Tuesday, 10 Dec 2019

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The Obfuscation of Fibromyalgia

The ARA became the ACR.

GPA use to be Wegener’s.

Reactive arthritis use to be Reiter’s.

The CCR use to be Rheumatology on the Beach.

Arthritis & Rheumatology use to be Arthritis & Rheumatism.

John Cush became Jack Cush?

While I understand some and condone several of these evolutionary changes, I’m struggling to understand the nosology and classification babble on what use to be fibromyalgia (and fibrosisitis before that) or chronic fatigue syndrome (CFS).

Owing to a dissatisfaction with numerous terms such as myalgic encephalomyelitis (ME or ME/CFS), post-viral fatigue syndrome (PVS), and chronic fatigue immune dysfunction syndrome (CFIDS), a recent Institute of Medicine (IOM) report has suggested a new name - "systemic exertion intolerance disease" (SEID) - to redefine CFS and like disorders (citation source:http://url.ie/z1xg). SEID focuses on the adverse effects physical, cognitive, or emotional exertion can have on patients previously labeled with SEID, CFS, fibromyalgia, etc. While many have attempted to reclassify and rename these complex pain and fatigue disorders, none have come close to understanding the etiology of their new labels. Much of these proposed changes appear to be driven by those who struggle with the diagnosis of chronic fatigue syndrome outside of rheumatology.

Such is the case with a prevailing new term of “myalgic encephalomyelitis/chronic fatigue syndrome” (ME/CFS) (http://t.co/1tyn4ue4sP). This entity is addressed in a current Annals of Internal Medicine article that systematically studies what therapies may benefit ME/CFS, only to conclude that rintatolimod, counseling therapies, and graded exercise therapy may benefit those meeting case definitions for CFS. Some of the analyses are hampered by the inconsistency of disease definitions (citation sourcehttp://url.ie/z1xh). However, if one looks at the criteria for the diagnosis of myalgic encephalomyelitis/chronic fatigue syndrome (below) – isn’t this fibromyalgia?

Proposed diagnostic criteria for ME/CFS diagnosis require three symptoms:

  1. A substantial reduction or impairment in the ability to engage in pre-illness activity levels for more than 6 months and is accompanied by fatigue
  2. Post-exertional malaise
  3. Unrefreshing sleep*

And at least one of the two following manifestations is also required:

- Cognitive impairment* or

- Orthostatic intolerance

In 1904, Gowers introduced the term fibrositis, a form of muscular rheumatism typified by tender sore points. In over a century these patients have born several diagnostic labels, including myalgia, asthenia, somatization disorder and more recently central pain sensitivity syndrome. Now we can add to it FMS, CFS, SEID or ME/CFS.

I believe most practicing rheumatologists would admit that after 10-20 years of daily private or university practice and patient care your diagnostic acumen is better, pattern recognition is quicker and your fund of knowledge is more expansive. Hence over time we should become a better version of ourselves. I worry about this as I continue to see droves of undiagnosed fibromyalgia patients who have been previously diagnosed with lupus, seronegative RA, ankylosing spondylitis (with a normal SI, negative B27), Sjogren’s, Behcets, Ehlers-Danlos syndrome, Still’s disease, relapsing polychondritis, Lyme disease (especially in Texas?).

In 1996, Dr. Artie Kavanaugh published an article noting the similarities between FM, CFS and multiple chemical sensitivity syndrome and suggested a more unifying diagnosis – multi-organ dysesthesia (MOD). While the very common MOD may be labeled FM in rheumatology clinic, it may also show up in other specialty clinics bearing other labels such as: allergic rhinitis or multiple chemical sensitivities (Allergy), irritable bowel syndrome (GI), migraine (Neurology), atypical chest pain (Cardiology) CFS (Infectious disease), interstitial cystitis (Urology), premenstrual syndrome (GYN), or neurasthenia (if seen by a 1890’s psychiatrist).

You may want to argue that CFS and FM (and others above) are not the same disease. If you are correct, then their etiology and treatments should be quite different – unfortunately they are not.

The take home point is that FM, CFS, ME, SEID, MOD, and multiple chemical sensitivity syndrome are all part of the same spectrum of disease. If truly connected, lumping them together makes these disorders a gigantic,and often unrecognized and mistreated, public health problem. The process of changing names, defining new criteria, while misdiagnosing multitudes is best represented by image 3 blind men diagnosing the same elephant while holding onto different appendages.

Disclosures: 
The author has no conflicts of interest to disclose related to this subject
Dr. Cush is the Director of Clinical Rheumatology at the Baylor Research Institute and a Professor of Medicine and Rheumatology at Baylor University Medical Center in Dallas, TX. He a Professor of Clinical Medicine at the University of Texas Southwestern Medical School.
 
Dr. Cush is the Executive Editor of RheumNow.com and also Co-Edits the online textbook RheumaKnowledgy.com. 
 
Dr. Cush's research and interests include novel drug development, rheumatoid arthritis, spondyloarthritis, drug safety, pregnancy and Still's disease/autoinflammatory syndromes. He has published over 140 articles and 2 books in rheumatology.
He can be followed on twitter: @RheumNow.