Better Pain Management Critical for Fibromyalgia Patients, Doctors Say

Better Pain Management Critical for Fibromyalgia Patients, Doctors Say

The nature of the pain experienced by patients with fibromyalgia, how to treat it, and the importance of exercise and tailored patient care were the focus of two talks at the American College of Rheumatology (ACR)/Association of Rheumatology Health Professionals (ARHP) Annual Meeting, in Washington, D.C.

In his presentation, Daniel J. Clauw, MD, a rheumatologist and professor of anesthesiology and medicine and director of the Chronic Pain and Fatigue Research Center at the University of Michigan, focused on the nature of pain and how clinicians can help patients.

Three pain categories were emphasized during his talk: peripheral pain, peripheral neuropathy, and centralized pain. “Fibromyalgia is the poster child for this third category of pain,” Clauw said, according to a news release.

However, disagreement still exists among the medical community about how to name and categorize centralized pain. But Clauw said that clinicians should be focused on evaluating patients individually, instead of categorizing their disease state.

“You find evidence of peripheral pain, you treat that,” Clauw said. “If you find evidence of neuropathic pain, you treat that. Then find the evidence of centralized pain and treat that.”

“Instead of thinking of it as one disease, think about the factors that impact individual patients — sleep disorder, fatigue, various kinds of pain, depression, trouble concentrating,” he added. “It is also important to remember that fibromyalgia may be the tip of the iceberg. These symptoms may indicate something else.”

During his talk, Clauw stressed the over-use of opioids for managing patients’ symptoms. “The body’s natural opioid production system may be impacted in fibromyalgia, so giving them opioids could be fueling the fire,” he said.

According to the researcher, doctors should be paying more attention to centralized pain. He also noted that tricyclic drugs, serotonin and norepinephrine reuptake inhibitors, and gabapentinoids show strong evidence to treat this type of pain.

“Overall, though, we need to use drugs in a more nuanced way,” he said.

In a second talk, Carmen E. Gota, MD, of the Cleveland Clinic, emphasized the importance of exercise and personalized patient care for fibromyalgia. During her presentation, the researcher stressed the importance of non-pharmacologic interventions, in light of the increased use of drugs among patients with fibromyalgia.

“In 2010, about 80 percent of patients were taking analgesic drugs and 52 percent were taking central acting drugs,” Gota said. “Over time, we have seen an increasing use of [central nervous system] CNS drugs. However, despite the increasing use of centrally acting drugs, we do not see a decrease in use of analgesics.”

Gota also emphasized the importance and strong evidence of the effectiveness of other non-pharmacological interventions, including cognitive behavioral and multicomponent therapies, meditation, acupuncture, hydrotherapy, as well as other physical therapy methods to help patients manage their pain.

“In terms of the guidelines, the only one we had a strong recommendation for is exercise,” Gota said. “Exercise has been shown to have consistent impact on a number of domains.”

Gota also underscored the importance of a tailored approach to fibromyalgia, and the need for clinicians to identify unmodifiable and modifiable factors.

“It is important to know your patient, because that will determine how you are going to treat your patient,” she concluded. “Establish a network of collaborators who will help treat your patient, including primary care providers, physical therapists, psychologists or psychiatrists, and sleep medicine experts.”

40 comments

  1. Dianne Wilber says:

    Overall this article was validating + helpful .It made me feel more confident about the future of care for Fibro patients.

    • Tim Bossie says:

      We are so glad that the information in this article was something that could encourage you. Besides news and tips, we do try very hard to bring encouragement and inspiration to this community.

  2. PAMELA BERGMANN-KNEBEL says:

    This article just supports my view that doctors don’t really understand the pain associated with fibromyalgia when he doesn’t recommend opiods for pain. I take them PRN and could not manage without them. While the various drugs like gabapentin and cymbalta do really help, when your pain level is 8-9 you aren’t getting any relief from them only additional stress from the intense pain. I truly appreciated my doctor, a resident, who unfortunately graduated and moved, who also suffered from chronic pain and after some months of discussion agreed to hydrocodone for relief on the really bad days. I don’t agree they should be given as a regular med but PRN helps smooth out the rough spots. I now have to convince my new resident doc of the same thing! I send her articles on fibro to educate her!

