Living with fibromyalgia: One woman's story
August 3, 1999
Web posted at: 11:19 AM EDT (1519 GMT)
By Ann Marie Brauner
|SYMPTOMS OF FMS|
| "trigger points" that are extremely painful when pressed|
| nonrestorative sleep|
| widespread pain|
| flulike symptoms|
| impaired concentration|
(WebMD) -- One day, shortly after the birth of her second baby, Nancy,* then 39, collapsed into a chair in her home. It wasn't quite noon, yet she was already exhausted. She had been noticing that she didn't have as much energy with her second child as she had had with her first. Today was no different than the days before: Her muscles ached and she wasn't sleeping well.
Nancy would eventually learn the reason for her pain and lack of energy: fibromyalgia syndrome, or FMS.
A muscular condition that affects mostly women
"FMS is a chronic muscular condition that causes widespread pain in multiple tender points at the juncture between muscles and tendons," says Dr. Andre Barkhuizen, assistant professor of rheumatology at Oregon Health Sciences University. "In FMS patients, the central nervous system perceives as pain what most people think of as pressure."
The American College of Rheumatology estimates that fibromyalgia affects 3 to 6 million Americans (about 2 percent of the U.S. population). The patients are predominantly women; a 1995 study published in the journal Arthritis and Rheumatism found that women are seven times more likely to develop fibromyalgia than men. Barkhuizen says perhaps 10 percent to 20 percent of FMS sufferers have cases as severe as Nancy's.
Getting a diagnosis
Nancy's condition progressed from mild aches and general tiredness to the point where she had trouble walking from room to room. "It was December of 1989," recalls Nancy, now 49. "I tried to stand up and felt excruciating pain in my arms, legs and neck. I couldn't even make it out of the room."
Nancy visited her internist, who referred her to a specialist in rheumatoid arthritis. "The doctor reviewed my x-rays and did an 18-point trigger test, which is one of the ways they diagnose fibromyalgia. I had soreness in all 18 trigger points. He then made the diagnosis of FMS."
Nancy was lucky to have her condition diagnosed. Many of the women she has encountered in online FMS support groups have not met with the same quality of care as she has. "Many are told it's all psychological," she says. "Because the symptoms are invisible, people assume it's all in their minds. They look fine on the outside, so what could be wrong?" Not all physicians are convinced of the existence of the disorder.
"Individuals who believe they may be suffering from FMS symptoms should be seen by a physician who believes in the syndrome," Barkhuizen says. Nancy agrees. She suggests that sufferers contact a qualified rheumatologist for advice and treatment.
Treatment plans vary
Taking medication by itself does little to ease the symptoms. Nancy takes a prescription-strength painkiller and uses a small muscle stimulation unit, Transcutaneous Electrical Nerve Stimulation (TENS), to aid in pain management. TENS, used for many types of chronic pain, sends electrical impulses to nerves and helps block the transmission of pain signals to the brain. It also increases the production of endorphins, the body's natural painkillers.
Physical exercise is one therapeutic approach to FMS. For patients with symptoms less severe than Nancy's, light exercise can help to loosen painful joints and improve flexibility. For more severe cases where physical activity is painful, doctors recommend light stretching or hydrotherapy. Nancy regularly sits in a hot tub with airjets, which helps relax her muscles and provides temporary pain relief.
To combat "fibrofog," the name inner circles give to such FMS symptoms as short-term memory loss and the inability to concentrate, Nancy does puzzles and writes in a journal. "FMS impairs your sense of thinking," she says. "I push myself to do things that will stimulate me mentally."
Nancy also takes a mild antidepressant to help her sleep more deeply. Most FMS patients are notoriously poor sleepers and some doctors think fibromyalgia symptoms are linked to abnormalities in deep sleep.
Shrouded in mystery
"No one single thing has been proven to be the cause of FMS," says Barkhuizen. "A variety of circumstances may cause an individual with predisposed pain to develop FMS." These factors include a previous injury that never quite healed, a lack of REM sleep, abnormalities in the spinal cord or even a tendency toward depression.
Although fibromyalgia is chronic, the symptoms may cycle through various stages of severity. Nancy says she slips in and out of "remission" often.
"Today is a good day," she says, "but I never know what will happen next. At any given moment, I might experience pain that impairs me to the point of debilitation. I just have to take each day as it comes."
*This woman's name has been changed in order to protect her privacy.
Copyright 1999 by WebMD, Inc. All rights reserved.
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