Rheumatologists debate whether fibromyalgia is really a disease

Originally published in HCPLive.com

Rheumatologists debate whether fibromyalgia is really a diseaseWhat defines a “disease?” At what point does a collection of symptoms and causes make the transition from “condition” to disease? Is it when a consensus forms around a concrete, observable, and repeatable set of biochemical and/or physiological processes and outcomes? Surely there is little doubt that diabetes or hypertension qualify as a disease under the standard paradigm. But what of the quite large range of complex chronic conditions for which there is no known cause (almost all autoimmune inflammatory diseases, for example)? How do patients, the medical community, and society decide what gets to be called a disease, and how does that process inform the ways in which we treat the patients who have the disease?

On Monday, October 19, at the 2009 American College of Rheumatology/Association of Rheumatology Health Professionals, Anthony Russell, MD, and Leslie Crofford, MD, debated whether fibromyalgia is a true disease, and discussed the best way to approach patients who present with the characteristic symptoms.

Russell basically took the position that fibromyalgia does not rise to the level of discrete, measurable, observable disease, instead preferring to view it as a social disorder that is determined by societal, historical, and other factors and contexts. “Is fibromyalgia the cause of suffering or a term used to describe it, equivalent to chronic somataform disorder?’” he asked. He spent much of his allotted time discussing the phenomenon of how the label we attach to a disease or condition, and how our perception of that disease, changes over time. This mutability of language and perception, and the need that patients and clinicians have to give a name to the cause of illness or distress, what Russell referred to as pathoplasticity, has led to a whole host of loose collections of commonly experienced symptoms to be elevated to the status of disease.

Russell returned several times to the concept of memes and the important ways that our social context leads us to identify, characterize, and communicate about the causes of sickness, pain, and anguish. This can build up a kind of critical mass in our collective conscious and lead to the phenomenon Russell called “diagnosis of the month.” He pointed to sick building syndrome and multiple chemical sensitivity syndrome as other examples of this. We will go to great lengths, he said, to try to explain and put a name to medically unexplained symptoms.

Leslie Crofford, MD, began by asking the audience, “If fibromyalgia is ‘disease,’ what is the role of rheumatologists in the diagnosis and management of patients with fibromyalgia?” Crofford said that a disease is any abnormal condition that impairs bodily function and is associated with specific symptoms or signs. She asked, “Do you need to have a cause to have a disease?” and pointed to several chronic diseases with no known cause (including the aforementioned autoimmune inflammatory diseases). Other questions to consider as part of this slippery process of naming a disease: When does a patient have a disease that needs to be acknowledged? Who decides and why?

Crofford said that she thinks the debate over “disease or not” boils down to whether professionals can recognize a common set of symptoms and signs, whether patients with these symptoms have anything in common (genetic factors, triggering factors, psychologic changes), and whether patients benefit from understanding the nature of the symptoms and display a predictable response to rational treatment.

She said that, whatever their flaws, the ACR criteria for fibromyalgia identify a discrete group of patients, and that patients meeting ACR criteria for fibromyalgia exist on a spectrum regarding symptom domains, heavily weighted to psychological distress, coping issues. She also identified three key categories of information to consider:

Etiology: Genetic vulnerability factors for fibromyalgia are likely shared with depression, anxiety, and chronic regional pain syndromes. Trigger for fibromyalgia , both physical and psychological, can be identified. The physiology of central pain and biochemical alterations in the cerebrospinal fluid have been identified.

Treatment: Developing a treatment plan requires that the patient have a conceptual framework of their condition (the first step of which is being able to put a name to the cause of their affliction). Most patients seem to do better with non-pharmacologic treatments in which they can participate (the self-actualizing patient). Patients treated with pharmacologic interventions tend to do better when treatments address central rather than peripheral targets

Approach to patient: Although there is some concern that labeling patients with a disease makes them worse, there is no evidence supporting this.

In closing, she said clinicians should remember that whatever their position is in the disease/not a disease debate, they need to be aware that their patients have symptoms that adversely affect their quality of life and/or function, and they deserve thoughtful consideration. While acknowledging the abilities of primary care physicians and other healthcare professionals to treat patients with fibromyalgia, Crofford said the rheumatologists are uniquely trained and qualified to evaluate these patients, provide the best information, and devise the most effective treatment plan that meets the unique needs of each individual patient.

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  • Doc99

    I’d post more, but this chronic fatigue syndrome is killing me.