    • Lynne Norris says:

      I hate having to train a new doctor to the ways of FMS! I agree that doctors dont understand FMS pain. I couldnt live without my opioids for pain relief, however. Gabapentin/cymbalta, etc., were like taking baby aspirin for me. No results at all. So it just goes to show that docs need to be open-minded to the individual because what works for one does not work for another. I wish docs & ins. companies were open to alternative therapies, too, like acupuncture. Id sure give it a try!

    • Dorothy McGinnis says:

      This is so true. I have knowm many with Fibromyalgia over the years through support groups and the exercise wish of the doctors is highly overrated. Many have been harmed in the past by technicans who were not trained in the use of exercise for us. I faithfully followed what was taught to me and suffered months of increased pain because of this. Any exercise for Fibromyalgia has to be very gentle and just a little at a time, or the pain is increased. And why is it that we see doctors saying opioids don’t help, when so many of the patients know they do.

      • Carolyn says:

        I can tell you why Doctors say that Opioids do not work on Fibro Pain.It all stems from the DEA threatening their jobs, they are scared!

        • Denise Bault says:

          You are absolutely right! Shame on them. What happened to the oath they took to become doctors? They need to fight back for their patients. Now they are regulated by the DEA, the insurance companies and any one else that is either ignorant of the facts or has or wants a “piece of the pie.” If prohibition taught us nothing, it’s that restricting ANY substance just makes the black market and drug lords richer. (There goes part of big Pharma’s slice of the pie.) Look at the money wasted on “THE WAR ON DRUGS.” That coupled with incentives and privatization of prisons alone could fund every necessary drug and alcohol rehab and leave billions leftover for health spending and education.

    • Don says:

      Thank you for writing. Reading others thoughts and experiences really helps in that you know you are not alone, which unfortunately is how many of us probably feel at times (at least I do). I have a rheumatologist that diagnosed me and prescribes my lyrica, cymbalta, plaquenil, and soma. She referred me to a neurologist/pain management doctor that now has me on oxycotin and oxycodone. The only thing that I feel gives me any relief at all is the oxycodone. I can’t tell if the other meds are really doing anything or not. It so sucks not knowing and not wanting to step on the toes of the doctor treating you so far. Sorry for venting, but what does PRN stand for? I am new to checking things out.

      • Denise Bault says:

        Don, I too have found tremendous relief with Oxycodone! PRN means to take as needed, if I’m correct. (Within the parameters of the prescription itself – i.e. take every 6 hours as needed for pain.)
        Don’t worry about stepping on your doctor’s toes. They aren’t worried about stepping on yours!

  3. Estella says:

    It stands to reason that those of us unfortunate enough to have this condition need to take a wide range of medicines and supplements. Fluoxetine (Prozac) at a high dose has helped my pain greatly, but I could not cope without opioid medicine, and to all the Docs out there, sorry, but sometimes it’s the ONLY thing that helps. It’s strange that every Doctor says opioids don’t help fibromyalgia, and yet everyone with it says they do help! Is this wishful thinking on the part of the Doctors!

    • Denise Bault says:

      It’s only wishful thinking on the part of doctors in that they “wish” / hope they don’t get flagged by the DEA for writing too many narcotic or Class 1 or 2 pain prescriptions! What a horrible way to have to practice medicine – both for the patient and the doctor!

  4. Mary Ann Meyers says:

    Exercise may be YOUR answer, but it is just another stressor and increase of pain for me. I do not take opiods, but I am tired of the happy-clappy people who continue to push exercise as the solution on people like me. I am using Quell to interrupt the pain signals to my brain. So far, so good for mr. Your exercise advice just makes me sicker.

