Where are the Voices of Pain Patients?

Share with others

We thank Dr. Maureen Wilks for sharing her story as a voice for pain patients.  Below is her heartfelt story of her husband’s journey with pain management and access to a provider willing to treat him… 

It seems that every day there is another news item on either prescription drug overdose deaths or the rise in heroin overdose deaths.1-8  These stories tug at our hearts, the heartbreak of the loss of a vibrant teenager or young adult to prescription drugs and/or heroin. But where are the stories of the pain patients? Where is the voice of my husband who lived stoically for over twenty years with chronic pain? He bravely kept moving forward always hoping for the pain to abate. He tried all the treatments, countless treatments over endless years. Multiple physical therapists, acupuncturists, chiropractic adjustments, massage, herbal remedies, herbal wraps, yoga, meditation or prayer but his pain persisted. He took all the non-narcotic medication prescribed. None helped with the pain but the side effects added insult to his pain; some made him feel like a zombie, not himself. Those I made him, stop. Some made him sick to his stomach, others he listed to the right, and a few made ringing noises in his ears and brain. One had him sweating so much that by morning his pillow was wet. Many of them left him feeling zoned out, listless and mentally uncomfortable, and all the while the pain continued, poorly managed, becoming its own disease. Finally a doctor listened to his life story and prescribed opioids, along with physical therapy. Over the following months his pain backed down, and his life was bearable, and he moved back into the world to participate with friends and family; to go for walks and camping trips that had become impossible to bear.

And then we read of research, or lack thereof, concludes that opioids do not work on long term chronic pain. I think of my husband and all the patients I have met over the past ten years as an advocate for chronic pain patients in New Mexico and I want to scream “How can you make such broad sweeping statements? How can you ignore the voices of patients whose lives have been transformed by opioids and have lived with them for many years? How can you place all chronic pain patients into one simple neat little box, wrap it up and throw away the key for a chance of happiness for intractable chronic pain patients?”  Because this is exactly what the latest guidelines from the CDC will do.

When dosing guidelines are implemented even if you acknowledge the exceptions simply from a legal perspective it will be a brave doctor that will prescribe above the guidelines because if anything were to happen to a patient under their care and they were not following the guidelines they will face an uphill battle in the law courts of this country. And they know it, and so they will cut back, and patients will be abandoned. The thrust of all the current research is to come up with as many reasons not to prescribe while all the time avoiding the number one reason to prescribe, which is to manage pain. Hyperalgesia, low testosterone, constipation and the list goes on. But let’s be honest here. Every drug on the market can have some pretty awful side effects. Just read the list on the information sheet. My husband experienced many of these first hand taking the non-opioid anti-depressants and anti-convulsants. It is estimated that NSAIDS kill 16,000 patients a year. When my husband’s pain was managed, he applied a testosterone cream, and ate a high fiber diet to keep regular bowel movements. And yes, our sex life may have diminished; we always had a great intimate relationship, kissing, cuddling and abundant laughs. But when his pain medication was abruptly taken away in 2011 pain became the overriding aspect of his life, it impacted our relationship so much more; pain overrode all desires.

In 2012 my husband was diagnosed with a choroidal melanoma in his left eye. As we waited to talk to a surgical oncologist at UNM Cancer Center I picked up a booklet published by the National Cancer Institute: Support for People with Cancer-Pain Control. It states with Cancer-Pain Control;

Over time, people who take opioids for pain sometimes find that they need to take larger doses to get relief. This is caused by more pain, the cancer getting worse, or medicine tolerance.  When a medication doesn’t give you enough pain relief, your doctor may increase the dose and how often you take it. He or she can also prescribe a stronger drug. Both methods are safe and effective under a doctor’s care.”

No one disputes the effectiveness of opioids in the treatment of acute pain, hospice, palliative and cancer pain. My husband did not have pain associated with his eye cancer, so he could not be treated under their pain guidelines. Radiation treatment did not stop the tumors growth and he had to have his eye removed. No other cancer was detected in his body. In reality though the cancer had already spread and two years later by the time two large tumors were detected in his liver his life of suffering was almost over. In the last five weeks of his life he was given the much needed drugs to manage the pain that was still throbbing at the base of his neck and had now spread to his liver. The last two years of his life were quite frankly miserable, and this sweet gentle man deserved so much more.

Addiction is a serious concern and does need to be addressed. I believe training and education on opioid prescribing and a strong mental health component is absolutely essential in treating chronic pain patients to prevent addiction happening. Researchers need to recognize that chronic pain encompasses a multitude of diseases, injuries and mental health issues and lumping broad groups together is poor science. Reducing overdose deaths is not quite as simple as reducing access to prescription drugs. If it were then there should be a correlation between overdose deaths within a state and the amount of opioids being prescribed. New Mexico ranks number two in overdose deaths but only 22 when it comes to prescribing (1 being lowest, 50 highest). I live in a county where 27% of the population lives in high poverty defined as one in which 20% or more of the population has lived in poverty for 30 years or more. 44% of families had parents without full-time, year round employment. New Mexico ranks 49th to 50th for alcohol related deaths. We have a fragile population and understanding and treating chronic pain within this population requires careful management and better access to mental health care. At the same time we cannot and should not put limits on the use of opioids for treating pain patients but need another layer of education, safety and adherence to both patients and prescribers. The hundreds of thousands of chronic pain patients living in America deserve better than what the CDC guidelines propose.

