance companies that they need to give the patients appropriate treatment, including medication WITHIN moderation. I am not asking to change my fentanyl daily, but my body burns through every 48 hours. So I suffer on my third day and am givin an inadequate amount of dilaudid to deal with the massive breakthrough pain. I am just ready to end it because I feel that every time I say something they see at as drug seeking, which I am not doing. I just want to teach my students and have a life, which is basically non existent now.

  35. I too have suffered, and endured with RSD and other painful, energy robbing, soul crushing, intratiable pain for 15 years now. I have lost friends, family and my self worth…,I was a vibrant healthcare worker which was my life, please ,please show that people who need pain meds., for quality of life DO NOT ALWAYS BECOME ADDICTS!!!!! I don’t get that euphoria feeling any more! I get nauseated, weak, and dragging…,We fight suicide daily!!! We fight doctors, nurses, and even now the pharmacy that tell us they are out of certain code medication!!!! Please hear me, pain meds are the last thing I grab, and just because it says to take this many, I don’t until I can’t stand it any more…..oh yeah sleep can be a real problem!!!! The type of nerve damage is so different…. I have times when I can’t stand to be touched, or even wear clothes over the area, the limb fells like a second degree burn that never heals!!! The limb is cold to the touch….. I also have degennative disc disease….. I have thought dear Lord, I’m going to suffer for the rest of my days,,, do I really want to do this?!? There is no Cure!!!, The treatment is trial an error, and those medicines make you sick too!!!! I found that my care, and well being is decided upon by officials who are seeing people who abuse pain meds.. and they even want to give them Narcan, when they overdose!!! The media is horrible the way they report and offer their opinions,,,,,, please talk to the patients,!!!! GOD HELP US !!!!! Lastly PAIN is a Disease!!!! Thank you..

    1. I hope they hear us. Mine was work related and they treat us so bad.
      My husband says our vets treat animals better.
      Everyday struggle and without pain meds it’s worse. We are not drug addicts just want to be pain free, (quality of life addicts).

  36. i have multiple pain conditions and this new dr whom I’ve never met decides that he wants his CRPS/RSD patients off narcotics by summer without offering any alternative CRPS treatment. I explained that I don’t just have CRPS and Fibro ( even though that should be enough) I’ve been on basically the same dose since 2012 suffering every minute of every day due to ignorance of my conditions!! Ketamine was requested and the dr threatened me that if I do ketamine therapy that I need to take my business elsewhere. These doctors control our lives!!
    I have AS, Fibro, Neuralgia, occipital neuralgia, Crps, chronic migraines and cluster headaches, neck pain, tear at L5,4.3 and degenerative discs and facet disease, TMJ, joint pain, costochrondrotis and the dr wants me off all narcotic meds by summer?? Wtf????

    1. I am a lot like you! I have everything you do except for 1 and the doc has taken me off Pain Meds. but they are trying to say we will try other alternatives, which I have already done on my own. They are going to cause more ppl to be suisidal, I know.

    2. Ketamine infused coma for 5 days, then a synthetic NDM which is like your pain pill with out the harmful addictive qualities. Read the book rsd/crps facts and fiction.
      Look up Rsdhope.org your Dr is not God, if he isn’t helping you ge t a n ed DR. You 🙂 ave to be your own advocate!
      Research your Dr s they are human, good and bad ones.
      Good luck

  37. My daughter Katie Jackson has been dealing with crps for over 5 years now. In the first 3 years of this disease she was being told that it was in her head even though I told them that she even cried out in her sleep. She feels like she is so alone. Her doctor who diagnosed her is now telling us there is no more he can do for her. Now it’s a waiting game. We have to wait to see Kennedy Krieger pain management until July. She is in pain everyday but she still has a smile on her face.

    I read her Journal and it made me cry. No 15 year should be ask God to take her away from this pain.

    1. I know what she deals with. My husband has waken to me screaming, crying in my sleep.
      To be my age,and struggle with docs,who don’t help or the ones who have just said get out, cant help, won’t help. It’s been ten years, 22 docs, number of physical therapist, sirgeries,etc. Then to have to deal with health care professionals who treat us in such an uncaring matter….I gave,no words. BUT A CHILD TO GO THROUGH THIS BREAKS MY HEART, because I know the pain, emotionally and physically. My heart n prayers go out to you and child.
      If they can not listen to us, the adults PLEASE Listen to our children to give them a better quality of life and future.

