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”  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 .
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 . 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 , 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 . 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.
- 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.
- 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.
- 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.
- Wolfe F. Fibromyalgianess. Arthritis Rheum. 2009;61(6):715-6. Epub 2009/05/30. doi: 10.1002/art.24553. PubMed PMID: 19479689.
- Wessely S, Hotopf M. Is fibromyalgia a distinct clinical entity? Historical and epidemiological evidence. Baillieres BestPractResClinRheumatol. 1999;13(3):427-36. PubMed PMID: 39980.