Download Fibromyalgia and the Social Construction of Disease

Fibromyalgia and the Social
Construction of Disease
Salahuddin Kazi, MD
• In 1990 the American College of
Rheumatology published criteria for the
classification of fibromyalgia
• Fibromyalgia was defined as a syndrome
of widespread pain associated with
characteristic tender points
Pain
Fatigue
Sleep
Disorder
Fibromyalgia
Chronic Fatigue
Syndrome
Irritable Bowel
Syndrome
Migraine
Headaches
Interstitial
Cystitis
Fibromyalgia is a controversial
disorder
Valid Disease Construct
OR
Universal Stress + Doctor + Social Sanction
“Fibromyalgia”
Doctors are ambivalent about
fibromyalgia
• Diagnosed by self-report
• Objective findings limited to tender points
• No characteristic laboratory or imaging
abnormalities
• Overlap with other syndromes
• No specific treatment
The argument
• If fibromyalgia is a true disease, there
ought to be observable pathologic lesions
• But what do we mean by “disease”?
Fibromyalgia – key features
• Fibromyalgia is characterized by
widespread chronic muscle pain
• The pain worsens with activity
• Patients cannot distinguish well between
myalgia and arthralgia
– often describe joints as being swollen
– burning, numbness, tingling and heaviness of
the limbs are common complaints
Fibromyalgia – key features
• Fatigue is very frequent (90%) and may be
the presenting complaint
• Sleep disorders are universally reported
• Mood disturbance, cognitive impairment,
headache, Raynaud’s phenomenon and
pre-syncope are also very prevalent
• Some patients meet formal criteria for
depression
Fibromyalgia – key features
• Many individuals meet criteria for other
unexplained clinical syndromes
– irritable bowel syndrome, chronic fatigue
syndrome, migraine headaches and interstitial
cystitis
• Physical examination is largely normal
except for the finding of characteristic
tenderness at defined points
• Laboratory studies are within normal limits
Fibromyalgia - epidemiology
• Fibromyalgia is more common in women
• Prevalence increases linearly with age
– 2% at age 20 and 8% at age 70
• Peak presentation is in the fourth and sixth
decades of life
• In 50%, onset is attributed to trauma or a
flu-like illness
Chronic fatigue syndrome
Sore
Throat
Muscle
Pain
Multi-Joint
Pain
Fatigue
Headaches
Tender
Lymph
Nodes
Post
Exertional
Malaise
Unrefreshing
Sleep
Unexplained clinical syndromes
• Fibromyalgia
• Chronic fatigue
syndrome
• Irritable bowel
syndrome
• Multiple chemical
sensitivity
• Migraine headaches
• Interstitial cystitis
• Chronic nonbacterial
prostatitis
• Chronic pelvic pain
• Chronic low back pain
• Post-concussion
syndrome
• Interstitial cystitis
• Temporomandibular
disorder
Tender
Points
Sleep
Disturbance
Pain
The history of fibromyalgia and chronic
fatigue syndrome
• 1869
• 1904
• 1930’s
• 1938
• 1976
• 1980’s
• 1990’s
Neurasthenia
Fibrositis
Epidemic neuromyasthenia
Benign myalgic encephalomyelitis
Post viral syndrome
Referred muscle pain
Fibromyalgia
Chronic EBV infection
Chronic fatigue syndrome
Fibromyalgia – ACR definition
Myofascial pain syndrome
Pathophysiology of fibromyalgia:
evolving views
•
•
•
•
Disease of muscle
Psychiatric disorder
Disease of pain perception
Neuroendocrine disease
Pathophysiology of fibromyalgia:
evolving views
•
•
•
•
Disease of muscle
Psychiatric disorder
Disease of pain perception
Neuroendocrine disease
Is there muscle pathology in
fibromyalgia?
• Stockman,1904 - biopsy studies of
palpable tender nodules in patients with
fibrositis “inflammatory hyperplasia”
• Two subsequent studies could not confirm
these findings
Is there muscle pathology in
fibromyalgia?