  38. At my last appt at my PM clinic, located in medical building of a large regional medical center (non-profit/faith based), I was told by the nurse that they had received a ‘PHARMACY FLAG’ from Medicare. When vitals were finished and paperwork completed for a minor procedure the nurse left saying she would look into it while I had my procedure/office consult. A few minutes later (seemed like hours as my mind was racing trying to figure our what I did wrong) she returned and said its ok, it was just a mix up. I imagine this was a ‘thumbs up’ to the NP that it was ok to give me my prescriptions.

    SO, what was the problem? CMS, in all their infinite bureaucratic wisdom uncovered the fact that yours truly had been receiving the same Schedule II NARCOTICS from 2 separate doctors! The two doctors just happened to be located at the same address, the same practice, MY PAIN MANAGEMENT CLINIC THAT THEY SENT THE NOTICE TO!!!!

    This bumbling would be hilarious it weren’t so pathetic. And these are the geniuses that plan on making sure patients with legitimate needs receive their medications? Ridiculous.

    PERSONAL RESPONSIBILITY. Every concerned citizen, every grieving mother of OD’d young adults, every pharmacist who ‘profiles’ patients w/out bothering to take the time to use PDMPs, and every regulator who ‘plays god’, needs to learn the principle of personal responsibility. Blaming doctors and implemeting blanket policies and regulations, that may cover half of the ‘patients’ it was constructed to ‘help are NOT the answer’. Why must everything negative that occurs to individuals have to be attributed to someone else? For a DOCTOR to be criminally charged because several of his patients overdosed by ignoring EXPLICIT INSTRUCTIONS from not only the doctor but the pharmacist, the printed material distributed with the medication, and on the actual bottle itself every time it is opened to take a dose.

    I am disabled as a result of two incurable systemic autoimmune diseases. After several years on corticosteroids my bones weakened enough (Osteopenia/43 yr old male) for 3 of my thoracic vertebrae to fracture from VIOLENT COUGHING (one manifests as an ILD).
    Two are almost completely collapsed T-6 75-80%, T-8 >90%). I have had resolution to this god awful pain blocked at several places along my bumbling path through the ‘best health care system in the world. My pulmo thought pulled muscle, I had given myself a hernia last year from coughing, or pleurisy from MCTD (lupus/myositis overlap) so no xray as I was already receiving steroids & antibiotics. Fast forward a month and I finally get an xray of my FEET which I had been complaining about continued pain. While at the orthopedic doctor i asked if he wouldn’t mind taking an xray of my back while I was there. The result was that they found the fractured vertebrae and two broken feet-(4 broken metatarsals). I had been walking on these for 2-3 months! I can’t help but wonder if the vertebrae wouldn’t have collapsed had they been found earlier because the pain became much worse than it was initially. I was scheduled for a kyphoplasty but while reviewing my medications the ortho doc said he wanted me to discontinue my Plaquenil for 30 days prior to procedure. Despite assurances from my pharmacist and rheumatologist that this medicine did NOT suppress one’s immune system, he wouldn’t budge. As this med takes a long time to gain full benefits, a 30 day vacation would be very detrimental to my overall functioning for at least 5-6 mos.
    I see another orthopedic doctor who recommended physical therapy. This has helped somewhat but i am still extremely limited in what I can do and i spend a day or two every week as a ‘in bed’ day recuperating from everyday activities (w/ awful radicular pain). I used to take for granted. Since DEC I have also had painful gastritis and was hospitalized for a week with cellulitis and lymphedema. While there, the attending doctor cut out my muscle relaxer (Soma x2), and despite being prn Rx my BT med was changed to once every 8hrs. When I met with him on day 2 of my stay he begrudgingly gave me back my Soma but told me he’d like to see me take this and my pain meds ‘less often’. Why does this fella, who is my doctor for a week worry about this? AND WHY DO I GET LESS PAIN TREATMENT IN A HOSPITAL THAT AT HOME??? I had not been admitted in over a decade. I recall being given PCA machine w/ hydromorphone and my pain was very well managed. During my stay last month I spent most of my time hunting my nurse down (the only one who could give me medication, nobody else) for my regularly prescribed medication every 4 hrs (methadone). Every doctor I have seen has pointed out that I am on a high dose. It is never noted that I had been on a smaller dose 40 mg vs 60 (after fractures) for OVER 4 YRS with NO REQUESTS FOR ANY INCREASE. NO failed UDTs or ‘pill counts’ or even 1 missed appt !!