As always, comments are welcome and encouraged!

mwilks 2015Maureen Wilks is a Senior Geologist, and Head of Archives and Collections at the New Mexico Bureau of Geology and Mineral Resources. From 2012 to present she was invited to attend the New Mexico Prescription Drug Misuse and Overdose Prevention and Pain Management Advisory Council as pain patient advocate.  In 2014 she became a core member of the Socorro County Substance Abuse Prevention Coalition, and later, a sponsor of HB 159 for the NM Department of Health to conduct a chronic pain study. Her husband Bob Macleod lived with chronic pain for over 20 years before his death in October 2015. She is writing a book about their experiences “A Pain in the Neck: The impact of prescription drug abuse on the treatment of chronic pain patients in America”.

 References:

  1. http://www.cbsnews.com/news/heroin-in-the-heartland-60-minutes-2/
  2. http://www.pbs.org/newshour/bb/on-the-campaign-trail-in-nh-heartbreak-over-heroin-addiction/
  3. http://www.huffingtonpost.com/entry/new-hampshire-episode-3-how-the-heroin-crisis-is-bleeding-into-the-primary_us_56a67905e4b0d8cc109af820
  4. http://www.npr.org/sections/health-shots/2016/01/11/462390288/anatomy-of-addiction-how-heroin-and-opioids-hijack-the-brain
  5. http://www.npr.org/2015/12/27/460847616/portraits-of-those-killed-by-heroin-bring-healing-and-awareness
  6. https://www.washingtonpost.com/news/to-your-health/wp/2015/12/11/deaths-from-heroin-overdoses-surged-in-2014/
  7. https://www.washingtonpost.com/news/to-your-health/wp/2015/12/21/florida-pill-mill-crackdown-also-may-have-reduced-heroin-deaths-researchers-find/
  8. http://www.foxnews.com/opinion/2016/01/23/bush-christie-fiorina-kasich-2016-candidates-can-change-way-talk-about-addiction.html
  9. Gurkirpal Singh, M.D., Recent considerations in nonsteroidal anti-inflammatory drug gastropathy, American Journal Medicine 1998; Jul 27;105(1B):31S-38S

26 thoughts on “Where are the Voices of Pain Patients?

