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Sufferer works to shed light on fibromyalgia | Pain, depression, fatigue mark illness that can be debilitating


BY: Karen Garloch/Charlotte Observer/Charlotte, North Carolina
18-Jan-1998 Sunday


CHARLOTTE, N.C. -- For seven years, Donna Leatherman Cooke could barely find anyone who believed she was really ill.

But today, people all over the world are telling her they know exactly how she feels. After suffering muscle pain, fatigue and frequent migraines since 1983, Cooke was finally diagnosed with fibromyalgia in 1990.

As a way of helping herself and others, she created her own Internet site last year, with a long list of questions for people who share her symptoms.

Since March, more than 650 people from every state and five other countries have responded, sometimes writing lengthy stories about their suffering.

A woman from Alabama wrote the worst thing about fibromyalgia is "never knowing how I will feel from one day to the next. Not being able to commit to anything, not wanting to deal with daily life hassles and the inability to take action on simple things."

"I am so tired and exhausted all the time," a Georgia man wrote. "I have headaches for days on end. Some so painful I want to kill myself rather than face another day of pain."

The response has overwhelmed Cooke, who plans to compile the responses, "and maybe find some commonalities," into a book.

"I never dreamed it would get this big," she said, pulling out file drawers crammed with folders of completed questionnaires.

She summons the energy to work at her computer despite constant pain in her legs, fatigue, irritable bowel syndrome, headaches and difficulty concentrating. Her work station and file cabinets line one wall of the small south Charlotte bedroom where she spends most of her time. She has typed about 50 responses into a database so far. When she gets them all in, she hopes to sort for trends.

It's not scientific, but it's Cooke's way of dealing with her illness and helping others to avoid her long, often humiliating search for a diagnosis. Cooke said she was treated by 20 doctors -- some who told her it was "all in your head" -- before seeing Dr. John Capps in Gastonia, N.C., who realized what she had.

"A lot of these doctors are ashamed to tell you they don't know what's wrong," said Cooke, who uses a pen name, Donna Heart, on the Internet.

Chronic muscle pain - Fibromyalgia is a common disorder involving chronic muscle pain (either a deep ache or a burning sensation) and fatigue.

Its cause is unknown, and there is no cure. The syndrome has been recognized since the late 1800s, when it was called fibrositis, said Dr. Daniel Hamaty, who is partially retired from his Charlotte rheumatology practice.

In 1990, the name fibromyalgia was endorsed by the American College of Rheumatology. Estimates are that 3 million to 5 million Americans have the syndrome. It is the second most common disorder seen by rheumatologists, next to rheumatoid arthritis. Women are 10 times more likely to have it than men.

Still, like Cooke, many fibromyalgia patients complain it takes years to get a diagnosis. This is because no evidence appears on X-rays or in laboratory tests. People with fibromyalgia often look healthy. Some doctors may conclude patients have psychological problems.

"I was appalled that most physicians generally tended to regard the patients as psychosomatic," said Dr. Glenn McCain, a Charlotte rheumatologist, about his experiences in medical training. "My interest in fibromyalgia developed as my rebellion against this view, 20 years ago, that these patients weren't really deserving of treatment." Research has led more doctors to accept fibromyalgia, McCain said. One of the most important findings was all fibromyalgia patients register pain at predictable "tender points" when doctors apply pressure with a finger. There are 18 such points for doctors to test, spots where healthy people wouldn't feel pain if touched. Various triggers - Skeptics suggest many people feel tenderness on those spots and its measurement is subjective, but McCain said a doctor can determine tenderness with the same reliability as blood pressure if the exam is done properly. Many researchers believe fibromyalgia is an abnormality in the way the body handles pain. "When pain stops, that's not a passive event," McCain said. "The body turns off the pain." In fibromyalgia patients, pain stimuli come in normally, but the brain doesn't turn off the pain with its usual effectiveness. Some researchers believe that injury, physical or emotional trauma or even an infection, such as a flu virus, may trigger fibromyalgia. Some believe it is related to a lack of growth hormone, produced at night by the pituitary gland and used to repair muscles. Without such repair, muscles are sore, the theory goes. Treatment for fibromyalgia involves symptom relief. "Medicine is much more than finding a cure," McCain said. "Most patients you can help by simply being understanding, practicing your craft and providing care." Patients with the same levels of pain cope with it differently. Some get by with anti-inflammatory drugs and low-dose antidepressants to relieve pain, promote sleep and reduce depression. Others may not be able to work, become depressed, have difficulty in relationships and turn to narcotics for pain relief because milder drugs don't work. Those patients need a pain management program, said McCain, who refers patients to the Presbyterian-Orthopedic Center for Pain Medicine. There, in addition to getting pain medicines, patients work on exercise programs and learn how to live with the pain better. "Some people make mountains out of molehills, cross bridges before they come to them," McCain said. "They need to get rid of negative coping. Some who need less intensive help have found it through Arthritis Patient Services, a United Way agency that started offering fibromyalgia support services three years ago."