    What the ‘opioid crusaders’ fail to realize is this. People like me have more issues than pain. I am literally falling apart at the seams, it seems. My endocrine system does not make sufficient hormones or process them correctly (VitD/calcium dysregulation) thyroid replacement (levothyroxine), testosterone (NO T, not low T, NONE), and prednisone (cortisol), I take 3 DMARDS (lupus and sarcoidosis), my lymph system is dysfunctional (lymphedema), autonomic nervous system dysfunction (dysautomomia). For this I take heart medication (tachycardia), a PPI and special diet for GI system-gastroparesis and esophageal motility disorder, Pulmonary issues w/ both sarcoidosis and lupus/MCTD which manifests itself as (ILDs Interstitial Lung Disease). I need O2 at home now along w/ nebulizer and two different types of inhalers, and steady diet of guifenessin for the all day everyday battle to clear sputum so my bronchioles don’t collapse again (2011). (All the coughing is more than a little unpleasant on my back now). I receive injections for chronic bursitis (shoulders), Euflexxa (no synovium in knees/bone on bone), occipital nerve blocks for chronic headaches, Zofran/fresh ginger for debilitating nausea, iron supplements for anemia which along w/ low O2 sats, hypothyroid, and sleep deprivation lead to an extremely horrid case of constant fatigue. The myositis component of the MCTD causes constant muscle spasms in just about any and every muscle in my body (worse in calves/back/arms). Imagine every muscle feeling like it does after you’ve had a ‘charlie horse’, fun stuff. Arthritis makes most joints in my body painful. I also have anxiety attacks which we have now determined are mostly PHYSICAL manifestations of nervous system dysfunction rather than a mental health issue (though they do come on at times when I have dyspnea as I went into respiratory failure en route to hospital in 2000, lucky to be here, very traumatic experience). Of course some depression has come along with this as well. Why? i have lost the ability to take care of everyday functions and independent living is becoming a challenge after my ‘better half’ hit the road after 12 yrs.

    Why did I go into such a long laundry list of problems when the issue is pain and its treatment?

    I AM DISABLED, for obvious reasons. I have several issues that cause severe chronic pain. Luckily I am able to have it treated with a well rounded approach but with a firm knowledge that pain medication is the FOUNDATION. It has worked remarkably well until recent injuries and increased disease activity. I can say that my pain was well controlled. What I can say is that w/out treating or undertreating my pain, my other symptoms will be exacerbated and systems would deteriorate rapidly as pain leads to increased heart rate, high blood pressure, anxiety, depression, insomnia, and a whole host of other affects that can precipitate a medical emergency.

    SO, when a REGIONAL MEDICAL CENTER SEEKS TO LIMIT ACCESS to my medication after 5+yrs (I was assigned to use one of seven pharmacies and if they were out tough luck) that is scary for me. That such an institution should treat a disabled citizen in this manner is truly barbaric. When we risk the lives of those with legitimate need for these medications in order to ‘fight addiction’ we have truly gone beyond the pale here. I think in lieu of all the media and government anti-drug sensationism and propaganda, those people should be ‘assigned’ to someone like me for a day or two. Let them see that there are people who’s lives depend on pain MEDICATION in order to have some quality of life rather than being resigned to a life on the couch. I miss being active. I would give ANYTHING to not have to take pain pills or ANY pills for that matter. I pray that I have another chance at remission. And IF I am ever given that chance again like had from 2003-2008 I will do just that. After being DEPENDENT on opioid analgesics for several years I was able to resist the temptation to steal from my family, frequent open air drug markets in search of a ‘fix’ of heroin, or ‘doctor shop’ (I like doctors but as they say absence makes the heart grow fonder). I didn’t need detox or rehab or suboxone. I am not trying to put down those with an addiction. I hate the way our government treats them (and now legit patients) as second class citizens. In a perfect world the DEA would be defunded and they would have to get real jobs other than trampling the Bill of Rights in order to save us from ourselves (even if it means prison). I mean all this urine testing and pill counting and such seems like I am living in the Twilight Zone. I am treated as if I am an ex-con on parole. And for what? Being disabled and having pain that needs treatment.

