Fibromyalgianess, polysymptomatic distress or what?

A recent FM Perplex commentator wrote, “Fibromyalgianess sounds ridiculous.” As the inventor or father of the term, I couldn’t agree more. But here’s how it all came about. The 2010 “American College of Rheumatology Preliminary Diagnostic Criteria for Fibromyalgia and Measurement of Symptom Severity” [1] proposed two variables for the diagnosis of fibromyalgia. One counted the number of painful regions a patient had (0-19) and was called the widespread pain index (WPI). The other was a score that came from combining individual scores for fatigue, unrefreshed sleep, cognitive problems and the degree of symptom reporting. That sub-scale was called the somatic symptom scale (SSS). When the WPI and SSS scales were simply summed, the result was a single (0-31) scale. The scale, which we will call the polysymptomatic distress PSD scale for now, had some astounding properties. It predicted all (bad) fibromyalgia outcomes. The greater the PSD score the more abnormal … anything you want … work disability, obesity, income, global severity, pain, quality of life, post-operative pain, and so on [2].

One interesting thing about the scale, it didn’t observe the boundaries of fibromyalgia diagnosis. In practice, we observed that the scale ranged from no symptoms to a very high score. And the scale was comprised of the key fibromyalgia symptoms. This scale, by the way, when plotted against outcomes, provided evidence that there was no simple fibromyalgia: yes or no. Instead, one should and could think of fibromyalgia simply as an artificial point on a fibromyalgia symptom scale.

In our first attempt, we called the scale the “Fibromyalgia Symptom” (FS) scale [3]. That didn’t seem to carry the full impact of the scale because the scale wasn’t just about symptoms, it was about those symptoms that were most characteristic of fibromyalgia and fibromyalgia diagnosis. It was a measure of the essence of fibromyalgia. But because the scale was an effective measure of fibromyalgia qualities in those who did, didn’t or didn’t quite meet fibromyalgia criteria, using the term “Fibromyalgia Scale” destroyed its usefulness as a general measure. So what should we call it. My first attempt was to use the term fibromyalgianess [4], which perhaps characterizes the scale pretty accurately while at the same time being a “ridiculous term,” and one that would hardly be accepted outside the pain/fibromyalgia community. I suggested a replacement term, the polysymptomatic distress (PSD) scale. And thereupon came about an ongoing and contentious argument between Dan Clauw and me. The term, polysymptomatic distress, came from the writings of the Oxford psychiatrist, Simon Wessely [5]. For whatever fibromyalgia is, it is many symptoms in many different areas.

Clauw hated the term PSD. He told me that distress meant mental symptoms, and that fibromyalgia was a pain disorder not a psychosocial disorder (back to the central pain hypothesis)—a narrow view, I thought, and I had a different view of fibromyalgia. So, when we write, Clauw uses “fibromyalgianess” or fibromyalgia symptom scale. I use the term, PSD, and I can’t think of a better term. Even those who don’t believe in fibromyalgia can use and understand PSD. Still, I have some affection for my wayward child, fibromyalgianess.

References

  1. Wolfe F, Clauw D, Fitzcharles MA, Goldenberg D, Katz RS, Mease P, et al. The American College of Rheumatology Preliminary Diagnostic Criteria for Fibromyalgia and Measurement of Symptom Severity. Arthritis Care Res. 2010;62(5):600-10.
  2. Wolfe F, Michaud K. Outcome and predictor relationships in fibromyalgia and rheumatoid arthritis: evidence concerning the continuum versus discrete disorder hypothesis. J Rheumatol. 2009;36(4):831-6.
  3. Wolfe F, Clauw D, Fitzcharles MA, Goldenberg D, Häuser W, Katz RS, et al. Fibromyalgia Criteria and Severity Scales for Clinical and Epidemiological Studies: A Modification of the ACR Preliminary Diagnostic Criteria for Fibromyalgia. J Rheumatol. 2011;38:1113-22.
  4. Wolfe F. Fibromyalgianess. Arthritis Rheum. 2009;61(6):715-6. Epub 2009/05/30. doi: 10.1002/art.24553. PubMed PMID: 19479689.
  5. Wessely S, Hotopf M. Is fibromyalgia a distinct clinical entity? Historical and epidemiological evidence. Baillieres BestPractResClinRheumatol. 1999;13(3):427-36. PubMed PMID: 39980.
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7 Comments

  1. Thank you for your work.

    Distress seems like a more appropriate term for what people classified with fibromyalgia (I like the term chronic widespread pain [CWP]) are going through.