  1. 37 years of Severe Chronic Pain that ruined my life, caused by an illegally drunken driver in an 18-wheeler with bald tires on the rear two axles of the truck, driving at night on a dark wooded icy/snowy highway, jackknifed across our on coming lane of highway. Where the vehicle I was in collided off our side of the road trying to get hit, but impacted ripping both axles off the trucks trailer. The truck driver was totally at fault, as two wrongs don’t make right, and my friend driving the vehicle I was in did nothing wrong! My two friends 19 & 20 years old were killed.
    I was 18 years old and spent more than ten years suffering from daily constant Severe Chronic Pain. Not only did I have a severe head injury that I was not conscious for a whole month and far from up to par when I first was trying to figure out things, but I also had to have a C1-C2 fusion, and multiple head, face, and upper body injuries and operations due to such.
    I spent the first more than ten years trying to find something to ease my daily constant Severe Chronic Pain. Nothing worked, but strong Narcotics, yet I was NOT allowed to use the Narcotic Medicine long term. Why I couldn’t use Morphine, turned out to NOT BE TRUE AT ALL! The more than ten years I couldn’t use Morphine, was a literal daily constant suffering Hell of Pain! Every day I had to live with Pain that ruled and ruined my life! All the other things- exercises, the other drugs than strong Narcotics (that were tried on me, that did not work, and interestingly I swear if they had worked I could have requested a truck load to be prescribed and gotten it without any problem from the system, but as for the one kind of drug that did ease my spinal neck Pain, face Pain, eyes Pain, head Pain, shoulders Pain, upper chest Pain, arms Pain, and hands Pain, I was forbidden to use it- but for rare low count prescriptions. All the emergency room visits I was treated like my Pain was nothing, as if all in my head, and as if all I wanted such Medicine for was as if I was as good as a drug addict! Treated that way, for suffering daily Pain that would escalate at times so bad that my whole body was a Pain and I would vomit from the neck Pain that would spread like to my whole existence it was so bad.
    I suffered, daily constant Pain, and was never compensated fort it, thanks to Severe Chronic Pain being non existent at the time in the Medical world. Treated like it was all just in my head and not real.
    After more than ten years of this Hell, Hospitals, Doctors, Specialists, different States, and NO answer or help for my suffering that was slowly killing me besides the suffering, and that had ruined my life, I was finally starting to lose my mind from the Pain. As all hope was pretty much gone and I was suffering daily!
    Just at this time I was recommended to a Pain Clinic. I didn’t have much belief in it from how I had already been treated for over ten years.
    I looked at it as my last hope and would try it, even though I thought I’d be treated bad like I had been for the ten years not helped. Well it turned out that nothing worked, but yet the Pain Doctor actually I believe saw the extent of my Pain. How easily it could just get real bad from doing very little.
    My fusion was also found to be NOT exactly in place as it should be, but is too dangerous to mess with. Another thing the trucking company got away with, as it is not so easy a process to do. I could have been killed from the operation. My Odontoid bone at top of my neck that does not fuse once your body is done growing, had been broken right in two. If it had moved it shuts my respiratory and I die!
    Well anyways the Pain Doctor started treating me with strong Narcotics, it was a life saver! It saved my life, i.e. the Pain Doctor and i.e. the OxyContin and Morphine.
    I finally after a while got to a dose that worked. A dosage that is considerably higher than the 100mg State of Maine law that has ruined my life! I have used two different doses of Morphine Medicine for past more than 25 for my Severe Chronic Pain sickness that the illegally drunken driver in an 18 wheeler truck caused criminally assaulting another friend and my self and committing vehicular homicide for my two 19 & 20 year old frieds (though due to being the ages that we my friends, and my self were, we were deemed unworthy due to nothing more than the age we were and being Males and accused for such, I can explain it better in factual detail).
    For all I have gone through and lost, and all I did in a proper Medical way to finally be properly treated and finally have my Pain eased after more than a decade suffering every single day, the State of Maine now after 37 years of daily Severe Chronic Pain and having responsibly used Morphine for more than 25 years with NOT one problem! The State of Maine now takes it away from me, because of drug addicts that I don’t know, don’t have anything to do with, NOR deserve to be treated like I have and my Medicine just taken away from me, as if all I have gone through and had to do just to finally be properly treated for Severe Chronic Pain- as if it never happened! They are as good as treating me like I am a drug addict and should be punished, as if there is nothing wrong with me and I do NOT have Severe Chronic Pain. As if Severe Chronic Pain is nothing, as if suffering means nothing. As if it is okay for me to suffer. As if it is all okay to make me suffer. As if I am less than a person and it is okay to treat me like this right here in the United States. As if the United States is a communist country and it is good to do this to people like me with Severe Chronic Pain.
    Even though all I have gone through and my sickness of Severe Chronic Pain is real. Even though I have had NOT one problem from needing and using responsibly the Morphine Medicine. Even though I have passed all my urine tests for using Morphine Medicine for Severe Chronic Pain. Even though my count of Pills has always been good when taken, because I use Morphine Medicine for Severe Chronic Pain. Even though I need to use Morphine for the Severe Chronic Pain. Even though I have always used the Morphine Medicine responsibly for my Severe Chronic Pain.
    Even though I was born in the United States as a United States Citizen, though I wonder why I am treated like such? Why? Why are they doing this to me?
    There is NO Pain Doctor in Maine anymore who prescribes Morphine to people like myself, I can’t find one, and there is NO more Pain Clinics that prescribe Morphine, they are either NO longer taking anymore patients, or they do NOT treat people anymore with Morphine for Severe Chronic Pain.
    My life that took years, two decades just to finally have my Pain eased to a point of decency, though I still have to suffer, but now the State of Maine just takes it away from me! Why? What did I ever do to deserve this? Most of my life is now gone, and I ‘m getting punished now- because of other people- strangers- who are drug addicts! Hey I didn’t do this to my self, it was a drunk in an 18-wheeler truck, go blame him! I’m tired of paying for other people’s mistakes that I have absolutely nothing to do with. Just because I have to use Morphine for this Hell I had shoved upon me, and all the suffering I was NOT at all compensated for- does NOT at all give the State of Maine the right to punish me and ruin my life based on other people’s wrong criminal behavior!
    I don’t have a State, I don’t have a Country, I don’t even have a life, yeah thanks a lot for everything. I am advancing weekly closer to the Hell I fought to get out of. I AM NOT AT ALL A DRUG ADDICT! I HAVE RESPONSIBLY NEEDED TO USE MORPHINE FOR THE PAST MORE THAN 25 YEARS, YET i AM PUNISHED RIGHT HERE IN THE UNITED STATES, FOR NOTHING I HAVE DONE WRONG!
    I get NO trial, NO judge, NO jury, NO defense, only punished for the drug addicts that I don’t even know or have anything to do with.
    Why? Why am I treated like this? Why do I have to keep fighting for a life here in the United States, a life that I once again NO longer have, thanks to my Medicine that saved my life and gives me a life that I do NOT have without the Morphine Medicine, yet the State of Maine has just taken my Morphine Medicine away from me- I am treated worse than a criminal! For now I have to suffer in torturous Pain!
    Think again if you think the United States/State-of-Maine doesn’t make people suffer in great torturous Pain!
    Right here- I am the proof of it! They are taking my Morphine Medicine away from me- for nothing I have done wrong nor deserve to be treated like such! Making me suffer in great Pain again!
    The Pain from severe injuries that I have, thanks to an illegal stranger’s drunken driving in a big 18-wheeler truck- yes the Pain is once again escalating greatly all thanks to Maine taking my Morphine Medicine away from me. I use it responsibly for more than 25 years, due to some strangers illegal wrongs, and this is what I get for it. ?

