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But the reputation is undeserved. Fibromyalgia is a real medical syndrome that is being taken more seriously these days, thanks to a study out of the University of Alabama that has found what may be the underlying causes: a reduced blood flow to the parts of the brain that process pain and twice the normal level of a brain chemical called substance P, which helps nervous-system cells send pain messages to the brain. Not only do patients now have scientific support to prove they're not crazy but doctors also have more reason to take their complaints seriously.
The complaints are serious indeed, from swelling, tingling, numbness and stiffness in the soft tissues (muscles, tendons, ligaments) to achy, throbbing pain that is worse in the morning, intensifies again at night and has been known to drive sufferers to suicide. Fatigue is a common complaint (reported in as many as 9 out of 10 cases), caused perhaps by disturbances in the deep-sleep phase the body needs to get properly refreshed at night. Patients have told me that they feel so heavy in the morning they can hardly get out of bed and that they often find it difficult to concentrate on even minor tasks. For reasons that are not known, women get fibromyalgia seven times as often as men, but the ailment can strike anyone at any age.
Doctors are at a disadvantage in diagnosing fibromyalgia because many of its symptoms are shared by other illnesses. Compounding the problem is the fact that even with these recent findings, there are still no definitive fibromyalgia markers. X rays and blood tests can be used only to rule out other illnesses.
To facilitate diagnosis, the American College of Rheumatology established a procedure for examining 18 tender points on a patient's body. If the muscles feel very sore when pressed in 11 of these 18 points, a tentative diagnosis of fibromyalgia can be made.
Although there is no known cure, there are treatments that work. In fact, many patients have managed the disease successfully with a combination of simple exercises and medication. Heat treatments, massage and regular stretching have been of benefit, as have such aerobic exercises as cycling and jogging. Though many patients say these exercises only worsen the pain, working through the discomfort can eventually bring relief.
Tricyclic antidepressants such as amitriptyline and cyclobenzaprine are sometimes prescribed to improve sleep and relax muscles. Some patients opt for temporary pain relief via local anesthetic or steroid injections.
There's no single regimen that helps everyone. Just keep trying until you find one that works for you. And don't let anyone tell you it's all in your mind.
Dr. Ian (e-mail: ianmedical@aol.com) is a correspondent for NBC's Today show. For more on fibromyalgia, see arthritis.org
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