Helping Patients Manage Fibromyalgia
With a proper exercise program and patient education, therapists can help people with FMS manage their symptoms
By Mike Le Postollec
'The muscle aches were so bad that just holding a cup of coffee was painful for me," recalled Penney Cowan, executive director of the American Chronic Pain Association, Rocklin, CA, of her early symptoms of fibromyalgia syndrome (FMS). During the years that Cowan's FMS went untreated, chronic muscle aches and pains, and debilitating fatigue had greatly hampered her function and restricted her day-to-day activities.
Cowan found most doctors she consulted to be unhelpful and uninformed about her condition. "Every time there was something that I wanted to do that hurt, my doctor's advice was, 'Just don't do that.' You can imagine that after years of pain, there were a lot of things I couldn't do anymore, like just reading a book," she explained. "I would just sit there like a zombie, and the worst thing that anyone with FMS can do is just sit there."
Despite the debilitating effects of FMS, it is only recently that the second most commonly diagnosed musculoskeletal disorder--after osteoarthritis--was recognized as a serious health concern. FMS affects 3.5 percent of American women and 0.5 percent of men, and it costs the U.S. economy more than $10 billion annually (Arthritis Rheum, 1995; 38(1): 19-28).
Traditionally, health professionals quickly disregarded the condition, explained Cowan. "When I first began seeking help 22 to 23 years ago, FMS wasn't very widely known or respected. There is a great stigma with chronic pain in general, and particularly with FMS because there were no absolute [diagnostic] tests they can run and say, 'Yes, this is it,'" she said. "We have come a really long way since then."
Today, there are many more opportunities for medical assistance and emotional support available to people with fibromyalgia. In 1987, the American Medical Association recognized the syndrome as an illness and a major cause of disability (laying to rest the idea that FMS was a psychological phenomena), and the American College of Rheumatology has recently added to the increased awareness of FMS by publishing criteria for the diagnosis of the disorder.
Moreover, patients have discovered that a regimen of exercise and physical therapy can help alleviate much of the pain associated with FMS, and can increase their function and help them achieve a greater quality of life.
Fibromyalgia syndrome is a noninflammatory, diffuse pain syndrome of unknown cause, with the most common symptoms of debilitating fatigue and severe muscle pain. Other symptoms include disturbances in sleep patterns, irritable bowel syndrome, cognitive difficulties such as short-term memory loss, depression, headaches and a generally deconditioned state. Although, it should be noted that it is unknown whether these symptoms are part of the syndrome or the result of FMS's primary symptoms. The syndrome also bears a strong similarity to chronic fatigue syndrome (CFS); up to 70 percent of patients with FMS meet the criteria for CFS, and up to 70 percent of those with CFS-like illnesses have concurrent FMS (Buchwald, D. Rheum Dis. Clin. North Am., 1996; 22(2): 219-243).
According to a 1990 report by the American College of Rheumatology, patients must meet two criteria before a diagnosis of FMS can be made: a widespread pain both above and below the waist present for at least three months, and the patient must verbally declare the existence of pain when light pressure is applied to 11 of 18 common FMS tender points on the body (see Figure).
Many therapists feel that people with FMS weren't taken seriously before this diagnostic criteria was published, and point to the publication as a turning point in fibromyalgia awareness and treatment. "As people become more aware and believe that there is a diagnosis called fibromyalgia, the syndrome is being pinpointed and treated earlier," said Terri Glenn, PhD, PT, former professor in the physical therapy department at Ohio State University.
Dr. Glenn said that the ambiguous nature of the disorder had contributed to the ignorance surrounding FMS. "I think the problem was a lack of education in terms of a differential diagnosis, and the confounding problem for people with fibromyalgia is that they tend to be difficult from a clinical perspective since their symptoms are sometimes difficult to measure in concrete terms," Dr. Glenn explained. "Oftentimes, health care professionals would consider them lazy or lacking a pain threshold, medically dependent or just looking for an excuse to go to the doctor. But as things have evolved and awareness has grown, I've noticed that there's been less of that attitude."
Physical Therapy and FMS
Since those "dark ages" of FMS, physical therapy intervention has become an important part of the treatment of the syndrome. A main component of PT treatment is to help the patient begin a regimen of light aerobic activity to help improve physical condition, assist with pain management and provide relaxation.
