Although many patients with fibromyalgia may not feel like getting out and talking about their pain with strangers, doing so can be the very thing that helps them, according to one support group leader.
Debi Parsley, leader of the Fibromyalgia Syndrome and Myofascial Pain Syndrome and Related Conditions Support Group of Calhoun County, said support groups can offer something that many helpful friends and family can’t: understanding.
“When you walk into a support group, you’re instantly in a room full of people that immediately understand what you’re going through that friends and family can’t,” said Parsley, who is a member of Antioch Baptist Church, Oxford.
Not only do participants receive understanding, they meet people who speak the language of fibromyalgia, using such terms as fibro-fog and flare to describe their symptoms.
“You immediately get validation too, because some doctors will say it’s all in your head, you’re crazy, lazy, because they don’t really learn about [fibromyalgia] in school,” Parsley said. “But when you walk into a meeting, 15 to 25 people can validate your illness and lift you up.”
That encouragement can be key to helping patients maintain their treatment regimens, said Kathleen Hamm, co-leader of the Birmingham Metro Support Group for Fibromyalgia, Chronic Fatigue and Immune Dysfunction Syndrome & Chronic Myofascial Pain. “It’s having people to encourage you to do the exercises and diets,” she said.
Because many doctors recommend that fibromyalgia patients do research and learn all they can about their illness, some support groups offer resources to patients.
Parsley’s group not only distributes a monthly newsletter containing news and ideas about dealing with fibromyalgia, they also have a group of doctors in the area that speak during the group’s meetings and are sources of treatment for fibromyalgia patients.
“The goal of our group is not only support, but also to spread awareness because many people don’t understand fibromyalgia,” Parsley said. “We also help patients find doctors and make sure fibromyalgia patients don’t isolate themselves.”
Several Web sites and organizations offer locations of fibromyalgia support groups. The following are support groups across Alabama compiled from the Arthritis Foundation at www.arthritis.org and the National Fibromyalgia Association at the Web site www.fmaware.org.
Auburn/Opelika
East Alabama Support Group
Health Resource Center
Sharon Drakeford 334-705-3264, sharon_drakeford@eamc.org
Renee Gardner 334-821-3899
Birmingham
Birmingham Metro Support Group for Fibromyalgia, Chronic Fatigue and Immune Dysfunction Syndrome & Chronic Myofascial Pain
HealthSouth Lakeshore Rehabilitation Hospital
2nd floor Classroom
Kathleen Hamm 205-868-2028
Diane Ezell 205-664-1137,
e-mail: DianeEzell@aol.com
Birmingham Fibromyalgia Support Group
Crestbrook Plaza Building,
Suite 202
3918 Montclair Road
Joe and Patricia Casebere
205-870-9661
Fibromyalgia Support Group
Good Shepherd Lutheran Church
Debbie Gohn 205-631-2939
Support and Hope
through Education
Leeds Jane Culbreth Library
Charlotte Sims 205-836-7467
Dothan
Fibromyalgia Support Group
Terrace of Grove Park
Karen Singley 205-793-2671
Florence
Fibromyalgia Support Group
Darby Drive Church of Christ
Connie Olive 256-765-0067
Huntsville
Fibromyalgia Support Group
HealthSouth
316 Longwood Drive
Lydia Love 256-534-6421
Oxford
The Fibromyalgia Syndrome
and Myofascial Pain Syndrome
and related Conditions Support group of Calhoun County
4576 McIntosh Road
Debi Parsley 256-835-2554
Tuscaloosa
Fibromyalgia Syndrome Self-Help Group of Tuscaloosa
The Alabama Rehabilitation Services Building
5306 10th Street East
Debbie Bagley debagley@aol.com
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