Fibromyalgia now considered as a lifelong central nervous system disorder

Fibromyalgia is the second most common rheumatic disorder behind osteoarthritis and, though still widely misunderstood, is now considered to be a lifelong central nervous system disorder, which is responsible for amplified pain that shoots through the body in those who suffer from it. Daniel Clauw, M.D., professor of anesthesiology, University of Michigan, analyzed the neurological basis for fibromyalgia in a plenary session address today at the American Pain Society Annual Scientific Meeting.

"Fibromyalgia can be thought of both as a discreet disease and also as a final common pathway of pain centralization and chronification. Most people with this condition have lifelong histories of chronic pain throughout their bodies," said Clauw. "The condition can be hard to diagnose if one isn't familiar with classic symptoms because there isn't a single cause and no outward signs."

Clauw explained that fibromyalgia pain comes more from the brain and spinal cord than from areas of the body in which someone may experience peripheral pain. The condition is believed to be associated with disturbances in how the brain processes pain and other sensory information. He said physicians should suspect fibromyalgia in patients with multifocal (mostly musculoskeletal) pain that is not fully explained by injury or inflammation.

"Because pain pathways throughout the body are amplified in fibromyalgia patients, pain can occur anywhere, so chronic headaches, visceral pain and sensory hyper-responsiveness are common in people with this painful condition," said Clauw.

"This does not imply that peripheral nociceptive input does not contribute to pain experienced by fibromyalgia patients, but they do feel more pain than normally would be expected from the degree of peripheral input. Persons with fibromyalgia and other pain states characterized by sensitization will experience pain from what those without the condition would describe as touch," Clauw added.

Due to the central nervous system origins of fibromyalgia pain, Clauw said treatments with opioids or other narcotic analgesics usually are not effective because they do not reduce the activity of neurotransmitters in the brain. "These drugs have never been shown to be effective in fibromyalgia patients, and there is evidence that opioids might even worsen fibromyalgia and other centralized pain states," he said.

Clauw advises clinicians to integrate pharmacological treatments, such as gabapentinoids, trycyclics and serotonoin reuptake inhibitors, with nonpharmacological approaches like cognitive behavioral therapy, exercise and stress reduction.

"Sometimes the magnitude of treatment response for simple and inexpensive non-drug therapies exceeds that for pharmaceuticals," said Clauw. "The greatest benefit is improved function, which should be the main treatment goal for any chronic pain condition. The majority of patients with fibromyalgia can see improvement in their symptoms and lead normal lives with the right medications and extensive use of non-drug therapies."

Source:

American Pain Society (APS)

Comments

  1. Joelene Didora Joelene Didora Canada says:

    I have been suffering from this for 20 years now and still haven't found anything to help me cope with the pain.

    • bonna weinstein bonna weinstein United States says:

      Dear Jolene... I feel your pain. I too suffer this curse for almost 15 years with severe fatigue and debilitating pain I do not wish to Anyone else. I take Tramadole (a prescription med.) three times a day. It helps more than tjust aking the edge off.  I can actually function. You may want to give it a try. Hope you find some relief.... Best of luck !

      • Donna Zegalia Donna Zegalia United States says:

        I have been on tramadol for about 7 years. Its the only thing that really works for me. I've tried all the other stuff and nothing helped. I also get myofascial release which has been helping, also. I also take Ultra ER at night otherwise I wouldn't sleep.

        • Janet Thompson Hurguy Janet Thompson Hurguy United States says:

          I've been on Tramadol for eons...it doesn't seem to do a thing. I've tried many, many things. I finally tried Plexus products which really worked but unfortunately, I can't afford to keep buying the Plexus products. I wish natural stuff was covered by insurance like prescription meds.

      • Mary-Rose Wilson Mary-Rose Wilson Australia says:

        I was diagnosed with Fybromyalgia and associated chronic fatigue in 2001. I was working as a secretary which involved mainly keyboarding. I was in a very stressful environment. Once I gave up my position as a typist and got out of that stressful environment, I started to improve. Winter is the worst, so stay warm. Have hot baths to to relax your muscles. Pain increases pretty much after doing physical chores. Take magnesium to relax the muscles. Do a low impact exercise program and get plenty of sleep. I manage my condition very well but also have flair-ups from time to time. I also see a physio for some relief when flair ups take place.  Your physio will give you the correct exercise program to maintain your strength. This is so important to keep strong. The less you use your muscles, the weaker you become. This is just some advise as we have to learn to live with the condition, so we have to manage the symptoms and give ourselves the best shot at living a normal and pain free life. Don't give up! Mary-Rose

      • Kari Shutt Kari Shutt United States says:

        I also take tramadol every night. It does help. On really bad days when I can't get out of bed then I will have to use my Vicodin...

    • Donna Craig Donna Craig United States says:

      Joelene, I have had it over 30 years.  Everything they give me for pain causes me to be so tired and it really doesn't do much for the pain, I would rather go without than be so tired all the time.  I keep praying they will come up with a miracle.

      • celeste ingram celeste ingram United States says:

        thc treats this magnificently, did you know if you carry the gene for it, when your young if you get seriously hurt, it will show up, almost immediately, I've been dealing with this for almost 20 yrs., lived with it for 10 yrs. before I tried that,.... I'm 28

        • Karen Chervinskis Karen Chervinskis United States says:

          Hi Celeste, do you know where I can find more information on your statement?  I was in a very serious car accident, when I was 14.  The majority of my injuries were in my neck and head.  I had 156 stiches in my head.  About 3 or 4 years later, I was going to the doctor complaining of fatigue, and pain in my shoulder and back.  Reviewing my chart, I was given pain meds and muscle relaxers all these years.  However, I was never given a diagnoses.   Moving forward, my condition has become unbearable physically, mentally and emotionally.  I was in the dental field for 32 years, and resigned my position in June 2013.  This is when I was diagnosed.  Fibromyalgia has hindered my ability to live a normal life.  My insurance is with the military, so my providers can be changed at anytime without my knowledge. I am not able to see a specialist, so my pc is attempting to treat me.   That being said, I am trying to find articles that might help him treat me.  What is thc?

        • Ellen Gershenbaum Ellen Gershenbaum United States says:

          Weed (thc) does not make the pain any better; it just makes you care a little less, which is fine with me.  it is no panacea.  the truth is, nothing works.  they have no answers,  whatever you do, DO NOT take what they suggest in the article...gabapentin (neurontin)is an EVIL drug and doesn't work...it's for sciatica.  made me gain 50 lbs in a yr and my feet swelled up like balloons.  my right foot is still fucked up.  google it and see.  lost half the weight, trying to lose the other half.  been thin my whole life until i took that drug, and the pharma co's are laughing all the way to the bank, thanks to us.  docs hane NO knowledge of the side effects of these meds.  Take this, take that, and you live with the horrendous side effects.

          • Teri Wilson Teri Wilson United States says:

            I was just recently diagnosed with fibro and my Physician put me on Gabapentin. I've been on it for almost a month. We went over the pros and cons of four different medications and I chose Gaba. Due to my research it seemed to have the least negative side effects, plus it was supposed to work for RLS, which I suffer from. Initially it seemed to help within the first week or two, now nothing. I am back to waking up every night due to the pain. The one thing that it has helped is giving me mental stability, for which I am grateful. I have actually lost ten pounds since I've been on Gaba, I don't seem to have the bored, or depressed eating needs anymore. So, for me, I have liked the benefits of it but it doesn't help with the fibro. Sigh...

            Several years ago I had a knee injury and took Vicodin, that helped with my all over pain but my Doctor won't give that to me. I'm frustrated and I'm just starting this journey -- not with the pain, but with finding some sort of relief....