  • http://thehappyhospitalist.blogspot.com Happy Hospitalist

    Pathoplasticity. I love that word. It seems like it should be reserved for the crazy plastic surgery population.

  • http://curbside.posterous.com Nuclear Fire

    Stages of Growth of a Fibromyalgia Diagnostician:
    Stage 1 (medical student): OMG, there is no such thing as FM. You’re all just a bunch of whiny losers without evidence of real disease who want to be on disability.
    Stage 2 (Intern): Fine, “FM” is “real” but the treatment is to get off your fat butt and exercise daily. So don’t whine to me unless you’re doing that and don’t ask for disability because being active is the “treatment” and there’s no way you have more pain or less sleep than I do.
    Stage 3 (Resident): Wow. I’ve seen three patients now with the exact same symptoms as fibro-foggers except they’re not whiny, drug-seeking or trying to get disability. They’re all high functioning, compliant, had their pain go away with exercise and return when stopping exercise and resolve again with exercise. They don’t even mention their fibro symptoms to me now in the primary care clinic unless I ask about it. Maybe this thing really is real. Better hit up Pubmed.
    Stage 4 (Fellow): Sigh, why am I getting another fibro consult. It’s not rheumatic–it’s a disorder of central pain processing. It’s a freaking neurologic disorder mostly related to chronic untreated pain from other diseases or from sleep disorders. Either have the primary deal with it or just to piss off my (neuro) wife, consult neuro.
    Stage 5 (Private Practice): Yes! Another quick fibro consult. I love the easy money.

  • http://thehappyhospitalist.blogspot.com Happy Hospitalist

    That’s freekin’ funny stuff

  • http://www.healthmattersshow.com Cinda Crawford

    It makes me sad to see professionals such as these listed disparage an illness and 6 to 10 million patients with Fibromyalgia. There’s nothing trivial, funny or inconclusive about it. There already is specific diagnostic criteria, just not a test… not yet, but maybe soon. I, personally and professionally, would love to see more compassionate reporting and actually what you as a doctor suggest to help Fibro people feel better and resume the lives that they want again so desperately. None of them want to be sick. I welcome your comments at the Health Matters Show. Thanks, Cinda Crawford, host of the Health Matters Show and former Fibromyalgia and Chronic Fatigue Syndrome patient.

  • http://curbside.posterous.com Nuclear Fire

    I’m not sure we’d be much help to a “FMS/CFS Expert and Sacred Cellular Healing Health Practitioner” who “discovered and developed a proprietary brand of energy healing she calls Sacred Cellular Healing (SCH)” that “works for many illnesses” such as “Fibromyalgia, Chronic Fatigue Syndrome and autoimmune illnesses.”

    Maybe you can educate us so I can stop wasting my time researching JAK-STAT pathways and treating autoimmune illnesses with TNF alpha inhibitors.

    I believe the reason fibromyalgia has such a bad reputation and it’s been hard to convince some doctors it’s real is because for every 1 organic patient without psychiatric overtones you have 1000 with so much noise from the psychiatric overtones and snake oil salesmen you can’t weed out the signal.

  • Aestivate99

    Dear Nuclear Fire, I thought I keep reading on KevinMD that there’s no such thing as easy money for docs. Sorry, you’re not that funny and I agree with Cinda.

  • David

    Nuclear Fire,

    Your comments were very funny, there is always someone more sensitive than yourself to try to make you feel bad.

    Fibromyalgia is a work in progress. As with any pain syndrome, we don’t yet have objective measures of pain, and so everyone (doctors, nurses, other patients) are always concerned that they are missing the ‘real problem (depression, anxiety, other sources of pain, malingering). It could be perceived as dishonest to just label something as ‘Fibromyalgia’ and prescribe drug x, instead of looking deeper into the issue.

  • http://www.thedoctorsrheum.com Doctors’ Rheum

    I don’t know of any of us who have reached stage 5 who think of a fibro consult as “quick” or “easy.”

  • R Watkins

    “Crofford said the rheumatologists are uniquely trained and qualified to evaluate these patients, provide the best information, and devise the most effective treatment plan that meets the unique needs of each individual patient.”

    Most of the rheums in my neighborhood won’t take “fibro” consults.