• Collins,1940 - review of original specimens
found no evidence of inflammation
• Contemporary muscle biopsy studies have
revealed either normal findings or
nonspecific ultrastructural changes
• Studies of muscle metabolism and MR
spectroscopy have also failed to
demonstrate abnormalities in muscle
metabolism
Pathophysiology of fibromyalgia:
evolving views
•
•
•
•
Disease of muscle
Psychiatric disorder
Disease of pain perception
Neuroendocrine disease
Is fibromyalgia a psychiatric disorder?
• Prior to the 1980’s the concept of
“psychogenic rheumatism” was prevalent:
– dramatic urgency to be seen by the doctor
– written list of complaints
– large volume of previous investigations
brought to the first clinic visit
Fibromyalgia and the MMPI
• Payne, 1982 - higher MMPI scores in
fibromyalgia patients when compared with
patients with arthritis
• Fibromyalgia patients scored higher on the
hypochondriacal and hysteria scales but
not on the depression scale
Fibromyalgia and the MMPI
• Smythe suggested that the MMPI will rate
any patient with chronic pain high on the
hysteria and hypochondriasis scales
• Pincus reported that elevated MMPI
scores for hypochondriasis, depression
and hysteria correlated with disease
activity in patients with rheumatoid arthritis
Fibromyalgia - history of depression
• Clarke - fibromyalgia patients from general
practice
– No increase in rates of psychologic
disturbance
• 50%-70% of patients with fibromyalgia
report a personal history of depression
• Current major depression is found in not
more than 36% of patients
Fibromyalgia and depression:
prospective data
• A prospective study of 175 women with
self-reported pain
– designed to examine etiologic factors in the
onset of fibromyalgia
• Depression developed in 25% of this
cohort after a period of 5.5 years
• Self-reported depression was the single
strongest predictor (six-fold) of new-onset
fibromyalgia
Fibromyalgia and depression:
prevailing views
• Depression and fibromyalgia are associated, but
the nature of the association and the temporal
relationship are unclear
• Fibromyalgia and major depression may share a
common etiologic abnormality
• The greater frequency of depression in
fibromyalgia patients in referral-based practices
versus fibromyalgia patients in the community
reflects differences in health-seeking behaviors
Community
Fibromyalgia
+
Depression
Fibromyalgia
Clinic
Health Seeking
Fibromyalgia
+
Depression
Is fibromyalgia a somatization
disorder?
Patients have multiple somatic complaints that
suggest organic disease:
•
•
•
•
•
Severe fatigue
Abdominal pain
Diarrhea
Headaches
Dizziness
• Jaw pain
• Paraesthesia
• Raynaud’s
phenomenon
• Dysuria
Fibromyalgia and somatization
• Most patients with fibromyalgia would not
satisfy diagnostic criteria for somatization
disorder
• Do these patients may have a
subsyndromal somatization state?
Critics point to the circular nature of the
definition of somatization disorder:
“a psychiatric diagnosis that depends on the
presence of
physical symptoms that suggest organic
disease and are not explained by a
general medical condition
would become a nonpsychiatric diagnosis
once the general medical condition
adequately explains the symptoms”
Pathophysiology of fibromyalgia:
evolving views
•
•
•
•
Disease of muscle
Psychiatric disorder
Disease of pain perception
Neuroendocrine disease
Fibromyalgia as a chronic pain
disorder: epidemiology
2000 Healthy Adults
11.2% reported Chronic Pain
21.5% had
>10 Tender Points
63.8% had 1-10
Tender Points
Criteria for
Fibromyalgia
the number of tender points correlated best with
depression, fatigue and poor sleep
Fibromyalgia as a chronic pain
disorder: epidemiology
• Wolfe – rural Kansas
– widespread pain was more common in
women
– increased in prevalence with age
– peak 23% by the seventh decade
The pain-fibromyalgia spectrum
Chronic Pain
Fatigue
Depression
Sleep
Disorder
Fibromyalgia
Fibromyalgia: abnormal central
sensory processing
• Non-nociceptive pain (NNP)
– pain elicited by stimulation of fibers that
usually relay non-painful signals to the spinal
cord
– non-noxious stimuli are subverted by
abnormal central processing resulting in the
experience of pain
Chronic pain in fibromyalgia
• Several studies of chronic pain in fibromyalgia
patients compared with controls show:
– dolorimetry reveals a lower pain threshold
– elevated substance P levels in the CSF
– with isometric muscle contraction, the pain threshold
decreases rather than showing the expected increase
seen in controls
– somatosensory-induced potentials demonstrate
increased amplitude following laser stimulation of skin
