|
Support Groups Relieve Frustration, Isolation
By Nicholas Rummell
For people with fibromyalgia, the misconceptions coworkers, family, friends -- even doctors - hold about the disease are what really hurt.
Fibromyalgia syndrome (FMS) has symptoms that include more than just unpredictable bouts of pain, years of insomnia, stiff joints, and muscle fatigue.
Frustration and isolation accompany the enigmatic disease, too.
Jennifer Thompson said hearing people ask if she was doing all right, when pains in her jaw hinge joints plagued her, was one of the worst parts of her FMS.
Having to explain to people constantly how she was never all right, that the pain never went away completely, became a laborious task in itself.
Not only did the feeling of frustration at not being understood irk her, but she also felt that she wasn't doing anything to actively combat her disease.
"Before the support group, I had the feeling that I was not doing anything to help anybody else," Thompson said. "I needed positive action in my life."
And, with the support group, she gets the positive action she craves.
Thompson, who was diagnosed with FMS when she was 21, helped start an alternative evening support group for people who couldn’t meet during the day. She now co-leads the monthly meetings.
"It gives me a sense of accomplishment," she said.
At a Meeting
The Mid-Missouri Chronic Fatigue Syndrome and Fibromyalgia Association sponsors Thompson’s support Group. The Mid-Missouri organization has provided an outlet for people with FMS, Chronic Fatigue Syndrome (CFS), and other "invisible" disabilities for more than 10 years.
During a particular meeting, attendees might discuss the various remedies that have provided relief for the intermittent pain that people with fibromyalgia suffer, or swap information on effective sleep treatments. Acupuncture, yoga, massage therapy, tai chi, magnet bracelets, electric blankets - no treatment is off limits for discussion.
Because so many of these treatments might only provide temporary pain relief, throwing out a suggestion during a meeting could mean a pain hiatus for months, or for only a week. However, as most people with FMS will say, any time spent away from the pain is good.
A Smile a Day...
"What's the difference between arthritis and fibromyalgia?" riddled one member to the rest of the support group. "Arthritis gets more press."
Light-hearted jokes are bantered about during some group meetings and offer a more personal form of escape from each person's disability. In addition to FMS and CFS, people with other illnesses such as Gulf War Syndrome, Multiple Chemical Sensitivity and other forms of arthritis occasionally frequent the group meetings.
Group member Mary Loftus said that when she goes to her doctor, she sometimes feels like a second-class citizen; to her, the doctors and nurses are thinking: "Here comes the complainer."
At the meeting, she discussed the various medications she has taken for her fibromyalgia with a wizened voice, but still laughed when fellow group member Connie Nickles said that her pain pills make her breath smell like dirty socks.
"Laughter is a great part of support groups, especially since the people there really understand where the humor comes from," said Thompson.
Research Shows
People who attend support groups reported slight improvement in handling their pain compared to people who didn’t attend, according to a study published in the October 1998 issue of Arthritis Care and Research. The main benefits from support groups are psychological, however.
The best result from a support group is validation, when a person realizes that they are not alone with their disease, said Karen Smarr, a senior researcher on a study on depression management and arthritis being conducted at the Missouri Arthritis Rehabilitation Research and Training Center.
Smarr also said that each group's effectiveness is really measured by the strength of the group leader, as well as the size of the group. The best size for support groups, said Smarr, is usually between eight to 10 people.
"It is not too small, so that people wonder if they really get anything out of the group, and not too big, so it becomes cumbersome," she said.
As a support group leader, Thompson says some people worry that group meetings could turn into gripe sessions, with people complaining about their pain, and not making positive progress.
To ensure this does not happen, Thompson said that her group focuses on what can be done about the pain and sleeplessness, not just harping on the symptoms.
Not for Everybody
Judy Fry, who was diagnosed with fibromyalgia in 1983, back when it was still known as "fibrositis", has learned to live without support groups.
"I work in a place that treats fibromyalgia and understands the disease," Fry said. "Plus, I have a good support system of friends and family who understand my disease."
Fry's situation is very different from many people with FMS - she works as support staff for rheumatology department of the University of Missouri.
More Than Sympathy
Support groups can furnish more than just sympathy or understanding, however.
The Arthritis Foundation, one of the leading organizations dealing with fibromyalgia and other arthritis-related diseases, sponsors support groups with guidelines that must be met.
For instance, medical products can't be solicited during a meeting and group leaders must go through informal training to learn about different conditions and symptoms of fibromyalgia and other diseases.
According to the foundation, sponsored groups receive additional resources from the foundation such as literature, funds for phone calls related to the support group, and assistance in arranging for occasional guest speakers.
And even non-sponsored support groups tend to circulate medical journals and literature on various medications and treatments, she noted -- important knowledge for anybody with fibromyalgia or chronic fatigue syndrome.
Important knowledge for those with fibromyalgia or chronic fatigue syndrome can be obtained even in non-sponsored support groups. These groups may circulate medical journals and literature on various medication and treatments.
|
|