    Clinically, there seems to be a few groups with similar onset: post-surgical, genetic, and post-abuse.

    Post-surgical patients that have an onset of CWP don’t generally exhibit too much psychological distress beyond the general frustration of having the problem. If the problem persists, certainly depressive events can start to take a more prominent role.

    Genetic patients tend to report this pain starting very young and depending on their upbringing tend to cope rather well with the symptoms. They seem to get the idea that the CWP is probably a heightened system reaction.

    Post-abuse patients tend to cope poorly and are often down the PTSD path as well. These patients exhibit more psychological distress than others I have worked with and usually need more time to help them understand the possibilities of what is going on and how they can better their lives.

    These are obviously over-simplified clinical distinctions, but a trend I have noticed when working with patients as a physical therapist. I have the luxury of having more time with patients generally and I can ask them lots of questions about what they think is going on and discuss many aspects of their life while they exercise.

    I am biased towards this site’s group’s hypothesis of the systemic distress and often cite Dr. Quinter’s and Dr. Wolfe’s work to my patients.

  2. Fred, thanks for setting the record straight.

    Mention of your wayward child – “fibromyalgianess” – reminds me that I once asked some of my rheumatology colleagues who were wedded to the fibromyalgia construct whether they were prepared to recognise sub-categories of the condition, such as “fibromyalgia minima”, “fibromyalgia minor” and “fibromyalgia major”. None could answer this question.

    In 1999 we suggested that “the concept of fibromyalgia had fallen into disrepute because it failed to overcome the essentialist fallacy that was the downfall of its predecessors, muscular rheumatism, neurasthenia, and fibrositis.

    Would it be fair to say that both you and Dan Clauw were then accepting fibromyalgia as an essentialist truth rather than as a nominalist hypothesis? If so, are you still seeking an “essence” of fibromyalgia?

    Reference: Quintner JL, Cohen ML. Fibromyalgia falls foul of a fallacy. Lancet 1999; 353: 1092-94.

  3. Fred, when I joined with Milton Cohen to write our 1999 paper, I was very much influenced by the writings of Samuel Jones Gee [1839-1911]. Until I read them with interest, I was hopelessly confused about fibromyalgia.

    In our paper, we attempted to redress what we saw as a fundamental epistemological error (“that of essentialism”) which had been made by those who formulated the construct of fibromyalgia.

    This is some of what Gee wrote when he addressed the Empiric sect in his book chapter dealing with Sects in Medicine:

    “The method of empiricism begins by compiling a history of diseases, the result of the most assiduous, minute, and complete observation and examination possible of sick people. These particular facts are classified so as to constitute more universal types of disease, which serve as a standard of reference. Bearing these types in mind, the empiric proceeds to examine a patient, no less minutely and completely; this is the autopsy. And this done, the patient’s disorder is referred to that generic type of disease which it more or less closely resembles; this is the analogy or diagnosis: a most complete affair for the empiric, inasmuch as his line of treatment depends thereon … You will have discerned the faults of empiricism. In the first place, it is ‘arena sine calce,’ or, as we may say, bricks without mortar. It consists of individual truths with nothing to make them adhere, no hypothesis to hold them together … Another great fault of the empiric is this, that in his eager search for knowledge which he sees to be immediately useful, he overlooks much, the usefulness of which does not at once appear… Well for him that all physicians are not empirics.”