            • Cindy Charamut-Glines Cindy Charamut-Glines United States says:

              Right now I take 2700mg of Gabapentin, 225mg of Effexor, 50mg of Topamax twice daily, 1mg 1 1/2 Klonipin at bed, 10mg Ambien at bed, 10mg Lisinipril, 10mg Simvistatin, 40mg omeprazole, 20mg Loratadine and 50mg Robaxin twice daily. I have Osteoarthritis, Degenerative Disc Disease, I have Bariatric surgery and lost 107lbs, TMJ and I am have surgery on the right side of my jaw on Dec. 3 because it is dislocated and the Trigeminal nerve is pinched (very painful),knees are shot right one really bad. I recently had an incident where I thought I was having a stroke speech was really bad and the headache was terrible it was my Fibro and that is when my Topamax was increased I was scared to death. Four and half years ago my fiancé passed away and I found him sitting up on our couch he was 50. The trauma made my Fibro worse and it has not stopped since. I also was in a motorcycle accident 11 months after he died on his motorcycle. I had a nervous breakdown at my job 8 months after he died and I cannot work because of my physical and emotion health. I have always worked  many years 2 jobs or self employed owning my dog grooming businesses. I am only 53. Depression, anxiety, PTSD,Pain,Frustration,New symptoms,relationship issues and losing friends and especially having family walk away and I don't know why. I hate Fibromyalgia and being in pain fronted to toe everyday. And the worst is having to say I don't feel good and knowing even my boyfriend doesn't get it. It is not like I stubbed my toe. I see a therapist every week since the death of my fiancé and she is great. But year after year of this illness is hard. I have great doctors but this illness is  so unpredictable. I just wish you all the best with your battle. Relief is a hard thing and I have no answer. Understanding is what I wish I had from family and friends.

              • Denise Wadsworth Denise Wadsworth United States says:

                Cindy, I have almost all of those symptoms and then some like Rheumatoid Arthritis so trying to figure out which one is flaring is a chore. I am so sorry for your loss. Dealing with this disease alone sucks, I have had it for 30 years so I know some of my warning signs.  If you need to talk just let me know and I will send a phone number or Facebook message me. Here is me sending you a big hug through the wires.  Have a happier day.

              • Captain Jack Captain Jack United States says:

                I suffer from Hashimoto's Thyroiditis and Fibromyalgia and have had Fibro pain ever since 1975 and there has only been a handful of days in all these years where I was actually pain free.  I too have tried everything under the sun and then some and it wasn't until recently I saw a pain doctor.  He initially put me on extended release flexeril (Amrix) and it made me feel worse so I quit taking it and looked it up only to discover it was just extended release flexeril which I had tried multiple times in the past so then he put me on percocet and it is the first med that has given me some relief.  I do not take the entire pill, I cut them in thirds and only take 1/3 in the AM and rarely do I have to take more than that. It doesn't relieve the pain in its entirety but it deadens it enough so that I can function.  I try to go to the gym to exercise and I pay for it for several days just with a 45 minute light workout. I know the addictive risks of opioids but as far as I'm concerned the benefits outweigh the risks. I understand your pain and if those who have abandoned you could only experience what we go through for a month they would look at it differently.  Trust me, multiple doctors and every med that you could conceive of was tried on me from Xanax to antidepressants all of which made things worse for me.  Honestly I would rather take nothing, but I have tried, and things become unbearable.  I wish you the best and hope that someday there will be something to rid this horrific illness.  Feel free to contact me, it would be interesting talking to someone else with the problem to see what they're experiencing.

    • Joanne Wallace Joanne Wallace Canada says:

      I hope this helps - I have been prescribed 10mg of Citalopram Hydrobromide (Celexa) and 60mg of Amitriptyline HCL (Elavil). They are both anti-depressant medications and they have given me back my life.  I still have pain and tingling and such but it is manageable.  I am able to hike with my dog and laugh again with my children.  My sister-in-law is an RN nurse practicing in pain management and she has also seen success with Amitriptyline.   Good Luck!

    • Alexandra Smith Alexandra Smith United Kingdom says:

      I've been suffering for nearly 40 years since a viral meningistus attack. The ME has been with me since then, only coupling up with Fibro pain for the last 8 years. I now have cerebella atrophy and am on all the pain killers possible but nothing completely kills the pain. Lately I've started taking codeine at night with paracetamol, both on prescription. It lowers the pain enough for me to sleep. Most of the pain is in the legs when attacks come and I've recently started wearing support stockings which also ease the pain during the day. Keep up your fluids as we tend to be low on that. Take the advice of Ali Hill below and get the amino acid and high vit B12 supplements if you can't get the B12 injections from your doctor. Don't go on an extremely low salt diet as this is something we are also short on. No fat diets are also bad. Keep a small level of good fats going, Virgin Coconut oil, butter, little bit of fat on meat. Don't cook with the coconut oil, put it on toast, it's not strong flavoured. Lemon and honey in warm water in the morning for the liver, I find this works for me.

    • Emer Dunne Emer Dunne Ireland says:

      As the article suggests the non drug therapies such as essential oils can help with fibromyalgia. Oil such juniper berry, lavender, roman chamomile, marjoram are a few that I've recommended for my patients with Fibrmyalgia, i'm a physical therapist and they get some relief from using these oils along with PT treatment... Hope it helps.

    • Sharon Smolka Sharon Smolka United States says:

      I've live with fibro. for 30 years now. I've fought hard to stay off of narcotics because so many get addicted to them. What has helped me the most is exercising/swimming in a warm water pool. Also physical therapy during a bad flare.

    • Elizabeth Hewitt Dawes Elizabeth Hewitt Dawes United Kingdom says:

      My Husband has recently found out hes got this awful illness and I hate seeing him in such pain but I'm glad to say I signed a petition to get a Patch put on NHS. The patch is called ACTI PATCH you can buy it at your big Boots  it is pricey but worth every penny it last up to 720 hours and costs £16.00, if you purchase one try get the one with the belt as the patch its self comes on it's own for same price. Since my Husband has worn his and only takes it off to bath I can honestly say it WORKS and I'm pleased to see him smile instead of looking in so much pain, like he tells me the pain is there but NOT as bad and most of all it's chemical free so ya not damaging your organs and your not putting chemicals in your body. Good Luck if you try it.xx

    • Mary Miller Mary Miller United States says:

      We are individuals, and because this condition is still considered a "syndrome", meaning more than one way to get this condition,  still means, there is no one way to 'attack' fibro pain. Saying this, does not mean don't try anything that could help.  It's clear from this article, that they want you to not use opioids or other analgesics for pain, but for SOME this is the only relief they get.  It's a new "deal" now to pull everyone off of opioids, and in some areas, (like Montana) they will not even bother prescribing them for fibro.

      Personally, having spent years involved in the "fibro fight" since 1986, I can tell you that opinions (and findings) come and go.  Very few people btw, get any relief from Lyrica (which I believe is the aim of this article is intending when discussing peripheral pain, otherwise known as neuropathy.  The statistics on this drug are not well liked by users:  less than 20% find any relief from this drug, because it just doesn't cut the pain, leaves people groggy, and unable to function.  The older method of SSRIs, and SNRIs are also a problem for many, because of something called "serotonin syndrome" that doctors know little about, but is life threatening.

      There are many non allopathic methods suggested here (amino acids, Acti Patch, not in the US, essential oils, acupuncture, et al), so I am adding in my voice:  cannabis.  Yep, the dreaded word.  As with anything suggested here, what works for one, may not be the answer for you.

      There are blends of cannabis strains (called hybrids), that can relieve pain without getting stoned (HIGH CBD, low THC) but you need enough THC in the plant so you get pain relief.  No one is advocating getting stoned. No one is also advocating smoking it either.  Cannabis can't kill you.  A factor not found in Opioid treatment (remember I said something about serotonin syndrome?  This is part of the problem with over dumping the system with serotonin leaving the person with severely high temperature, nausea, vomiting, diarrhea and systematic shut down).  

      As someone who managed NOT to die from serotonin syndrome, what I can say is that I am only left with cannabis as a treatment specifically to deal with pain.

      I would highly suggest before attempting anything alternative, to find a good practitioner, naturalpathic, homeopathic, nutritionist, herbalist, or complimentary medicine doctor of any kind that is best able to suggest YOUR course of action based on YOUR body, and your fibro.

    • Denise Wadsworth Denise Wadsworth United States says:

      I've had Fibro for 30 years and I've been on several drugs for it. Despite what others have said about Gabepentin I was taking 3600 mg per day and finding relief. I am now only on 1800. I also found a nice muscle relaxer called Zanaflex or Baclofen that work for me. Fibro is definitely a trial and error disease. Although I also have on board Rheumatoid arthritis so some days are suicidal days. I am on so many meds that I can open up my own pharmacy. Keep trying I know you will find relief soon, I hope. If you need to talk further let me know, I find that just venting to someone does a world of good.

