A few clinicians offer extreme measures to desperate sufferers. Dr. Jay Goldstein of Anaheim Hills, California, rolls out an arsenal of 80 drugs, administering one after another, sometimes within the span of an hour, until a patient discovers one that works. Wendy Hunter, who spent a grueling week sampling 18 drugs, found relief with lamotrigine (Lamictal), a mild anticonvulsant normally used to treat seizure disorders. "It was like a vacation from my body," she recalls. But the prescription drug worked for just a month.
Because conventional medicine has so little to offer, many FMS patients turn to alternative therapies. One popular remedy is the dietary supplement CoQ10. The antioxidant reportedly helps clear "fibrofog," the mental fuzziness that often accompanies a flare-up. Another favored supplement is magnesium malate to control pain. FMS patients are also turning to magnet therapy, a remedy long popular in Japan, where magnets are embedded in mattresses, insoles, and wrist and knee wraps. The idea is that magnetic energy stimulates increased blood flow and oxygen to the painful site, relieving discomfort.
What's clear, say FMS sufferers and experts alike, is that the patients most successful in controlling their symptoms are those who take charge of their own care. Hunter, now relies on getting 10 hours of sleep a night, performing regular exercise and watching her diet—by eliminating caffeine and alcohol and eating smaller, more frequent meals. Says she: "I realize there is no magic cure and that I have to work at being fine again."
A Political Hot Potato
One of the thornier issues is whether FMS patients should qualify for Social Security disability payments. To date, the Social Security Administration has no listing for FMS, so in terms of a disability claim, the syndrome doesn't exist. FMS patients do, however, sometimes get disability payments by claiming mental impairment.
Attorney Jeff C. Mapes, of Scappoose, Oregon, who has won some disability cases for FMS patients, says Social Security Administration judges are skeptical of FMS for precisely the same reason that the medical community has problems with the ailment: the lack of objective proof.
"When I'm considering representing a client with FMS, I look for a Mother Teresa level of credibility," observes Mapes. "I look for someone who has historically been highly motivated, an achiever with an increasing level of frustration about not being able to function well. I look for indications that other aspects of the person's life have suffered, that the person can't go to church or to PTA meetings or participate in other activities he or she used to enjoy."
Some FMS experts aren't convinced that applying for disability is the wisest course in any event. "Disability doesn't provide enough financial support, and they'll hurt at home just as much as at work," says Dr. I. Jon Russell of the University of Texas Health Sciences Center in San Antonio. "I advise my patients to stay within the workforce and limit their hours."
For Help
The Fibromyalgia Network (P.O. Box 31750, Tucson, Arizona 85751; toll-free phone: 800-853-2929) publishes a quarterly newsletter ($28 annually) with the latest information on FMS and other related conditions. The Network also maintains a Web site with lists of resources and basic information: www.fmnetnews.com/
The Oregon Fibromyalgia Foundation (OFF) has a Web site written and maintained by researcher Robert M. Bennett, M.D., with articles on FMS and chronic pain: http://www.myalgia.com/
The Arthritis Foundation publishes the Fibromyalgia Wellness Letter six times a year with the latest research findings on FMS, tips on exercise and nutrition, mind-body techniques and advice on coping with FMS. The Foundation's toll free number is 800-933-0032.
There are also several on-line information and discussion groups, including CO-CURE: the Chronic Fatigue Syndrome and Fibromyalgia Information Exchange (http://www.co-cure.org/readfm.htm); FIBROM-L: Fibromyalgia Discussion Group (http://www.fmscommunity.org/); and FMS-CFS Friends International Online Support Group (http://www.fms-cfsfriends.com/).
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