    1. The second sentence should say:
      Where the vehicle I was in collided off our side of the road with the truck’s trailer, as my friend tried to swerve off our side of road and NOT get hit by the trucks trailer that was completely across our oncoming lane of traffic and coming at us, but we still impacted with the truck’s trailer ripping both axles and all 8 tires off the trucks trailer.

  2. Dr Jeff P, I appreciate and love all your advise, and concern for us all here, in severe pain, and not being treated right at all as humans with pain! I am in Bloomington , Indiana. i have suffered from a a severe accident in Nov of 2013. i was placed in pain Managment a yr ago. One of the Drs here in the center, was caught trading Sex, for Prescily Dr, who is referred toriptions. The FDA shut down the Center, in April 2016. Since this action, and because of this DR. i have lost all hope in being treated right by a good Dr. I have been tossed around, my spinal and neck pain, is not being treated right. I have spent months in bed, I have no idea what to do next! Please, if you can refer me to a good pain specialist in Bloomington, Indiana, I would so appreciate so much. I am 59 yrs old, I have 7 grandchildren. Ive tried all I can ,,please write me, or call, at 812-369-4935. My family DSr. for the last 6 months or so, has failed drastically in treating, and he lping my situation, Please help me with all you can, thks soo much:) Gale Marie Eads

  3. I am a chronic pain sufferer. I was diagnosed first with small fiber neuropathy, then CIDP and just last week fibromyalgia. I cannot stand or walk for more than 2 minutes without excruciating pain in my feet (feels like someone beat them with a bat). If I do ‘push through it’, I am down for the count for who knows how many days. I am bed ridden because of that. I have two teen girls, that I can no longer physically be there for. I can no longer cook, clean my house, take showers, dry my hair, do laundry, go to the mall or super market, work (I was an actress). I live in my bed and am beginning to think that that’s where I’ll die too. All of my friends have drifted away – they do have their lives to live, so I don’t blame them.

    I’ve tried every anti-depressant and every anti-seizure medicine for the pain and none of them worked. But thanks to them by last September I had gained almost 40 lbs. Walking was difficult at 135lbs, at 173 it was nearly impossible. I am always in pain. It’s the only thing I think about all day every day. My quality of life is barely a 1. The only thing keeping me on this planet are my kids, but I’m beginning to think that eventually my pain will trump my mother’s love.

    None of my doctors have mentioned anything to relieve my pain besides antidepressants and anti seizure stuff and I’m too afraid to ask for anything stronger because I know how it will appear. So, at 49 years old, my life is pretty much over. All the things I wanted to do with my husband once the girls went off to college are now out of the question – because I can’t walk. Do I really need to get a motorized wheelchair (the pain in my hands would make it impossible to wheel myself) when there are drugs out there that could cut my pain in half?

    My new rheumatologist has started me on LDN (low dose naltrexone) which can be a miracle drug for some and do nothing for others. I won’t know if I’m one of the lucky ones for 3 months. And if that doesn’t work, he wants me to try another anti-depressant, Savella. It’s in the same class as Cymbalta and that didn’t work (plus the side effects were hell and coming off it was worse), so I’m not sure why this doc thinks Savella will.

    I don’t wish this type of life on anyone, even those in power that make the decisions that directly affect me. I only wish those people would talk to any one of us, live with us for a few days, get a feel for what life is like with a chronic illness that includes chronic pain. Then maybe they’d understand that the policies they’re implementing is like cutting off one’s nose to spite one’s face. Pointless and only prolongs our suffering.

    1. My heart aches hearing your story. I have ankolysing spondyolitis, undiagnosed for twenty years. My family dr. Would give me 5 vicodin a month, if that. I finally found a PhD physiatrist, he finally diagnosed me, and allowed me to take pain meds. I cried, told him I am active , am a new grandma, I hike, ride behind my husband on the bike, and I refused to stop because of pain. He said he agreed, I am finally feeling my pain is managed to wear I can do those things.
      Find a Dr. Who will help you.

  4. @Lee, I suffer from the same illness as your daughter after a bout of mono that I never recovered from some 16 years ago. I’ve not read of any other cases exactly like ours so wanted to share mine with you. If you ever want to talk please let me know here.

    To whomever said we need a way to prove our pain. I’ve thought the same thing and now there is a way. Some type of brain scan that shows pain activity. I never pursued it because I’m certain it costs thousands of dollars I don’t have on disability payments. But maybe it’s time as chronic pain patients lives literally depend on it now. Though why in the world do patients need to prove what they say to their doctors is true?