  2. Ali Hill Ali Hill United States says:

    Dr. Brice Vickery has the best treatment plan available! His supplement of essential amino acids has truly changed m life! The amino acid supplement took away 99.9% of my pain and has helped leaps and bounds with my digestive disorder. Every person who reads this, please go to drvickery.com and read what this man has to say about his findings on fibromyalgia. Then order the platinum plus essential amino acids. You won't regret it. It is life changing!!!

  3. Kay Livings Kay Livings United States says:

    I don't agree that pain meds don't help! Doctors and others have no idea what the ones of us with these chronic conditions like fibro and/or osteoarthritis go through and the amount of discomfort and pain we live with 24/7 unless they have walked in our shoes. When I wake up in the morning I can barely move and am totally slumped over when I try to walk over to get a cup of coffee and take my medication. I have to sit down for at least an hour before my medication kicks in and when it does I am finally able to move around and get a few chores done around the house until I reach my limit and have to stop and rest for a little while. If not for my medication, which the doctor only prescribes me a small amount of, I would be bedridden and would not survive for very long. The medication doesn't work as well as it did in the beginning because I am building up an immunity to it but it still takes the edge off and makes the pain and discomfort a little more bearable. If someone can come up with something that is comparable or better than the pain meds I now take, I would certainly be willing to give them a try. It's really a tragic situation that the medications were developed for people with chronic illnesses and disorders and now it's almost impossible for those people to get them because of those who are fraudulently receiving them for the purpose of selling them or taking more than prescribed in order to get high and overdose! Because of their own bad choices the ones of us who truly suffer and need the medication are being punished and having to suffer needlessly!

    • Sue Piontek Sue Piontek United States says:

      Please email me at [email protected] and I can let you know what might help.  Thanks  Sue

    • Gerald White Gerald White United Kingdom says:

      The anti inflammatory diclofenac slow release and painkillers work really well. 75mg diclofenac one or twice a day.

    • Lauren Kyber Harrison Lauren Kyber Harrison United States says:

      Kay, I couldn't agree with you more! I am so tired of having my medications so tightly regulated and controlled by the DEA that I sometimes feel like a criminal when picking up my prescriptions! Even though researchers and doctors have long known that people with chronic pain issues do not "get high" when taking opioids to relieve their pain we are still being stigmatized because of the illegal actions of others. God forbid that I ask to refill my prescription a day early because it is more convenient to do all of my errands in the same afternoon. Oh Hell no...I have to wait until the next day before I can pick it up because the DEA says that I cannot have more than the "allowed" number of tablets in a 30-day period! Never mind that on many days just getting out of bed is a big accomplishment.

      • Jackson Bassett Jackson Bassett United States says:

        It doesn't even matter that people use them to get wasted.  The real issue is that they are so tightly regulated that the people the medicine should be intended for can't get them without a total hassle.   It is a sad state of affairs, but we elect this government so, it is the best we can do.   I hope we all feel better and find the magic pill or treatment soon.

      • Sue Ash Sue Ash Canada says:

        I am on oxycodone myself for fibro and I live In canada and dr's look at you like ur some kinda drug addicted, thank god my family dr is really good and understands, I cannot take any inflammatory medicines as I have kidney disease so only option oxy's ..I cannot take any of those fibro meds either as I have tried them all ..this disease sucks Frown

        • Sharon Hall Eskew Sharon Hall Eskew United States says:

          I agree Sue. All three 'Fibro medicines' tried, all three gave me allergic reactions! The Doctor told me to 'Get used to the pain, because I don't know what else to try.'  I stopped going to him. Found a Nurse practitioner who has been trying to help me, but she just moved 3 hours away. Now I have to get used to a new doctor, and explain all of this crap again! Some days it just isn't worth trying to chew the restraints! lol

        • Spring Griffin Spring Griffin United States says:

          I have also tried Gabapentin and Lyrica. I am allergic to them Both, I woke up Gasping for air Twice while on Lyrica. My Neuro wants me off the Percoset but it's the only thing I have found that takes the edge off so I can Partially function. I haven't worked in a year now(School Bus Driver) I can't imagine trying to go back to work without pain meds and I won't and can't drive while on this Med. I tried Tramadol and It had No effect on me. My Pain Dr. is going to continue the Percoset with Cymbalta and Zanaflex just to keep me fairly comfortable. screw what the Neuro says...He is not the one living this Nightmare.

    • celeste ingram celeste ingram United States says:

      its not that they don't help, they just don't work to their full effect,..

    • danielle clarke danielle clarke United States says:

      I completely agree with you! I have to take to different pain meds everyday because of my chronic pelvic pain, but it is the only thing that helps my fibro pain as well, I have taken everything along with changing my food life style and completely quiting smoking and drinking 8 years ago 2 years after my hell began. I didn't smoke or drink a lot but I just wanted to be completely rid of them! I believe I don't suffer as much as others who aren't able to take pain meds and I am so grateful for them because i'm raising young kids and I already miss out on a lot but I couldn't even imagine being completely bedridden. Now I am not willing to continue to up my dose of the meds anymore so I to deal with tolerance but I figure nothing will fully take away my pain so I just put lots of limitations or should I say I learned my limitations and I give myself permission to rest. I do not plan on being on meds everyday for the rest of my life, I want to raise my kids fully then since I do not work I will be able to get off my meds and only take them as needed, I will be able to take care of myself a lot more because I will have the time and energy , Right now my focus and energy is for  my children and husband and being as present as I can! I think it is devastating that doc are taking away pain relief and making these people suffer. I just can't believe it I understand there is a chance of addiction but honestly thats no reason for someone to live in such pain they can't even function. A good pain management dr. have all the tools to screen and hold there patients accountable. I get drug tested every 6 months , everyone in the office does and I do not mind one bit because I am clean from all drugs or meds that aren't prescribed . I really prey that the Dr. stop looking to the chronic pain patients to cut out these meds, they need to be screening more and cutting out the people who are seeking and Dr. shopping. They have the technology to monitor now, so do it, don't make us suffer because others are abusing. I'm sorry to those who aren't being properly medicated. I understand not everyone needs narcotics and that great for those who don't but for those who do please don't ever feel guilty for taking pain meds, for me its like me taking my thyroid meds. My Cognitive Dr. who I saw , who specialized in pain management is the one who told me that because I use to feel so guilty and bad for having to take them. Please don't beat yourself up and if you have Dr. who is saying they won't work for you and you no they do please find a Dr. who will listen preferably a reputable pain management Dr. , stay away from clinics and find a nice Pain Management office! I hope everyone gets the help they need whatever that may be because everyones situations are different! You can find me on... Instagram at DanysBeautyFullife...
      Peace & Love,
      Danielle Marie

    • Elizabeth Martell Elizabeth Martell United States says:

      Kay and others, you are so right! I could not work or function just doing everyday tasks without the pain meds. And the difficulty now in trying to get them now is such an injustice. Thank you all for addressing this so eloquently!
      Liz

    • Luz Grant Luz Grant United States says:

      No, opiods are not the panacea we might like -- but those who say opiates "don't work" must weigh the benefits next to the other medications approved for fibromyalgia - Lyrica, gabapentins, etc. all of which provide a very limited amount of relief in a limited number of patients (I don't have the studies in front of me so check the literature, but 40% of 40% is not far from the mark here).
      As for the fact that patients will always build up a tolerance with long-term opioid use - the answer is to take time off from the drugs, even a couple of days makes a difference - which I do regularly with my doctor's support. (If I lived in a state where medical marijuana were available, I think that is a good alternative and/or something to help through the days of no opiates--the actor/producer Morgan Freeman, who has fibromyalgia & lives in California, has recently said it is the only thing that gives him relief.)

      There is a strong movement against pain medications because of abuse -- however, is it less abuse than alcohol or other substances in our society? That is not a reason to restrict pain medications to people who legitimately need them -- when even people who are in hospice and dying, or cancer patitents are afraid of becoming "addicted" you know that we do not have a realistic relationship, as a society, to one of the best pain relief medications ever discovered -- and which has far fewer side effects than drugs such as Lyrica.

      I am excited by the recent research, and articles like these, about fibromyalgia being a central nervous system disorder, give hope. I have hope that there may be a cure - &/or effective palliative treatments - in the next 25 years. In the meanwhile, those of us living with the disease must find the right combination of treatments that allow us quality of life, & be proactive participants in our health care. The value of an article like this is it recognizes fibromyalgia as a legitimate diagnosis, so we can get past the ridiculous phase where sufferers were told it was all in our heads.

