Does fibromyalgia really exist?

An article sure to generate some heat from people diagnosed with the disease. Is this more drug mongering?

Advocacy groups and doctors who treat fibromyalgia estimate that 2 to 4 percent of adult Americans, as many as 10 million people, suffer from the disorder.

Those figures are sharply disputed by those doctors who do not consider fibromyalgia a medically recognizable illness and who say that diagnosing the condition actually worsens suffering by causing patients to obsess over aches that other people simply tolerate. Further, they warn that Lyrica’s side effects, which include severe weight gain, dizziness and edema, are very real, even if fibromyalgia is not.

email

Comments are moderated before they are published. Please read the comment policy.

  • Criminallopath

    The only “disease” at issue here are of the labeling variety or if litigation is involved then of compensation neurosis. I challenge anyone, going back to Wolfe’s paper describing the ACRs position on this “disease” to anything in more recent literature to show one single objective (whining when pushing on a “tender point” is NOT objective and neither is more than three months of whining = chronic pain) diagnostic criteria when it comes to this “syndrome.” This is our modern Railway Spine.

  • Anonymous

    Oh terrific, another article calling women (let’s just say it outloud because this mostly affects women) a bunch of whining malingerers who have nothing better to do than obsess over normal aches and pains.

    As a woman diagnosed with fibromyalgia in 1990, I still put myself through college as a single parent and have worked steadily until this last year.
    With the symptoms of fibromyalgia coming and going like a herpes infection, but I managed and moved on with my life even with the symptoms.

    Why has the pain and problems (IBS, Diverticulosis, swelling, headaches, sleep disturbances and that horrible all-over pain) suddenly increased over the last year? I have no idea. It certainly was not more stress. I was financially and emotionally stronger than ever before. Do I have suspicions that the sudden increase had something to do with a hysterectomy for adenomyosis and a sudden loss of hormones from one ovary removal. You bet I do. Don’t bother contributing it to an emotional loss of my uterus, I was delighted to see that trouble-maker go.

    I was having the time of my life when the fibromyalgia reared its ugly head and struck me down with a vengence. Over the years, I had managed it with ibuprofen, an electric blanket and managing symptoms. Now the symptoms are out of control and my frustration is at scream level. I miss my trips to the beach and lunches with friends. I miss the daily comaraderie of work and the weekly adventures with my grandson. I miss those spur of the moment road trips but mostly, I just miss being me. I am fighting this with every ounce of stubborness I have left, but it is an daily battle. Fibromyalgia is real and it hurts and it ruins your life.

    But you doctors just run around labeling us what you will. You aren’t helping and your opinions aren’t making our symptoms any better. Your frustration at not being able to give definitive answers to your patients is your problem, quit making it our problem. We can accept that there is no lab test to give us a definitive diagnosis and we can accept that we may just have to deal with each symptom as best we can but we will not accept that fibromyalgia doesn’t exist. And I suspect if many of these doctors had a mother, wife or sister come down with the symptoms, there would be less labeling and more treatment.

    Just a thought — I’m old enough to remember when we were told that menstral cramps were all in our head, then later on that cramps weren’t in our head but we were exaggerating them. My how twenty-five years has changed that misdiagnosis. Look how long it took to find the causes of cramps. So those 15 years of cramp hell were real, not whinning and complaining over aches that other people tolerate. And not to mention endometriosis, fibroids and every other illness that generally affects females. Ditto for migraines.

    As the daughter of a former medical researcher, my thought to all physicians is listen to your patients, hear what they are telling you and believe. We expect nothing less, nor should we have to. We are fighting to win the battle over fibromyalgia and we need your support, not your scoffing and minimizing. If you aren’t for us, then you are against us and no help.

    Sincerely,
    A Fibromyaliga Patient

  • Anonymous

    I was enraged upon learning of the article in the NY Times and Dr. Wolfe’s comments regarding fibromyalgia. I have been “diagnosed” with fibromyalgia for over 12 years.

