Personalized Fibromyalgia Care

by Kristin Thorson, Editor, Fibromyalgia Network
Posted: December 16, 2011

Although you have widespread achiness, your fibromyalgia symptoms consist of so much more. Wouldn’t it be nice if your doctor could personalize your treatment to address specific symptoms instead of viewing you in the same light as all people with this disease? This is the focus of a recent medical journal report written by pain management specialist Vibor Milunovic, M.D., and his colleagues in Croatia and Chicago, IL. *

Milunovic points out there is a major problem with the definition of pain as “an unpleasant sensory and emotional experience.” Adding to this vague definition that is largely useless to the practicing physician is the 1990 fibromyalgia criteria put forth by the American College of Rheumatology (ACR). It says fibromyalgia is present in a person who has tenderness in at least 11 of the 18 defined tender point areas. This definition is all about pain and says nothing about the other baffling symptoms you have such as fatigue, sleep disorder, or trouble concentrating (e.g., fibro fog).

“The new 2010 ACR criteria somewhat reduce the importance of tender points while concentrating more on other features,” says Milunovic. “The primary aspects newly introduced are fatigue, cognitive problems and waking without feeling rested. Secondary aspects include symptoms varying from irritable bowel disease to dizziness and nervousness.”

On the surface, this new criteria may seem more likely to pick up the specific types of symptoms you have besides the pain, but it falls short as well because it just generates a number ranging from 0 to 12. “This approach attempts to collapse symptoms into a globally perceived measure of dysfunction,” says Milunovic. Condensing your symptoms and their severity to just a number may be useful for following your progress in a clinical trial, but doesn’t help your doctor pinpoint specific symptoms that deserve priority treatment.

“Being able to identify key symptom clusters may reflect significant individual variability,” says Milunovic. In other words, not all fibromyalgia patients are alike, nor should they be treated that way. He goes on to say, “Measurement of this variability may allow for more individualized therapeutic strategies.” After all, when you go to the doctor, don’t you want to be treated for your individual complaints, rather than a number or score obtained through tender point counts or a symptom tally?

“We may be missing or mixing subpopulations of fibromyalgia patients with distinct neurobiological or behavioral characteristics,” says Milunovic. By ignoring the subgroups of fibromyalgia patients and applying cookbook treatment guidelines by various professional pain associations, he adds that “the use of personalized medicine in research and clinical practice remains only a remote possibility.”

While most researchers in the field of fibromyalgia acknowledge many subgroups or varieties of this disease, patients with highly variable characteristics are excluded from clinical trials. So the published trials your doctor may be relying upon for treatment guidance might not apply specifically to you. Milunovic suggests various scientifically sound yet cheaper assessment tools, such as multi-probe brain electroencephalograms, be used in place of the expensive functional MRI tests to better define the various subgroups of fibromyalgia patients.

Implementing a uniform set of objective test measures to all patients and entering the findings into a massive database used by multiple countries is how Milunovic believes subgroups of fibromyalgia may be identified. He adds that the end goal is to enhance the effectiveness of treatments by enabling physicians to offer more personalized care specific to your particular set of symptoms.

* Bras M, et al. Psychiatria Danubina 23:246-250, 2001.

61 Responses to Personalized Fibromyalgia Care

  1. Cindi Shepherd says:

    This article is so true. I have talked to others with fibro and they do not have all the same symptoms as me. In fact I was being seen by a therapist who said she had fibro and then started lecturing me for taking pain medication. I was dumbfounded. I could no longer work as a 2nd grade teacher and had to quit because I could no longer do all the work required especially on the days when my fibro was extremely present. Yet here she was working. Then I realized she had a totally different profession than me. She could call in and cancel her patients for the day but I couldn’t do that as a teacher. If I called in sick I still had to go in and prepare for a sub. I could no longer take the time off and had to go on disability. Believe me I would love to trade places with her. Or I’d rather give anything to not have this condition. I don’t sleep, I’m tired all day long, I no longer remember things and sometimes the pain is unbearable. I hate having to justify my condition to everyone. No one knows what I’m going through.