    • Julie says:

      Hi I have been suffering with fibromyalgia for almost 3yrs now.. they all wanted me in physical therapy which I had done previously, caused so much more pain, I finally found a doctor who has had me on opioids for almost 2yrs now.. my question is what’s quell?

  5. Jessica says:

    Good evening, I have been dealing with fibromyalgia for the last 6-7 years I was misdiagnosed with neuropathy 7-8 years ago. I am literally on no medications at this point as I can not function on them lyrica, cymbalta, gabapentin, etc. They all give me horrible feelibgs, as well as they do t really help with my pain. I have a friend who came back from Colorado with some medicinal marijuana patches the contained only 1mg of thc to 5mg cbd let me tell you! I had no pain! I could still work and play with my son and do things!! I also had a indica strand (indica for those who are unaware is a body high instead of a head high) it had 10 mg of cbd to 1 mg thc. If you are in a state where medicinal marijuana is available. I highly recommend checking in on it and what other strands are offered! The lady that worked at the shop my friend went to and purchased this stuff for me actually had fibromyalgia herself and gave awesome recommendations as to why you want certain strands and how much to use. Very helpful in my opinion and so much better than all the side effects of pharmaceutical drugs.

  6. Jill Konen says:

    You people don’t get it!! I went years trying to figure out what was wrong with me. And they, The Drs didn’t and wouldn’t treat me right!! I now go to a PAIN MANAGEMENT CLINIC!!! This Man and his group have saved my life!!! Screw all this bullshit!! NO ONE KNOWS WHAT WE GO THROUGH!!! NOBODY!! I’d like to see some of these Drs try my life for a week!! I’ll tell you, you damn well will be asking for more than ibuprofen and Tylenol!!!

  7. Rose says:

    I really don’t think the people/doctors/researchers that keep saying don’t use opioids are really listening to the patients, but are being paid by the Big Pharma that make money on the drugs that don’t work for us, like Cymbalta, Lyrica, Savella…. because opioids don’t give them the big money payback! Follow the money and you will see the true story! Opioids due work for everyone with Fibro, and yes we will become dependent on them physically. But it gives us a life that without them we cannot live. And yes, I know I cannot get rid of all the pain, but it can be controlled to a level that allows me to at least get out of bed. The funding for this disease is not big enough to find a cure, nor is it really believed by the normal population as being real, so why cure it. Nothing will get done until someone who is in the news is actually diagnosed with Fibro, and makes it known. I’ve taken all the drugs that are supposed to work for me….Failed! Exercised…. Failed miserably! Yoga, Meditation, etc., they all failed! Without opioids I would have probably committed suicide by now! Still waiting for someone to find a drug/cure that works permanently :o(

    • cay says:

      I agree fully with you. the new information coming from the specialists is causing my doctor to question my pain meds and wants to try other anti depression drugs. I have had fibro for 14 years and have been at the same 2 pills a day and 3 a day during the winter months. I have tried many anti depression pills, the fact is…. I’m NOT depressed… I am in pain. I agree with you that it helps me to just function through my daily chores of a stay at home mom. I really don’t appreciate the judgment and the suggestion that we are drug addicts like a druggy on the street buying a pain pill for $5. Our pain is real and deserves respect and treatment without judgment.

    • Rose says:

      It is like you are my twin. After being forced to try all these drugs that caused me various serious side effects, and all the physical treatments that caused more pain that at times I would pass out, I finally was allowed to take opioids for treatment. I was now able to get out of bed without having to hold onto the sides because I would faint from the amount of pain I was in. After about 6 months I was finally able to go out to see the real world for a couple of hours, but still had great pain. When the doctor decided it was safe to give me a larger dose, I was finally able to feel I could handle the rest of the pain and still do the small amount of things that made me feel a part of society again! I never have been relieved completely from pain, and the doctor explained that he couldn’t do that for various reasons. But I was so grateful for him, and begged him to never retire :o) He promised he wouldn’t, but he did warn me of the addiction, and yes I’m willing to accept this. I have a life again! Like you, I’m still waiting for an acceptable cure.

