FIBROMYALGIA:

CRUEL AND UNUSUAL

BY: BARBARA EDIE

"It's a lot like having the flu- all the time." That's how Julie Maloney describes fibromyalgia, the general achiness and fatigue she has experienced since the illness's onset 13 years ago. " I have very little energy for someone my age," adds Maloney, 42. "I can't work full time, I can't ski anymore and if I do too much it takes days to recover."

People with fibromyalgia hurt all over. It's a condition of wide-spread, musculo-skeletal pain that affects between 5 and 10 percent of the population. Women are eight to ten times more likely than men to have fibromyalgia, and though it usually strikes between age 20 and 55, children and older adults may also be affected.

Two main criteria confirm a diagnosis of fibromyalgia: diffuse pain and aching for at least three months, and a number of tender points (11 out of 18) found in precise locations on the body in a pattern unique to fibromyalgia. Pain usually affects the arms, legs, back, chest , hands, feet and often the jaw. Sleep disturbances and unrelenting fatigue are the pain's usual companions.

Seventy-five percent of fibromyalgia patients have sleep disturbances, said Dr. Elzbieta Kaminska, a rheumatologist, at the Atlantic Regional Conference on Fibromyalgia in August. Abnormal sleep patterns consist of constant interruptions of the deep, slow-wave sleep needed to rest and restore the body. People with fibromyalgia often awaken feeling exhausted.

The search to explain or confirm fibromyalgia's cause can be equally exhausting. In some cases there is no known precipitating factor. Other patients can identify a triggering event such as viral illness, physical or emotional trauma. However, all usual laboratory tests on blood and urine are within normal range; X-rays and magnetic resonance imaging reveal nothing more. Fibromyalgia causes no detectable damage to body tissues or organs, but often accompanies immune system diseases such as rheumatoid arthritis and lupus.

What is known? Fibromyalgia affects the immune system and changes the balance of neurotransmitters, the body's chemical messengers; it affects sleep and leads to inactivity and unconditioned muscles.

Research suggests a hereditory predisposition to a hyperactive sympathetic nervous system. Fibromyalgia has been called the "irritable everything" syndrome. Associated conditions include irritable bowel syndrome, allergies and sensitivity to environmental factors that others barely notice - bright light, noise, cold temperatures or perfume. Cigarette smoke, in particular, may send someone with fibromyalgia spinning.

Studies have also found a high level of substance P, a pain transmitter, and low levels of seratonin, a neurotransmitter that moderates pain, in people with fibromyalgia. When seratonin is low, substance P has an amplified effect on pain.

Low doses of tricyclic antidepressants increase seratonin levels and may help moderate pain in fibromyalgia patients, says rheumatologist Dr. Jaimie Henderson, medical director of the Fredericton Medical Clinic.

But for people with fibromyalgia, even small doses of drugs can have profound side effects. "I couldn't function", says Maloney. "Even low doses of antidepressants just knocked me out."

" Drug therapy in fibromyalgia is largely experimental," says pharmacist Ivan Ho. Analgesics such as acetaminophen with codeine may be helpful in treating acute pain, but non-steroidal anti-inflammatory drugs are often ineffective because fibromyalgia is not an inflammatory disease. Some have tried drug combinations, for example, an analgesic or antidepressant plus a sedative to aid sleep. While there are benefits, medications should be used as a last resort, says Ho. He recommends drug therapy only in addition to supportive and non-drug treatment such as relaxation techniques, physiotherapy and massage.

"Treatment focuses on functioning rather than on pain," adds Henderson. He is a strong advocate of regular, cardiovascular exercise and says patients who go into remission (about 20%) are often those who are doing some sort of physical training.

"The difficulty is that it hurts," Henderson explains. When it hurts to move, bodies become inactive and muscles become shorter and weaker; weak muscles tense easily and add to the pain. While exercise intensifies fibromyalgia pain in the short-term, in the long run it strengthens muscles, stimulates the release of endorphins and reduces pain.

Dr. Glenn McCain, director of the Fibromyalgia Treatment Program at the Pain Therapy Center in Charlotte N.C., has researched the effect of cardiovascular training in fibromyalgia. In a 1988 study of 42 people with fibromyalgia, those who did cardiovascular exercise 30 minutes three times a week for 20 weeks, reported significantly less pain and an improved pain threshold of tender points than the control group who did only flexibility exercises.

