Transcript Fibromyalgia : medical and social implications of a diagnosis

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
Qu ickTime™ et un
décompresseur TIFF (non compressé)
sont requis pour vis ionner cette ima ge.
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.