    • Wren says:

      Cindi,
      I too have fibro and polymyalgia rheumatica. The back pain can be awesome. However, if you haven’t gone to a neurologist, which I haven’t as yet; I think it would be beneficial. I read of a technique that is being used for back pain, which is considered noninvasive surgery. Primarily this is good for nerves that are being pinched by a disk. They use a small instrument, and place a little rod of metal that has levers on each side, using the levers they can raise the disk off the nerve. I read many people walked, out on their own without pain. This little rod can very easily be removed too. I found this info on the internet. If you can’t find it, hopefully I saved it. I was told by an orthopedic Dr., that a laminectomy would help my problem. This is much more involved and really not what I would want to go through having fibro. He never mentioned theother type of surgery. Maybe it’s only be done by neurologist?? Who knows.
      I am planning on checking this out.
      Good luck everyone.
      What I don’t understand, and this happens only ever so often, some days I feel normal. I can walk, I have no pain,it feels good to be alive. Then the nose dive of continual pain and tiredness. Can’t figure it out.
      I still think too little is known about this type of disease and if you are lucky to find a good Dr. it makes a world of difference, especially for you mental health.

    • Wren says:

      Chrissie,
      I too have fibro and polymyalgia rheumatica. The back pain can be awesome. However, if you haven’t gone to a neurologist, which I haven’t as yet; I think it would be beneficial. I read of a technique that is being used for back pain, which is considered noninvasive surgery. Primarily this is good for nerves that are being pinched by a disk. They use a small instrument, and place a little rod of metal that has levers on each side, using the levers they can raise the disk off the nerve. I read many people walked, out on their own without pain. This little rod can very easily be removed too. I found this info on the internet. If you can’t find it, hopefully I saved it. I was told by an orthopedic Dr., that a laminectomy would help my problem. This is much more involved and really not what I would want to go through having fibro. He never mentioned theother type of surgery. Maybe it’s only be done by neurologist?? Who knows.
      I am planning on checking this out.
      Good luck everyone.
      What I don’t understand, and this happens only ever so often, some days I feel normal. I can walk, I have no pain,it feels good to be alive. Then the nose dive of continual pain and tiredness. Can’t figure it out.
      I still think too little is known about this type of disease and if you are lucky to find a good Dr. it makes a world of difference, especially for you mental health.

    • Debbie says:

      So right about no one understanding your pain. I have had people tell me, I have pain but I don’t let it bother me, I just go to work and forget it. I get so mad, everyone’s FM is so different. There are days I can not get out of bed. Had to retire on disability. My symptons change from day to day, sometimes by the hour. I wish these people had it for one day, then tell me they don’t let it bother them. I understand what each person says about their FM. The worst part of this is not having support from family and friends.

      • Carla says:

        I agree with you. No one knows what we go through unless they have the disease and the pain.
        I am working, only because I have no choice. I push myself to keep going even with my pain. I was also diagnoised with Rheumatoid Arthritis and Osteoarthritis (in my back).
        Take Care of yourself and try to keep a positive attitude.

    • Shelly says:

      Cindi,
      I completly understand ! I too have a lot of uncontroled pain, and would love to be healthy. God has a plan for us so I will pray for all of us and the healthy ones too. no one knows your body better than you, so listen to it and give it the rest and the pampering it needs, you deserve it!
      God Bless!

  2. Deborah says:

    Well said…Fortunately I have a doctor who tackles with me, my most pressing symptoms – sleep and neropathic pain. With these under better control the other symptoms are not as aggravating…even those dreadfully tired days.

  3. Josie Donohue says:

    Paragraphs 2,3,4,6 are the particular ones that I identify for myself. I am realizing a big part of fibromyalgia could be part of a neurological condition; or neuromuscular condition. Please put some thought into investigating the avenues that I strongly feel would be effective in solving of questions as I have. I have been wondering if I should go to a neurologist regarding my fibro fog, sleeplessness, feeling fo very tired that is makes me feel lazy. Before my over 10 year battle with fibro. I was a very active person. My metabolism was out the roof – it has hard for me to stay or sit still. I was always thin and did not gain weight; my metabolism kept me going and I was happy! But; then came the fibro. and it seems it gets worse every day. I just want help!! A doctor that would actually listen to me and talk to me in an understanding way and together we could work something for my on original type of Fibro.

