DOI 10.1002/art.10917
Comment on the “fibromyalgia” label: morecons than pros
To the Editor:
The article by White et al (1) concerning the lack ofadverse outcomes by labeling patients with fibromyalgiaraises some interesting questions.
An important issue is the lack of a clear meaning of thestatement that there is an absence of an adverse effect onlong-term clinical outcome by applying the fibromyalgialabel, especially when each of the different measurementsused may be affected by this label in varying degrees or notat all. Although treatment regimens are not mentioned, itis common to see improvement in symptoms and tenderpoints in fibromyalgia patients over time (2), and espe-cially with multidisciplinary care (3). This may be relatedmore to the natural history of the disorder, the effective-ness of treatment, and/or the different clinical character-istics of subgroups within the population studied (4),rather than to the label used. However, other importantvariables may be more directly affected by the label asshown by the findings of significantly greater functionallimitations at 36 months in the 43 newly diagnosed pa-tients, and the increased trend (although not reaching sta-tistical significance) of total disability claims and pensionsin this group. To explain these findings, additional etio-logic and amplifying factors need to be studied such asillness perceptions and behavior, personal beliefs aboutthe disorder, and disability motivations, all of which maybe more directly influenced by the fibromyalgia label. Fur-thermore, the significant increase in disability claims (inaddition to symptoms and tender points) in the 28 patientsin the previously diagnosed group compared to the origi-nal 72 patients in the previously undiagnosed group, sug-gests that there may indeed be a relation of disabilityfactors to the fibromyalgia label, which could interferewith the development of self-efficacy, decrease motivationtoward self-management regimens, and retard functionalgains. The important point is how this disease label influ-ences patient perceptions related to illness or wellnessbehaviors, which in turn may determine the chances ofdisability versus self-improvement.
On a broader scale, label misapplications may be moreprevalent in certain cultural environments also affectingclinical outcomes. For instance, in regions such as therural South in which there is a cultural hesitancy to usepsychological labels and a sparsity of available mentalhealth services, in my experience it is common for thesymptoms of mental stress, including states of chronicanxiety and depression with widespread pain, to be inap-propriately diagnosed and labeled solely as fibromyalgia.This prevents effective management by avoiding the moredifficult and time-consuming evaluation and treatment ofrelevant psychosocial dislocations, results in an increasein the number of patients thought to have fibromyalgia(including those with intractable symptoms that become“medicalized,” predisposing to potential drug dependenceand narcotic abuse), and is another example where super-ficial labeling of patients with this disorder can do more
harm than good. On the other hand, there are patients whoare not interested in disability or drugs only, and maybenefit from receiving a validating, diagnostic label forpreviously unexplained symptoms, which may help moti-vate them toward successful self-management.
More studies are needed to further define the manyemotional, social, cognitive, biologic, and other variablesthat comprise the heterogenous syndrome of what is nowcalled fibromyalgia, and the importance of identifying dis-crete clinical subgroups. It would be more beneficial toconsider the “myalgic” component of this condition as justone of a spectrum of symptoms of a disorder of centralpain regulation (5) rather than as a disease label derivedfrom peripheral musculoskeletal findings (as defined bythe American College of Rheumatology criteria, [6]), whichmay result in limited clinical appraisals, misleading ste-reotypes, iatrogenic complications, and poorer outcomes.
Stephen G. Gelfand, MD, FACP, FACRCarolina Rheumatology AssociatesMyrtle Beach, South Carolina
1. White KP, Nielson WR, Harth M, Ostbye T, Speechley M. Doesthe label “fibromyalgia” alter health status, function, andhealth service utilization? Arthritis Rheum (Arthritis Care Res)2002;47:260–5.
2. Poyhia R, Da Costa D, Fitzcharles M. Pain and pain relief infibromyalgia patients followed for three years. Arthritis CareRes 2001;45:355–61.
3. Rossy LA, Buckelew SP, Dorr N, Hagglund KJ, Thayer JT,McIntosh MJ, et al. A meta-analysis of fibromyalgia treatmentinterventions. Ann Behav Med 1999;21:180–91.
4. Turk DC, Okifuji A, Sinclair JD, Starz TW. Differential re-sponses by psychosocial subgroups of fibromyalgia syndromepatients to an interdisciplinary treatment. Arthritis Care Res1998;11:397–404.
5. Rice JR, Pisetsky DS. Pain in the rheumatic diseases. RheumDis Clin North Am 1999;25:15–30.
6. Wolfe F, Smythe HA, Yunus MB, Bennett RM, Bombardier C,Goldenberg DL, et al. The American College of Rheumatology1990 criteria for the classification of fibromyalgia: report of themulticenter criteria committee. Arthritis Rheum 1990;33:160–72.
DOI 10.1002/art.10918
Reply
To the Editor:
The study that Dr. Gelfand commented on was a generalpopulation survey in London, Ontario, Canada, in whichwe identified 100 non-institutionalized adults who metthe 1990 American College of Rheumatology case defini-tion of fibromyalgia (FM). Seventy-two of these adults hadnot previously been diagnosed with FM. We followedthem prospectively over 3 years to determine the effect ofhaving been labeled with FM. Perhaps surprising to some,there was minimal, if any, adverse effect of the FM label.At three years, the 72 newly diagnosed FM cases reportedfewer symptoms and major symptoms than at baseline.There was a non-statistically significant increase in thepercent claiming total disability, from 23% to 35%, butstill two-thirds denied being disabled, despite their label.Moreover, there was no trend towards worsening amongall remaining clinical variables.
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