  8. Denise Bault says:

    I’ve tried all of the above and I don’t care what they say about opiods, they have given me PART of my life back! I wouldn’t use them as the first line of defense, but when you reach a point where all the other meds just don’t work any more, I say, “GO FOR IT!” (I have huge plastic bins of medications that didn’t work or didn’t work for long!) I have found that exercise does help…especially swimming and yoga for me. Swimming is No.1 , as it is moist heat on the body and I’m getting vitamin D at the same time. If I didn’t have access to a heated pool, I’m not sure I’d be able to get out of bed every day!

    • Don says:

      Some friends of mine just bought a house with a heated pool about a mile away from me. I am soooooooo looking forward to that, because right now I do have extreme difficulty getting out of bed. I probably spend 3 days a week where I do not get out of bed except to go to the bathroom or finally grab a bite to eat – it’s not good. Keep the comments coming. Although they obviously don’t help physically, they do help mentally.

      • Denise Bault says:

        Don, As soon as you can, get in that heated pool and move! Don’t do a lot to start…take it slowly and make sure you’re dry and warm when you get out. If it does for you what it has done for me, you will find you have part of your life back. Good luck!

        • Don says:

          Thanks Denise! I need to finish up some things I volunteered to do for a nonprofit organization and then I will be full-time on trying to get pieces of my life back. In the new year my health must be priority #1. Getting into that heated pool will be one of the main iems on my agenda. Take care and Happy Holidays!????????????

  9. Cheryl says:

    What do you do when you do not tolerate anti-depressants AT ALL. I take Gabapentin. What other options are there? Apart from exercise and alternative therapies, which I can’t afford anyway. I lose hope most days and just roll up into a ball and cry.

  10. DONNA says:

    I agree with everyone as well. I tried living without taking any opiates for several years and it was the worst time in my life. I tried Lyrica, Cymbalta, Gabapentin, and nothing. I have so many co-mingling symptoms as well, at last count it was over 70, and when I don’t take pain medication, all my other symptoms are exacerbated. So, I really don’t know where the doctors are getting their information, but it certainly isn’t from the patients! Plus, I am considering moving back to Pgh. to be closer to my son, and his needed help, and I am really afraid I will not be able to find a doctor to prescribe the pain medication I need, and will need even more up in the ever changing weather.
    Exercise is another problem for me as well, I have tried all types of time limits and exercises and no matter what it also makes things worse for me.

  11. Cheryl :) says:

    The fibro fog made me forget to mention that I also take Cocodamol. It is the UK’s opioid. Docs here are more apt to give a Fibro patient opioids because they are more aware of the chronic pain that comes with it. Without pain pills I would NOT be able to move as I tried Cymbalta, SSRI’s, SNRI’s, Trycyclics and I do not tolerate those AT ALL. I’m moving back to USA next week and will have to navigate through the horrible American healthcare system and try to find a Doc that will prescribe me pain pills. I hate that Docs politicize our illness and deny us what WE find WORKS for us. So I will be requesting Pain Mgmt, see what they say… I really want to find those CBD patches as I hear they DO work. I’ll be in CA, so I’m sure I’ll have luck in that regard. But I am NOT looking forward to schlepping around looking for a Doc that is knowledgeable in FMS/CFS… Ugh… Wish me luck, peeps!

