October 19, 2000 |
2000-R-1004 | |
FIBROMYALGIA | ||
By: John Kasprak, Senior Attorney | ||
You asked for information on fibromyalgia.
BACKGROUND
Fibromyalgia is a chronic disorder characterized by widespread musculoskeletal pain, fatigue, and multiple tender points. “Tender points” refers to tenderness that occurs in precise, localized areas, particularly in the neck, spine, shoulders, and hips. People with this disorder may also experience sleep disturbances, morning stiffness, irritable bowel syndrome, anxiety, and other symptoms. According to the American College of Rheumatology (ACR), fibromyalgia affects three to six million Americans. It primarily occurs in women of childbearing age, but children, the elderly, and men can also be affected.
Although its causes are unknown, researchers have several theories about the causes or triggers of the disorder. Some believe that it may be caused by an injury or trauma that may affect the central nervous system. Fibromyalgia may be associated with changes in muscle metabolism, such as decreased blood flow, causing fatigue and decreased strength. Others believe an infectious agent such as a virus in susceptible people may trigger the syndrome. But no such agent has been identified.
DIAGNOSIS OF FIBROMYALGIA
Fibromyalgia is difficult to diagnose because many of the symptoms mimic those of other disorders. Generally, the physician reviews the patient's medical history and makes a diagnosis based on a history of chronic widespread pain that persists for more than three months. The ACR has developed criteria for fibromyalgia that physicians can use. According to the criteria, a person is considered to have fibromyalgia if he has widespread pain in combination with tenderness in at least 11 of 18 specific tender point sites.
TREATMENT
Treatment of fibromyalgia requires a comprehensive approach, with the physician, physical therapist and patient all playing an active role in management of the disorder. Studies have shown that aerobic exercises, such as swimming and walking, improve muscle fitness and reduce muscle pain and tenderness. Heat and massage may also provide short-term relief. Antidepressant medications may help elevate mood, improve sleep quality, and relax muscles. Patients with fibromyalgia may benefit from a combination of exercise, medication, physical therapy, and relaxation.
Experts believe that medication by itself is of little value in treating the disorder. Successful treatment demands the patient's active involvement in treatment as well as lifestyle changes. A number of medications have been used to improve sleep in patients with fibromyalgia. The oldest of these is amitriptyline (Elavil), a medication first used to treat depression. It and related medications probably work by improving the quality and depth of deep sleep rather than by any effect on mood. But amitriptyline has side effects such as weight gain, daytime tiredness, and concentration difficulty.
Some patients have reported that various herbal and other alternative remedies have been helpful.
RESEARCH ACTIVITIES
The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS; part of the National Institutes of Health) is sponsoring research that is designed to increase understanding of the specific abnormalities that cause and accompany fibromyalgia, with the hope of developing better ways to diagnose, treat, and prevent the disorder. Recent NIAMS studies show that abnormally low levels of the hormone cortisol may be associated with fibromyalgia. At Brigham and Women's Hospital in Boston and at the University of Michigan Medical Center researchers are studying regulation of the adrenal gland function (which makes cortisol) in fibromyalgia. People whose bodies make inadequate amounts of cortisol experience many of the same symptoms as those with fibromyalgia.
Other NIAMS research studies are looking at different aspects of the disorder. Researchers at the University of Alabama are concentrating on how specific brain structures are involved in the painful symptoms of the disorder. At George Washington University in Washington, D.C., scientists are investigating the causes of a post-Lyme disease syndrome as a model for fibromyalgia. Some patients develop a fibromyalgia-like condition following Lyme disease, an infectious disorder associated with arthritis and other symptoms.
Other NIAMS-supported research on the disorder includes several projects at the Institute's Multipurpose Arthritis and Musculoskeletal Diseases Centers. Researchers are studying individuals who have not sought medical care, but who meet the criteria for fibromyalgia. (Potential subjects are located through advertisements in local newspapers seeking volunteers with widespread pain or aching).
In March l998, NIAMS and several other National Institutes of Health institutes and offices issued a request for proposals to promote research studies of fibromyalgia. As a result, NIAMS and its partners recently funded 15 new fibromyalgia projects totaling over $3.6 million.
VOLUNTEER ACTIVITIES
Your constituent might contact the flowing concerning possible volunteer activities:
The Arthritis Foundation
Southern New England Chapter
35 Cold Spring Road Suite 411
Rocky Hill, Ct. 06067
860-563-6018 or 800-541-8350
USA Fibromyalgia Association
Box 1483
Dublin, Ohio 43017
614-851-9177
Fibromyalgia Network
PO Box 31750
Tucson, Arizona 85751-1750
800-853-2929
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