  4. Edita Matjasec says:

    I like this article and Dr. Milunovic ideas. I have been thinking a lot lately about all the other symptoms that I personally have from Fibromyalgia. I recently had a Hysterectomy (6 weeks ago) and I had an extremely difficult recovery due to an extremely painful and persistant bowel problem called “Ileus”. My surgeon warned me of it and an extra long and painful recovery before I even left the hospital. I even had to spend an additional three days back in the hospital because the pain was so bad. This is all due to the IBS that I have. I have many other annoying health disturbances like migraines, sensitivies to smells, lights, foods, textures, low & high lood pressure, periods of hyper”ness”, numbness and tingly in arms & legs, disturbing forgetfullness, severely painful feet and calves. Oh! the list can go on and on. This is such an important area of Fibromyalgia that desperately needs to be studied, evaluated and written about as much as Fibromyalgia itself. Thank you Dr. Milunovic, keep up the great work! Im sure there are many other people who are thrilled about you work other than me. Thank you again.

  5. Jennifer says:

    This idea is brilliant and would be such a help to people, like me, who are dealing with all aspects of fibro. I am so frustrated trying to explain everything that I deal with on a daily basis. No one seems to get it. I am handed pills that help with sleep and are suppose to help with pain, but nothing is working and I am truly tired of feeling like a guinea pig. Thank you for this article, it gives me hope.

  6. Jody says:

    I found this article to be very helpful and “right on” about how the testing used doesn’t seem to measure all the symptoms and in fact, many times minimizes the effects of this disease. Unless you have a very informed physician, you might get a fibro diagnosis, but leave not understanding all the myriad of seemingly unrelated symptoms you are experiencing. I believe my fibromyalgia took longer to be diagnosed because I initially saw incompetent, uninformed rheumatologists who just didn’t or wouldn’t look into my complaints enough to come up with the proper diagnosis.
    Once I found a doctor, thru the referal of my TMJ doctor ironically, who was very informed, I was finally properly diagnosed and treated for my individual symptoms. He is a doctor who does treat his patients on a case by case basis with their fibro. He doesn’t use “a one size fits all” approach. He is a thinking, caring man who is very knowlegable and I’m constantly learning new things from him about my dx. I’ve been going to him about 3 years now. He addresses both my physical complaints and pains, but also the emotional “needs and pains” that go along with trying to come to terms with living with fibromyalgia. I feel fortunate to have such a doctor.

  7. chrissie hardman says:

    I have, for the past few weeks, been suffering agonising lower back pain, which leaves me unable to stand, let alone walk, for more than 5 minutes at a time. Of course, like many of us do, I put it down to a “flare” and waited for it to go away. when it did not improve i went to my doctor, who, after a urine test, told me that i had a water infection, and that the pain was most likely as a result of that. I went away with antibiotics which, after the whole course was done, had had no effect whatever on the pain, so I went back. This time the doctor unhesitatingly attributed the pain to fibro and upped my fentanyl patches from 75 mcg to 125 mcg per hour. my concern was – how would I know when my back was better? This became a moot point, because the pain meds had no effect on the pain, and I have to spend almost the entire time lying flat, because it’s the only place I can be relatively comfortable. What do I do next? The doctor cannot just keep throwing painkillers at the problem, (I also take up to 400 mg of tramadol per day) – surely, at some point some other treatment, or at least investigation must take place, yet I’m beginning to suspect that I’m thought to be one of those annoying patients who just won’t go away. Well, that is true – I won’t – I can’t – I’m living on the floor, on my back, for God’s sake, and this is not something that I brought upon myself through recklessness or abuse of my body. SOMEBODY needs to come up with new ways of diagnosing and caring for the fibro sufferers among us. The doctor I recently saw at my rheumatology clinic assures me that fibro is pandemic – so what are they waiting for?

    • Liz Wolf-Spada says:

      Hi Chrissie, about 6 years ago I had a minor misstep on a stair and my back pain wouldn’t go away. I too, only felt better lying down. Ice, tramadol, Feldenkrais and chiropractic treatment helped some but an MRI showed I had spinal stenosis between L4 and L5. I saw a really good neurosurgeon and had an outpatient laminectomy and it stopped that untreatable pain. I can’t know if you have the same problem, but I think you should see a good neurosurgeon. Attributing everything to Fibro can cause us to miss important diagnosis.

  8. Carol says:

    Brilliant!!!

    I think it would be wonderful to personalize treament as very few people (if any) experience FM in the same way.
    Good luck with the reseach … I look forward to hearing more on this subject.

