Fibromyalgia syndrome: shedding light on the "mystery disease."
"I would guess that the vast majority of people with this condition have been told, at some point, that it's all their fault -- either that their personalities were screwy or they were making it up. It's been such a maligned, misunderstood disease."
The speaker was Edith Schwab-Gore, a 40-year-old psychotherapist from Los Angeles, and the condition she was describing was fibromyalgia syndrome, also known as fibromyalgia or fibrositis. Edith probably knows a lot more about fibromyalgia than most mental health professionals. She's had the painful condition three years.
Before Edith was finally diagnosed as having fibromyalgia, doctors told her the pain must be all in her mind. "It's a horrible feeling," she says. "You're having this intense pain and you know it's very real, but someone's telling you that you're making it up!"
She adds that it's hard to believe in yourself when you're in that kind of situation. "I was so frightened and so vulnerable. I really felt helpless."
The facts on fibromyalgia
Fibromyalgia is an arthritis-related condition that causes widespread pain in the muscles and tendons at specific "tender points" throughout the body. Other symptoms include chronic fatigue and a pattern of non-restful sleep. The tender points -- which are remarkably similar in all people with fibromyalgia--help differentiate this syndrome from other diseases with similar symptoms.
The word "fibrositis" -- the "itis" connoting inflammation--was originally used to describe the syndrome because it was thought to be due to inflammation of the connective tissues within the muscles. Although this is now known to be untrue, the term fibrositis is still often used interchangeably with fibromyalgia.
Although recent research has demonstrated certain physiological abnormalities in some people with this condition, there are no specific lab tests or x-rays that can detect fibromyalgia, and for many years it was though that the disorder was psychological.
It's only been in recent years -- as more has been learned about fibromyalgia--that many members of the medical profession have begun to accept it as a physical disease or syndrome. But it is still not accepted or understood by many doctors.
"Many of the people we see who have fibromyalgia have seen several other physicians before the diagnosis was made," says Dr. Kenneth Nies, a rheumatologist who practices in Torrance, Calif. and teaches at UCLA. He points out that some physicians may not have even heard of the tender point concept or various other indications of fibromyalgia. "Often our patients have been told that their symptoms are all in their heads and there's nothing physically wrong with them. Sometimes it's a great relief for them to find out they really do have a physical condition."
Although the exact prevalence of fibromyalgia has not been determined, current estimates suggest that somewhere between three and 10 million Americans have the condition. Fibromyalgia is much more common in women than men, and generally occurs between the ages of 35 and 60, although the syndrome can start as early as the teenage years. Sometimes fibromyalgia occurs in conjunction with another disease, such as rheumatoid arthritis.
Although the exact cause is unknown, theories about its origin link fibromyalgia to emotional trauma, sleep disturbance, or a viral-like illness. The condition has many similarities to chronic fatigue syndrome. Stress, anxiety and fatigue are known to make it worse.
Treatment offers hope
At present there is no cure for fibromyalgia -- no magic bullet that will make the symptoms disappear forever--but there are a number of treatments that are currently being used. Low doses of tricyclic drugs have been used to improve the quality of sleep, and may also have a beneficial effect on muscles. Aerobic exercise has also been found to be very helpful, but such a program should be instituted gradually.
Ice packs or heat treatments -- including hot packs and showers -- may give some short-term relief, and sometimes pain-relieving drugs are injected directly into the tender points. Correcting poor posture and changing the environment so that everyday tasks can be performed more comfortably are important so that the muscles do not become overstressed and fatigued.
Other treatments that have been used include meditation, visualization, relaxation techniques, stress management, biofeedback, yoga and stretching exercises. Counseling may be very beneficial to some, and support groups may also be helpful.
It is important for people with fibromyalgia to work closely with their doctors to determine an individualized treatment plan for their condition. There are a number of treatments available to help people with fibromyalgia, and research is providing more information and better treatments.
When fibromyalgia hits home
Margaret Meriwether of Montgomery, Ala., works full time and attends college part time. A 42-year-old wife and mother of two, Margaret had her first episode of fibromyalgia early in 1981, when she woke up with pain in her neck, shoulders and lower back. Her condition was originally diagnosed as rheumatoid arthritis, but in 1984, after a bad spell that lasted for months, the diagnosis was changed to fibromyalgia.
For a couple of years Margaret was afraid to commit herself to school or a full-time job. "I was immobilized by fear, and that's the worst, most difficult emotion to deal with, I think. When I had bad flare-ups, fear would take over, and it intensified the pain and lengthened the duration of the episode."
For Margaret, help finally came in the form of counseling. "I had to seek help. I had to come to terms with my emotions," she says.
"My self-esteem has always depended on how much I could accomplish and how well I could perform," she continues. "But I'm no longer so goal-oriented. I'm more involved in the process and the actual doing of whatever I want to achieve. I have a much healthier attitude about what I want to do."
Edith Schwab-Gore agrees that the psychological effects of fibromyalgia can be devastating. "I think fibromyalgia is at least as difficult emotionally as physically," she explains. "Just coping with the pain is terrifying enough, not to mention all the losses you experience. There are so many things you used to be able to do that you can no longer do.
"You feel depression, helplessness and rage," she continues. "It's what people with any chronic illness go through -- the normal grief process. But it can be very, very devastating. I think I'm a pretty sturdy person in many ways, but I went through some terrible times."
She notes that how the condition affects each person depends largely upon the severity of the illness and the degree of pain. "For some people, this is a minor condition and for some it's an overwhelming thing."
As fibromyalgia becomes more well-known within the medical community as well as the general population, people with the condition are beginning to feel less isolated and more able to handle their disease. This "mystery disease" is finally becoming widely accepted, to the relief of millions who finally have a legitimate name for their pain.
PHOTO : In fibromyalgia, the intensity of the pain is often greatest in certain locations,
PHOTO : including the bundle of muscles in the back of the neck and shoulders, the sides of the
PHOTO : breast bone, and the bony points of the elbows and hips. These sensitive tender spots are
PHOTO : called "trigger points."
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|Date:||May 1, 1989|
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