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Fibromyalgia : medical and social implications of a diagnosis Pr. P Cathébras Internal medicine University Hospital, Saint-Etienne, France What is fibromyalgia ? • A rare, new, and disabling disease of unknown origin (to be discovered) ? • A differential diagnosis for RA, lupus, osteoarthritis, myopathies, and so on ? • The rheumatologist’s « functional somatic syndrome » (as irritable bowel syndrome is for the gastroenterologist) ? • A « mental » illness (a somatoform and/or affective and/or anxiety and/or personality disorder) ? • A fashioned diagnostic label for common misery (diffuse pain and fatigue) ? • An opportunity for drug or alternative medicine marketing ? Correlates • Is fibromyalgia a useful diagnosis ? – For patients/sufferers ? – For doctors ? – For society ? • Suggesting/accepting/making a diagnosis of fibromyalgia (FM) has several medical, psychosocial and even moral implications What is a diagnosis when it comes to functional illness ? Fibromyalgia (ACR criteria, Arthritis Rheum 1990;33:160-72) • A : Widespread pain – lasting for 3 or more months – both sides of body – above and below the waist – and along the midline • B : Report of pain at a minimum of 11/18 specified locations or tender points Problems with ACR criteria • Required duration of symptoms • A number of important non pain symptoms are not taken into account (fatigue, unrefreshing sleep, IBS, psychological distress, etc…) • Primary or secondary fibromyalgia : « Il n’y a pas de critères d’exclusion, donc de diagnostic différentiel » (Kahn MF. Rev Prat 2003;53:1865-72) • Questionable relevance of tender points : « Tender points, as the essential criterion, was a mistake » (Wolfe F. J Rheumatol 2003;30:1671-2) Fibromyalgia as a functional somatic syndrome « Physical syndromes without an organic disease explanation, demonstrable stuctural changes, or established biochemical abnormalities » P Manu (ed). Functional somatic syndromes, Cambridge University Press, 1998. Why FM should be considered a functional somatic syndrome • It has no established, satisfying or specific biological explanation • Long-term follow up of FM patients does not allow to discover organic diseases accounting a posteriori for the symptoms Wolfe F et al. Arthritis Rheum 1997;40:1560-70 & 7179. • FM is frequently comorbid with other functional somatic syndromes The concept of « somatization » is central to the understanding of functional somatic syndromes « a tendency to experience and communicate somatic distress and symptoms unaccounted for by pathological findings, to attribute them to physical illness, and to seek medical help for them » Lipowski ZJ. Am J Psychiatry 1988;145:1358-68 Some misunderstanding about « somatization » and functional somatic symptoms • So-called « functional » symptoms will disappear with the progress of medical science : indeed, they are more and more common (Barsky AJ. The paradox of health. N Engl J Med 1988;318:414-8) • The concept of « somatization » implies the psychological origin of the symptoms : it is much more complex (Mayou R. Somatization. Psychother Psychosom 1993;59:69-83) • The concept of « somatization » excludes biological contribution to the symptoms : they are some plausible pathophysiological mechanisms (Sharpe M, Bass C. Int Rev Psychiatry 1992;4:81-97) Key points in the social construction of fibromyalgia • ACR diagnostic criteria give an illusion of coherence within the chaos of functional symptoms, and brings « reality » to the « disease » in : – focusing on pain and ignoring many other symptoms – transforming an epidemiological continuum of diffuse and lasting pain (dimension) into an artificial category – alleging objectivity (tender points) while distracting from the central symptoms of distress Key points in the social construction of fibromyalgia • Why pain ? – because we live in a medicalized world dominated by analgesia in which pain has no other meaning than a medical one « La douleur arrive à être vue d’abord comme la condition des hommes que la corporation médicale n’a pas fait profiter de sa boite à outil. L’idée que l’art de souffrir est une réponse alternative et complémentaire à la consommation analgésique acquiert un ton littéralement obscène » Illich I. Némésis médicale (1975) Key points in the social construction of fibromyalgia • Why pain ? – because modern society creates great expectations about pain relief Key points in the social construction of fibromyalgia • Debates around fibromyalgia deal with the pervasive stigmatization of mental illness and social suffering : the denial of psychosocial factors appears as the best solution to make fibromyalgia a « real » disease. – the question of the legitimacy of symptoms without organic explanation • Social construction of prognosis : is fibromyalgia a disabling disorder ? – the question of the social recognition of disablement Struggle for legitimacy, claim for disability QuickTime™ et un décompresseur TIFF (non compressé) sont req uis pour visionner cette i mag e. Key points in the social construction of fibromyalgia • Becoming a fibromyalgic transforms one’s identity : Hadler NM & Greenhalgh S. Labeling woefulness : the social construction of fibromyalgia. Spine 2004;30:1-4. « No one has FM until it is diagnosed » Ehrlich GE. Pain is real; fibromyalgia isn’t. J Rheumatol 2003;30:1666-7. « How the person suffering persistent widespread pain learns to be a patient with FM » Hadler NM. « Fibromyalgia » and the medicalization of misery. J Rheumatol 2003;30:1666-7. Should we make a diagnosis of fibromyalgia ? NO ! • Risk of overlooking significant comorbidity (somatic as well as psychiatric) when the patient has been « labeled » with FM • Risk of inducing problematic relationship with « skeptical » health care providers • Risk of reinforcing illness behavior in order to legitimate sick role Hadler NM. If you have to prove you’re ill, you can’t get well. The object lesson of « fibromyalgia ». Spine 1996; 21:2396-400. Should we make a diagnosis of fibromyalgia ? NO ! • The label may be a self-fulfilling prophecy of chronicity and disability « …support and advocacy group aggravate the problem, disability is certified, a hopeless prognosis is offered… » Ehrlich GE. Pain is real; fibromyalgia isn’t. J Rheumatol 2003:30:1666-7. « the fibromyalgic is transformed into a long-term patient whose life is dominated by, and limited by, disease » Hadler NM & Greenhalgh S. Labeling woefulness : the social construction of fibromyalgia. Spine 2004;30:1-4. Should we make a diagnosis of fibromyalgia ? YES ! • A diagnosis of FM is reassuring when severe and disabling diseases such as RA or MS are feared • Health care utilization and costs may be reduced after diagnosis Annemans L et al. Arthritis Rheum 2008;58:895-902. • The label promotes illness behavior only if it is used to get rid of « difficult » patients, instead of giving unbiased information Goldenberg DL. Arch Intern Med 1999;159:777-85. Should we make a diagnosis of fibromyalgia ? YES ! • Prognosis may proved good if the quality of doctor-patient relationship is preserved and if proper management is offered Goldenberg DL. Fibromyalgia : To diagnose or not. Is that still the question ? J Rheumatol 2004;31:633-5.