  12. E. Scarborough says:

    I agree with most on here; without my pain medication I would not be able to stand the pain. I have been diagnosed with fribromyalgia for almost 8 years and it took almost 3 years to find the right combination of medication for me. We are all different and medications affect us differently. I could not take Lyrica or Cymbalta because they made me so dizzy. But, percocet at 5mg/3xday just wasn’t getting me through. I wanted off the pain meds not to be taking more ir getting addicted to them. I did a lot of research and ended up talking with my pain management doctor about taking suboxone. I know most people use this as a drug rehab to replace the opioid and to help deal with adduction. However, there addiction re other countries that use suboxone and methadone as pain medicine. Also, there were lots of fibromyalgia patients saying how much this had helped them, so I wanted to try it. What a change it was for me. I’ve been taking it for a little over 3 years now. Once I switched I was then able to take the Lyrica, it didn’t make me dizzy when taken with the suboxone. It was the percocet that was doing thathe when taken with the lyrica. Now if I don’t take the Lyrica I still get sore in my joints and have more fatigue then when I do the take it. Basically I couldn’t function without either. Together I have less “bad fatigue ” days and you pain is managed much better. Now, I still have pain in my back,neck, knees, and arms and hands; but it’s not as bad and as long as I am careful not to do to much I’m okay. Before I couldn’t do anything without being in intense pain and I had 3-4 days a week that I couldn’t even get up, Now, 1-2 days a week. I still can’t work, but I am a single mom with 3 kids, with my meds I can take care of them enough. I don’t understand how these doctors think that pain meds aren’t the answer. I know that they answer re over prescribed and abused by many. But when you have a real documented case of chronic widespread pain and and a doctor says take a tylenol or ibuprofen, that’s ridiculous! That wouldn’t touch my pain. I take those for headaches and swelling, that’s all they’ll help me with. If I take 5 MG percocet and all it does is lessen the pain from a 9/10 to a 4/5,but if I do ANYTHING I’m now in pain again; then that says to me the meds not enough!Not that pain meds aren’t needed again ND i should exercise! If I exercise again need move around like that, if i don’t have to stop from the pain, ok maybe I’ll feel ok or even a little better in the moment. But boy will I pay for it later! I tried to use a ten’s unit on my back and neck, which my doctor gave me; it felt great while I was using it. Later that night and for 2 days and ter I was in so much pain I had to stay in bed most of the time because if I moved the pain was unbelievable. These doctors don’t know what they’re doing half the time. This disease has confused and fiend baffled them for decades, they’ve made progress but we are far from answer.The one thing I got truly right is that doctors do need to know their patients and they need to treat us individually, because we all experience it differently and our body’s react to the medicines differently. I hope you all find the doctor who will listen to you and help you explore to find the right combination of meds that will help you as mine have. I’m far from better, but I’m functioning at a level that works for me. God bless!

  13. Tanny says:

    I’ve had FMS for over 30 years and worked as an RN until 2013 when I was kicked off my Pain Clinic (8 yrs, effective care) after a hospitalization for depression. I have dutifully taken all the suggested new drugs over the years, was able to do some complementary therapies with my income and spent a month at a Boston rehab pain program with some success. When I was treated with opiates I was able to work effectively, was not high, never broke my contract. I was also able to care for my son who died of cancer in 2012 (I was a hospice nurse). I tried a different pain clinic where the staff was empathetic but offered the Lyrica/Savella/Cymbalta options which were ineffective so I ended that plan.
    As a result of losing my effective pain management, my career of 40 years has ended and I am now on disability.
    My SSDI is for depression which is a lifelong struggle but one I was able to manage pretty effectively. As all FMS patients know, it is difficult to get approval for FMS alone. I’m now managed only by a psychiatrist who has a background in palliative care and a DO. Neither will consider opiates for me because of my depression and because they both believe opiates ultimately increase fibromyalgia pain. My state has approved medical marijuana but a consult costs $250 and the MJ is out of pocket making it out of reach for me.
    I share everyone’s frustration with the effect the “opiate wars” are having on chronic pain patients and doctors opinions about our need for these meds. I had in depth knowledge of these meds before I went on them because of my work with terminal patients. I understood the risks and danger signs, was able to be an involved patient and report issues effectively. I asked for decreases and med changes to improve my quality of life. Because there are so few options for us, pain management, when done well, is a lifeline back to some semblance of normal.
    The suggestions in this article are the same old same old I’ve been offered for years. Same meds, same exercise, same out of pocket therapies I can’t access. The bottom line is that research and treatment dollars are woefully limited for a syndrome affecting millions of people and our anecdotal experience seems to matter far less than medical fears of the DEA and Congress. I expect our lot to worsen as we see changes in our insurance options controlled by a government and insurance industry that doesn’t care about patients as much as it cares about the bottom line.
    At 61 and after 30 years of pain, minus my 8 years of balance, I don’t expect to see progress in my lifetime.
    As a nurse who has years of experience relieving pain for patients it is heartbreaking to have the option denied for those of us who face every day not knowing if we will be able to function or not.
    I wish there was a fibromyalgia virtual reality doctors and NPs could use to experience a week in our lives. Maybe then there would be a better sense of our lived experiences since our endless reporting seems to count for little.