Darice Putterman, PT, CAAAPM, CTIACA, board certified in pain management and owner of Valley Therapy Services in Scottsdale, AZ, said that the key to an effective exercise program for patients with FMS is to begin with very light exercise and gradually introduce more activity into therapy. However, she emphasized, it's important to accurately detect where the tender/trigger points are with surface electromyography because "a muscle with trigger points should never be exercised" without treatment first. Once sEMG identifies the trigger points for her, Putterman mentioned using soft tissue mobilization techniques to treat the area. Then, she'll proceed with exercise.
Since many patients with FMS are in a deconditioned state and have not exercised regularly due to the muscle pain, it is important for exercise to be gradual and safe, Putterman noted. "[The exercise] should be some activity that doesn't have a high impact component because it is important to avoid injuries that might exacerbate the syndrome."
She continued, "In a six- to 12-month period, I will help the patient slowly begin to establish a home exercise program, which would include only a limited component of aerobic exercise for 10 to 15 minutes, three times a week."
Dr. Glenn agreed that helping the patient manage pain through light exercise is crucial to an effective FMS treatment. Dr. Glenn said that while she will assist the patient through particularly painful periods by treating the FMS trigger points with heat, cold or massage, she maintained that "the key is to teach these patients long-term pain management through exercise, which could include something as simple as walking for five to 10 minutes a day and then gradually increasing the level of activity."
Working Through Pain
The difficulty in developing exercise programs for patients with FMS is that the syndrome also causes severe stiffness in the muscles and joints, which can make even minimal physical activity painful. Many patients with FMS who begin an exercise program have noted that joint pain will usually get much worse before it improves from exercise. For this reason, Nancy Kysela, PT, director of Physical Therapy Dimensions in Fairfax, VA, recommended working on stretching and improving the patient's range of motion before any exercise regimen begins. "You have to be really careful using exercise with [patients with FMS], and I think it's important for the patient to regain at least 75 percent of their range of motion first," Kysela said. "If the patient doesn't have this range of motion, those muscles won't be working at their best."
To help improve the range of motion and as a form of light exercise, Kysela recommended yoga for the patient. "I've found yoga to be very therapeutic for these patients," she said. "It provides some strengthening stances, it's relaxing, and patients seem to enjoy it."
Cowan can attest to both the benefits of exercise for people with FMS, and also the pain that exercise can initially cause. When she began a light exercise program to assist in pain management, Cowan said that the activity greatly worsened her symptoms for a period of time. "We did a lot of stretching and some very light weight-lifting, and about two days into the program, I could hardly move because all my muscles were in such pain, but I think that is the critical point for people, and they have to realize that it will get worse before it gets better," she said. "About four weeks into the pain program, I was walking down to the sports medicine clinic, and after the stretching exercises, I actually felt better than before. That was such an astounding thing for me to discover--that exercise can make me feel better."
Patients Help Themselves
Although exercise and therapy treatment can help patients manage FMS symptoms, therapists stress that there is no cure for fibromyalgia. It is for this reason that the goal of any exercise or pain management program for patients with FMS is for patients to maintain the program on their own, and only seek medical assistance when symptoms become aggravated. Dr. Glenn said that therapists should foster patient independence, and be careful not to make patients reliant on their help. "My preference is not to see [patients with FMS] over and over. Therapists can't cure the syndrome, so patients are better off learning how to control the symptoms on their own, and therapists should teach patients how to do that," she said.
"FMS is a long-term situation, and the prognosis is that if you have it, you are going to have it for life. But that does not mean that patients can't learn how to minimize the symptoms."
Kysela agreed that the focus of physical therapy treatment should be patient education of pain management techniques. "I think that the goal of FMS treatment is to have the patient become more independent," she said. "I generally won't conduct treatment on an ongoing basis, unless there is some other circumstance, like a flare-up in symptoms. We try to just get the patient back on track, and help them to get their pain under control."
And Cowan echoed that, based on her experience with the condition, it is up to patients to take charge of their condition and work toward alleviating its symptoms. "People with FMS need to know that it is possible to regain a near normal level of functioning, but they have to be part of the treatment plan, it is their responsibility," she said. "And physical therapists have to stress to these people that what they do will not miraculously take away the pain. The patients have to
be the ones to help themselves."
* For information on FMS and related support groups, contact the American Chronic Pain Association at P.O. Box 850, Rocklin, CA 95677; (916) 632-0922.
Mike Le Postollec is on staff at ADVANCE.