    Prior to fibromyalgia, I was an active healthy woman – happy to go skiing, biking, hiking, sailing, swimming, play golf, tennis, etc. I had recently completed an MBA and was thoroughly enjoying a life beyond work and grad school.
    An athletic injury appears to have triggered the onset of FM.

    I have worked in healthcare for 20 plus years as a medical technologist and several more with a major healthcare IT vendor. I have no desire to be disabled and have never used fibromyalgia as an excuse. I have tried to live as normal a life as possible since FM is invisible illness. However, this illness is incredibly frustrating and disabling. Having had to give up so many important things in my life, it is insulting for a physician to question its existence.

    I’ve seen many things in healthcare over the years and I’m well aware of the limitations of all aspects of the system. These limitations include the inability to “download” and retrieve at will the vast expanse of clinical, technical, and business related knowledge providers “need” to know. IMHO, Dr. Wolfe is not the be-all/end-all nor the know-it-all of FM!

    I had not bothered researching fibromyalgia recently since what I have previously researched in the mid 90′s (including international research) was actually being put into practice by a few clinicians with a national presence. Outside of those few clinicians, the majority of practitioners were and are largely ignorant of treatment options.

    I recently learned of a Canadian Consensus Document that appears to have been acknowledged by Canada, the UK, Australia, New Zealand, etc. I have only downloaded the Overviews of the Consensus Documents for FM and CFS/ME. What I’ve read so far in the consensus document as well as other findings online has become very intriguing.

    To have Dr. Wolfe’s comments quoted recently in the Times served to spark my ire!

    Sorry for the rant but I am busy working full-time, coping with FM limitations.

    I would not wish this illness on anyone. I might just like to see Dr. Wolfe endure it for perhaps a a year or two to see what it’s like. Then, I am sure he would now longer question its existence.

  • Anonymous

    It’s amazing how much ignorance still exists in such educated brains. I was told TODAY by a rheumatologist, that if the word fibromyalgia were entered into my medical profile, it will cause me to lose credibility among the medical professionals within that network. I would be labeled a chronic complainer, and all subsequent illnesses or diseases would be written off. I am irate! To suggest that I’m faking for financial gain (to sue someone, go on disability or get more support from a former spouse – I’m happily married) or for an excuse to dodge any/every ounce of daily responsibility to my family, with or without notice, is crazier than they suggest I am. I guess I’ve had years of training – - faking cramps, PMS, false labor (and real labor!), etc. Best believe, if it affected testicles, it’d have a cure by now.

  • Anonymous

    My mother came down with this awful illness and believe me it does exist. She can’t even get out of bed sometimes because she is in so much pain. I’d like to sock Dr. Wolfe in his stupid mouth. He doesn’t have to suffer from this stuff or help someone who does. What a stupid moron. You ladies are right, if it affected a lot of men we’d have a cure immediately.

  • Anonymous

    I am a 44 yr old full time working, single mother. I have worked hard all my life. I am a joy as a person. I have 2 degrees; one in health care and 1 in marketing. I am a professional singer too and love it. I have avoided extended sick time this year by dropping my days at work from 5 to 4. This includes dropping £7000 per year on salary and I have used up nearly all my holidays for this year for rest. I was diagnosed by a rheumatologist yesterday as having FM. This is a nightmare.I work with a pharma’ company in the analgesic market and I know I am in for a rough time. They will think I am a melingerer and it is almost certainly promotional death at work. My only hope is that my own GP will have an empathic approach towards me. Dr Wolfe can go stick pins in his eyes and see if it hurts!!!!!!!
    I am happier than I have ever been in my life and this is a terrible blow. May I say thank you to the people who have commented before me here. I recognise myself in you and i have benefitted greatly from reading your comments. Thank you.

  • Drea

    I just ran across your post while researching an article on integrated health clinics (MD-run) for fibromyalgia treatment.

    Would Wolfe et al. tell a patient with a brain injury, also invisible, that her symptoms were also “in her head” and that she was a chronic complainer? Is fibromyalgia fake because it doesn’t produce a nasty rash, or because diagnostic techniques are rudimentary?