  9. Tina Theisen says:

    I agree. I have symptoms that no one seems to consider as part of my fibromyalgia therefore not getting a complete picture of my condition. It seems as though you get treated in segments and have to go here and there to get fully heard so no one doctor gets the complete picture, or adequate treatment if there is such a thing for fibromyalgia.

  10. Judy Tucker says:

    Is this a clinical trial? I would be interested. I was diagnosed in 1986 and have multiple symptoms.

  11. leslie says:

    I AGREE! MY MAJOR PROBLEM IS MY SENSITIVITIES. ALL MY SENSES! THAT IS WHAT MAKES ME SO FATIGUED. SEEING TOO MUCH, HEARING TOO MANY THINGS AT ONCE. I CAN’T EVEN LISTEN TO THE RADIO OR CD’S. IF I DO TOO MUCH, WHO WANTS TO COOK DINNER!!! I’M THE ONLY ONE HERE SO I TAKE CARE OF MY 82 YEAR OLD MOTHER. GO FOOD SHOPPING AND SO ON WITH HER, THATS WHAT CAN DRAIN ME. MOST OF THE TIME I TRY TO PACE MYSELF.

    • Eleanor says:

      Hi Leslie I seldom hear snythimg about this sensory overload. Thank you for high lighting it. I used to feel I was going crazy , I wish you well. Looking after aged parents can be a challenge .
      Eleanor

    • Brigid Harmon says:

      I also have great difficulties with hypersensitivity to sounds and lights. It can sometimes help substantially to wear earplugs and/or sunglasses. So, I carry both items in my purse — everywhere I go! When I was still able to work part-time, I even wore my sunglasses at my desk every day. Otherwise, the office lighting would give me terrible headaches. When I attend a grandchild’s school concert or play, I wear both my earplugs and my sunglasses. When I go to a movie, I wear my sunglasses. If the soundtrack is too loud, I put in my earplugs. Without these aids, I could not have any social life with my husband nor support my grandchildren at their school performances. It’s not perfect — I still get headaches, but now they are manageable rather than debilitating.

      • Christina Hanson says:

        I have fibro since 2002, horrible pain, no sleep, memory gone forget how to even make coffee sometimes, diaherrea,had to go on disability that was a fight.People think I am just lazy or they say memory loss comes with old age I am 58.I struggle to summon the energy to shower.

    • KELLY says:

      I ALSO SUFFER WITH SENSORY OVERLOAD. I HAVE TO MUTE THE T.V. JUST TO BE ABLE TYPE ON MY LAPTOP. I ALSO HAVE A LOT OF OVER LAPPING S/S. I ALSO HAVE OCCULOPHARYNGEAL MUSCULAR DYSTROPHY THAT CAUSES WEAKNESS IN MY LIMBS, BLADDER PROBLEMS, FATIGE JUST TO NAME A FEW. IT IS HARD TO TELL WHAT IS CAUSING WHAT. THANKFULLY I HAVE A GREAT NEUROLOGIST. SORRY ALL CAPS MY LOWER CASE P IS BROKEN…FOOD & MEDICATION IS MORE IMPORTANT THAN A NEW KEYBOARD.

  12. Lesa says:

    This is an interesting article as we are not all the same. I also find that because I do so much to maintain my health and reduce the severity of my symptoms, it is not always understood how incredibly hard I am struggling to function and that the quality of my life and my ability to do what I want is impaired. I HATE rating the severity of my symptoms as the rating is different if I use my meds or if I don’t use my meds. I often refuse to answer any severity rating questions and just talk in a narrative description about the level of my impairment… “Gee, doc, Tramadol doesn’t control my headaches and I just vomited in my car due to the pain; am going back to my previous headache med.” those kind of statements seem to get their attention. Only if i break down in tears or beg for help, do some doctors realize how serious my symptoms are. I seem so functional and perky most of the time, yet I am constantly conserving my energy and not doing all the things I want to do. The Fibro diagnosis is respected by my doctors, but I have almost every fibro symptom ever listed though only the most disruptive ones ever get discussed. Too much is unknown about fibro and the brain, as well as the complex relationship with female/male hormones. Forgive me for venting…I am having a very rough week!