      Because I have fibromyalgia, I still experience days where nothing touches the pain. Like anyone living with a chronic disease/disorder, I have had to learn to adjust, and to accept that I am not the same and cannot do all the same things I did before becoming ill. For now, I am grateful for the relief that opioids, in conjunction with yoga, walking, meditation, and a good diet allow me to "manage" living with fibromyalgia on most days -- prior to the doctor who put me on this regimen, I spent 75% of my time in bed, barely able to move due to the pain, stiffness, and sleep deprivation caused by fibromyalgia. For someone who lives with pain at a 10 most of the time, opiates give me windows at a 5 and, occasionally, a wonderful 4. Until there is something else that can do that, I will continue to support opiate use for those fibro patients for whom it makes a difference.

      • Randi MacDonald Randi MacDonald United States says:

        You mentioned using marijuana for a couple days as a sub for opiates (to improve the issue of tolerance) just wanted to mention the possible issue of tramadol withrawl combined with weed-not a good combo...can cause seizures

      • Deb S Deb S Canada says:

        I use medicinal marijuana and it works wonders for me. I can't take any pharmaceuticals due to chemical sensitivities. I don't get looped from it and my hubby even says to him I'm normal except for my eyes showing it.  I can do anything around the house even work on things with numbers etc.  No pain, it takes it away totally and I'm back to working 2 jobs and before I couldn't work.

    • Janice Kirkland Janice Kirkland United States says:

      I couldn't agree with you more on that subject. When I went to see a new doctor the first thing the told me was you're not trying to get pain meds are you because this doctor does not give them.

  4. MiMi LLawsonn MiMi LLawsonn United States says:

    Vitamin D******for any and all who read this.....speak to your doctor about getting your Vitamin D level checked.   So important for lots of people these days and especially those who have chronic illnesses.....also one should try taking Magnesium Malate (found at vitamin stores)....I have figured out just what vitamins and supplements will help me control my pain along with other *tools and tips*....a heating pad, drinking plenty of water every day.....getting enough sleep and keeping my stress levels as low as possible, to name a few.   It does take a trial and error process to find what really might work for you....so hang in there and learn all you can about what others have found that has made a difference for them.   You never know until you try things.

    • Barbara Neubeck Barbara Neubeck Australia says:

      .. I agree with you.. I take Vit D  and Magnesium every day and it helps me....
      I suffer anxiety attacks as well as Fibro....  and I'm on Anafranil for this...this medication combination helps me .. the less stress the less pain. I do heat treatments and stretches and low impact exercise... gentle massage and positive Self Talk....  I find it all helps.   I have skin sensitivity as well.. what to some people is a 'touch' on the skin to me is Painful... I was told about 40 years ago I had Myofacial Dysfunctional Syndrome..  at least that gave me a name to call it and people respected that I was not pretending I was sore and in pain.  Have had Sciatica, Fibrositis and other 'pain' conditions ... I'm so glad Fibromyalgia is getting the research and recognition needed to help the people suffering with it.   The only pain medication I use is paracetamol and this as little as possible. I talk to my body/pain and tell it that I know it hurts and I will take some pain meds later.. I give the painful area 'permission' to hurt with the promise of relief to come.... AND the pain usually eases and the paracetamol isn't needed....
      Self talk and 'chatting' to my body helps me....
      I hope this is helpful to others......
      not everything works for everybody....  
      Be kind to yourself....  xxxxx   Hugs .. Barb  xxx

  5. Julie Braun Julie Braun United States says:

    They've been suggesting for decades that Fibromyalgia is a CNS disorder. However, there is also evidence of excessive peripheral nerves, elevated levels of neurotransmitters and cytokines, vitamin deficiencies and other physical changes. You simply cannot put fibromyalgia neatly into a box.

    As far as treatments go; what works for one patient does not work for all. If "the majority" can "live normal lives" with the remedial treatments like gabapentin, antidepressants, exercise and behavioral therapy, then why are there hundreds of people that I communicate with daily who are unable to work, exercise or do the things they would most love to do?

    Finally, we cannot overlook the fact that fibro has many co-occurring conditions that require treatment as well. People are quick to say that opioids do not help in cases of fibromyalgia, but for many of us, they are an effective last resort when the pain becomes intolerable. Far too often, ANY symptom in a fibromyalgia patient is simply chalked up to the fibro without adequate diagnosis or treatment.

  6. Heather Stitt Heather Stitt United Kingdom says:

    Has anyone tried Vitamin B Complex for alleviating fibro symptoms? I've had fibromyalgia for 20 years and I have had relief through taking Vitamin B Complex. If it gets really bad I find Amitryptaline helps but I don't taking it for too long. I find that if I forget to take the vitamin tablets (the joy of fibro fog!) then the pain and stiffness comes back. Maybe we need research on Vitamin B Complex, especially B12, on fibromyalgia?

    • Julie Braun Julie Braun United States says:

      I have a script for Vitamin B injections. I give them to myself every two weeks. I know when I'm late because the fatigue becomes almost unbearable.

    • Patsy Birdwell Patsy Birdwell United States says:

      I have had fibro for more years than I knew, until I was diagnosed five years ago to finally know why I had had all the worsening pain, fatigue, headaches, etc. I have the best doctor in the world, and he listens to me. I am not a text book case to him, and he monitors me closely,once a month. I too take the B12 injections every two weeks. If I did not have the pain meds and the injections, I would be on my couch 24/7 again. As it is, I still have to have rest periods during the day. We held off on the regulated pain meds as long as I could bear the pain with the lesser pain meds. I am so afraid of addiction I try to take meds only when I can go no longer deal with the pain. I too feel guilty about taking the drugs, and asking for them, and picking them up at the rx, but I know that my life would come to a complete stand still without them. Just sharing here, so others know how we are all in the same boat when it comes to such terrible, disabling pain, that no one but we sufferers can understand.

  7. john woodworth john woodworth United States says:

    You might investigate the possibilities of pain mitigation through the use of cannabis.  After many years of demonization, more and more peer reviewed studies are emerging indicating successful pain relief for many disorders.

  8. Shannon Grabko Shannon Grabko United States says:

    Has anyone heard of Plexus Worldwide? I became an Ambassador to receive the wholesale cost for products I wanted to use myself. They are natural plant/vitamin/mineral based. We have a product called Fast Relief Nerve Health Support. I have seen many testimonies of people who use it to help manage their fibro symptoms successfully. There is a facebook group for it as well, so if you're skeptical you can certainly join the group and gather info. If you would like other info, I would be happy to provide it! Feel free to contact me if you'd like. The reason I love my job so much is helping people find solutions, not making sales.

    https://www.facebook.com/groups/578519948892288/

  9. Bonnie Cowan Bonnie Cowan United States says:

    Honestly, ?   They keep bringing it back to the brain?  Feed us antidepressants? Well I hate to disagree with the use of Narcotics. It has been the only thing that gives me relief.  Unfortunately to bad your body becomes dependant on them. But truly what medication isn't?  All these meds listed your body becomes dependant on them! But if that is what it takes to have some sort of quality of life then so be it. I'm just so tired of getting preached at about Narcotics.  Like piss off already.  If it works for that individual then good! Why make it impossible to get the meds. It is our choice what we take not theirs.  Just frustrating because they truly don't know themselves it's all just guessing what it may or may not be causing fibromyalgia.  Noticed that they didn't mention anything about Systemic Exertion Intolerance Disease?  We all know it is linked together,  that is if you truly have this disease.

    • Ellen Gershenbaum Ellen Gershenbaum United States says:

      I see an anesthesiologist/chronic pain specialist.  Don't waste your time with rheumatologists...they are useless.  My Dr has no problem prescribing narcotics to people who need them. No preaching, ever. He's more than happy to do it. He will try anything.

  10. Patricia Edsall Patricia Edsall United States says:

    I have facilitated a support group at a local hospital for 21yrs. I have had over 450 people come thru and sign in. we have members with fibromyalgia and chronic fatigue syndrome. I am lay person but have a study on fibro published in a medical journal. journal of neuromuscular pain. I also have it. (fibro) I can only say find a good doctor that listens. its harder than said. join a group if you have one around. Beware of snake oil pushers. please read on internet or in nurses handbook the list of side effects BEFORE you take any prescribed pill or drug. make sure you are ready for any side effects. if you aren't tell your doctor you would like to try something else. if you are trying a new vitamin or herb etc. give it 4-6 weeks to see if it helps and do one new thing at a time. and remember it seems that what helps one person might not help the next. so don't get discouraged. its possible to find many things that help a little and all together add up to give a good percentage of relief. don't be afraid to ask others for help. no one is a mind reader and may be glad to help if you ask. good luck to all. don't give up!.

