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Coping with fibromyalgia

Mysterious disease threatens its victims with diminished quality of life.

By Judy Buchenot
SUN CORRESPONDENT

When the barometric pressure drops, Denise Rambert said it feels like "someone is tearing the muscles off my bones." When she goes upstairs at her home for a forgotten item, she is often too worn out to make it back down the stairs. Denise, who was once a barber, can't lift her arms high enough anymore to cut hair. And sometimes, she knows what she wants to say to others but the words just won't come to her.

Deb Keil wakes up many mornings feeling like she has a combination of flu and hangover, as though she had been run over by a semi. The mixture of pain and fatigue is overwhelming. She has short-term memory loss and seldom gets a good night's sleep.

The two women are among the many people afflicted with fibromyalgia, a neurotransmitter condition that causes fatigue and increased pain.

"It's sometimes called the syndrome of the superwomen," said Keil, who is director of the Fibromyalgia Reference and Resource Center. "It seems to frequently affect Type A women -- those who are very active and doing it all. About 90 percent of those who are diagnosed are women."

The causes of this syndrome are not clear. "A lot depends on who you are talking to," Keil said. "Some people say our serotonin levels are off which affects our sleep. When there is no deep sleep, the body can't repair itself so you wake up tired. Others say that our substance P -- the thing that tells us about pain -- is too high so we feel every little thing. Some say our growth hormone is off. There is such a wide range of possible causes. It is has something to do with the biochemistry of our bodies."

The quest to understand the origins of fibromyalgia and other similar conditions prompted an effort to educate the public.

"There are several similar conditions that are included with FMS or Fibromyalgia Syndrome. There is CFS or Chronic Fatigue Syndrome, MCS or Multiple Chemical Sensitivity and GWS or Gulf War Syndrome," said Keil. "Not enough is known about them, but they are very real."

COPING METHODS Since there is such limited information about fibromyalgia, those who are dealing with it find comfort in sharing their coping methods during support group sessions. One of the most difficult parts of the syndrome is acceptance by both the individuals and their families.

"It is very frustrating because I just can't do the things I could do before," Rambert said. "Some days I just sit down and cry over the loss of my health. So many people continue to tell me that it is all in my mind -- everyone from family to doctors deny that we are sick because we look great, but we don't feel great. I need people to stop telling me I can do it if I just try. I can't do it no matter how I try."

"There is a real grieving process with this all," Keil said. "We are no longer the people we once were and that is hard to accept. How do you explain to a youngster that you just can't go to his band concert? How do you explain to your spouse that you are too tired to clean the house and fix meals? We help each other work through these issues. A lot of the problems result from the fact that we look like we should be able to do things, but we really and truly can't do them."

Once a person accepts the presence of fibromyalgia, the group gets busy helping to minimize its effects. Different things work for different people, but each idea is worth sharing.

Sleep: One of the important issues is getting enough sleep. "If you can get into a deep sleep, it breaks the cycle," said Keil. "We are all looking for ways to get sleep. Warm baths works for some. Some use aroma therapy. One person in the group said she takes a warm bath and crawls into bed without ever turning on the lights. Flannel sheets help because a cold bed can trigger muscle spasms."

Mild exercise: This seems to help slow the progression of symptoms, but Keil warned, "it is such a fine line between the right amount of exercise and too much exercise." Swimming in a pool with warm water has helped many feel relief, she added. The important issue is to increase the exercise level very gradually to avoid triggering a flare-up of the condition.

Massage: One of the indicators of fibromyalgia is the presence of 18 or more tender points on the body. Even a light touch to one of these sensitive areas can send pain shooting through the body. "Some doctors believe it a build up of lactic acid. Massage seems to help with these areas. A massage therapist can release the buildup and work out the tender spot. It hurts initially but helps later," Keil said.

Other aids: Rambert said that some people in the group have tried homeopathic remedies with some positive results while others rely on prescription medicines for relief. Several group members have successfully used acupuncture. Rambert will soon be undergoing hypnosis to help her relax and hopefully to sleep more soundly.

Some group members still work and share their methods of making it through the day. "If a person has to be on and off the phone all day, a headset is a good way to help with neck and shoulder pain. Ergonomically correct office furniture helps with pain, also. Sitting for hours at a stretch isn't a good idea; moving around periodically helps relieve the stiffness. Using a lot of Post-it notes helps with the brain fog we experience," Keil said.

Another important role of the support group is to help alleviate isolation issues.

"When it is too painful to go out, you stay in and become more isolated," explained Keil. "We have a phone tree and try to call each other. It helps to be able to talk to someone who will listen. Most of us have been there and done that with this (fibromyalgia) but it helps to say it."

Keil encourages group members to keep journals. "Different things affect different people," she explained. "If you keep a journal of the weather changes and food eaten and other events, sometimes you will see a pattern. This information helps you figure out what to do and what not to do. You are your own best doctor. This isn't a life-threatening disease. It just threatens the quality of life."