  • Nuclear Fire

    @ Doctors’ Rheum: Compared to Shrinking Lung Syndrome; rapidly progressive diffuse systemic sclerosis; RA failed therapy to HCQ, SSZ, LEF, MTX, all TNF, and ritux; Class IV/V Lupus Nephritis; hemophagocytic lymphohistiocytosis; Rheumatic diseases presenting as paraneoplastic syndromes and of course the patient whose been worked up at two other academic centers by pan-specialists and is continuing to lose weight have ferritins in the thousands and constant fevers and leukocytosis without a diagnosis I do tend to think of fibro as quick and easy not to mention non-lethal and empowering for the patient. I’ve never found it takes anything more than some time and understanding combined with patient education. I do know quite a few rheumatologist who no longer accept consults for fibro, so maybe you’re right.

  • Nuclear Fire

    @ David: I agree. In fact, it used to be that I’d see patients getting worked up to the hilt when the diagnosis was pretty obvious. In contrast, now I’m seeing second opinions on fibro where they haven’t had what I’d considered basic evaluations for inflammatory conditions, age appropriate cancer screenings, etc. “Oh, you have pain everywhere, you must have fibro. Take this Lyrica and go away.” Me: Well, that calcium of 14 is a little concerning…

    I still think of fibro as a diagnosis of exclusion.

  • http://wellescent.com/blog/siteblog.php?entry=seeing-the-invisible-in-fibromyalgia Wellescent Health Blog

    At some point, the debate as to whether fibromyalgia is a disease or not is just that, a debate and a theoretical one at that. A patient has symptoms and is suffering regardless of whether they may have attempted to diagnose themselves. At that point, it is up to the physician to use all of the available diagnostic tools required in order to find out how best to alleviate the suffering of the patient. Whether or not that results in a diagnosis of fibromyalgia is only relevant in so far as it solves the problems for the patient.

  • James

    Rheumatology academicians for 30 years have labored away at a confabulatory diagnosis (the neuro-interpretive hypothesis termed fibromyalgia) which depends on NOT finding proportionate musculoskeletal pathology to explain the patient’s complaints. It’s just as hypnotic and just as wrong as the acid-stress theory of ulcers.

    What is the pragmatic physician to do with all this ? Here’s another way I can offer. When you get down to concretely examining patients with seemingly “widespread” soft-tissue pain (which for many has a troublesome pattern of fluctuating persistency), you find a selection of very rational ailments. The most common are trapezio-cervical strain, rotator cuff syndromes, epicondylitis, iliac crest strain, and trochanteric pain disorder (a form of gluteus medius tendinopathy). It takes about 3 focal sources of pain to flood a person’s reportage to the point where terms such as “pain all over” start to be heard. Of 30 more-or-less common soft-tissue ailments of the human body, all occur in the setting of everyday auto-traumatic myo-tendinous resiliency disorders. There is nothing mysterious or neuro-interpretive about them — in fact they are biomechanically explainable and even inevitable for our locomotor structure and its weak links. They are not “muscular” specifically but are the result of powerful normal muscles transmitting forces through weaker myo-tendinous and tendo-osseous transition structures to cause pathology. Rheumatology has done a poor job of educating the medical world about myotendinous disorders. The published investigators have gone so far off the rails that they literally speak another language and have created para-scientifc factoids which seem to justify their hypothesis. For instance, all the findings of abnormal fMRI’s and altered pain thresholds are the result of comparisons with pain-free control cases — if you used other pain populations as comparators you’d find that the “abnormalities” are simply the body’s way of handling any persistent pain. Further, the tender point exam is a useless exercise searching for abstract signals that the patient is too sensitive.

    Why not instead do an anatomically-informed exam searching for rational pathology? The human locomotor system has stereotypical themes which are easily enumerated and clarified … even in the most neurotic individuals. In fact, finding and explaining those themes makes the patient a lot less neurotic.

    Most rheumatologists, rightly, would rather chew tinfoil than see a patient for whom they expect to use the “fibromyalgia” paradigm. It’s a painful exercise in disinformation, it’s misogynistic, and produces emotional and cognitive dissonance in all parties.

    Contrarily, it is a surprisingly satisfying medical experience to deconstruct “widespread” pain into its components and find that the individual features are anatomically rational (and frequently very treatable). No mysteries involved and no matrix of non-locomotor symptoms is attached (all that irritable bowel, fatigue, cognitive defects, bladder stuff is common in the general population).

    The fibromyalgia hypothesis has been very damaging to medical reasoning and is one of the most egregious intellectual misadventures of our time.

    For anyone further interested in this and who’d like an option to the fibromyalgia theory of Smythe, Yunus, Wallace, Clauw, Russell, Crofford and others … I can provide a powerpoint presentation as well as a link to a grand rounds presentation detailing myotendinous pain disorders and developing a critique of fibromyalgia.