    What we had overlooked was that the symptom cluster called “fibromyalgia” was similar to that seen in sick animals. This insight led us to eventually work with Dr Pamela Lyon, who was the lead author in our evolutionary stress response hypothesis.

    Reference: Gee SJ. Medical Lectures and Aphorisms (3rd ed). London: Oxford University Press, 1908: 214-242.

  4. I’m sorry for having been delayed in replying to John’s comments. I’m working on a little article that touches some of the issues. Yes, we all started as essentialists, but I ended up as a nominalist–”We Poets in our youth begin in gladness; But thereof come in the end despondency and madness.”

    I think there is some element of essentialism in my views. I have an idea in my mind what fibromyalgia is, but every time I try to define it the definition is does’t seem to hold up. Fibromyalgia criteria are nice. We built them after what we thought were de facto definitions in the community and expert views. They provide a reasonable, uniform definition. Their use would help the rare real research into fibromyalgia and the huge mass of bad research that grows by the day. People should use the criteria, but they don’t. The actual de facto definition is influenced by social needs (the need for diagnosis, respect, disability recognition, convenience, income), psychological needs, and some wavering medical similarity issues that overlap among “the medically unexplained diseases.” Shorter thinks that imitation is an important force (Monkey see. Monkey do). I continue to be mesmerized by the model of mass sociogenic illnesses (mass psychogenic illnesses) in which there is no mental illness, yet the mind-body is driven to phenotypic displays by psychogenic forces. I don’t see “evolutionary stress response” there. I suppose one might reasonably say, “Yes, there is that–“that” being psychogenicity. Still, most of fibromyalgia does fit the evolutionary (or non-evolutionary) stress response. At least, I think so.

  5. Fred, I am intrigued by your reference to the model of “mass sociogenic illness” in the context of chronic pain. The epidemiologists tell us that up to 20% of the Australian population surveyed report chronic pain [Blythe et al. . In the UK, the prevalence is 43% [Fayaz et al. 2015].

    You appear to be arguing that such high rates of prevalence can be explained by “psychogenic forces” that can drive a change in the human phenotype (presumably to a phenotype associated with chronic pain and other clinical phenomena as described in fibromyalgia).

    I like your hypothetical explanation and offer some quotes from a book chapter authored by Dr Pamela Lyon that contain ideas that are worth exploring.

    She argues that “the stress response is an integrated pattern of physiological and behavioural response that facilitates an organism’s adaptation to homeostatic challenge. A stress response can be viewed as an organism’s pattern of reaction to a perception that something, either within itself or its surrounding milieu is NOT OK. The stimulus may be life-threatening or merely perturbing; it may be a lack of or the presence of something, but it is sensed as challenging the organism’s set point for adequate functioning in such a way that organisational integrity may be threatened, and something must be done, now.”

    Dr Lyon emphasises that there is evidence that cognitive appraisal of existential challenge alone is sufficient to trigger a stress response.

    As she points out. “[T]he trouble is, the world is full of a staggering variety of phenomena, including other beings of diverse kinds, and all sorts of things can happen. Many (probably most) of these things are unpredictable. Some (rather a lot) are perilous if keeping the show on the road is the goal. The requisite matter and energy aren’t always available when needed … and it is easy to suggest that as many conditions threaten life as sustain it.”

    Her argument, which I have only briefly outlined, is in my opinion quite a powerful one.

    References:

    Blyth FM, March LM, Brnabic AJ, et al.. Chronic pain in Australia: a prevalence study. Pain 2001; 89: 127-134.

    Fayaz A, Croft P, Langford RM, et al. Prevalence of chronic pain in the UK: a systematic review and meta-analysis of population studies. BMJ Open 2016; 6: e010364.

  6. Here is the reference to the book chapter I mentioned above: Lyon P. Stress in mind: a stress response hypothesis of cognitive evolution. In: Caporal LR, Griesemer JR, Wimsatt WC, eds. Developing Scaffolds in Evolution, Culture and Cognition. Cambridge MA: MIT Press, 2014: 171-190.

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