    Disabled citizens should not be receiving pharmacy flags such as I did from the very same agency (CMS) that has been ignoring my complaints for being discriminated against and being a victim of insurance fraud (NO, despite subsidies I still pay for MEDICARE AND MEDICARE PART D, they are NOT FREE). I am being denied service at IN NETWORK pharmacies that lawfully have to provide ANY medication in the beneficiary’s formulary. It is a FEDERAL GUIDELINE guaranteed in the EVIDENCE OF COVERAGE BOOK that is supposed serve as a legal binding contract in order to be part of the PLAN D drug program !!! Lighten up on the crackdown already. Innocent people are being trampled underfoot, even the ‘guilty’ addicts don’t deserve the oppression they receive, they need help. Cutting the supply of opioids is not the answer to either problem. Addicts will simply move on to other drugs like heroin, and patients will suffer withdrawal and increased pain at the minimum. Deaths will increase among both populations. Is this the kind of country you want to live in?

    *Addict or Patient? (TOLERANCE)-
    Some people will assume that increased tolerance means that over time those individuals who are regularly using a drug will need more of it to get the same effect. This is not necessarily the case. In the case of opiates there are four main effects to this drug – pain reduction, sedation, nausea, and constipation. Tolerance only really develops in relation to sedation and nausea – the effects of pain and constipation remain roughly the same for most people. This means that there is no often no need to increase the dosage of the medication over time because pain remains well controlled. The reason for why opiate abusers do need more of the drug to get the same effect is that they are chasing the euphoric effects – the brain develops a tolerance to this quickly.

    This excerpt was taken from an ADDICTION web site. Just wanted to add this to ensure those who are reading aren’t getting information that is biased towards more liberal prescribing. For more on how to recognize the signs of addiction and how to tell the difference between addicts and patients see this link:
    http://alcoholrehab.com/addiction-articles/addiction-dependence-and-tolerance/

  39. RSD/CRPS for 31 years and amputated leg above the knee. Pain pain pain Need I say more. Terrible disease. No future in sight.

  40. I have had numerous surgeries to repair a nerve issue in my left arm the arm never healed properly they kept operating again and again and again to try to figure out why my arm wasn’t feeling better the reason why it wasn’t feeling better is because I have RSD.
    I was not diagnosed with RSD until 20 years later because the doctors don’t know much about the rare disease RSD and sadly I have to suffer in horrible pain for years.
    now that I’m finally getting some pain relief these new laws make your doctors afraid to prescribe the proper medication to keep your pain under control we are not looking to get high or drug seekers we are people in pain who just want to be comfortable and not feel like we’re crawling out of our skin in pain.
    my doctor has not increase the dosage of my pain medication in at least three years so my body is used to it.
    it does absolutely nothing for me it doesn’t relieve the pain but because of the strict laws they have to control these types of medications he does not want to give me a higher dose.
    I don’t want a higher dose to abuse the medication I want the higher dose so I can actually get out of bed and do something productive with my day there needs to be an equal ground here.
    I agree there is an opiate problem and some people to abuse them but there are also many many patients like myself who need the medication and get denied it or at least not given the proper amount because the doctors are afraid to prescribe the medication because of this issue.

  41. I have had Fibromyalgia for 10 years now and have tried every treatment possible with no real lasting effect and no Doctor who knows exactly what to do or how to treat it. Every medication I have tried my body becomes immune to and the pain medications are so weak they give me very little relief. I can tell you personally that a person with chronic pain doesn’t become addicted because we do not experince a high like a drug addict. If I am having a day of less pain I don’t even take my pain meds but if I have days of unmanagable pain I take it. A drug addict must have it everyday and more of it along with any other drugs they can get. This has taken away from those of us who suffer on and on with no real quality of life because their is no reseach being done on these chronic pain conditions. Please help us get the medical care we deserve. My opinion of chronic pain is that it starts with the neurological part of our brains that no longer can create the endorfins needed to stop the pain and this I believe because of the treatments, pain clinics, Doctors and research online that I have done. Do I sound like a person that just wants access to drugs, no I want access to my life and family again.

    1. I to am a Fibromyalgia sufferer, I have been on pain meds since 2008 and that is the ONLY reason that I function as a human being. I was diaginosed in 2008 but was told by my complains that I that I have probably had it since my 20’s. That is 36 years of living with chronic pain. Now New York state where I live has decided to tell my Dr. that there are no more pain meds for chronic pain/fibro. I know that when I have to get off of the pain meds the withdraw will be horrible. 7 years on them and New York state says that I need to taper off at 10% a week. Are you kidding me that is just plain crazy. My Doctor does not agree with them but has no choice. I understand about the drug problem but I think that everyone should be looked at on a case to case basis….not a blanket law to take prescription meds away for everyone. When you are in pain…real pain…there is no “high” just relief of pain so you can function instead of laying in bed crying from the horrible pain that you are in.

