FIBROMYALGIA IS NOT A MENTAL ILLNESS
By Janet Elizabeth Horton, B.G.S. and Susan Buckelew, Ph.D.
Has anyone ever implied that your pain is all in your head? If you have fibromyalgia the answer is very likely to be yes! While research has provided much information over the last decade, there is still much misunderstanding about this painful and at times disabling disorder. Whether you are a health professional or a person who has fibromyalgia, it is important to understand what fibromyalgia is and how it can be effectively managed.
What is fibromyalgia?
Fibromyalgia syndrome (FMS) is a relatively common rheumatic disorder characterized by muscle pain, stiffness and unrefreshing sleep. People with FMS may experience migraine headaches, irritable bowel syndrome, and other troublesome symptoms. While there are men who suffer from FMS, most of the estimated 10 million people with FMS in the United States are women.
Aren't people who have FMS really just depressed?
We used to think that people with FMS were clinically depressed, but research has not supported that assumption. While some people with FMS do experience depression, we now know that depression is not the cause.
If depression doesn't cause FMS, what does?
Sometimes FMS is precipitated by a specific event, such as an illness or an accident. At other times there are no precipitating events. We don't yet know why some people develop FMS while others do not. The current research path leads towards identifying a central, neurohormonal mechanism that predisposes some people to FMS. The non-restorative sleep associated with FMS appears to interfere with the production of hormones responsible for growth and muscle repair. This disruptive sleep pattern is identical to that of people who have Chronic Fatigue Syndrome, leading some researchers to believe they are closely related disorders.
How is FMS diagnosed?
FMS is the second most common diagnosis seen by rheumatologists (Wolfe, 1995). Rheumatologists are doctors who specialize in arthritis and an array of other diseases that affect the joints and soft tissues around them. In 1990, the American College of Rheumatology established criteria for the diagnosis of FMS. The criteria include the identification of specific tender points, fatigue and overall pain for more than six months.
If a person hurts all the time because of FMS, how can she know when something else is wrong?
Once a person is diagnosed and is appropriately managing her FMS, any dramatic changes in the amount of pain experienced should alert her to the possibility that something else may be wrong. She should not hesitate to seek a professional opinion from her internist or rheumatologist.
How is FMS treated?
The treatment of FMS presently is focused on improving restorative sleep through the use of medication, stress management, and conditioning exercise.
A person with FMS should consult a reputable rheumatologist or personal physician before stopping or starting medications or making any changes in how she approaches the treatment of her FMS. In general, NSAIDS such as ibuprofen are not very effective in FMS pain management, except where inflammation occurs due to injury. The use of alcohol, narcotics, or sleep-aids such as Halcion should be avoided. In the long run, they are injurious and ineffective.
Some doctors prescribe small amounts of amitriptyline, a drug used in the treatment of depression, in order to improve sleep. Amitriptyline is now known to reduce pain and improve sleep at lower dosages than are required to treat depression.
What can a person who has FMS do to cope with her symptoms?
It is very important to realize that no single approach to managing FMS is effective by itself. Some find it helpful to learn cognitive-behavioral techniques for stress management. Biofeedback training has also been used with some success. In addition to treating sleep problems and managing stress, people with FMS are encouraged to begin a very gradual program of flexibility training and aerobic exercise.
People who have FMS can easily become deconditioned. It is unlikely that anybody would feel like exercising when they always have flu-like symptoms! However, the great benefit of even a gentle exercise program is an improvement in the quality of sleep. It is during deep, "restorative" sleep that the body produces the hormones required to repair muscle tissues.
Conditioning exercise also reduces the likelihood of injuring muscle tissues. The challenge for the person with FMS is in the gradual approach to exercise. Doing too much, too soon can hurt deconditioned muscles. That just creates more pain and fatigue. A helpful approach is to learn some gentle stretches that may be used throughout the day, especially before and after walking.
Exercise trainers encourage inactive people with FMS to begin by walking for only five minutes per day. The walking does not need to be vigorous, and it does not need to "feel like exercise." The point is to begin slowly. Adding a few minutes of exercise each week to the amount of daily aerobic exercise makes it possible to increase activity without causing injury or increasing pain.
Is there any support for people with FMS, their families or their friends?
Many cities now have chronic pain support groups. Some have fibromyalgia and chronic fatigue syndrome support groups. The Fibromyalgia Network maintains information about support groups and knowledgeable physicians in many areas.
Does anyone publish reliable information that can be given to a family doctor who has outdated opinions about FMS?
Good information is important for people with chronic diseases as well as for their doctors. The Arthritis Foundation is preparing an updated version of a pamphlet about FMS. The foundation is also testing and developing a Fibromyalgia Self-help Course that is similar to the Arthritis Self-help Course developed by Kate Lorig, Ph.D.
On-line information is available at the University of Missouri's Fibromyalgia Resource Center
Janet Elizabeth Horton has FMS and is a "Participatory Action Research Partner" at the University of Missouri Arthritis Rehabilitation Research & Training Center. She is completing her studies in consumer health informatics at the Missouri School of Journalism.
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