Fibromyalgia courses focus on self-help
Tailor information to specific needs of patients
When the Mayo Clinic in Rochester, MN, launched a course for patients with fibromyalgia syndrome six years ago, the chronic condition was not well known, even within the medical community. Today this 90-minute class is scheduled every weekday at 3:30 p.m. and Mayo is opening a fibromyalgia center designed specifically to treat patients who have been diagnosed with the syndrome.
"People with fibromyalgia do better in a group setting, for they need to know that others can identify with what they have because it is so unique, complex, and difficult. They have gone through a lot to get the condition diagnosed," says Marilyn Smith, RN, MS, program coordinator for the Mayo Patient and Health Education Center.
Fibromyalgia is a form of muscular or soft-tissue rheumatism that causes pain throughout the body. About 90% of people with the condition experience moderate or severe fatigue, lack of energy, and decreased exercise endurance. Changes in mood are common, and many people feel "blue."
Headaches and abdominal pain, bloating, and alternating constipation and diarrhea are common. The skin and circulation are often sensitive to temperature and moisture changes, and some people have numbness and tingling in various parts of their body.
The Atlanta-based Arthritis Foundation also recognized the special needs of people with fibromyalgia by creating a fibromyalgia self-help course. Although fibromyalgia patients were enrolling in the arthritis self-help course, they wanted more in-depth information on their condition, and certain issues unique to fibromyalgia were not being adequately addressed, explains Michele Boutaugh, MPH, vice president for patient and community services for the Arthritis Foundation.
"Fibromyalgia patients felt there was value in just being with people who had been diagnosed with fibromyalgia and who understood the unique patterns of the disease," she says.
The need for a course that addresses the special concerns of fibromyalgia patients is great, agrees Christine Marschinke, RN, who co-wrote the "Fibromyalgia Survivor Course" with Mark J. Pellegrino, MD. "The goal of this course is to help patients cope as effectively as they can and empower them to function as independently as possible with their fibromyalgia," she explains. (For information on the "Fibromyalgia Survivor Course" and the "Fibromyalgia Self-Help Course," see source box, p. 138.)
People need to understand what fibromyalgia is, its signs and symptoms, and its related conditions. "They need to know what the syndrome entails and what is going on with their bodies. They hurt and are fatigued but they look so good on the outside," says Marschinke.
Focus on management techniques
Once people understand what is happening in their bodies, they can learn coping skills and ways to manage the symptoms, says Marschinke. For example, patients need to identify their baseline of pain and how they can help control pain flare-ups. They might try alternative medicine like chiropractic or biofeedback. Certain kinds of drugs, vitamins, or herbs also might help their condition.
"Patients can’t expect one thing to work. It’s like having several pieces to a puzzle," she explains. "Each individual has to work with their doctor to make that puzzle complete so they can function at their best."
In the course taught at the Mayo Clinic, people are told there are things they can control and things they can’t control in their life. They focus on the things they can control and spend time learning strategies to improve their quality of life.
For example, they learn proper posture so they are not straining or fatiguing muscles. "Fibromyalgia patients have a very narrow path to follow. If they have bad posture, it will add to their fatigue and pain, so it is important to know the proper posture for standing, sitting, and lying down," says Smith.
They also are taught a breathing technique for relaxation and encouraged to practice it at home a couple of times a day whether or not they feel stressed. Fibromyalgia patients often don’t recognize the level of stress they are living under, or the tension in their muscles, explains Smith.
It’s important for patients to do more than just sit and listen to the information. They need to set goals. For example, instead of just planning to exercise, they should set a goal to walk two minutes a day, three times a week, says Smith.
In the Arthritis Foundation’s course, the participants agree to make specific changes in their lives based on the information they have learned in the lesson.
"Each week, participants share how difficult it was to make the change and whether or not they succeeded. The group interaction is important," says Karen Downey, RN, Arthritis Foundation Fibromyalgia Self-Help Course leader and trainer. Participants help each other. For example, if one person didn’t succeed, the other group members can offer suggestions based on what has worked for them, she explains.