About 80 percent of fibromyalgia patients are unfit. "The average (fitness level) is well below the norm," McCain says. "They are inactive."

Regular exercise can reduce pain but fibromyalgia patients need to go slower, McCain explains. While most will see improvement before 20 weeks, that's the amount of time required to really assess the benefits. Supervision from a family physician or rheumatologist to get through the initial stages, when exercise intensifies pain, is integral, adds McCain: "That's the cadillac."

Fibromyalgia patients must find and stay with an exercise program appropriate for them, says physiotherapist Fiona Graham, who works with a group at the Ottawa Civic Hospital. Exercise that doesn't place a lot of pressure on joints and helps muscles stretch is best. That may include aquatherapy, walking, Tai Chi, Yoga or cycling.

Maloney has been doing Tai Chi for four years and started with an Ottawa group tailored specifically to the needs of people with fibromyalgia. She also attends a weekly pool program, 45 minutes of gentle exercise in warm water followed by a soak in the whirlpool. But she finds the most comfort in her monthly therapeutic massage. "It's heavenly."

As with any exercise program, pacing is the key. " The usual limit is five to eight minutes a day, most of us can't do 20 minutes of cardiovascular exercise," says Maloney. "People find they get too sore and then stop."

A physical assessment by a physiotherapist, information on neck and back care and using effective body mechanics can also help fibromyalgia patients ease muscle pain and reduce stress on joints.

Drugs, exercise and physiotherapy aside, people with fibromyalgia may also find solace in relaxation therapy, hypnosis, meditation, acupuncture, ultrasound, laser therapy or orthopedic supports such as cervical pillows, OBUS forms or special shoes. Maloney finds respite for her aching body in her waterbed. "It helps me sleep and doesn't stress the pressure points."

Yet given all the supportive therapy in the world, it's the cognitive changes that people with fibromyalgia often find the most difficult to handle. The inability to concentrate, think clearly or remember things sometimes goes beyond frustrating and borders on frightening.

You think you are losing your mind, says Maloney. "Sometimes I wonder what's happening to my brain cells," the part-time freelance radio broadcaster adds. "I'll be broadcasting and the words just don't come."

Research by Dr. Byron Hyde of Ottawa has found some abnormalities in the brain tissue of people with Chronic Fatigue Syndrome (Myalgic Encephalomyelitis) who often suffer from fibromyalgia that may explain the cognitive changes.

Coping with Fibromyalgia, a publication recommended by many fibromyalgic associations, explores the differences between these two closely-related disorders. Author Beth Ediger says patients with Chronic Fatigue Syndrome (CFS) have the same sleep disorders, pattern of tender points, and often suffer the same diffuse pain as fibromyalgia patients. Many fibromyalgia patients also report sore throats, tender lymph nodes, and low-grade infections that are the hall-marks of CFS.

Ediger says researchers are trying to determine whether fibromyalgia and CFS are two strains of the same disorder, or just "kissing cousins." The main difference is that "CFS patients have greater fatigue, while FM patients report more pain. CFS patients are also more likely to have fever, swollen glands, blood study abnormalities, and evidence of infection. Nevertheless, the overlap of symptoms in individual cases can be so great that it is difficult to know which label to apply."

Bev Spencer, author of Fibromyalgia: Fighting Back, offers suggestions to manage memory lapses; schedule rest and manage fatigue, which can reduce mental performance; change the time or dosage of medications that may add to fatigue, mental fog or memory loss; concentrate on one thing at a time and avoid distractions; perform demanding mental work at the time when you are most alert; and handle pain, emotional or physical, in the best way you can. Pain can drain anyone's ability to think.

Fatigue can be as serious and as debilitating as pain, and setting priorities, planning activities and pencilling in rest periods, is sound advice. However, people with fibromyalgia are characteristically driven, hard-working personalities who tend to be perfectionists. They often find it difficult to accept the imposed limitations.

Fibromyalgia disrupts more than a lifestyle - it can step on dreams. Sparing the energy required just to live may mean goals, expectations, and secret desires are never to be realized.

Fibromyalgia will not kill you. It will not put you in a wheelchair. But it will not go away.

Maloney sums it up: "It adds stress to everything you do."