    What happened to the patient doctor relationship largely built on trust? Or did that go out the window along with the required urine testing now needed to receive pain medicine? Patients are guilty until proven innocent? It seems like it all too often.

    ps: I wish this blog provided ways to share these articles on places like Facebook.

    1. Ann, What exactly do you ran by “I wish this blog provided ways to share these articles on places like Facebook”? Perhaps I could make that happen if you explain what you are asking for.

      Best,
      Dr. Jeff Fudin

  5. I was an RN for 30 years.I have had a kidney transplant due to a genetic disease,fibromyalgia,arthritis,numerous orthopedic surgeries,neuropathy and so on.I am also a severe chronic pain patient.I have tried every non opioid on the market to deal with my increasing pain as well as injections,acupuncture,physical therapy and so on.No relief.I am fortunate enough to be under the care of a pain specialist with strict guidelines.Even with my meds I have breakthrough pain.I am also fortunate enough that I have had the same pharmacist for years who has no problem filling my scripts.Despite all this I live in extreme fear,fear that like many my medications will be cut off due to governmental regulations.I can’t go back to having no relief.It isn’t a life just existence.People especially medical are so judge mental,to many we are nothing but addicts.Why should I be made to feel like a criminal.Do people really believe I would choose this life?I am disabled,I make much less than I did as a nurse.I am so sorry for all who have had to suffer and those who still do.I am so glad I found this site.People who understand.Thank you.

  6. Writing as the mother of a patient who was permanently “broken” (whether you call it CFIDS, ME, etc.) following a prolonged/severe case of mononucleosis that abated, returned, and left its symptoms that have never gone away. Our daughter has been disabled and in full-body pain as if suffering from a terrible case of flu for about 25 years–half her life. Her mind is as sharp as when she earned her Masters’ from Harvard University; but she is able to tolerate conversation or other very attenuated activity for maximum 1 hour a day–none at all some days.

    After trying every possible Western, Eastern, traditional and alternative therapy and numerous doctors, she has only experienced relief from opioid therapy: It allows her barely enough physical comfort to make it worthwhile to remain alive. Unfortunately, pain docs who once prescribed opioids as palliatives, even for those in chronic distress but not terminally ill, are now afraid for their licenses and reputations.

    Paraphrasing “Betty February 2, 2016” (above): “…The rise in opioid abuse and overdoses has caused overreaction in the press and government…Doctors have… misconceptions about chronic pain patients… Patients (also) don’t come forward (due to) risk: If you (talk to) the press about your chronic pain and ability to function with narcotics, you put yourself at risk of being robbed in your home.”

    Hate to admit it, but my husband and I have gone a long way toward anger at the numerous victims of accidental overdoses from recreational or untreated addictive-opioid use: It is obvious that our daughter’s life is valuable to no one but our family and few close friends to whom she is generous with love, wit, knowledge, intellectual and technological help.

    1. My heart breaks for you and your husband, and I know how you feel. It is scary times for these fragile ones who are helped by medications that others abuse. Our grown son is in a similar condition with an intractable pain condition. We tried EVERYTHING Eastern , Western and in between, like you did, and he now has some semblance of a life with medications and a skilled doctor who saved his life. Yes, untreated pain can be deadly. I am reminded daily that others are not as fortunate as we were. Some of the interventional treatments to his spine (epidurals) left him much worse off and in unspeakable pain. You realize how fragile and precious life is and it makes me angry too, that all the focus is on the other side of the equation..those who abuse medications and become addicted.
      I am glad those with addiction are facing less stigma and can receive care , but angry that we are left to worry because of this focus on addicts, and of the growing stigma towards pain patients. It just should not be an either/or situation. I worry that our family member might not be able to receive the treatment that helps him and saved his life because of all the rhetoric going around these days against opioid medications.
      Many of us are working hard to try to help change this current situation so that family members like your daughter can continue to receive the help they need. You are not forgotten…the other side needs to be heard!
      Thank you also Dr. Wilks for sharing your heart wrenching story…I am so sorry that because of ignorance that your husband had to spend the last two years of his life in complete suffering. This is just completely wrong-headed and we are so concerned that these CDC guidelines will create so much more unnecessary and severe suffering nationwide. Hopefully some common sense will come back and the balance restored quickly! The pendulum has swung to far.