  11. Cali Angel Cali Angel United States says:

    ALL I HAVE TO SAY IS THE ARTICLE ABOVE SUGGEST WHAT HAPPENS IN BRAIN SPINE NERVES ETC..... ALL OF THOSE THINGS IF PRESENT ARE TRUE DIAGNOSIS OF OTHER MEDICAL CONDITIONS.

  12. Yvonne Eaves Yvonne Eaves United Kingdom says:

    I have fibromyalgia and osteoporosis in my body ive had to live withit for 20 years. I hate it always falling in chronic pain  it makes me depressed has people in gov don't see this has a illness and wont understand what its like to live with this illness

  13. laura tompkins laura tompkins United Kingdom says:

    Whilst reading some of the recent posts on Fibro, I've been impressed with the more positive comments. 4years ago, an excruciating pain in my right hip had me in tears. It became so acute I couldn't walk and after a fall that saw me to hospital, osteoarthritis was diagnosed. Over the next few months I became house bound and some days bed bound by a pain that wracked my whole body! I truly didn't know where to put myself... I had excruciating pain in both my buttocks, shins, shoulders and feet. Finally I was refered to a pain clinic at the city hospital. MRI scans and X-ray tests showed inflammation in several Tendon sites. Further tests carried out reported osteoporosis. I had several guided steroid injections (which were SO painful) and of no effect. A cocktail of various pain and neurological drugs where prescribed - some of which nearly sent me out of my mind!!! I kept a drug/pain diary for a year. At which point My GP mentioned fibromyalgia. What caused it? What suddenly caused the autoimmune system to fail? I still don't recognise myself when I see written down, the condition of my body! Accepting it has been a huge trial. I wept when I was told by my Consultant it was a life time condition and that I would do well to equip myself with coping skills - which were available through the hospital and support groups (I think this is really important to partake in) Any inflammatory disease has terrible strain on the body, but it is the exhaustion on top of painful days that really get to me. I do take medication to give me help settling to bed for sleep 'tho I'd prefer not to, as for day time pain, that's a slow release med. I am more aware that we must be responsible for our own 'well health' - we are organic beings and cells replenish as does bone and cartilage! So eat a balanced diet, check out the foods and drink that might agrivate the inflammatory condition (coffee tomatoes booz) to name a few.... See for yourself though. I pace my day now well, try to and work at my business up to 4 hours some days. 3/7 can be a good week for me! Factor in some quality You Time things, that make you smile or bring joy to your heart! A movie, T n Cake with a friend, having your hair done or seeing family - my utter joy is spending time with the G Children. I pray for you & myself that this debilitating, chronic disease, brings out something of the best of who we are. How's about find a creative outlet. Writer knitter artist cake decorator - Your in charge, not It!

  14. Vickie Tway Vickie Tway United States says:

    Until doctors take fm seriously and get on board with respecting it as a REAL illness with REAL life-changing consequenses for millions of us, all the research in the world will do no good.  Doctors must become more involved than whipping out the almighty rx pad as a way to shuffle us out the door.  Since doctors have no clue about nutrition, vitamins, supplements, or even common sense (all of which when combined can indeed help us recover)  we as patients must take the lead in healing ourselves.  We can not put our lives in their hands.  Disgusting, isn't it?  In fact, the current meds Dr. Clauw endorses for fibro are killing many people and causing irreparable damage.  I was very nearly killed by a serotonin syndrome-induced seizure.  Something that was never mentioned as a possibility by my doctor.  PLEASE be informed before taking fibro "miracle" drugs.  The side effects may far outweigh any benefit.  And as far as opiates not relieving fibro pain, that is utter rubbish!  I would much prefer to use a med that has been around for centuries for treating pain than to add these new screwed up checmical formulations we have now.  But now...the patient is treated as a criminal, pharmacies decide what they will allow doctors to fill, and doctors are afraid of losing their licenses, the govt thinks we are ALL trying to put one over on them, so basically, no one wins.  Its ironic that there  are plenty of statistics available for the number of people who supposedly die from opiate abuse.  But its very hard to dig up the number killed by prescribing errors and drugs prescribed in combination that even when taken correctly take people's lives.  The number of people diagnosed with fibro is growing.  If something doesn't turn around very quickly, the number of people who become disabled by this disease is going to ruin our healthcare system.  Something needs to happen now because - fibromyalgia is VERY real!!

  15. Tricia Westgate Tricia Westgate United States says:

    Every five years or so, you Drs get together and try to decide how to explain and treat patients with Fibro. So far all of your efforts have been horrible failures most often resulting in the patient being much sicker and with other diseases caused by years of prescribing the wrong drugs.Now we're all just fat and need Physical Therapy even though it lands us in bed after 9 x out of 10. What the hell,at least we're getting out of the house huh? Sound bitter...yeah, I am! Stop acting as if you know what this disease is like..you spend every min. of every day in some level of pain,you cry every time the water from the shower hits your body, you cancel your life because you're just too drugged up to show up for your life.Then you say"No more pain killers for you all and cancel the huge amts of pain killers people have been on for years causing 4 suicides (that I personally know of)I'm sure there are many more. But we're not able to be classified as disabled..now we're just supposed to suck it up and deal with it all...the chronic fatigue,the depression,the weight gain, the serotonin disorders and osteoarthritis (all caused by the wrong meds. for so long).Now pain management is a 200.$ pee test like some criminal only to be placed on drugs not meant to treat Fibro...again causing some wicked side effects like loss of vision,increased mental confusion,bleeding ulcers on the tongue and mouth...etc. But we're still told to buck up..we know how to treat this.I call BS,you are no closer to understanding this disease now than you were 25 years ago because you spend too much time and effort telling everyone what you think it is not and by being lead by the Pharmaceutical companies to try the next new drug which was created for some other disease but didn't work so let's give it to the Fibro patients...at least the companies will get some of the money they put out!!!Don't any of you remember the oath that you took...you know the part where it says "do no harm?"Keep your revelations to yourselves,we no longer have faith in you, you have lost our trust! We are much better off searching for alternative therapies for treatment.You all should be ashamed of the way you have treated this population of patients!!! You have ruined people's lives, broken people's families apart!!You won't be giving us anymore A! HA! moments! We are done being your guinea pigs!!

    • Ellen Gershenbaum Ellen Gershenbaum United States says:

      I've been on SS disability for 15 yrs. We absolutely qualify for it!  Don't know where you got that info! Go to a SS disability lawyer and have lots of medical proof.

  16. Tammy Stork Tammy Stork Canada says:

    I have been diagnosed with fibromyalgia for 5 years now!  And for 4 out of the 5 years been on a 12 hour morphine narcotic!  Along with trying to stay as active as I can, has been my only sense of relief! Don't let any doctor tell you narcotics aren't the proper treatment for fibromyalgia!  I have never ever went up in my dosages in these 4 years, as long as you use the narcotics in a responsible way, they will not hurt you! It's better than taking over the counter pain killers, as they will destroy your liver! Long acting morphine have no effect to your liver, and as long as you don't abuse the narcotic you will have a better quality of life! I take mine at about 5am and then again at about 5pm, as you see no going up and down in your oain management.  But you must try to stay active! I have tried every kind of exercise routine,  and none really decrease the pain level, just stay active by moving around, and don't stay in bed all day, get up and do little bits of things throughout the day. You'll learn what is good for you, and when to stop and rest! Good luck everyone with learning to cope with this awful syndrome!  Gentle hugzzzz everyone!

    • Karen Augustine Karen Augustine United States says:

      I completely agree with every word of your posting. I would not be able to even get out of bed without my opiate pain med. I too, have been on my pain medication for four years, along with Gabapentin, and I would never dream of abusing them. I have a wonderful pain management doctor that I see every four weeks and they monitor my pain med use very closely. I suffer with fibro, crps, osteoarthritis and many other fibro related symptoms. I do not understand how these doctors can say that opiates are not effective in the treatment of fibro. Unless they have it they do not understand it. Good luck to you too and very gentle hugs back!