    • Tim Bossie says:

      Hi Tammy. Thank you very much for your comment. We do agree with you that there needs to be drastic improvements in the way that research progresses and the medical community as a whole is made more aware of fibromyalgia. This illness is something that, when strikes, leaves a wake of damage for the rest of that person’s life. The pain, the limited mobility, missed family gatherings, enduring comments made about being a hypochondriac and then subjected to a litany of do this, do that… that doesn’t change and do not work for many. We feel your pain. We can only hope at this point that there will be some rapid improvements in research and awareness. And… the VR tech is available, and with the new push on more individualized, personal healthcare, your wish just may come true.

    • Jill Konen says:

      I went to a “Pain Dr”. He did diagnose me with FIBRO and started me on Lyrica. That’s the only good thing he did for me! He wanted me to drive to his office 3 times a week which was 2 hours away!! So drive 2 hours, 2 hours of CBT and 2 hours home!!! No way!! I couldn’t even do that staying in my home town!!
      Anyway I ended up finding a PAIN MANAGEMENT CLINIC!! They saved my life!! Also I had a Rhuemi that did absolutely nothing for me! The last time I saw him he told me I had to learn to live with the pain!!!! WTH?? Aren’t they the ones you’re supposed to go to! I said….I can’t!! And I won’t!!!
      This was the first time I ever thought of suicide in my life!! I had time to think about that driving 2 hours home. All I had to do was think about my son. I could never do that to him!!
      That’s when I found the Clinic!!! I no longer go to the Rhuemi either!!

  14. Wendy says:

    Hi.
    Thank you for the opportunity to comment. I believe SOME doctors are trying to help. My doctor is not one of them. I am being under-treated with Voltaren gel and OTC Tylenol. My doc is unwilling to test for co-morbid conditions. There are many studies that document very frightening effects of under-treated chronic pain. There is a lot of info out there about why the top 3 fibro meds don’t work. If CBT was effective, it would help with health conditions ranging from diabetes to the common cold. As a Medicare patient I am appalled with the quality of healthcare available… My experience has been cookie cutter family practice buried within “community” health centers. No quality doc wants to be underpaid by Medicare along with the billing nightmare. As for the opiate debate, this website http://nationalpainreport.com/are-opiates-really-that-bad-for-fibromyalgia-8829589.html states “Since no large trials have been done, the recommendations against opiate use for fibromyalgia are based on data from less than 100 subjects!” I SERIOUSLY NEED A PATIENT ADVOCATE. My “community” health center doesn’t have one. I can’t find an affordable advocate,as I have lived below the federal poverty level for 25 years due to a previous disability. ANY EFFECTIVE HELP OUT THERE??? Right now the temperature is 11° and I am at a level 5… not looking forward to an under-treated winter season. It bums me out to no end that my neighbor’s dog got pain meds for a torn claw, when I am being treated like less than a dog. I am in Colorado Springs. Thanks.

    • Denise Bault says:

      I feel for you Wendy! Since you’re in Colorado, have you gone the medicinal marijuana route? Have heard from lots of folks that it does help! Need to talk to the folks at the dispensaries to find the strain that will help fibro patients the best. Good luck!

