Suffering and Dysfunction in Fibromyalgia Syndrome

J of Musculoskeletal Pain, Vol. 10, No. 1/2, 2002, pp. 85-96

Dennis C. Turk, PhD

Dr. Turk is the John & Emma Bonica Professor of Anesthesiology
& Pain Research, University of Washington, Seattle, Washington.

Preparation of this manuscript was supported in part by grants from the
National Institute of Arthritis and Musculoskeletal and Skin Diseases
[AR/AI44724, AR47298] and the National Institute of Child Health and Human
Development/National Center for Medical Rehabilitation Research [HD33989].

Address correspondence to: Dr. Dennis C. Turk, Department of
Anesthesiology, Box 356540, University of Washington, Seattle, WA 98195
[E-mail: turkdc@u.washington.edu ].


SUMMARY.
Objectives: To describe the plight of the person with fibromyalgia syndrome
[FMS], the psychosocial and behavioral factors that contribute to the
extent of suffering experienced, and the heterogeneity of patient subgroups
that characterize adaptation and response to treatment.

Findings: People diagnosed with FMS are confronted with a range of factors
the influence there perception, adaptation, and response to treatment.
Three subgroups of FMS patients have been identified using cluster analytic
procedures. One subgroup is characterized by high levels of pain, perceived
interference of symptoms with life, affective distress and social support,
and low levels of perceived control and activity - "Dysfunctional." The
unique characteristics of a second subgroup, relative to other FMS
patients, relates to their perceptions of little support from significant
others and a high degree of negative responses to their reports of symptoms
-    "Interpersonally Distressed." Compared to the other two groups, the
third group reported lower levels of pain, emotional distress, and higher
levels of perceived control over symptoms, and were more active - "Adaptive
Copers." The percentage of patients classified within each of the three
groups were roughly equivalent. The three subgroups respond differentially
to a standard interdisciplinary rehabilitation program.

Conclusions: Successful treatment of patients diagnosed with FMS will
require attention to important individual differences in patients'
perceptions, modes of responding, and responses by significant others in
addition to physical factors associated with FMS.


KEYWORDS. Disability, expectations, pain behaviors, patient heterogeneity,
treatment matching


Introduction: THE PLIGHT OF THE PERSON WITH CHRONIC PAIN

Despite advances in the understanding of anatomy and physiological
processes and innovative and technically sophisticated pharmacologi- cal,
medical, and surgical treatments; pain continues to be a perplexing puzzle
for health care providers and a source of significant distress for
individual pain sufferers. No treatments are currently available that
consistently and permanently relieve pain for all.

People with chronic pain often feel rejected by the very elements of
society who exist to serve them. They lose faith and become frustrated with
the healthcare system. At the same time that returning to work becomes less
of a possibility and medical bills for unsuccessful treatments accumulate,
chronic pain sufferers may begin to feel they are being blamed by their
physicians, employers, and even family members when their condition does
not respond to treatment. The legitimacy of reported symptoms may be
challenged and third-party payers may even suggest that the person is
fabricating symptoms in order to receive financial gain. Thus, the
emotional distress that is commonly observed in chronic pain patients may
be attributed to a variety of factors, including fear, maladaptive support
systems, inadequate coping resources, overuse of potent medications,
inability to work, financial difficulties, and prolonged litigation.
Moreover, the experience of "medical limbo" - the presence of a painful
condition that eludes diagnosis and that carry the implication of either
psychiatric causation or malingering - is itself a source of stress.

People with persistent pain become enmeshed in the medical community as
they migrate from doctor to doctor, laboratory test to laboratory test, and
imaging procedure to imaging procedure in a continuing search to have their
symptoms diagnosed and treated. For many patients the pain becomes the
central focus of their lives. As patients withdraw from society, they lose
their jobs, alienate family and friends, and become isolated. The quest for
relief often remains elusive. Thus, it should hardly be surprising that
patients experience feelings of demoralization, helplessness, frustration,
anger, and depression - suffering.

In contrast to acute pain, chronic pain confronts people not only with the
stress created by pain but also with a cascade of ongoing stressors that
compromise all aspects of their lives. Living with persistent pain
conditions requires considerable resilience and tends to deplete people's
emotional reserves, and taxes not only the individual sufferer but also the
capacity of family, friends, coworkers, and employers to provide support.

Pain is a subjective perception. There is no objective method currently
available to determine how much pain someone is experiencing. The only way
to determine how much of a subjective symptom, such as pain, that a patient
is experiencing is to ask them for a verbal report or to observe their
behavior [e.g., facial expressions, ambulation, posture]. To cite Ellen
Scarry (1): "To have great pain is to have certainty, to hear that another
person has pain is to have doubt."

In this paper, I will focus on one chronic pain syndrome, fibromyalgia
syndrome [FMS]. What has been learned about chronic pain, in general, over
the past three decades is relevant for FMS sufferers. I will emphasize the
role of subjective interpretation and environmental responses to the
experience and response to chronic pain and treatments offered. Further I
will suggest that there is a need to recognize that not all patients with
the same medical diagnosis will respond in the same way to the identical
treatments. To treat patients with FMS requires that treatment be
individualized to meet both the psychosocial and behavioral, as well as
physical characteristics of patients.

© 2002 by The Haworth Press, Inc. All rights reserved.