  13. Gloria Wolfe says:

    This would be a dream come true. If each patient with FM could fill out an evaluation of symptoms and problem areas, then using those criteria, work out an individual health plan, so much frustration could be avoided.

    I’m not too optimistic, however, as doctors seem to want to get in and out the examination room within the 10-minute time frame I’ve heard most use when booking patients.

    Thanks for sharing this information.

  14. Janis Powell says:

    Milunovic is on to something here. He validates what we who have FMS know all too well: It is NOT a cookie cutter, one-fits-all disease. Once the medical community acts on that reality, FMS treatments will be more effective AND less costly — a win-win for patients, their families, doctors and insurers.

  15. Susan Manicke says:

    I have had the diagnosis for 5 years and I know that my symptoms wax and wane. Currently holding steady with Savella 50mg and Mobic. I have a very dear friend who has fibro and goes back and forth about whether she really has it because her symptoms are not like mine. Clearly neither one of us want it but this is def something that can’t be wished away. Having MDs who are aware that they can not follow a “cook book” to treat us and may have to use thought and scientific approaches would be a real breakthrough. I find the younger physicians have less in the way of critical thinking skills. I hope that newer physicians are taught more about treatment options for us.

  16. Mary Lee says:

    I could have written every single one of these comments! The subsets of fibromyalgia are numerous and need to be addressed separately. I do believe it is a neurological condition, and neurologists should be the ones treating us. Early on, it was thought to be auto-immune, so patients were sent to rheumatologists. But it’s not…it’s a central nervous system related condition. So if you’re seeing a rheumy and he’s not helping much, it’s because it’s not really his field of expertise. I find my primary doctor, who is willing to listen, and read articles that I bring in, is as capable of treating me as any specialist.

  17. Linda Pollard says:

    I have had Fibro for over 25 years. Both my daughters-in-law and three close friends also have been diagnosed with Fibro. All six of us have different and varing degrees of the known, and some unknown , symptoms. Fortunately for me, my PCP is a gift from God. He listens, and ask my opinion of choices and outcomes of medications and treatments. I work hard to be proactive for myself and encourage others to be proactive, too.

  18. jan says:

    It would be wonderful to feel that your doctor was really working on your individual concerns. I have never talked to any other sufferer who shares the same problems I deal with daily. I have had this fibro for over 40 years and keep going into flare after flare. I call them reflares which can take up the entire month. Reading a book too long, writing an email too long, playing the piano, household cleaning, anything. …I seem to only have a short 10 minutes or so) and I must move on to something different. I can’t bend over to pick something up more then maybe once or twice which makes cleaning and grocery shopping almost impossible. I ache in the top half of my back almost always and the neck. My gastro doctor found mast cells in my stomach and colon, and says there is a connection between mast cells and fibro. I was wondering if anyone else has been told this. I feel alone in this disease. The diagnosis is mastocytosis. I also have Interstitial cystitis and many other problems. I must quit or suffer more.

  19. samantha says:

    Interesting to me is that almost all FM sufferers are immune to narcotics and have little benefit from neuroleptic, sleep and other drugs. None worked for me and two sent me to the hospital ER. I once interviewed about 100 people with FM at an all day FM conference. Fully 50% of us had a distinct time onset coincident with serious physical injuries, a few with stroke, some were born with it, and the others had no idea. Every single one of us had a unique set of symptoms and challenges. I have 92 of the symptoms, some have a few, but even 1 symptom can be as disabling as my 92. And most of there were active, athletic professionals prior to onset. After years of experimentation, I have found which nutritional supplements and life organization skills work for me, along with my daily stretching and exercise routines. I am thrilled about Dr. Milunovic’s research and efforts — he is a gem and I am excited to follow his results.

  20. Carol Ray says:

    I have had fibromyalgia since the 60′s and they didn’t even know what to do with me. I have had so many different med’s and treatments I wonder what is left to do. Still today, retired, I have to push myself to keep going. I do water exercises every day at the pool. I just had breast cancer in both breasts and went through surgery and radiation. TALK ABOUT FIBOR PAIN, and now the pill Aremidex is making the pain so bad I have trouble doing anything. I stopped the pill and now I have to LEAVE IT UP TO GOD, as to what to do next. It is so hard to watch people doing so many thing that you would like to do and just can’t do it anymore. Makes me feel old and when I quit smoking last year , very fat. WOW! What next?