      • Wendy says:

        Thank you, Denise for your kind response. Right now applying for a MMJ card is not financially feasible for me. I look forward to the day when MMJ is nationally recognized as a viable medication; when it is declassified as a controlled substance; and when medical insurance companies include it in their coverage — thus hopefully making access more affordable! Take care, and thank you again for taking the time to respond.

        • Denise Bault says:

          Wendy, I feel for you! They FINALLY passed medicinal MJ here in Florida. I went on line to see what doc to go to. Was pre-screened, called for an appt., was told I qualified and was then told the cost. First visit was $300, then they need to be followed up by two more visits, each a month apart at $150 each! So, 3 months of visits, $600 of money I can ill afford (not covered by insurance of course,) and then MAYBE there will be a dispensary in my area in the next 6-18 months. Are you kidding me???? Folks, if I ever hit the lottery, my first altruistic move will be to set up funds for patients who have fibromyalgia and are fighting for disability, trying to pay medical costs or trying to get medicinal MJ!!!!!! Come on lottery! 🙂

        • Amy says:

          Please correct if I am wrong, but can’t you buy ‘recreational’ marijuana in Colorado now? It was my understanding that anyone can go into a store that sells MJ and buy what they want. I have even considered moving to CO because GA will never approve medical MJ and, if it does, it will be cost prohibitive like most states. If you don’t need a doctor, though, you just have to deal with the dispensary costs which should be coming down due to competition. Is this not correct? I have been on opiates for about 7-8 years because it was the only thing that worked. I also take Cymbalta and Wellbutrin – but I have run the gamut of all of the drugs mentioned on here without any relief. Recently, I did get the awful experience of what my life would be like if I could no longer get the opiates. My kids think it’s all in my head and that I can’t take care of myself and am ‘addicted’ to drugs, so they forced me to commit to an inpatient psyche facility where they stripped me of my rights to refuse treatment, and took me off of everything except the anti-depressants….cold turkey. When I finally got over the withdrawal symptoms and the IBS flare it started which resulted in a loss of 24 lbs. in 9 days, I had 3 weeks to go before I could fill another prescription for pain meds (since the facility confiscated mine). Those 3 weeks were hell!! I didn’t realize how much worse I had become since my decision to take long term opiates. I was going about 3 days at a time without any sleep because I was in too much pain to be still for more than a few minutes. If I hadn’t been able to restart my treatment, I would have died from the side effects of the increased pain and sleep deprivation. It is dangerous to not treat this kind of pain. I so wish my kids could have to live with this for a month and see how they handle things. To say the least, I am not speaking to them and maybe never will after what they did to me. When I checked myself out of the facility, I became homeless despite having relatives in town – none of them would help me out or take me in. Thankfully, I have a tremendous church family who helped take care of me and I have now found a room to rent in a house with a friend of a friend so I have some help, some sympathetic company and a new adopted family that have restored my soul! I wish there were alternatives, but I have tried everything and it takes a combination of it all to make life work and to keep me working part time since I have no way of waiting for disability to get approved. It’s really sad that the insurance companies, government and the media feel that they should create these problems in a community of patients and doctors who can work together to find a way to help us get by. I am so sorry for all of you who suffer. I wouldn’t wish this on my worst enemy….except for Satan, maybe. Keep communicating with fellow FM patients. I think it helps to be able to vent our frustrations to someone who really knows what it’s like and it is important to know you are not alone as well as getting new ideas of things to try. Gentle hugs!!

  15. cay says:

    I agree fully with you. the new information coming from the specialists is causing my doctor to question my pain meds and wants to try other anti depression drugs. I have had fibro for 14 years and have been at the same 2 pills a day and 3 a day during the winter months. I have tried many anti depression pills, the fact is…. I’m NOT depressed… I am in pain. I agree with you that it helps me to just function through my daily chores of a stay at home mom. I really don’t appreciate the judgment and the suggestion that we are drug addicts like a druggy on the street buying a pain pill for $5. Our pain is real and deserves respect and treatment without judgment.

