As a kid, Lynne Matallana recalls telling her mother she hurt a lot. I was told to rise above it, she says. She tried but wasn't always successful. In my teens, I had a lot of problems with my period, she says. In my 20s, I was diagnosed with irritable bowel syndrome. In my 30s, I had infertility problems. During a laparoscopy, she woke up during the surgery, which seemed to trigger even more distress, including migraines, sleep problems, restless leg syndrome, and overall pain and fatigue.
After seeing 37 doctors, from internists to neurologists to psychiatrists, Matallana was diagnosed with lupus, treated for eight months with steroids and got worse. Finally, a young physician fresh out of medical school told her she had fibromyalgia, a chronic condition characterized by fatigue and pain in the tissues of the muscles, ligaments, and tendons.
Fibromyalgia affects between 3 million and 6 million Americans, according to the American College of Rheumatology. Matallana, now 50 and the president and co-founder of the National Fibromyalgia Association based in Orange, Calif., puts the figure as high as 10 million.
The exact cause of the condition isn't known. Those with a family member having the condition are more likely to develop it, as are those with rheumatic diseases. Other contributing factors are thought to include infections, sleep disturbances, abnormalities of the sympathetic nervous system, chemical alterations in the brain, changes in muscle metabolism, hormonal shifts, psychological stress, and/or an injury or trauma.
While there is no cure, people do get well enough to lead full, balanced lives. The key, Matellana explains, is to find the right blend of treatments. Her own recovery regimen focuses on exercise, massage, adequate sleep, and a healthy diet, as well as painkillers and sleeping pills when necessary. Within a few months of getting the diagnosis, I could tell things were going to get better, says Matellana, who now has enough energy to work a 60-hour week.
Do you have it?
Fibromyalgia is an energy crisis in the body, declares Jacob Teitelbaum, M.D., director of the Annapolis Center for Effective Chronic Fatigue Syndrome/Fibromyalgia Therapies. It comes with a laundry list of symptoms, including:
- widespread pain
- irritable bowel syndrome
- painful menstrual periods
- numbness or tingling in the extremities
- memory problems
- sensitivity to heat or cold
The frequent presence of depression has led some doctors to dismiss fibromyalgia as purely psychological. But that tendency is diminishing, observes Robert Lahita, M.D., professor of medicine at Mt. Sinai Medical School in New York and chair of medicine at Jersey City Medical Center in New Jersey. I think more doctors now identify fibromyalgia as a real illness, he says. I know its a real illness by my way of thinking.