  17. Pamela Dotson Pamela Dotson United States says:

    It's easy for these doctors to say narcotics don't work, because they aren't the ones suffering. I've had it for 17 yrs, and I just keep getting more symptoms.

  18. Jeff Stulga Jeff Stulga United States says:

    Tramadol and 12hr Alive twice a day will not make you as tired and works pretty well. The Gabapentin works good if you cant sleep but will make it very hard to function if you have to get up early. I use it when I don't have to work in the morning.

  19. Huw Thomas Huw Thomas United Kingdom says:

    The cause and the reason are one and the same, ''There is no peace unto the wicked says Elohim''.

  20. Debbie Craig Debbie Craig United Kingdom says:

    I am new to all this can someone please tell me do you feel like you have been hit with a baseball bat when you bang your leg just slighty  on something. All I do is sleep sleep sleep I'm fed up of people calling me lazy. I have never woken up and felt well and have constant head aches Smile

    • Liz Skilbeck Liz Skilbeck United States says:

      Yes, yes, yes.  I have officially had fibro for 11 years.  There are days that it hurts when my children hug me.  It is awful, and I hate it. I honestly can't remember the last time I have woken up feeling refreshed. I can sleep with the best of them, but it really seems to serve no purpose. Like so many people on here, I have gotten so frustrated with the medications and treatments that I have stopped.  I take my vitamins and deal with it. I will tell you, the one thing that I found the most helpful was acupuncture.  It was a bit freaky at first, but totally worth it. I haven't gone in years, but have really been thinking I need to.

    • Ellen Gershenbaum Ellen Gershenbaum United States says:

      I wish I could sleep. You are luck !

  21. Karen Augustine Karen Augustine United States says:

    I completely disagree when doctors say that opiates are not "effective" for pain relief in fibromyalgia. I have suffered with this horrible "syndrome" for many years, and went many years without the relief that comes with opiate treatment. I have now been on opiates for nearly five years and would not even be able to get out of bed and function at all without them. I thank the good Lord above that I have a doctor that says that I know my fibro better than he does. All I can say in closing is that if you newly diagnosed with fibromyalgia, the best thing that you can do for yourself is find a good pain management doctor that understands fibromyalgia. It may take some "shopping around", but it is so very well worth it.

  22. karen sue carr karen sue carr United States says:

    I was diagnosed in the mid 1980s with fibromyalgia along with chronic fatigue. Like most I was told to learn to relax, to watch what I eat, get more exercise and generally try harder. Between pain chronic exhaustion a very tough job while raising two children with their own health issues I could barely make it through my days without thoughts of ending my suffering.

    Fast forward, my children are grown. Both had odd issues as kids. Sensory overload issues, night terrors, sleep paralysis, clumsiness as well as quirks like painful joints, difficulty sleeping attention deficit and more. Fast forward their health as well as mine continue to deteriorate.

    A light bulb moment occurs and I realize something genetic is going on with my self and my children. It took me months of research but I made our diagnosis. A considered rare mineral metabolic disorder, an ion channelopathy that supposedly very few people have but for some reason tons of research was being done. Ion channel disorders are periodic in nature. You have good days or good moments only to descend back into the abyss of brain fog chronic pain periods of muscle weakness and for some but not all periods of paralysis. Every one of my quirky issues could be explained by this diagnosis. Andersen Tawil Syndrome.

    From my crooked retrognathic jaw to my crooked toes, muscle weakness and strange or paradoxical reactions to many meds. Literally life changing things occurred with in days of beginning a neuroprotective high fat, moderate protein, low carb, low sodium diet. Along with this diet I also began supplementing other minerals and vitamins associated with the metabolism of potassium. The B vitamins, vitamin d, magnesium and several thousand milligrams of potassium daily. Supplementing potassium for most non medical individuals actually scares many persons. It can be dangerous if an individual has unhealthy kidneys. However, most Americans do not get much more than half of the RDA of potassium daily.

    This mineral is vitally important to the function of nerves as well as the basic function of most cells in the human body.  Three days on the neuroprotective ketogenic diet with supplementation of vitamins and potassium otc my pain literally ended. Muscles once stiff and unresponsive were supple again. My sudden attacks of sleepiness and sudden weakness also were much improved. I took my results to my physician as well as contacting a world expert researcher and both agreed that this was indeed my diagnosis. I was told I probably have many ion channel mutations. One or more of them probably are responsible for most of my signs and symptoms. Just wanted to share so others might google and learn about these disorders.

    Perhaps you can find something that fits you better or even an approach that may greatly improve the quality of your life. There are over 7000 rare disorders. Most physicians are unwilling to do the scut work to figure out if your issues may indeed be something that can be made better.

    If you have little physical quirks along with your pain your exhaustion your exercise intolerance perhaps you should seek an appointment with a genetic counselor. Insist on it. Do some homework there may be something out there that is the actual correct diagnosis.

  23. Robin Celius Robin Celius Norway says:

    FM is often a cause of an infection. For instance Lyme disease.
    The science is strange... As if it is 20 years back in time, in knowledge.

    • No
      Ellen Gershenbaum Ellen Gershenbaum United States says:

      They love to link it to lyme. Not so. Been tested many x's.  don't have it. Was living in FLA when I got fibro, and there is no Lyme in FLA.

  24. Shannon Hutcheson Shannon Hutcheson Canada says:

    I sincerely hope that this "pain medication doesn't help" attitude does not become the prevalent "belief" of health care professionals. At least we may still have access to actual pain relief specialists. As I always say, you are your best advocate. Do NOT, ever, assume that your family physician knows best when it comes to pain relief. Ask for a referral to a pain specialist, or get a second opinion. Hell, even a third opinion.

    Talk to your pharmacist about Nucynta. It is very similar to Tramadol, without constipation or any symptoms at all. Yes, I still feel tired and fatigue is a major symptom for me. But I'd rather be a bit tired (if Tapentadol/Nucynta is even the source) than suffer with 7/10 pain scale average days. No thank you.

    Your pharmacist can tell you all about Nucynta. While your GP can only look it up in his/her pharmaceutical reference book. Your pharmacist knows more about it than your doctor will.

    It took a year and a half for my doctor and I to find the right cocktail of medication that helps keep my pain at least manageable. I can cope with it ok most days and that's all I expect out of it. Cymbalta, Lyrica and Nucynta is what works for me. Without the Nucynta, my pain was way too much. I'm so greatful my pharmacist told me about Nucynta!

    Keep on fighting everyone. Don't ever give up!

  25. Marsha Levine Marsha Levine United Kingdom says:

    There is lots of evidence that good quality, balanced medical cannabis gives relief to many people with fibromyalgia. If I could get it legally, I'd try it in a second. If I could get it illegally, but safely, I'd try it in a minute.

    • Ellen Gershenbaum Ellen Gershenbaum United States says:

      You can't get it illegally?  LOL...it's everywhere! In NYC, people get high right in the street. No one cares - weed is in the air everywhere. Find yourself a source...the easiest thing in the world !

  26. Tracy Lang Tracy Lang United States says:

    Two things I haven't seen here that are helpful to me so I'll share.  I take Parafon Forte twice a day.  It's an old time muscle relaxant with virtually no side effects.  I have also begun supplementing with a high quality turmeric compound supplement.  This has had an amazing effect for me.  I no longer take any NSAIDS and need Vicodin much less often.  If you try the turmeric thingy be sure to research it a bit & get the proper supplement.  It's literally been a game changer for me.

  27. Ruth Linn Ruth Linn United States says:

    The attached article is the way the doctors are going. My pain manager hates that I even shadow his door. Told me I am endangering his license and I am. The only doctor who helped me completely got tarred and feathered here a couple of years ago and the medical board made no arrangements for his patients. And this doctor tried everything, not just narcotics, to help fibro. But more importantly, can we please find the gene that someone mentioned? Probably no money in it, but if that gene could be isolated at least we would show propensity for this stuff. I love to work and must; I can't afford not to. But it is so much easier if I just feel good. Exercise, which I love, makes me so sleepy and wiped out I can't work the next day. And I just discovered that the TMJ I thought I had is just the result of a horrible headache-can't eat, turn my head or drive stick shift. I came off a bike at 10 and was blind in one eye for 5 hours. ok. that must have been the start? What else is there? Can we organize? I am exhausted by this lack of concern.