  21. Kerry says:

    I agree with the article. However being a fibro patient myself and suffering with it for the past 27 years, I feel that we cannot always blame our doctors for not being extremely knowledable about Fibro, or for not being able to provide a proper diagnosis when we want one. Fibromyalgia is a very complex syndrome and some of us have other disorders or illnesses that we also suffer with (so that makes it more difficult for doctors to diagnois fibro). I know that my doctor truly cares about his fibro patients and he even keeps up to date with the latest clinical trials, medications, etc. He has always treated me with respect and has me on an individualized treatment plan. As a Fibro patient, you need to be an advocate for yourself. If you feel that your doctor is not listening to you and they do not have you on an individual treatment plan, then you should seek out another doctor.

  22. Carol Ray says:

    Perhaps you are right. I’m going to seek a Doctor that works with Fibromyalgia. I’m sure we have one in this area.

  23. janetta harrington says:

    Fibro diagnosed in 1985 by rheumatologist. No other doctor believed. Was a nurse and just suffered a car accident in 1997 but had to retire. Took misc. pain med from dr. and did not help, just made me crazy. Finally went to dr. that I knew from school. Now on two types of seizure medications and one muscle relaxer, not cured but can function.

  24. Dixie Nickel says:

    I don’t know how long I have felt so bad, but it only gets worse. My fatigue has caused me to quit a job because I have slow reaction time, I am too weak to handle some of the special needs students I work with and I have fibro fog so bad I make mistakes, My husband found that I had made a bunch of charges on the internet on 2 credit cards that put us into debt. I did not remember how I had even gotten those cards. I am now more depressed than I have ever been and I am being tested for dementia. I have to work , but I am 68 and have really meessed up because of fibromyalgia.

  25. Paula Ronksley says:

    I have suffered with fibromyalgia symptoms for most of my life 60 years in fact and no one knew what was wrong with me, I am still not getting much help on cocodamols 30/500 and amiytriptaline tablets to help me sleep, I cannot tolerate tramadol at all. I was diagnosed with this condition firstly by a physiotherapist only then did I see a rheumatologist this was 7 years ago! I have been discharged twice by these people the last time by a muskoskeletal specialist, he said there was nothing that could be done only to alter my posture and that it wasn’t (life threatening). I should like to see anyone in chronic pain, fatigue etc walk straight. Can anyone out there help me to get someone to listen and to help me, or am I just going to keep going on my own and managing these terrible symptoms. P.s. My mother suffered from polio as a child and suffers very similar symptoms to myself I have wondered if others like myself have had a parent who had polio and could there be a link? I would be very pleased to hear from other sufferers or clinicians who could help.

  26. shireen fredericks says:

    Hi all I suffer a lot from burning pain from head to toe the headaches are getting verrry bad will the doctors ever find a painmed that can give us abit of relieve I feel for my sisters out there with fibro let us soldier on we must not give up GOD BLESS

    • Kelli Smith says:

      I was diagnosised with fibro about 15 years ago. I’m not positive what brought it on but my guess would be the stressful job I had as a medicare biller at our local hospital. My fibro has gone from bad to worse. My headaches never go away, sometimes I swear my head is on fire. My neck, back, hips, arms, elbows, legs, feet and hands all either hurt or go numb. I have a very good physician’s assistant but I’ve been turned down for disability. My fibrofog is getting much worse. Can’t hardly remember anything anymore. When I try to to housework I pay for it for the next 3 to 4 days. I’m 51 years and feel more like I’m 80. I have a wonderful husband of 33 years and he helps me with everything and more. How can I expect him to do all this? There’s got to be something out there that can help better. I’m on Cymbalta, 60mg. 2x’s day, Ativan 1mg up to 3 per day, Ambien 10mg nightly, Topomax twice daily, and Flexeril up to 3 x’s daily. I’ve been off and on others. I don’t get much relief from anything. Looking for suggestions.

