ORLANDO SENTINEL ARTICLE

Discussion in 'Fibromyalgia Main Forum' started by namow, Aug 6, 2003.

  1. namow

    namow New Member

    I tought you would like to read this article:

    Janie Beitle had the first inkling something was badly wrong five years ago. When she would get up from watching TV or sitting at a computer, she'd be so stiff she could barely walk.

    "I was approaching 50," she says, "so at first I wrote it off to getting older.

    Then other symptoms appeared. Even though she was always tired, she couldn't sleep at night. She became depressed and anxious. The worst was the dull, aching pain through her neck and lower back. It was almost like having the flu except that it didn't go away. The soles of her feet burned.

    "Imagine someone wrapped you in a scatter rug and threw you downstairs," she says. "You hurt but you don't have any bruises. That's what it's like."

    Some sufferers have gone for years without being correctly diagnosed, but in 1999, Beitle found a rheumatologist who told her she wasn't crazy and she wasn't imagining things. She has fibromyalgia, a chronic disorder with vague but painful symptoms -- so vague that for years the medical community wasn't sure it existed.

    Patients were considered hypochondriacs, or their misery was judged to have psychiatric causes. By the late '80s, though, the sheer number of cases convinced many doctors that the confusing syndrome was a medical condition. (Some have continued to be skeptical.)

    "You are always anxious," says Beitle. "Part of it is the pain, but part of it is that people won't believe you. When I could finally put a name on it, I felt like celebrating."

    It can be controlled

    There is no cure for fibromyalgia, but those who suffer from it -- 6 million people or more, according to some estimates -- can control the disorder.

    There are no laboratory tests to diagnose fibromyalgia and no obvious causes for the pain, such as injuries or inflamed joints. But because new technology such as brain imaging has successfully traced the nerve pathways responsible for the pain, companies are starting to develop drugs that can more effectively treat the disorder. One new one in particular, milnacipran, holds promise. In clinical trials, it reduced pain, improved well-being and helped with other symptoms without the negative side effects of older antidepressants.

    Doctors now think fibromyalgia is probably caused by an abnormality in the way the spinal cord or brain processes information about pain.

    "It's as if the 'volume control' is set too high in the pain-processing areas of the nervous system," says Dr. Daniel Clauw, a rheumatologist at the University of Michigan and a lead author of a study published last year in the journal Arthritis & Rheumatism.

    The research showed that fibromyalgia pain isn't imaginary. A small amount of pressure was applied to the hands of sufferers, who felt it as severe pain. It took twice as much pressure for the control group of people without the disease to think it was painful. Magnetic resonance imaging revealed that both groups had the same amount of "brain activations" in the same areas.

    That is, the brain scan showed that they both experienced the same intensity of pain.

    Affects women more

    Fibromyalgia is a syndrome with a constellation of related illnesses such as irritable bowel syndrome and migraines, which makes it confusing and sometimes even unbelievable to family and friends. The disorder can be, but isn't always, triggered by a trauma such as a car crash or surgery. Patients may have other autoimmune diseases. They are seven times more likely to be women than men, and there seems to be a genetic component.

    "When a woman with a certain lifestyle comes in with chronic diffuse pain and fatigue, I begin to think of the syndrome," says Andrea Marx, a rheumatologist at Greater Baltimore Medical Center in Towson.

    These women often have high-stress jobs or are workaholics. Beitle is on unpaid medical leave from her job as a senior communications specialist. She has had to learn to slow down drastically. In the morning, she meditates for 20 minutes or takes a short nap. She takes a longer nap in the afternoon. She has learned to take it easy on her bad days, and not to do more than usual when she's feeling good.

    "The biggest help," she says, "is to learn that when your body says 'slow down,' you have to."

    The anxiety, depression and sleeplessness of fibromyalgia are often treated with drugs. In many cases they should be, because all three conditions lower the patient's pain threshold -- not a good thing for someone who already is abnormally sensitive to pain.

    Sufferers sometimes turn to holistic medicine when traditional drugs don't help. Beitle has used antidepressants and sleeping aids, but she has also tried alternative remedies such as acupuncture and sacro-cranial massage. The most important therapy, though, and the most difficult one, could be to get more exercise.

    Gentle exercise helpful

    "It's a paradox," Beitle says. "You need to walk and you need to move, but it hurts so bad."

    She compromises by exercising for 10 minutes three times a day. Yoga was too strenuous, she says, so she practices the gentle movements of tai chi.

    Studies show that patients who exercise report less pain and fatigue. Their energy level goes up. Psychologist Kevin Fontaine, who's in the rheumatology department of Johns Hopkins Medical Institutions, has applied for a grant to study whether fibromyalgia patients can benefit from increasing their activity throughout the day as opposed to setting aside a time to exercise, because it is so difficult for them.

    The American College of Rheumatology also recommends symptomatic treatments such as heat, massage, stretching, physical therapy and muscle relaxants. Occasionally, local anesthetics or cortisone injections are used at particularly painful spots, but this is controversial.

    The fibromyalgia patients who do best, Fontaine has found, are the ones who have a positive attitude -- who focus on wellness rather than illness. That's not easy because, as he says, "the hallmark of the disease is that you just feel lousy."

    Elizabeth Large is a reporter for The (Baltimore) Sun, a Tribune Publishing newspaper.

  2. Mikie

    Mikie Moderator

    It is always important for us to be able to see that there is coverage in the media about our illnesses. It takes time, but it will eventually raise awareness across the board.

    I am also happy to see that those who do best are those who keep a positive attitude. I have always believed this is as important a part of our healing as other treatments.

    Love, Mikie