  28. Margit Willems Margit Willems United States says:

    I was diagnosed with fibro in February, 2007, after many long history of complaining about severe pain, insomnia, headaches and heart palpitations.  By end of 2007, I was ready to get off of the meds due to more side effects and very little improvement in fibrofog and pain.  I started seeing an integrated medical doctor slowly took me off of the medications - a cocktail of seven pills. Before the fibro set in I was hardly ever taking even a pain pill.  In addition, I also was diagnosed with chemical sensitivities, lactose and gluten intolerance. So between the fibro symptoms and my sensitivities I had reached a point were I was no more sure what was worse. In 2008, I also had to leave my job due to the condition. I went to Germany to find answers. As mentioned above, I also take magnesium to help me with restless leg syndrome.  But I did not stop there. As painful as it was I picked up yoga, followed a strict diet - no preservatives, gluten and lactose, and few other things. I also changed my career - a 360 degree career change. While I still have some flare-ups I am able to manage it. One things I have learned is to reduce and keep the stress manageable, get my sleep, eat right and exercise (not always easy, but as long as I pace myself I am ok). I hope to get around writing more articles and a book on the subject real soon.

  29. Beverly Craig Haley Beverly Craig Haley United States says:

    I was dx with CFS in 1995, then FM in 2003. The doctors that write about pain meds not helping make me so angry!!!! I worked in very physically strenuous jobs ( sandblasting, construction, professional painting) in my younger years. I loved being active, playing softball till I was 29, boating, white water rafting, horse backing in the mountains, volleyball, hunting, going to the gym. You get the picture. I was very reluctant, to start taking pain meds, in 2004. My doctor assured me this was the best way. So, I did. The pain meds gave me a quality of life for another 5 years, I would not have had. However, now at age 61, with the pain meds I can get out of bed, maybe go to the store, maybe make my doctor appointments. Without the meds, I ABSOLUTELY COULD NOT FUNCTION AT ALL! Makes me sick, that I have no quality of life, that I cannot travel any longer with family and friends, that I cannot work or exercise. This wonderful report that fails to mention the patients that not only have FM, but have CFS, DDD, and on and on. So when we go into our doctors, all they want to focus on is "the new reports say pain meds do not help FM" NOT, " you need to exercise" DO YOU NOT SEE I HAVE CFS????, exercise puts me in the bed for days!!!! As for the serotonin up-takes...NOT...I have tried them all over the last 20 years. What I would give to have my life back!!! I do remember my mother (adopted) telling me my entire life that I had no tolerance for pain. Never gave it much thought till they came out saying this is something we probably have had from birth. Which I do believe, due to the fact my 39 year old daughter has been fighting it for 2 years now! My heart goes out to each and everyone of you that have this horrid syndrome, however, for you younger patients that still have more good days than bad, ENJOY and know your odds as you get older will change, if they do not find the root to this evil. In closing, I beg any and all doctors that feel the need to put their name on a report, that they are still guessing about....PLEASE STOP!!! It is hard enough for us to get what we need to just function and try to take care of ourselves, without you all making it almost impossible!!!

  30. Janice Kirkland Janice Kirkland United States says:

    I am 60 years old and living with fibro for 30 some years. It first started in my hips as the years went on it then progressed to my entire body. I didn't understand where or what the pain was from until several years after I heard about fibro. And it fit my systems spot on. But I still didn't go to a doctor because I didn't know what to explain to them how I felt dum of me I guess. When I finally went to a doctor all they ever treated me with was antidepressants  and none of them helped. And neurontin but it didn't work either. So I have quit complaining and still living with chronic pain everyday. And I can't function do any house work, and I have to force my self to cook a meal for me and my husband. And dishes have to wait until the next day. I can't walk 20 or 30 feet my hips, legs and legs hurt so bad. I am so tired of this pain.

  31. Bette Chatterton Crosby-Johnson Bette Chatterton Crosby-Johnson United States says:

    I have had luck with Tizanidine. It helps me relax and sleep without pain waking me up. It is a mild muscle relaxer. Nothing I've tried helps the daytime pain, but as long as I get some sleep, I can deal during the day.  My doctor wants me to try Lyrica, but the side effects concern me. I refuse narcotics because they make me agitated and nauseous.

  32. Charles Waller Charles Waller United States says:

    This article perpetuates the misconception that the cause of fibromyalgia is primarily in the brain:
    "Clauw explained that fibromyalgia pain comes more from the brain and spinal cord than from areas of the body in which someone may experience peripheral pain. The condition is believed to be associated with disturbances in how the brain processes pain and other sensory information. He said physicians should suspect fibromyalgia in patients with multifocal (mostly musculoskeletal) pain that is not fully explained by injury or inflammation."

    This research study demonstrates the origin is physiological, and found in nerve tissue structures in the body.

    http://www.ncbi.nlm.nih.gov/pubmed/23691965/

    RESULTS:
    AVS had significantly increased innervation among FM patients. The excessive innervation consisted of a greater proportion of vasodilatory sensory fibers, compared with vasoconstrictive sympathetic fibers. In contrast, sensory and sympathetic innervation to arterioles remained normal. Importantly, the sensory fibers express α2C receptors, indicating that the sympathetic innervation exerts an inhibitory modulation of sensory activity.
    CONCLUSIONS:
    The excessive sensory innervation to the glabrous skin AVS is a likely source of severe pain and tenderness in the hands of FM patients. Importantly, glabrous AVS regulate blood flow to the skin in humans for thermoregulation and to other tissues such as skeletal muscle during periods of increased metabolic demand. Therefore, blood flow dysregulation as a result of excessive innervation to AVS would likely contribute to the widespread deep pain and fatigue of FM. SNRI compounds may provide partial therapeutic benefit by enhancing the impact of sympathetically mediated inhibitory modulation of the excess sensory innervation.

    SNRI compounds may provide relief for this specific aspect of FMS/CPS, but do not address the loss of elasticity in myelin, inflammation and several other serious symptoms. There is also the risks of adverse side effects.

    Whole plant cannabis extract oil with the proper content & ratio of cannabinoids, other terpenoids, terpenes and flavonoids addresses all the symptoms of FMS/CPS without risk of serious adverse side effects. US DHHS has held patent #6630507, Cannabinoids as Antioxidants and Neuroprotectants, for over a decade and NIH-OTT licensed that patent several years ago - but only for manufacture of "dietary & nutritional supplements", rather than actual therapeutic medicine. Despite these facts, and the fact GW Pharmaceuticals currently has two plant sourced cannabinoid based, patented compounds undergoing FDA testing (Sativex & Epidiolex), cannabis remains listed as a Schedule 1 Controlled Substance. Cannabis is easily cultivated, and carries no risk of fatal overdose associated with many prescription pharmaceutical compounds. In the words of DEA Administrative Law Judge Francis Young, in his 1988 ruling against the DEA during the internal petition process: "Marijuana, in its natural form, is one of the safest therapeutically active substances known to man.  By any measure of rational analysis marijuana can be safely used within a supervised routine of medical care."

    Cannabis prohibition is unscientific, irrational, unconstitutional and based entirely on lies and propaganda intended to protect the profits of vested interests - not public health and safety. One does not need to smoke cannabis to derive therapeutic benefits. Juicing raw plants is extremely beneficial and advocated by Dr. William Courtney, who witnessed an 8 month old patient diagnosed with an inoperable glioblastoma multiforme (brain tumor) recover completely within a year with no treatment regimen other than whole plant cannabis extract oil. Effects were apparent within 2 months of the start of treatment.

    Cannabis cures.

  33. Chris Tamer Chris Tamer United States says:

    I have had Fibromyalgia for 30 year, and most researches need to talk to people that suffer more then most, because they have have no Idea how much opioids help. It is not a cure, but I have done everything that has been asked of me, and the only thing that gives me a break from the pain are opioids. I have never had a problem coming off of them, when I think I am get a high dose then I like. Then I ask to go on a new one. They do not know anything for sure, it is just their opinion. They do not like to give opioids because the pain never goes away, and they are afraid of all the regulations. So they make up reasons not to give you the meds that will make your quality of life better. Please start thinking of your parents that will take opioids the right way. It is all that helps me. I now live in a state that makes it impossible. So now I us a Cain. I can not move much, and that makes my fibro worse, not the drugs.