    • Tim Bossie says:

      Thank you for the comment Cay. It is great to hear from our readers and their real life struggles. The unfortunate truth that surrounds fibro is that the pain is all in your head or easily controlled by Tylenol. The constant, “What’s wrong?”, gets old and causes even more stress. Pain management is something that we need to seriously look at (better methods) in order to deal with not only the pain, but the stress of dealing with others.

  16. Katie M. says:

    I’m sick and tired of them lumping every fibromyalgia patient into one group, and a one size fits all mentality that doctors have about it, and the cookie cutter approach they use to treat and medicate the symptoms. While I’m sure there are many who benefit from Lyrica, Gabapentin and other treatments, the problem comes when none of those work, and general therapies and treatments don’t work either, and the patient is left bed ridden in pain and cut off from their life.

    There is an ongoing fear mentality that has gripped doctors and the healthcare community when it comes to the prescribing of narcotics and/or opioids for pain, and this fears overrides the concerns and care they should have for their patients, who are now left suffering, and who’s lives have become more restricted and limited.

    No other illness is this ignored, or this misunderstood, yet rather than treating each patient in whatever way they best respond to, doctors stick to rigid fibromyalgia guidelines that are leaving more and more fibromyalgia patients out of options, and without hope for any sort of meaningful life.

    Were we cardiac or cancer patients and doctors treated us with this one step, one option only treatment, there would be an outcry from the general public. However, when pain becomes the central issue or symptom of an illness, then those patients are left flapping in the breeze, watching their lives waste away, year after year after year.

    Pain has become a dirty word, a catch all for all the other ills in society surrounding drug dependency, drug addiction, deaths from overdoses and drug crimes, all because of a mistaken belief that the two are somehow related. Even when statistic after statistic shows there is little to no correlation between the two, patients who are suffering from pain are left untreated and out in the cold, in favour of providing government funded rehab clinics, needle exchange programs, safe injection sites, costly methadone clinics for addicts, and now the biggest scam of all, and tax grab, the legalization of marijuana with no form of guidelines about THC levels.

    It seems our governments have taken no notice of the psychosis and addictions surrounding “super pot”, or how they plan to keep smokers from driving, or any other safety cautions or health measures, but if you’re suffering from pain, you’re on your own.

    Fibromyalgia patient numbers have been growing over the years, and had this started out as a male dominant illness, not only would there be more progress made by now, more compassion given from the healthcare field, every effort would be made to put men back into the work force and to increasing their productivity, and improving their lives. It may sound sexist, but hey, if the shoe fits, right?

    Recent scientific findings, found that women experience pain more acutely than men, which definitely doesn’t help this cause either. Women make up the majority of fibromyalgia patients, 90%+, and now as it turns out, they suffer from pain more acutely than men, a double whammy. This leaves women in even a more precarious position in society, as opioid laws have become more draconian, and pain treatment options are greatly being reduced or eliminated depending on where you live.

    Perhaps one day, society and doctors will realize that as women, it is also their children, their families and their communities that are suffering from their absence, because these attitudes ignore the very nurturers they count on and rely on.

    I didn’t mean to drone on, but I’m sick of hearing this crap for the past 20 years, and having the life I struggled to achieve, the activity levels I worked so hard to gain, to be utterly ignored and overlooked in favour of hearing doctors say, “opioids don’t help with fibromyalgia pain, so we’ll no longer be prescribing them.” SAYS WHO, DEFINITELY NOT MY BODY!

    After walking and exercising every day for almost 15 years, I am now racked with pain every day and pretty much bed ridden, even though I’ve tried every drug, every therapy, every bloody suggestion from doctors from day one, and at least twice. Well, apparently we need to run the gambit again according to doctors. When the hell did I become their guinea pig?

    Hippocratic Oath my ass, it’s more like a sexist, hypocritical oath and ethical misconduct if you ask me.

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