    Many doctors recognize that this disorder is real. The smart ones realize that its status as a functional illness requires that it be functionally treatment.

    Doctors like Wolfe allow their inflexibility to interfere with their supposed dedication to the Hippocratic oath–”To practice and prescribe to the best of my ability for the good of my patients, and to try to avoid harming them.”

    Fortunately, fibro sufferers have increased choice these days, and often do choose to use different forms of medicine after experiencing failure with traditional allopathy. Doctors should take a careful look at how their attitudes affect both their personal businesses and their overall reputations.

  • http://kevinmd TwinMumma

    I can not believe how people would believe this is not an illness. Or actually unfortunatly I would as their are actually people who wish they had a chronic illness to keep them out of work. Let me tell you I would trade with them in an instant. I belived thos crazy doctors of mine that blamed my aches and pains on one thing or another. I believed them it was in my head and even seaked in patient treatment that it was all in my head. Well after taking the doctors advice and improving a weight problem to a point I no longer had a weight issue the symptoms only got worse as the fat was no longer their to support the weight. I was always an active person no matter what size I was and now that I am the smallest I have ever been I can’t excersize like a normal person and the doctors FINALLY believe me their is an issue. I don’t knwo why they didn’t when I kept dislocating joints on a regular basis and had a sleep disorder to boot…..yes even now after loosing all the weight.

    I went through a twin pregnancy and was put on limited bed rest mid way through the pregnancy and I swear it made it worse. Granted a lack of mobility makes this worse but too much makes it evem more of a killer. The pain is real as I DO NOT WANT THIS DISEASE. I would do anthing to trade NOT to have this disease and that includes trading a limb for it. the pain is awful and it has now gotten to a point I can’t live with it. It is NOT something I can just ignore. Believe me I have tried. Thank God for Lyrica as I can not function with out it. I rock myself crying if I am off it along w/ the pain meds I need to function.

    My take on ONLY my sitiuation. I believe people have an alotment of stress they can handle in one life time. I had a child hood so stress full it was awful. I was the scape goat for a very small home town class of a wopping 42 kids. my sleep issues were soo bad they labled me with 5 learning disabilities that I was later tested for as an adult so I could learn to work with them and it appears I had not one. back in my school years the chapter 766 program exhisted and they littrally put our name up on a chalk board as to what time we had to leave the room (their was 2 of us) to go to the learning center. Well you take a small class room and the kids mocked us and humiliated us to a point I could not take it. they pitched things at us. Called us Re Re’s…. every waking moment was a ball of stress and anxiety for me growing up. my nerves were shot by the time I was in my early 30′s. I was exhausted due to a sleep disorder and stressed out. do I think this disease is mental for me. No not really. I belive I built up so much of the stress chemical in me I can not function let alone I am physcially exhausted on top of having lax joints it is a supper bad combination. I sleep w/ a c pap now when I can and I try to destress as often as I can….but it was those bozo doctors who could not recognize a tired kids when I was young…..that forced me into a stressful situation and my parents even sent me to a special school in the summers where they new I was tired. they use to tell me I was not like the other kids…. so come on people this is real…..it hurts like hell. So much so that their are days I think that not living would be better. so if the drug companies have come up with something to help then let them. I never took a drug in my life. I didn’t even like taking asperine. but now I am forced to live with it every few hours.

    God Please I wish this was a night mare I would wake up from and find out it was not real. I could get back to my long long walks and bike rides….I could play w/ my children as often as they want vs as often as my muscles allow me. If their are any of you who still think this is not real, and as I said I can see how you may think so as their are those who want to take advantage of the disease…..then spend a day with me. spend just a few hours in my shoes. You could not do it. I am not so sure I can every day but I have to….I have to not allow this freaking pain get me….stress is a killer and if we just tought our children from preschool on up about it and how to handle it and how to accept others for who and what they are then I know their would be a lot less fibro patients….

Most Popular