  27. Dima says:

    Natural Supplements like omega oils help me with the pain. I use Electro Cranial Stimulation. It helps, but It took long,(3 months). I agree this is a central nervous system related problem. I struggled with sleep for the past 11 yrs . All these time I refused to take antidepressant, as I knew I was not depressed but frustrated and tired from not sleeping. I was only diagnosed a year ago. Lately I have been having better sleep:( waking up at 2am, yes, I know. that is better sleep to me!) The worst is when I lie awake from 12.00 midnight and never go to sleep again!
    I agree with Cindy : No one knows what you are going through. But trusting in and knowing the Greatest Being in the Universe, has helped me to understand and accept my own suffering. Today I mowed the lawn! Tomorrow I might be in bed the whole day… That’s just how it is.
    I am an analytical chemist with more than 20yrs experience, and you can imagine my frustration at not being able to remember the names of laboratory equipment, never mind trying to write a technical report. Do listen to your body and look after your brain as much as you can! I stay away from negative people, negative news, gossip etc. Remember how you were before FM, and as far as it depends upon your ability, try to be that person. It helps.

  28. Denise says:

    Several doctors I went to think FM is all in my head or brought on by something in my childhood. Ok I have read that traumatic things in life can make FM worse but I am not in severe pain because of something that happened when I was 5!!! The doctor I go to now is great but I still do not sleep well but we keep trying new things. Accupuncture does help when I am having a flare up if I can get a appointment with him. Ten years and a ton of pills and I live in pain daily you would think someone could figure this out . I would love to stop taking all my meds.
    One pain doctor said Vicodin did not help with FM. Has anyone else ever heard that???

    • kathi says:

      vicodin for breakthru pain, savella 100 mg twice a day and 300 mg if neurotin seems to be working for me right now. On days that the weather changes so do my symptoms….. I also have the back problems which seem small in comparison to the fibro, spinal stenosis l4,l5, bulging discs in cervical, etc I do things in small timeframes trying to not overdo anything, heating pad helps with pain too. I could go on and on but hope this helps ….good luck to all!!

  29. Robin says:

    Great article! I still always feel like a hypochondriac, with the myriad of symptoms I present with to my dr. I’m tired of people thinking I’m lazy because I’m too tired & in too much pain yo sooo things. Lost all my “friends” too. My main source of support is all of you here on FM Network. Thank you all for sharing your stories. I’m not alone in this.

  30. Kelly Kanzler says:

    I’m going to check out this DR as I live Near Chicago……….I also Have Fibro, Extreme Hyper Sensitivity, Excessive Daytime Sleepiness due to Pain/Fatigue;-(;-(…… One Hip Higher Than The Other, Extreme Scoliosis for Years and Years………….Tailbone Injury, IBS, And on and on…..I am on Soc Sec Disability and spend every penny on Gluten Free Food, Dairy Free Food, some Meds, Raindrop Therapy, Acupuncture, Cupping, Young Livng Pure Organic Oils and on and on…..I Believe The Biggest Challenge Of Fibro/Fatigue….is Unpredictability and The Symptoms Change From hour to hour for some people like myself……The Nest Day Brings Completely New Symptoms based on our Sleep…..If we get any at all…..;(;(;(.,,,,…. Keep Fighting….I see Myself In Each Person’s Reply…..My Family Doctor is FAR BETTER with suggestions than the Rheumatologist I went too……. NO ONE CAN TRULY UNDERSTAND HOW LIFE CHANGING AND DEPRESSING THIS DISEASE CAN BE….UNLESS THEY HAVE THE SAME STMPTOMS…..GOD BLESS EVERYONE AND THEIR FAMILIES TOO……….

    • Shelly says:

      Kelly,
      you are soo soo right! we are the ones who live in this world of healthy people that don’t know and some really could care less.
      sounds like you and me have some of the same issues and we live some what close. I live in Michigan by the Indiana state line (by Notre Dam)
      keep reading so you can teach your Doctor and if we all do that we will all benefit from it.
      God Bless us all.

  31. Sally says:

    Not only do I think individual treatments are necessary but different meds on different days/weeks/months as symptoms change. Some days I am nearly pain free, and agile (comparatively), others I crawl up the stairs on all fours and clench my teeth for 48 hours at a time.

  32. Diane Singleton says:

    This article instills hope for me. I don’t believe we’ll ever be well until we find doctors who are not intimidated by diseases they aren’t trained in. They need to continue to learn, as with any other profession. I had a dr. in Lexington TN who was learning as I was learning. I moved to East TN and started going to a dr. who was doing the same. She went to seminars, lectures, etc and I felt safe in her care. Unfortunately her PPO list changed and now I am going to a dr who says all she can do is give me steroids. There aren’t many drs in this area to switch to, none who will treat the entire “me”. It’s impossible to go through my list of symptoms in 6 minutes with the dr’s hand on the door knob. I feel as if she is doing me a favor by giving me that 6 minutes. That’s got to change.