– distinctive regional cerebral blood flow abnormalities
Pathophysiology of fibromyalgia:
evolving views
•
•
•
•
Disease of muscle
Psychiatric disorder
Disease of pain perception
Neuroendocrine disease
The hypothalamic-pituitary-adrenal (HPA) axis
• Primary endocrine
stress axis
• Adaptational
response to stressors
• Patients with
fibromyalgia have
abnormal stress
activation
Neuroendocrine abnormalities in
fibromyalgia
• Elevated cortisol levels with a flattened diurnal
pattern that are not suppressed by
dexamethasone administration
• Low 24 hour urinary free cortisol suggesting
elevated cortisol secretion during the day and
suppressed secretion at night
• Markedly enhanced ACTH release when CRH is
injected, but with no increase in cortisol levels
(suggesting adrenal hyporesponsiveness)
Significance of HPA abnormalities
• Chronic CRH hyperactivity is driven by
stress and pain
• CRH is a pleiotropic hormone
– changes in the set points of other hormonal
axes like growth hormone, gonadotropin and
thyroid stimulating hormone may also be of
significance
Significance of HPA abnormalities
• Whether somatic symptoms in
fibromyalgia are caused by these
abnormalities is unclear
• Is the link between somatic complaints
and central nervous system changes
bidirectional?
Stressful life event
HPA Axis
Genetic
vulnerability
Abnormal central sensory processing
Chronic pain
Somatosensory
amplification
Psychosocial distress
Secondary somatic symptoms
Acute Pain
Summary of the current concept of
fibromyalgia
• Theories of the pathophysiology of fibromyalgia
have moved from a disorder of soft tissues to
one of chronic pain
• Diagnosis is largely based on patient self-report
but an increasing body of literature points to
measurable phenomena in the central nervous
system and HPA axis
• Psychologic disturbances are common in
patients with fibromyalgia but the temporal
association with disease onset is still unclear
Patient
Doctor
Disease
Society
Foucault’s “spaces”
• Primary spatialization:
disease is described and
ordered as a concept
• Secondary spatialization:
disease is given a place
within the body
• Tertiary spatialization: the
disease and the diseased
individual are located
within the societal body
Concept
Body
Society
The birth of biomedicine
• Turn of the 18th century
• French revolution
– Restructuring of French society
– Parallel restructuring of the medical paradigm
The birth of biomedicine
• Medicine changed from a study of
symptoms to the precise mapping of signs
and symptoms to observable pathologic
lesions
• Doctors began to care for indigent patients
in a hospital setting
• The doctor became dominant in the
doctor-patient relationship
The biomedical model of disease
• Disease is caused by an observable
pathologic lesion in the body
• The presence of a pathologic lesion is
revealed in two ways:
– symptoms, the patient’s perception that body
function is not normal
– signs, the physician’s observation that
signifies that an underlying lesion exists
Assessing symptoms
• Patients subject their symptoms to some
form of evaluation prior to seeking medical
advice
• Community surveys suggest that the ratio
of symptom episodes to consultation is
much higher than one would expect
Symptom : consultation ratio
Headache
184:1
Backache
52:1
Emotional problem
46:1
Abdominal pain
28:1
Sore throat
18:1
Pain in chest
14:1
The active decision to seek medical advice
for symptoms is known as illness behavior
– Trivial symptoms
– Trivialize symptoms
Decision to see the doctor
• Perceived interference with vocational or
social activity
• Perceived interference with social or
personal relations
• The occurrence of an interpersonal crisis
• Failure of symptoms to resolve by the end
of a self-determined arbitrary period
• Coercion from friends or relatives
(sanctioning)
Not all persons with fibromyalgia are
“patients”
• Community surveys:
– fibromyalgia non-patients > fibromyalgia patients
• A history of depression > current depression
– history of depression is a marker for persons more
likely to seek health care
• The “onset” of fibromyalgia following an
interpersonal crisis
– a stressful life event, and not the disease itself,
precipitates a consultation
Parson’s “sick role”
• Strong position of social authority of the
doctor to legitimize illness
• Allows the patient to ease from a “well
person” to a “patient”
Benefits of the “sick role”
• The patient is temporarily excused from
performing his or her normal social role
• The patient is not held responsible for his
or her illness
Sick role: patient’s obligations