  7. I too am a chronic intractable pain sufferer. About ten years ago I had injured my spine and had two FAILED spinal fusions that left me with severe nerve damage. I went thru years of physical therapy, chiro, tens, accupuncture, massage, epidurals, discetomies, trigger point injections, facet Injections, nerve blocks, heat, ice, NSAIDS that tore my stomach up, tried all other medications besides opiods. I also suffer from three herniated discs, fibromyalgia, osteoarthritis in my hips and spine, sciatica, degenerative disc disease,stenosis, neuropathy, complex regional pain syndrome, migraines, and because of this hell I am being forced to exist in I suffer from anxiety and depression. Years ago I was with a very compassionate pain doctor who was very thorough with me and after exhausting the alternative therapies my body could take I was put on opiod therapy. When I was on the correct dose, the overbearing pain was finally at a managed level to where I had a QUALITY OF LIFE. I was able to do simple things like shower daily, laundry, walk my dog, cook a meal for my kids, lightly clean my home, food shop, sit at my sons basketball games and my daughters plays, go to family gatherings. That doctor left the practice and the nightmare began. I could not find a doctor to take over and was degraded and mistreated based on the opiods I was on. I was told horrible things by the secretaries on the other end of the phone, passing judgement on me without even knowing me or reviewing my medical records. I was at my breaking point, a very bad place to be and finally found the neurologist I am with today. Upon my first visit, my meds were immediately lowered, rather than every four hours, it went to every six. I knew there was no way I could go that long as its like clockwork around the four hour mark my lower back starts locking up and then the excruciating pain comes back with a vengence. I put myself on a schedule, my doctor agreed to where I took my medicine at 6am,10, 2 and 6pm. I got thru the day which was all that mattered so I could be there for my kids and them not see me in agony. I was on a muscle relaxer at night that helped to calm allt the spasms down and helped me to rest. Then the muscle relaxer was taken away because I was told it wasn’t allowed with the pain medication, a lie I know. I still kept myself on the schedule thruout the day, but at night it was brutal and still is. I was on the same dose for years with success. Never painfree, but my pain was at a managed level that allowed me a QUALITY OF LIFE. Then last March, my meds were lowered to ineffective doses that have left me in agony, Back in December I pleaded to be put back on the mgs that worked for me, My anxiety is thru the roof. My health has deteriorated since the medication was lowered. I do not sleep nor do I eat. My doctor of almost five years made very upsetting degrading comments to me, tried to make me feel like something I am not. He agreed to put the immediate release back to the mg that worked but for every eight hours and lowered the extended release way down. Since then. I am not making it every eight hours at all. I try so hard. The most I can push it is maybe five to six and by then, like today, im in excruciating pain. It was all I could do to get home today. Its as if a concrete slab is dropped on my back crushing every inch of my spine, My hips feel like they are being dragged along the concrete, chipping away at my bones. The middke of my spine feels like its being hit with a baseball bat, my knees feel like they are being hit with a hammer and are on fire. The shooting, stabbing, piercing, electric type shocks go down my right leg and my right foot has been on pins and needles since the day I woke up from surgery in 2008. I feel like my whole back is being gnawed at, throbbing all over. For the past few doctors visits I had and address these issues, he throws such degrading comments at me I leave there in tears, most times I beg God to take me. I would never harm myself, Would not do that to my kids, If it weren’t for them, I know I would not be here though. I’ve called other doctors offices to try and get a new dr to take over, but once again I am mistreated and discriminated against. I am sick and tired of being treated like some pill seeking addict looking for a fix. I have medical records, Mri’s, scans to back up my pain . My conditions are debilitating and leave me bedridden most days. I do feel like ive failed my kids in all ways. I hate that they see me suffer so much, miss out on so much. My siblings just dont get what im going thru ther than my brother, as he is in the same boat as me, only his pain dr refused to properly medicate him for a year, jerked him around and my brother could not longer take the pain and got talked into another back surgery. It has been hell since December. He winded up getting MRSA, had toe operated on again three weeks ago and has to have another operation this coming thursday. Hes ben staying with me and ive been his around the clock caregiver. It’s extremely difficult for me to take care of him when I can hardly care for myself. I am physically, mentally and emotionally exhausted. I am in severe pain every dam day. By the time I do take my medicine, the pain s so bad that the medicine does not bring it down to that managed level anymore, because of having to take it every eight hours, way to long to wait to take it. I am furious! I had a quality of life when I was on the right doses of everything and every call I make, every office I speak to I am hung up on, told to go to detox, treated horribly and I am tired of paying the very high price with my health and overall well being because of those who CHOOSE to abuse. This is cruel, it’s barbaric, it’s INHUMANE AND IT IS TORTURE at the hands of the DEA and our government! I am at my breaking point. I am so disgusted that doctors are turning their backs on those of us who have debilitating conditions there is no cure for, Where are we to turn? I am in NJ and my neurologist is a medical marijuana prescriber. We looked into getting me on the program but our governor has put such tight restrictions on it, that I do not qualify and pretty much have to be at end of life care for it. I just want my quality of life back, I want to be the Mom my kids need me to be, not this broken om who is in severe pain 24/7, who never smiles anymore, who doesnt make it to their activities, who cries off and on thruout the day and at night I find myself asking God to please just end this already. Our rights are being violated. We have rights in this country, right to treat our pain to be treated with respect and dignity, the right to privacy, what happened to the HIPPA laws?? That seems to not apply when its a chronic intractable pain patient, he right to pursue happiness, who can do that when you are in hell being tortured by the DEaand government. I search on the internet all day for doctors, looking up articles, etc, ive written so many times to congress, my senators, the CDc, DEA, UN, WLF, the list is endless and NOONE is listening. Suicide rate is going up as more and more Patients are being stripped of their life saving medications leaving them nowhere to turn but the streets for relief. This is a disgrace that our government is preting on the chronically ill, but become an addict and get all the compassion and doors open to you for help, they even get clean needles handed to them to shoot up their heroin. I am a law abiding citizen, I did not break the law, I follow the rules. I am chronically ill! I did not CHOOSE this hell, it chose me. Sorry for the long rant, I just hope I find a compassionate dr soon. I can’t take much more, God bless..

