Saturday, July 29, 2000 | 9:08 a.m.
Help
For more information on the FMS/CFS Friends Support Group, call 897-9326 or 435-5890.
As Geri Beatty spoke into a microphone, Patti Wright demonstrated the convenience of a collapsible cane.
The 50 people seated inside the American Legion Hall on Van Wagenen Street in Henderson watched as the two women also demonstrated the benefits of neck braces and battery-operated massagers.
Another woman passed out handfuls of weekly pill boxes. A purple floral sign on a nearby table read "Welcome Friends."
Welcome to the monthly meeting of the FMS/CFS Friends Support Group, a nonprofit organization that's a resource and support network for patients who suffer from chronic fatigue. Known as fibromyalgia, it's an illness characterized by pain in the muscles, joints and fibrous tissues in the body.
The grass-roots effort began four years ago with just a few members and has grown to a group of nearly 800. Many attend meetings for validation that they don't receive elsewhere. Others are looking for information on new treatments and coping mechanisms.
Although fibromyalgia has been recognized since the late 1980s by the American Medical Association, affirmation from doctors has been slow. Some write off their patients as hypochondriacs. Patients often look healthy, leaving family members and friends questioning their ailments.
"Most of these people are in serious pain, and people are telling them it's in their head," said Bruce Baltzley, whose wife, Shirline, was diagnosed with fibromyalgia four years ago.
Many patients say they had to re-organize their lives, often leaving jobs and hobbies behind.
Patients complain of sleep disorders, headaches, irritable bowels and hypersensitivity to odors, noise and bright lights -- symptoms that can't always be detected through standard medical tests.
"Symptoms arrive," said Wright, founder and group leader of the organization. "You feel like you have the flu. You go to the doctor and nothing is found. But you're virtually never out of pain."
Fibromyalgia is diagnosed by complaints of widespread pain throughout the body for at least three months and sensitivity to at least 11 of the 18 specified tender points in the body.
The neural network disorder involving the nervous system and the brain is brought on by trauma, stress or exposure to toxic chemicals.
There is no known cure. Treatment includes deep sleep, physical therapy and medications used to treat depression.
With increased publicity, people who hadn't yet defined what ailed them are coming forward, Wright said.
Working with local doctor Mervyn Willard, she relays the latest information at the meetings.
Members are being trained to take the barrage of phone calls the group receives, sometimes 20 to 30 each day.
A 10-member phone committee already makes calls to at least 100 people monthly, Wright said, adding she'd like to have enough staff to check on members each month and handle new callers.
"We try to give them hope, humor, validation and acceptance," Wright said. "A lot of these people have no self-esteem. Their families have turned away from them. It's such a peculiar thing. It's hard to explain to people.
"What we're doing is showing people how to save themselves trouble. This can absolutely ruin your life if you don't have the right help."
The group's newsletter, printed by Boulder Station hotel-casino, reaches nearly 1,000 readers and provides information on coping with the illness. Meetings are held the second Monday each month at Denny's restaurant on Boulder Highway and the third Thursday at the American Legion Hall in Henderson.
The playful demonstration that opened the recent meeting included a modified use of a 24-pocket hanging shoe organizer that Geri Beatty, spokeswoman for the group, uses for items that otherwise may be misplaced, such as car keys or medications.
"A lot of people don't realize they can take control of the situation and get better," Beatty said.
Beatty, 52, was diagnosed more than two years ago after suffering from symptoms for years. Despite her symptoms, she works full time as a facilities coordinator in the engineering department at Boulder Station hotel-casino.
The tips are welcomed. Evelyn Barton left her former support group -- a small unit of people "talking about how bad things are" -- because it was so depressing. She said she swore off support groups forever until she got wind of this one, which she said is uplifting.
"With this group you have hope," she said. Everybody at the meeting will tell you something they do to cope, she said.
Barton brought with her a notebook, its first pages covered with a list of vitamins and minerals she's been taking since her visit to a holistic chiropractor a month ago.
She says she takes 36 pills daily, but is now able to move. "The pain is lessened," she said. "It's manageable now."
Those who can't attend the meetings can pick advice from the monthly newsletter.
"For some of them the only contact with the group is the newsletter or a phone call," Beatty said.
The information is a benefit to members and families, said Baltzley, whose two sons attended the meeting for the first time to support their mother.
"For me I just try to understand how she feels," Jared Baltzley said of his mother.
When asked how the illness has affected the family, Bruce Baltzley said, "She used to be as active as can be. She was Suzi Homemaker and worked outside of the home. (Now), this is literally the only thing she comes out of the house for."
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