By David Hoh
When Rosalie Devonshire was diagnosed with fibromyalgia in 1990, she found
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.
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
"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."
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
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
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.
David Hoh is a former editor of The CFIDS Chronicle. He is currently
teaching 4th grade
at a public school in Charlotte, N.C.