A Descriptive Analysis of Fibromyalgia from the Patients’ Perspective

Journal of Musculoskeletal Pain, Vol. 8(3) 2000, pp. 35-47

Alice Prince, Ph.D.; Amy L. Bernard, Ph.D., CHES; Patricia A. Edsall, AA


ABSTRACT.
Objective: To collect information directly from fibromyalgia patients on:
clinical characteristics, symptom management, other illnesses, and
exposure to factors that might be linked to fibromyalgia syndrome FFMSI.

Methods:  Survey of FMS support group members in Washington state,
Illinois, and Pennsylvania [N = 270].

Results:  One-third indicated a family history, and three-quarters
indicated either an accident or severe stress preceded the onset of
symptoms. A wide variety of symptoms were reported as well as
fluctuations in symptoms from day to day and seasonally.

Conclusions:  More descriptive information needs to be collected from
patients in order to determine the factors responsible for the onset of
FMS symptoms and to improve clinical management.

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KEYWORDS. Fibromyalgia, descriptive analysis, women’s health, patients


INTRODUCTION

Although a variety of factors have been hypothesized to be responsible for
the onset of fibromyalgia syndrome [FMS] symptoms, there is no definitive
proof to validate any of these theories (1,2). Currently, the predominant
theory is that FMS is genetic, but may require some catalyst such as
another illness, stress, or an injury to trigger its symptoms (3-6). Other
theories that have been hypothesized include neurohormonal deregulation
(7), viral infection (8), dysfunctional spectrum syndrome (9), pain
amplification disorder (10), biopsychosocial disorder (10), organ system
dysfunction (5), deficiency of stage four sleep (11), and a psychological
or psychiatric disorder (10,12,13).

The diagnosis of FMS is made based on the patient’s self-reported
symptoms and pain in tender point areas with palpitation (14-18). There
are a wide variety of symptoms a FMS patient could present with, including
widespread muscle pain and fatigue (3-5,9,12,16,17,19-22), sleep disorders
(16,17,20-23), irritable bowel syndrome (19,21,22), chronic headaches
(19,21,22), temporomandibular joint dysfunction syndrome (21), multiple
chemical sensitivity syndrome (21), pre-menstrual syndrome FPMSI (21,22),
anxiety and depression (12,13,22,24-26), stiffness (4,5,17,20,21),
cognitive or memory impairment (21,27), and restless leg syndrome (22).
Because the factors responsible for triggering FMS symptoms are unknown,
there is no cure for FMS, which limits treatment to symptom management.
Drug therapy is often used to minimize pain and relieve depression and
sleep-disturbances. However, the effectiveness of drug therapy is limited
and many of these prescription medications have unwanted side effects
(28). Dissatisfaction with drug therapy has led many patients to seek
alternative treatments for their FMS symptoms, although most report that
nothing they have tried completely alleviates their symptoms
(4,17,19,28-33).

In order for the seven to ten million Americans who are suffering from FMS
(22) to find any relief from this disease, the underlying factor[s] which
trigger the FMS symptoms must be found so that, at a minimum, more
effective treatments can be developed for this syndrome and, optimally, a
cure can be discovered. Case studies and studies involving patient
self-report can assist in reaching this goal.  Examining patient
characteristics, symptoms, and responses to treatment can lead to
information which can assist researchers in pinpointing the factors
responsible for FMS symptoms and/or better treatment options. The purpose
of this study was to collect information directly from FMS patients
regarding disease characteristics and progression, symptoms and their
management, other illnesses the patient currently suffers from or has
suffered from in the past, and exposure to factors that might be somehow
linked to their FMS. Because much of the research conducted to date on FMS
has been clinical in nature, this study sought a more patient-driven
approach by using survey research to collect the information outlined
above and to provide some opportunity for open-ended responses which would
allow the subjects to have a voice in the study results.

______________________________

Alice Prince, PhD, is Assistant Professor, Department of Kinesiology and
Health Education, Southern Illinois University at Edwardsville,
Edwardsville, IL [E-mail: mailto:aprince@siue.edu].

Amy L. Bernard, PhD, CHES, is Assistant Professor, Health Promotion and
Education Program, University of Cincinnati, Cincinnati, OH [E-mail:
mailto:amy.bernard@uc.edu].

Patricia A. Edsall, AA, 107 East Center, Troy, IL 62294.

Address correspondence to: Amy L. Bernard, PhD, CHES, Health Promotion and
Education Program, University of Cincinnati, P.O. Box 210002, Cincinnati,
OH  45221-0002.

This article was supported by a grant from The College of Education at
Southern Illinois University at Edwardsville. Submitted:  October 20,
1998. Revision accepted: May 26, 1999.

Journal of Musculoskeletal Pain, Vol. 8(3) 2000
© 2000 by The Haworth Press, Inc. All rights reserved.