Can you tell us, Mary, why you decided to take on the task of support group work and how the group got started? "I have FM myself and for years I thought I was the only one. But the more I talked to others the more I saw I wasn't alone. I was always getting phone calls from people with questions that I couldn't always answer. So with the support of the community, the Arthritis Foundation and friends we organized a day-long seminar held at Knox College on FM. That was in the spring of 1995. We had physician speakers as well as pharmacists, occupational, physical and massage therapists. Attendance that day was over 200, so it was obvious at least to me that the need for a support group was there. We decided we would meet once monthly and attendance may vary from month to month and for the most part we have anywhere from five to 25 each meeting."
What would you say the person with FM is looking for when they come to the support group? "They're looking to learn more about their disease and how they can help themselves coping skills for day-to-day living. They are also looking for emotional support and stress relief. Living with FM can take its toll on family as well as the person diagnosed with FM. We allow support group members to talk freely about what is bothering them get it off their chest so to speak. No one case of FM is the same and this is very frustrating to the individual with FM. It's a really big step for someone with FM to begin coming to the group. They know that in reality the focus of their care is going to shift from mostly physician-oriented to being an active participant in their own care. Self help is definitely the trend in FM and it seems to be working. That's really good news!"
How many members does your group have? "That's hard to say but I can say we have had well over 200 people come through the door looking for help."
You say the trend is towards self help; can you tell us a little more about that? "Everyone with FM needs to be under a doctor's care and some medications can be necessary, pain relievers, muscle relaxants, antidepressants and sleeping medications but self help and self care are vital to the recovery of the person with FM. Techniques that can be learned are relaxation, exercise and stretching programs, correct posture and body mechanics, coping with the emotions, making healthy life style changes and learning to set goals."
What other facts can you tell us that my readers might find of interest or help? "There's a whole lot of research going on through the NIH and of course we all hope this will turn into answers for those of us with FM. This is much more a womens' disease, in fact the ratio is 20 to 1. It is seen worldwide; it affects all races and all ages from young to old but the average onset is from ages 20-30. There are 10 million affected in this country alone. In spite of its chronicity, it is becoming something one can live with and still live a full and happy life without pain."
Are there any new self help books you would recommend? "Yes, the three new ones I like are Your Personal Guide To Living Well With Fibromyalgia put out by the Arthritis Foundation, The Fibromyalgia Survivor by Mark Pelligrino and The FM Self Help Book by Dr. Russell."
When does the support group meet? "We meet the last Thursday of the month at St. Mary Medical Center at 10am and 7pm. I might also mention there is a wonderful seven week self help course given by the Arthritis Foundation coming up. The cost is $40 and the times will be on Mondays July 14thAugust 25th at Cottage Hospital from 9:30-Noon or Tuesdays from 6:309:00pm from September 2nd to October 7th. If you are interested you may contact me, Mary Bortz, at 342-2843."
Thank you, Mary, for the informative interview and a job well done. Keep up
the good work!
This article posted to Zephyr online July 5, 1997