    1. Thank you for sharing. Your story resonates with all the difficulties my husband endured. We need as a pain community to figure out ways to treat intractable pain patients!

  8. NATIONAL TREND, “They, Worker’s comp, are cutting off all my meds.” Sedgewick, those BAST#$#S!! Anyway, nothing I can do. My attorney in Vegas where I was injured, she won’t call me back. My doc yesterday was livid, but, nothing he can do. I had an IME in Vegas, where I was injured , earlier this month. This doc, who has never seen me before, his name is “URKLEWATER”, little Thai doc. My case manager screwed me and only send a small amt. of my records. I have never felt so screwed over in my life………………..Well, Doc, this is it for me. I will never handle this kind of pain, “Arachnoiditis.” My first doc said, “National trend, Herb, your screwed.” Wow, what a wonderful thing to say. I wonder what I would have said if he had been in the bush with me in Nam……..”Gee, doc, your screwed”. yea, I know, I’m angry, but, I’m screwed!!!!!!! I have been managed professionally for 15 years. The formula of my meds work, but they are expensive. So, they went after me. Send me to a doc that didn’t give one steaming plate of crap what was going on, so, they say pain doesn’t kill folks. OH, no, not talking about suicide, shoot, I’m an old soldier, never do that. BUT, scared, afraid? Not that either, Just mystified. I’m an honest, great character. Ask our blogger, he knows’ me as a character. If I don’t laugh, I might cry. Haven’t done that in awhile………herb neeland

    1. Oh Herb, I don’t blame you one bit for being so angry!!! Pain can and does kill. I came within an eyelash of having a stroke when my pain meds weren’t processed for 10 days.

      I have a rare genetic disease that spawns many other disorders, all painful. My doctor said he didn’t want to treat me. My geneticist MD is 4 hrs away, and it took 2 YEARS for me to feel “well” enough to see him. When I did he was disgusted that the tests he ordered were not what he asked for, the doc lied to us about the results of a bone marrow biopsy, and other issues ad nauseum!

      Glad you have a voice here and more importantly, USED it here.

      By the way, THANK YOU for your service to our country. It means so much and often goes unappreciated.

  9. A big reason why patients don’t come forward is the stigma and the risk. If you are out in the press talking about your chronic pain and ability to function with narcotics, you put yourself at risk of being robbed in your home. I think the rise in opioid abuse and overdoses has caused an overreaction in the press and government. I also think some doctors still have these misconceptions about chronic pain patients.

    1. I completely concur with your comments. With new laws in place doctors are very early to prescribe and the bottom line is many doctors don’t believe their patients have severe chronic pain. How does a chronic pain patient prove they are miserable? How do they function without help?

  10. I think us ‘pain’ patients have lost a hell of a lot of confidence in Drs. Over 20 yrs ago I’d been seeing my GP with so much unexplained pain. For over two yrs he tried all the drugs he could with Amitryptaline being the one he found best for me. Within a very short time I had progressed from 50 to 150mg & I could no longer function as a person, falling asleep all over the place, even whilst eating a meal. After 2wks it began to level out but not the pain. As a parting gift to me before he left the surgery he explained that financially he hadn’t been able to refer me before but now I was on the way thru the NHS to Reumatology. I spent 7 wks in Hosp as Prof Blake wanted to find something he could make right but unfortunately he had to diagnose me with Fibro & I’ve been fighting my way thru the whole miss understood umbrella of Fibro. Today I take a huge amount of drugs, a Morphine patch & am still in pain. Please God when will they find a REAL way to help us???

  11. I am crying over this wonderful article! I was diagnosed with fibromyalgia by Dr Drobniki (sp?) in 1992. I went to 3 other doctors in 1990, in 1992 Dr D who taught at U Wash Med school about this disease, & had an office in Bellingham, WA, USA gave me a diagnosis. When I moved to Canada, my doctor there knew how to treat this disease. Then, about 10 years, he retired. I moved to a large city because of my husbands new diagnosis of Alzheimer’s/Vascular Dementia for his treatment. It has been awful for my FM/CF because doctors here don’t know how to treat me. I am a 24/7 caregiver for my husband. I have been taken off my FM/CF meds. Why? It is so deficit. I hope your work will help me and others like me!!!

  12. I’ve been in pain for so long that I can’t remember what it feels like to be pain-free. I even dealt with a rheumatologist who didn’t want to prescribe opiates, even when nothing else was working! I’ve finally found a pain clinic but they only treat some of my pain-causing issues. This is all so bogus I could scream!!