  34. Amy jentz Amy jentz United States says:

    I agree fibro is not only pain its trying to get out of bed cause you have no energy, muscle spasms depression anxiety and lots more. ON top of this condition I have arthrois in lumbar spine. The opiods just did not help. It was the combonation that worked for me i was back to my normal sellf. then the doctor changed the medication and it took a while. I have to have oxycontin for long trips/ car rides. BUt they should really put a long acting opoid into the mix like oxycontin but for here and there when the pain is really bad and you know you have lots to do. IT works for 12 hours so you can actually do the activities that are harder to do normally and i believe a stimulant should be abailable as well for poor fatigue thanks

  35. Tammy Richardson Robertson Tammy Richardson Robertson United States says:

    i have been in pain for years now and none of the dr would call it for what it is untill this year. ive have test after test and spent to much money on all the test. the dr that told me what was wrong is trying me on celecoxib. it takes the edge off of the pain and i can deal with it as long as it dont get to bad. some day it hurt more and i cant do what needs to be done but im not about to go into pain meds. as long as i can deal with the pain i have right now im happy with what i talk. my mind is not what it use to be i forget a lot and i cant do alot of things with my kids that they want me to do and i feel bad for that but i talked to them and they now understand so when i can i go and play hard with them and then pay for it the next day

  36. Marjorie Blegen Marjorie Blegen United States says:

    Finally after years of doctors telling me that "it is all in your head."  I've lived with fibromyalgia for over twenty-five years (diagnosed in 1990 by a rheumatologist), but a lot of medical personnel still do not believe in fibromyalgia pain. Thank you.

    • Kath Jones Kath Jones United States says:

      In 1991 I fell and broke my leg - had pins and plates put in the entire calf. Within a few years I started feeling fatigued. I didn't want my husband or son to hug me, let alone touch me, because it hurt.  I complained to my doctor who suggested a sleep test. I was diagnosed with severe sleep apnea, so now I have been on a CPAP for the past 15 years.  It helps some but not all the symptoms. I continue to ask the various doctors I saw (yes, I say various because with the military the doctors change all the time) why was I still feeling so bad.  I don't know about now, but the military doctors at the time would not recognize Fibromyalgia.  After being sent to a civilian doctor, she "heard" me and immediately ran some tests.  I thought Savella worked great but my current insurance won't pay for it. The neurologist recommended 300 mg of Gabapentin 3 times a day.  It is ok, but I occasionally need a few Aleve.  I was recently diagnosed with Osteoarthritis in my knee (that took a year to get that problem believed) and doctor says Aleve twice a day, if needed, is ok.  Over the years, I too have found that I have to be able to get enough sleep ( even if it means taking something to knock me out), eat right - no salt, low sugar, less processed foods, some light exercise - but don't overdo it: more than an hour working in the garden will do me in, and be prepared to rest if you know things are going to trigger symptoms.  Running all day errands will be do me in, so I know I will have to take it easy the next day.  I have always said all these years, I don't care what anyone calls it, I know I am in pain if some one touches me, I bump something, and the fall I had to break my leg did something to me.

  37. Tiggy Sagar Tiggy Sagar United Kingdom says:

    CBT??!!!!  Are you having a laugh? This is physical pain, not incorrect thinking! We should be getting medical marijuana, not these dangerous anti depressants that have major long term effects and cause weight gain. I've been told to come off SSRIs due to the heart problems they cause.

    • Debra Jaramillo Roybal Debra Jaramillo Roybal United States says:

      I agree, I've had fibro more years than I knew I had it 25+ years. My life has changed drastically. Cannibis Oil has been the only thing that relives my pain and I can actually sleep thru the night.

  38. Kelly E Savery Kelly E Savery United States says:

    I started having wide spread body pain at the age of 17 after a severe car accident 1991-1992, and I dealt with the pain, I talk to my doctors over the years and they look at me like I had three heads until 2002 when I had a doctor look at me and say you can no longer work with the amount of pain your in through out your body and I am going to give you some meds, but I didn't have a diagnosis, and then it 2010 I took a bad fall and herniated a disc in my neck and the doctor I was with finally looked at me and said that the wide spread pain I had in my body fit a syndrome called Fibromyagia, and that the other problems I was having the disrupted sleep, body pain, fatigue was all connected.. Since then I have tried a lot of medications such as Lyrica, Gab, Celexa, Effexor, Cymbalta and many more some with some major side effects, some that worked great until my body got use to them, some of them I am still on, such as shots every month, I am looking for alternitives.. tired of the roller coaster..

  39. Carole Weaks Carole Weaks United States says:

    I have had this @#$@#$ disease since 1962. I had been in a very severe car wreck 2 yrs before and had mono right after. I was living in the South which is like living back 20 years behind the rest of the nation. Doctors told me I was crazy, and that I was imagining the pain. Finally in my thirties, they decided juts maybe I had some rare blood virus that would respond to steroids. The had me on steroids for several years, with many things to counteract the side effects of the steroids. That was in the early 1980's. That blew out my immune system to the point the I then had environmental illness as well. I heard a voice saying "no more doctors, drugs, prescriptions or medicine." The next 20 yrs i only did non-medical. I can tell you this after everything I tried, there is nothing, absolutely nothing that has rid me of the pain, cured me of the disease. Now...even tho I have kidney disease, and high blood pressure, and I am 73, I take tylenol and ibuprofin. I want to live, and do my passion and those help me to cut the pain enough to do my art. When I can do my art, I don't notice the pain, so I spend as much time as possible in my studio doing art. It is a nasty disease that nobody, absolutley Nobody understands. I will be glad to have a lifetime without it next timel
    Carole

  40. Carole Weaks Carole Weaks United States says:

    By the way...I am sober 28 yrs, so all the opiods and stuff that are narcotic are not apossibility for me.

    • deborah switzer deborah switzer United States says:

      nothing will make it end, but anything that can help will be great. Im 43, got it for 17 years now, and im done with the doctors meds, its just a business for them, nothing else. I lose my job to it, still have a 12 years old girl that needs me, and i feel more an more defeated. I still pushing, i help my husband on his job, (not enough, bu some), i do what i can in my house, i register for classes, do garden ,try to walk and swim. But some days I just want to end my life, God will forgive me, I hope...
      i keep on looking... blessings

  41. Margo Fogg Margo Fogg United States says:

    I have had pain reduction seeing an Osteopath (DO) for the last 8 years, I go every 2 weeks, bar bad weather or Dr. sick on on vacation.  I am amazed how much it helps

  42. Kathryn Adams Kathryn Adams United Kingdom says:

    Hi everyone. I have had M.E and Fibromyalgia for 10 years now and understand everyones comments on here. Trust me when I say I have experienced all of them. The pain is incredible.
    I have discovered new ways of trying to manage the condition and up to now, fingers crossed found the following helps.

    1) Get allergy/intollerance tested. Since removing cows milk and lactose, wheat, gluten & rye and cane sugar from my diet, my energy levels have gone up and my pain has gone down. Ok so I cheat now and then but wow Can I tell the difference!

    2) Despite energy levels and pain try to move around or do some low level, low impact exercise. I find gentle swimming works for me where as walking is painful. Ok so I am crippled getting out the pool, use 2 sticks to the changing rooms and car and have on occassion had help to the shower. But after a rest and a cuppa I feel much better.

    3) Cannabis Oil.  3-4 drops under the tongue at dinner time (5pm meal) and let it soak in through the lining of your mouth. Don't swollow it down instead as 90% will be destroyed by your bodys acid in digestion. Smells horrible, tastes even worse. I drink some water and eat a cherry tomatoe once it is absorbed. I don't obtain it from a Junkie supplier, I buy it from reputable shop or on-line from LOVE Bd.  Faboulous PAIN RELIEF and helps for a mor peaceful and restful sleep.

    4) Check your thyroid action...especially T3 & T4.  the T3 range is 12-19. Mine was 12.9. I now take an adrenal gland supplement to spur it into action and it's helped.  An under active thyroid gland (fed by the adrenal gland) will cause weight gain, lethargy and low mood.

    And finally as much rest as you can and as little stress as you can. Both quite hard and just having fibro is ehxhausting and stressful I know but I have had a lot of stree over the last 18 months and it has made me much worse.

    Good luck peeps, hope some of what I have written may help you and bring you some relief. It won't get rid of the fibro and won't make you symptom free but it lowers the severity of the symptoms making it easier to cope.

The opinions expressed here are the views of the writer and do not necessarily reflect the views and opinions of News-Medical.Net.
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