• The patient must want to get well (the sick
role is of temporary status)
• The patient must cooperate with the
treatment plan
Parson’s model fails in chronic
illnesses
• Inability of the patient to fulfill the two
obligations
• The sick role is not temporary
• Lack of cure makes cooperating with
treatment difficult to sustain
Parson’s model also fails when:
• Patients have multiple complaints without
a readily identifiable lesion
• The patient does not accept a shared
belief in the biomedical model of disease
The doctor as an agent of social
control
• Doctors utilize the biomedical rule of
medicine to judge patients as ill or well
– Conferring/withholding “sick role” status
• This judgment occurs independently of the
patient’s own beliefs
The doctor as an agent of social
control
• Patients may be judged ill even though
they may view themselves as well
– screening asymptomatic patients
• judged to be well, even when they see
themselves as ill
– no biological explanation for the patient’s
symptoms
Good patients, bad patients and great
patients
Lober-1975: study of inpatients in a general hospital
• good patients
– trusting, cooperative, non-complaining, non-demanding
• great patients
– seriously ill patients who were cheerful, cooperative,
uncomplaining, and objective about their illness
• difficult or problem patients
– not seriously ill but were demanding, emotional, and
uncooperative
– frequently discharged early, given sedatives, or referred to
psychiatry
“Difficult patients” in primary care
Hahn-1996:
• 15% of patients were viewed by doctors as
difficult patients
• More likely to have:
– psychiatric disorder
– functional impairment
– greater health-care utilization
– higher dissatisfaction with their care
So, what’s “difficult”?
• “Difficult” because patients have presented with
“problems of living” rather than defined diseases
• The question of secondary gain
– the hope of attaining the benefits of the sick role
• The doctor is reticent to exercise his or her
unique social authority to grant these benefits
• The doctor views such patients as “difficult”
because they do not fulfill the construct of the
biomedical model
Patients with fibromyalgia are
“difficult”
• A chronic illness without a readily
identifiable lesion
• Multiple somatic complaints
• Higher incidence of psychiatric disorders
• Greater health care utilization
• Dissatisfaction with their care
• Advice of the doctor is often not followed
The patient with fibromyalgia may present
with a comprehensive belief system that
rivals the biomedical scientific belief
system of the doctor
While on the surface the doctor-patient
relationship is seemingly about common
interests and goals
cause
diagnosis
diagnosis
cause
therapy
therapy
Medical epidemiology
Lay epidemiology
Disease and labeling theory
• A doctor’s decision to interpret an individual’s
particular biologic state as being abnormal
(diseased or ill) constitutes a label (diagnosis)
• In social theory, labeling has a negative
connotation
• Individuals deemed abnormal are labeled
“abnormal”
• If this abnormality is also socially abnormal, it
can cause deviance
Deviance
• Primary deviance
– defining a biologic state as abnormal
• Secondary deviance
– change in patient behavior as a consequence
of labeling (diagnosis)
• Strong social pressures to conform to the
label reinforce secondary deviance
– “self-fulfilling prophecy”
Fibromyalgia the label
• Patients with widespread pain and multiple
tender points
– labeled as suffering from fibromyalgia
• Social meaning and significance of the
applied label (secondary deviance)
– change in behavior
– pressure to conform to the diagnosis
Is fibromyalgia a deviant label?
Critics of fibromyalgia, the label:
– The doctor is creating secondary deviance
– The labeled patient falls into a self-fulfilling
prophecy trap
– The label (not the underlying biologic state)
perpetuates the illness behavior
– By declaring “normal aches and pains” a
disease, doctors are promoting the sick role
and creating unnecessary somatization
Patients may also reject
fibromyalgia
• Avoidance of stigmatization
• Adoption of a more “acceptable” disease
– “Systemic lupus erythematosus”
• Fibromyalgia + positive ANA
– “Lyme disease”
• Fibromyalgia + positive Lyme titre
Fibromyalgia: a useful construct?
• Patients are comforted when they can give
their symptoms a name
• The conferring of the sick role relieves
them of personal responsibility for the
cause of their symptoms
• These set of symptoms can be studied in
a uniform manner
Is fibromyalgia a disease, a syndrome or an
assortment of unexplained symptoms?