  13. Thank you for sharing. The article is completely correct, they don’t understand pain management patients and just assume, yes I said assume, they are all drug addicts looking for a fix. They need to find some way to manage who and why they are prescribing the medication and then weed out the doctors who don’t do what they are suppose to do.

  14. Maureen, you will find evidence for high dose opioid analgesia all through the medical literature. I suggest the journal http://www.practicalpainmanagement.com as an introduction to chronic opioid therapy (COT) for the treatment of chronic pain.

    My review of the research for evidence of hyperalgesia has uncovered the existence of this rare syndrome in three study groups, the majority of which involve tortured lab rats, along with the odd study involving human volunteers two classes:

    1) opioid addicts in methadone maintenence programs without a prior history of chronic pain.

    2) small sample groups of non-tolerant post-op patients maintained on opioid analgesics for 30 days or less.

    I use the word “rare” based on my own informal survey of experienced pain physicians. For instance, one Colorado specialist, trained in anesthesiology with a diplomate from the American Board of Pain Management (DABPM ) related his experience with managing exactly three cases of opioid induced hyperalgesia (OIH) in his 30 years of practice managing chronic pain with COT. During our discussion, this eminent physician confirmed the existence of OIH and underscored the clinical challenges involved in managing the pain in these patients. The majority of pain doctors I’ve spoken with have dealt with the inevitability of opioid tolerance but claimed no experience with OIH.

    Other side effects of chronic opioid therapy include primary hypogonadism and opioid induced contipation, both managed with inexpensive treatments that are both safe and effective. For example, I’ve been prescribed monthly testosterone cypionate injections for the past 20 years to maintain normal serum androgen levels, and have used OTC products like Metamucil regularly since I began COT in 1980.

    Opioid overdose (death caused by opioid-related respiratory depression) is still a tragic problem in America and unfortunately our solutions to date involve under treatment of pain – a standard of practice tantamount to torture – performed under the guise of harm reduction.

    People who live with daily intractable pain, refused effective treatment by their physician, should be asking the obvious question – harm reduction to whom, doctor?

    New Mexico, and every other state in the union are experiencing an epidemic in chronic pain. Instead of addressing this problem that plagues millions, we continue to explore ineffective, non-medical solutions to a very different problem – substance abuse.

    You named many of the barriers to effective pain treatment – gaps in medical education, greater access to multiple treatment modality, legislative answers to medical problems that place blame upon physicians for opioid abuse tendencies that affect a small population of all humans (and lab rats.). There are others.

    Where are the voices of the million who live in chronic pain? You ask a good question.

    We are silenced by the shame of relying on ‘addictive drugs’, a concept reinforced by mass media and now by our own federal government.

    My own voice was silenced by fear of the common American misconception that we who need opioid based medication suffer, not from severe pain, but a character disorder that breeds crime, disease, and immorality.

    To many, we have more in common with rats than our pharmacogenetics.

    For many years I supported my family as a consultant. Had my medication regimen been discovered by these good corporate citizens, some of them household names, how long would I have been trusted with their product development or intellectual property?

    There are so many in the medical profession who do not understand the physiological, psychological, or sociological consequences of untreated chronic pain, nor the personal misery of facing yet another day without adequate analgesic support. After all, we’ve all survived an acute bout with pain and survived.

    Dr. Wilks, thank you for seeing what so many deny. Effective pain treatment is a basic and essential human right**. Achieving it will require the sound of countless who have recognized the injustice and cruelty inherent in our current path of Orwellian expediency.

    Welcome to our struggle. With great pleasure and humble appreciation I heard your eloquent voice speaking for me and the millions like me. Again, thank you.

    @kwgmatthies

    ** http://www.iasp-pain.org/DeclarationofMontreal?navItemNumber=582

  15. Thank you, Maureen, for articulating the all-too-common and frequent experiences of people with chronic pain the the people who care for them. I am very sorry for your loss of your companion and loved one. Thank you, Dr. Fudin, for your reasoned and valuable blogs. Chronic pain is life-altering and debilitating. Pain stops us by grabbing our attention and derails our daily work. Serious pain cannot be simply ignored. A biopsychosocial approach in a multi-disciplined setting works best. Bob Mclelod experienced a life with chronic pain disease. Unmanaged pain becomes a disease through neuroplasticity when it is chronic pain. As unimagineably hard as these stories are to write, they can help change the future of how chronic pain is considered, researched, and treated. Please share your story at https://www.yourvoicematters.info. Together we can make a difference! Jan Chambers, President of National Fibromyalgia & Chronic Pain Association

  16. Wonderful article – thank you for sharing your very personal story. It’ so rare that we talk about the patient perspectives in this really volatile time for pain management. I certainly will be awaiting Dr. Wilks book.

Leave a Reply

Your email address will not be published.

This site uses Akismet to reduce spam. Learn how your comment data is processed.