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Painful Disease Eludes Testing : Fibromyalgia Frequently Misdiagnosed, But as Many as 3 Million in U.S. Have It

June 24, 1989|PAULA VOORHEES | Paula Voorhees is a free-lance writer

Borie says she made up her mind then that she would do everything in her power to help promote research and education for the disease and donated $300,000 to the Arthritis Foundation for just that purpose.

Because of her donation and others, word is spreading via telethons, literature distributed by the Arthritis Foundation and symposiums.

Recently, support groups have been formed for sufferers of the disease. FAN (Fibromyalgia Awareness Network) in Orange County had its first meeting a year ago. Sixty women showed up.

"It was a very emotional meeting," recalled Betty Moriarity, a 62-year-old Long Beach teacher who was forced to take early retirement because she kept falling asleep in class.

"There was a lot of crying. It was such a relief to know that you're not alone. Just to be able to communicate with others who could relate to the pain and psychological stresses you've been through brought a certain amount of serenity. I was amazed that there was such a large number of us."

FAN meets every fourth Tuesday from 2 to 3:30 p.m. in the Plaza Classroom at the Medical Center of Garden Grove.

The group offers discussion sessions as well as speakers such as Dr. Bob Merlino from the Chapman Pain Clinic, who recently spoke on the control of pain.

A cure has not been found for fibromyalgia. Once diagnosed, patients are put on a combination of therapies to help control the symptoms. These include diet, antidepressants, exercise, cortisone shots at the trigger points, biofeedback, heat massage and pain-coping techniques.

Therapies and their effectiveness differ from patient to patient. Patty Dicker considers herself lucky. Her first therapy of medication left her pain-free for almost three years. Her next flare-up was not eased by the same medication, and a whole new combination of drugs was prescribed. She had two more years free of pain, although her trigger points never disappeared. She recently had another flare-up and began exploring a new medication therapy.

Norma Borie has never been free of pain. "I'm always in about a Level-7 pain. When I have a flare-up, I feel as though I'm going to die.

"I've always been a very physical, touch-oriented person. My husband used to lay next to me at night and hold my hand at first--but now the pain is too much even for that. The thought of someone touching me makes me cringe. I miss my hugs."

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