  33. Kert says:

    I literally jumped out of my chair and danced after reading this!

  34. Dotty says:

    Hey, you’re the go to expert. Thanks for hanging out here.

  35. Kitty Cash says:

    That sure would be nice to be treated on an indivual basis since I have never talked to anyone who suffers the exact same way I do. But seeing how I can’t even find a doctor who will give me much help at all, I think that one is on my wish list. You know the funny thing is when I was finnaly diagnoised by a reumatogist he stated to me. Well you will be in pain for the rest of your life but at least you won’t be crippled. I’m very thankful to God I’m not in a wheelchair, but I sure feel crippled. I have not cleaned my house and I have handicap plates on my car, because when I do feel good going into a store I feel awful coming out. I think the Docs still have a long way to go in understanding this FMS

  36. debbie says:

    I am 53 years old and was diagnosed with fibro 2 years ago by 3 doctors. I was not sure if this was it and I finally had 2 of the doctors who specialized in this to give me a final diagnosis because of my arthritis also. I have been on savella, mobic, currently taking neurotin and also melantonin to see if this would help me sleep. I have had accupunture which helped temporary, flexeril which helps at times but I have the fibro fog which is really bothing me. I also do not sleep and have been med’s to where maybe 2 hours of sleep and cannot go back. I feel worned out. Also take med’s for depression, but it takes alot of energy to do something.

  37. Peggy says:

    What a timely article! I have just returned from my bi-annual visit with my Rheumatologist, and as usual, I leave frustrated. She is a wonderful person, but there is nothing “personal” about my appt. Twice a year, for 20 min., we chat. Ten minutes of that time is taken up with a list of my current meds, taking my blood pressure and weight. The rest of the time, she refills my scripts. We NEVER discuss Fibromyalgia, either in general or specific to my condition. I get more up-to-date info online or in magazine articles than I do from my appts. Isn’t there help for us anywhere? I often wonder if she even reads/studies the illness, or just focuses on arthritis. Actually I haven’t figured out why we as a group of sufferers are sent to rheumatologists anyhow? How did that get started? It isn’t a joint condition. The latest research seems to indicate nerve pain? Thanks for a place to vent my frustrations..no one else understands, do they? Hang in there, folks. I pray for a breakthrough to stop this hideous illness or at least force it into remission. It robs us of too much of the joys of living. I try to remain thankful for the little things; that REALLY helps!

  38. janet alexander says:

    I appreciate all your comments. I had a rheumatologist who found I have Sjogrens as well as Fibro. He couldn’t understand why I was happy but it was so good to have a name for all this pain and everything else. I am still trying to find more help. I have found a neurologist who is treating all the pain in my hands and feet with a Rx. B vit. combo which has helped more than anything. At least with that part of the pain.
    I,too, have Institual Cystitis. It is debiliating for me. Watching diet has helped with the pain. Also some supplements have helped.

  39. yogabird says:

    Living with Fibo…my sugestions? TM, ayruveda, yoga, & walking outdoors, western medicine hasn’t a clue!

  40. Olga R. says:

    I was diagnosed with Fibro about 4 yrs ago and about 3 yrs ago was made a part time worker with Medical professionals. Most of them do not believe in Fibro, and I made the mistake of telling them about my fibro. I will be leaving soon from this place of “work” because of the changes in government work and the lack of WORK accomodations. Please continue to inform us all with your updates. Very good job with your articles.

  41. Jan says:

    As previous comments point out, no two people with fibromyalgia experience the exact same symptoms. I also have issues with the new diagnostic definition and hope research steps up. We are a mass of people who are stumbling around trying to get help. A positive attitude is key to maintaining hope.

  42. Val says:

    I will be seeing a neurologist early May as I now believe it is not a condition my Rheumatologist can help me with. All he wanted to do was put me on pain meds. I refused but go on anti flamitory meds every couple of years for about 1 to 4 weeks. This gives me some relief for some of my facial and neck pain. Helps me think I am not going insane with this condition. But I think it is nerological so thanks for all your comments.

  43. logicitc says:

    test

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