  42. I have RSD for almost two years, I have not been to a dr. For almost a year. My “pain specialist” was not paying attention and used a needle too large for my block which caused an air bubble to go into my brain and caused me to have a bad seizure. I was at the time taking half of a 10mg Percocet, a bottle was lasting me at least 20 days over the refil date, I don’t like pain pills b/c I also have UC and they mess me up, but stress from pain messes me up in many more ways. When I ask for my third refill in almost 6 months the pm dr. Went ballistic telling me I had a problem, she berated me and made me cry, then said I needed “help” because I was crying. She had also just takin me off cymbalta cold turkey….so yes crying was happening not hysterics, crying. She made me feel small and unimportant. I have been using Epsom soaks and breathing techniques to try to get through the pain…. Not much help but I’m scared to go to another dr. To attempt to receive help only to be treated that way again. So no sleep, no rest, but pain. Thank God for my husband. #rxproblem

  43. I have had RSD since a drunk driver hit me head on in 1998. I had no diagnosis until 2004. I have been prescribed every medication known to man. Ketamine infusions were a godsend but could no longer afford. I recently moved to NC and so far NO doctor will treat me. I have called 8 places locally and when they hear RSD, they say they are unable to help. I have had to wean myself off oxycontin and oxy ir which I have been on for years. I never abused my prescriptions, I willingly took drug tests. I was even told I needed to take more breakthrough meds because I was “chasing the pain”. I am taking so much ibuprofen I am ill. The pain is overwhelming. My RSD is full body. I know I am a survivor but each day the pain intensifies. Unless you are in my skin, how can you understand. The wind hurts, my clothes hurt, moving hurts. I wish for any doctor to at least see me…..the search continues.
    #RXPROBLEM

  44. I have had rsd for five years now and the town I live in is very small my doctors can’t prescribe passion meds not only that they don’t know anything about rsd sloop is very frustrating being me and not having doctors know what’s wrong poor even being willing to treat it

  45. I became disabled in 2006 with RSD/CRPS only NO ONE would admit that was what I had. “The pain was in my head”, was what all the so-called physicians told me. Being a nurse, I knew what it was and continued to search for the right Doctor and by the grace of God, I found him in 2013. Prior to that, I suffered with pain and was prescribed narcotics to manage it (barely). My biggest issue—–pharmacist treating me like I was a drug addict, pain Md also treating me the same. The pain doc I was seeing was so ignorant as to what was going on with my body, didn’t even document correctly, all he could focus on was the fact that I was taking too much and MUST decrease the amount. I don’t have to deal with him now, but, getting prescriptions filled has become an issue. The physician I see and follow for my RSD/CRPS is in another state, which means the pharmacies in my state will NOT fill his prescriptions. So, I have to drive to his state when I need to fill my prescription. Not to mention, when my husband retires, I will have to pick up Medicare Part D and I’m not looking forward to finding one that will fill prescriptions in 2 different states.

  46. I have suffered from RSD/CRPS and fibromyalgia since 2006. I have had a gaggle of doctors participate in therapy, tests, trying different medications, etc. I have sensitivity to a lot of drugs and often many have caused the unusual side effects. I was taking percocet for a few years. I was careful and took less that prescribed unless I was in a bad pain place. My doctors wanted me off the medicine. I was worried because no one seems to understand the level of pain. I was put on topiramate and finally gave up on that. It wasn’t helping enough to justify poisoning my body with it. The doctor prescribed tramadol for pain. What a joke! I use it but only because I’m desperate for pain control. I usually have to take 80 mg plus 400 mg of Advil. Then I can function. I told my doctor recently that I’m done. This is cruel and unusual punishment. BTW, thanks to the Commonwealth of Virginia who doesn’t recognize the government health care, I cannot afford insurance.

