By David Hoh

When Rosalie Devonshire was diagnosed with fibromyalgia in 1990, she found treatment at an arthritis clinic at Abbot Northwestern Hospital in Minneapolis, Minn. As the number of fibromyalgia patients grew, she and a nurse, Julie Kelly, who also had the illness, got training from the Arthritis Foundation and founded the first fibromyalgia support group in Minnesota.

"The clinic was getting so large that Jenny Fransen (the nurse who directs the clinic) asked us to develop a fibromyalgia class," said Rosalie, a former teacher. They also presented the class program and its workbook, Taking Charge of Fibromyalgia, at the American College of Rheumatology conventions in 1991, 1993 and 1998.

Eventually the two volunteers realized they were doing so much work they ought to turn it into a business. So they obtained the copyright for the book and the program from the hospital. Without an aggressive marketing plan, they've been successful enough that the fourth edition of the book was printed this year. Several hospitals have purchased the program, and support groups have bought the book. Julie still teaches the course in Minnesota. Rosalie is currently a therapist at Children's Aid and Family Services in Lidgewood, N.J. She offers the course at Toledo Hospital in Toledo, Ohio, and has been looking for a hospital site in New Jersey since moving there.

The workbook is broken up into small pieces, covering everything from a history of the illness, symptoms, related medical conditions, research, a wide range of traditional and alternative treatments, lifestyle adjustments and coping tips, family and work issues, and the doctor-patient relationship. This latest edition includes the treatment protocols of several noted doctors---Jorge Flechas, Jacob Teitelbaum, Jay Goldstein and Thomas Romano. The book also expands its discussion of alternative treatments and highlights the links between fibromyalgia and chronic fatigue and immune dysfunction syndrome (CFIDS).

"Some doctors just don't like alternative treatments because they're not studied well enough, but we can't keep that from consumers. It's their choice. I've used some of them, and I know they can be beneficial to some patients," Rosalie says. "We also thought it was important that information on some of the more unusual treatments for fibromyalgia be made available, so we added an appendix."

As for the possible connection to CFIDS, Rosalie is too familiar with that. She was diagnosed with CFIDS three years ago.
 "In one of our classes, one-third of the people had the same symptoms - sore throats and other things that suggested CFIDS. And those who had CFIDS in addition to fibromyalgia seemed to be worse off. We suggest that people experiencing a wide range of symptoms should see an infectious disease specialist (in addition to a rheumatologist) for further evaluation. We have also changed the book to reflect that we don't know if they're the same illness or how they're related. Whether they are or not, many of the coping strategies are the same."

Rosalie also points out that the book features numerous worksheets, which serve several purposes.

"It's very important for fibromyalgia and CFIDS patients to keep track of how they're doing so they can see improvement. Progress can be so slow that it's easy to get discouraged. A lot of physical therapists are recommending the book because the worksheets help patients stay focused on specific goals.

"We were getting feedback from physicians about a patient who might have tried a new medication but then couldn't remember when they took it or how they felt afterward."

They also recommend keeping a journal, which might reveal a pattern to the symptoms and suggest a particular course of treatment.

The 186-page book is the text for the class, which Rosalie and Julie teach in one day. Patients are encouraged to bring pillows, walk around and do whatever else they need to do to survive the day.

"When we teach, we tell our own stories and it gives people hope-not that they'll get completely better but that they'll be able to manage the disease. I was getting better to the point that I returned to playing doubles tennis when I got sick again and was diagnosed with CFIDS." She's improved since then, too, and recently earned a masters degree in social work from the University of Michigan.

"The symptoms are all still there; I just use many different strategies to keep them at bay," she said.

Perhaps the biggest change in the seven years that she and Julie have been teaching the course is the response of doctors to the illness. In 1991, she said, doctors would call those individuals with CFIDS or FM crazy, and she knows some still do not believe either illness exists. "On the other hand, a lot of doctors are coming to us and saying `What can we do? One third of my practice is fibromyalgia.'"

Rosalie said she and Julie believe their program empowers patients by giving them information and tools for doing something about their illness and taking more control over their lives.

The handbook, Taking Charge of Fibromyalgia: A Self-Management Program for Your Fibromyalgia Syndrome, is available from the authors for $18 plus $5 shipping and handling in the United States. For information on multiple order discounts or on the full educational program, write to them at Fibromyalgia Educational Systems Inc., 500 Bushaway Road, Wayzata MN 55391-1912.