What is disease?
• The traditional view:
– disease is a biological problem
– excludes conditions without known biological
mechanisms
– assumes that the line between physiology
(normal) and pathology (abnormal) is welldemarcated
Are psychiatric conditions diseases?
• No clearly defined biological mechanisms
• Manifestations are principally in altered
behavior
– Cause or consequence of labeling?
• Szasz has argued that psychiatrists do not
identify real disease, they simply label
inappropriate behavior and call it disease
Is disease dis-ease?
• Dis-ease: lack of feeling well constitutes
disease
• Unacceptable to doctors because
– Definition of disease is firmly in the grasp of
the patient
– Synonymous with the lay concept of illness
– Objectivity succumbs to subjectivity
– Presymptomatic disease states cease to exist
Disease as social variance
Disease
Abnormal
Social
Disadvantage
Normal
Abnormal
Variation from normal is only a disease if it
creates social disadvantage
Disease and social norms
• Osteoarthritis may be viewed as a normal
consequence of aging
• Dyslexia would not be a disease in a preliterate society
• Is obesity a disease?
• How is insanity defined?
Fibromyalgia can be viewed as a disease based
on the social construct (because it causes social
disadvantage)
BUT
Fibromyalgia is typically considered a nondisease because it resists biologic reductionism
and is often viewed as a collection of
unexplained symptoms
The usual fate of unexplained symptoms
Unexplained symptoms
Referral to psychiatry
Somatosensory
Amplification
loop
Doctor shop
Patient wants to avoid
the stigma of a psychiatric label
Adopt a disease with a
more socially acceptable
label
Dissatisfaction with care
Secondary deviance
Join an advocacy group
lobby for reform
Explaining unexplained symptoms
• One third of all symptoms in primary care
settings are unexplained
• Unexplained symptoms were originally
considered functional disturbances of the
brain
– reversible
Explaining unexplained symptoms
• Unexplained symptoms became the
province of psychiatry
– hardwired
• Somatization was proposed as the
mechanism by which mental disorders
became physical symptoms
• Sharpe has suggested that we resurrect
the original meaning of the term
“functional”
• It is difficult to accommodate fibromyalgia
in the biomedical disease construct since it
is a subjective diagnosis
• Biomedical science thrives on objectivity
• But is biomedicine itself influenced by
social forces?
Is the biomedical model impervious
to social forces?
• Paradigms vs. independent scientific
inquiry (Kuhn vs. Popper)
• “Reality” and the “knowledge” that explains
it - is socially determined
Paradigms vs. independent thought
• Scientific inquiry is based
on prevalent paradigms
• Prevailing paradigms are
subject to social influence
• Unexplained phenomena
are “puzzles” not
independent “problems”
• New paradigms are
adopted when the
unexplained is explained
• A new cycle starts
Paradigm
Puzzle
Solution
Kuhn
• Scientific growth is series
of temporarily valid
solutions that provide
successively better
explanations
• The scientist is one of
many working to validate
an established paradigm
• Truth is relative and it
subject to newer, better
paradigms when
appropriate
vs.
Popper
• Scientific growth is a
journey towards an
infinite absolute truth
• The scientist functions in
an atomistic,
individualistic fashion
• Truth is absolute
Neurasthenia and chronic fatigue:
a biosocial model
Neurasthenia
Chronic Fatigue
Syndrome
Era
19th Century
20th Century
Prevailing scientific
paradigms
•Electricity
•Thermodynamics
•Evolution
•Infection
•Immunity
•Environmental toxins
Mechanism
•Consumption of finite
nervous energy
•Survival of the fittest
•Chronic infection
•Immunosuppression
•Chemical sensitivity
Social cause
•Demands and
stresses of modern
times
•Demands and
stresses of modern
times
Conclusions
• Fibromyalgia is a complex biosocial
construct shaped by the interaction
between biology and sociology
• It can only be resolved by creating an
alliance between classical biomedical
thought and the forces that influence the
expression of illness in society
Conclusions
Fibromyalgia
Search for Pathology
HPA axis
Social Factors
Neurobiology of pain
Biosocial Model
of Disease