  47. Going on 3 yrs w/ RSD OR CRPS 1 dx. & have never had adequate pain relief! Lack of clinical knowledge contributes to that a great deal. Also, I coordinated a grant for opiate addiction so I refused narcotics when I initially sustained the ankle sprain that developed into RSD. I was judged for that decision by practitioners, though I held out for 18 months while feeling like I wanted to have the limb amputated. I am now treated by pain medicine per my own request and am judged and questioned about 2 7.5 mg doses of hydrocodone daily. Even with 5 specialists dx. of RSD/ CRPS 1, the pain Dr. documents his question that I have that condition. I have several signs & symptoms, some of which have been witnessed by the specialists & documented. Access to adequate, knowledgable medical professiinals has been scarce! In top of that, the federal gov. has inadvertantly made it hard or impossible for legite patients to fill prescriptions in their blanket effort to reign in script drub abuse. Sad, I am an RN,C with a specialty in adult psych, which encompasses addiction and I can’t get appropriate treatment for my RSD,Diabetic Neuropothy, arthritis

  48. I have chronic back pain from a car wreck in 1987. I also have arthritis and trigger fingers in both hands, Carpal Tunnel in right hand, Reflex Sympathetic Dystrophy in left shoulder, and TMJ on both sides of my face. My doctor who has been writing my pain medication prescription just up and stopped writing my prescription in February, #RxProblem and it is now keeping my blood sugars really low(I have Severe Brittle Juvenile Diabetes), #AnotherRxProblem and all of my doctors are passing this off to one of my other doctors. None of them want to take on this responsibility. It’s completely craziness.

    1. I just realized that I for got to mention that I also have Fibromyalgia, Restless Leg Syndrome and a bone growth that was removed from the back of my head so that when there is a change in the weather it makes the area was where surgery was done pound with pain that almost drops me to my knees. My heart goes out to any one who has this kind of pain and the struggles we have to go through just to get turned down by another doctor. #RxProblem

  49. My daughter has seen to many doctors to even count. She is in excruciating pain 24/7 and they refuse to write for pain meds. She has even asked for ketamine cream that is rubbed on legs that seemed to take the edge off but her current drs won’t write it. (She was prescribed ketamine cream from a previous doctor). She is on the verge of going on disability and having to leave a very good job and profession. So sad that doctors are so afraid to prescribe to the legitably Ill who really need help desperately. I guess they don’t call this the suicide disease for nothing. She comes home from work crying every night. It’s heart breaking to watch. This problem needs to be fixed now.

    1. I too have suffered, and endured with RSD and other painful, energy robbing, soul crushing, intratiable pain for 15 years now. I have lost friends, family and my self worth…,I was a vibrant healthcare worker which was my life, please ,please show that people who need pain meds., for quality of life DO NOT ALWAYS BECOME ADDICTS!!!!! I don’t get that euphoria feeling any more! I get nauseated, weak, and dragging…,We fight suicide daily!!! We fight doctors, nurses, and even now the pharmacy that tell us they are out of certain code medication!!!! Please hear me, pain meds are the last thing I grab, and just because it says to take this many, I don’t until I can’t stand it any more…..oh yeah sleep can be a real problem!!!! The type of nerve damage is so different…. I have times when I can’t stand to be touched, or even wear clothes over the area, the limb fells like a second degree burn that never heals!!! The limb is cold to the touch….. I also have degennative disc disease….. I have thought dear Lord, I’m going to suffer for the rest of my days,,, do I really want to do this?!? There is no Cure!!!, The treatment is trial an error, and those medicines make you sick too!!!! I found that my care, and well being is decided upon by officials who are seeing people who abuse pain meds.. and they even want to give them Narcan, when they overdose!!! The media is horrible the way they report and offer their opinions,,,,,, please talk to the patients,!!!! GOD HELP US !!!!! Lastly PAIN is a Disease!!!! Thank you..

  50. Was diagnosed with CRPS 8 years ago. Due to allergies and reactions I am unable to take the meds for the nerve pains. Was put on cymbalta several years ago which did help with some pain and depression. However my insurance refuses to pay for it now so I am left untreated. I use compression sleeve and heating pads as a treatment.

  51. I have started receiving pain meds at a minimum again, but each time I explain to the Nurse practitioner that that It wears off at the 4-5 hour point & by the 8 hour time that he has me prescribed for the next one I am in screaming pain again. This happens with each nurse practitioner, I get cut off all meds for complaining! I keep myself in the lowest dose (5mg Percocet) so I have somewhere to move up to in time knowing this is a lifelong battle. Not only do I have to go hungry & choose which bills not to pay because my insurance refuses to pay for my pain meds, the stress each month is off the charts with this situation, than add the almost hundred mile monthly trip to have to hand pick up & fill & go to these useless appointments every month that cost a bundle in gas money when I live on only $733 a month disability to pay for my housing, utilities, food, gas, medication & phone! It just doesn’t cover it

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