- The Washington Times - Sunday, January 6, 2002

Taking medication and finding a knowledgeable doctor can help fibromyalgia sufferers manage their symptoms, but they must be proactive in their care, says Lynne Matallana, founder of the National Fibromyalgia Awareness Campaign, a nonprofit advocacy group.

"Some patients expect to go to the doctor and be made well, but it really is a management program," says Ms. Matallana, 46, who has lived with sleep problems and "burning, aching pain all over" since 1993.

Ms. Matallana, whose fibromyalgia symptoms first showed up following routine gynecological surgery in 1993, says she finds her stress level has an impact on how well she feels.

"I used to be able to get six hours of sleep a night and travel for my job," she says. "Now I have to have 10 hours, and if I am not feeling good for a week, I have to take the time to slow down. Everything has changed, from my relationship with my husband, to changing housekeeping roles to speaking up when I need to."

Margaret Goldbloom of Chevy Chase, Md., says taking small steps toward being active again can help get through the pain.

"If your body is sitting there in pain, then start slowly," she says. "Take a walk around the block. I talked to one woman who had literally been in bed for three months. She started to get active again just by getting out of bed."

Miryam Ehrlich Williamson, a fibromyalgia sufferer and author of "The Fibromyalgia Relief Book: 213 Ideas for Improving Your Quality of Life," says exercising in small bursts can help alleviate pain.

"I exercise in five-minute increments three times a day," Mrs. Williamson says. "A major part of managing fibromyalgia is lifestyle changes such as diet and exercise. We are the world's foremost authorities on our bodies if we pay attention."

Mrs. Williamson says she has found that eating a diet low in sugar and refined carbohydrates has helped her condition. She also takes a regimen of vitamins that includes vitamins C and E, calcium, and antioxidants.

Jane Rankin, 56, a Rockville woman who has had fibromyalgia for three years, says she used to have pain so bad she "thought she was dying."

Mrs. Rankin combined medications with acupuncture, massage and physical therapy to control her symptoms. She takes Elavil and Advil.

"I get better and I get worse," she says. "I work full time, and if I don't get rest, then I become more miserable. It is a vicious cycle. I do the acupuncture once a month now, and it does seem to be helping. It might be that I have just gotten better over time or a combination of factors."

At certain times, Mrs. Rankin has developed her own esoteric ways of managing pain. When her hands hurt, running them under cold water helps alleviate the pain. Sometimes hot water will have the same effect, she says.

One key to coping is to find a physician who understands you, the women say.

Mrs. Williamson of Massachusetts had to go through doctors who said she was hysterical, or needed to lose weight or needed a boyfriend before finally finding one who understood fibromyalgia.

Ms. Matallana, who lives in Orange, Calif., saw 36 doctors including psychiatrists, rheumatologists, neurologists and internists before finding specialists who helped her manage her pain.

"It takes a real partnership," she says. "We don't use the word 'cure.' There isn't a cure at this point. How can we cure it when we don't really know exactly what it is? But it is most important that patients become educated about their condition."

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