"We began to get more calls about fibromyalgia than about rheumatoid arthritis," said Cindy Berrier, a nurse who teaches a fibromyalgia "coping" course that emphasizes exercise and relaxation. "By trying to do something for fibromyalgia patients, we were validating that we recognize you have a pain problem. Some people seem to just get a little better (emotionally) once they're told, yeah, they've got fibromyalgia."

Search began in 1983

That was true for Donna Cooke, who starting searching for a diagnosis in 1983 when her migraines became more frequent and she began having constant burning sensations in her legs. "I knew things had changed in my body. I lived day to day, the best I could do," said Cooke, 38. Until then, she'd liked to party and loved her various jobs as a bank teller and administrative assistant. It was unusual when she stopped wanting to go to work. "I didn't have any energy," she said. At times, "I literally thought I was dying." She switched doctors many times. One told her to see a psychiatrist. Others ruled out bone cancer and lupus. Finally, in May 1990, she was referred to Capps, who examined her several times, always pressing spots on her wrists, elbows, shoulders, neck and legs. "Every place he would press would set me on fire," Cooke said. Knowing that she had fibromyalgia was a comfort. "It made me realize I was really, truly having a problem. It wasn't just a psychological thing," she said.

Cooke started thinking about a book in 1996 after hearing Dr. Jack Kevorkian had assisted in the suicide of someone with fibromyalgia. "When I saw that on the news, it hit me hard," Cooke said. "I started crying." She wanted to help people feel less desperate, to let them know there is help.

In survey answers, she quickly noticed common themes of depression and despair. So she started special "Fibro-Haze Humor Pages" with stories about life with fibromyalgia.

One man from Kansas City wrote that his pain began in his feet and one doctor prescribed new shoes. When the pain kept spreading, another doctor diagnosed his problem correctly. "But I now laugh when I think about the new shoes."

And a man from Seattle wrote that when he recently met another person with fibromyalgia, he greeted him by saying, "Gee, you don't look sick."

"That's not funny to everyone," Cooke said, "but it is to people with fibromyalgia because that's what we hear all the time -- `Gee, you don't look sick. You look healthy to me.' "

Cooke copes by taking pain relievers, swimming and walking. Keeping up with survey responses is trying, since she often has sleepless nights and days when she can't get out of bed. "But I can't quit, and I won't quit," she said.

"What I want to tell the world is that fibromyalgia exists and respectable people have it. It's not something we have created."

The symptoms, the solutions - Here's some basic information about fibromyalgia:

Fibromyalgia (FYE-bro-mye-AL-juh) is a form of soft-tissue rheumatism marked by stiffness and pain in the muscles and tissues around the joints. Formerly called fibrositis, the syndrome has been recognized since the late 1800s. An estimated 3.7 million Americans, mostly women, have fibromyalgia, according to the National Arthritis Data Work group.

To be diagnosed with the syndrome, patients must have widespread pain in three areas of the body, on both sides of the body and above and below the waist, for at least three months. They must also have pain in 11 of 18 specific "tender points."

The following is a list of fibromyalgia's major symptoms:
Muscle pain.
Sleep disturbance.
Depression and anxiety.
Irritable bowel syndrome.
Bladder irritability.
Skin sensitivity.
Dry eyes or mouth.
Lack of concentration, forgetfulness.
Tingling or numbness in limbs.
Cramps, dizziness, abdominal pain.

Treatments include:
Medications to diminish pain and improve sleep.
Exercise to stretch muscles and improve cardiovascular fitness.
Relaxation techniques to ease tense muscles.
Education to help understand and cope.
Healthy habits such as eating well and giving up smoking.

Copyright Union-Tribune Publishing Co.
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Update since this article originally went to print in Charlotte, North Carolina -Nov. 3, 1997 -

To date, (December 2, 1998) I have received 2,200+ Survey Responses from 14 countries (Australia, Belgium, Canada, Germany, Israel, Netherlands, New Zealand, Philippines, South Africa, Spain, Sweden, Switzerland, United Kingdom, and the United States).

I did a television interview in Charlotte, North Carolina which aired October 10, 1997 on the 11:00 newscast with WCNC which is a NBC affiliate. You may have your local NBC affiliate request a feed for your city! Just phone Kara Finnstrom @ (704) 329-3636. A feed is free when requested by your local NBC affiliate!
I also arranged an interview with the teen for whom I established a Teen Page. She lives in Oregon. Her name is Crystal. The interview is great! She hosts the page! You can view her pages here...

  • Donna Heart's Fibromyalgia Home Page!

  • Teen Fibro-Page
    Please check out Crystal's homepage!! This will also lead you to a TEEN SURVEY!!

    She was interviewed on December 17 and it aired that same evening at 5:00 pm. The interview was done by Joel McDougal. He can be contacted @ (541) 779-5555 to request a free feed for the local NBC affiliate in your city!
    Since I noticed the major theme of depression, I tried to find something which would give sufferers a different way of looking at the mishaps in their lives, if only for a while. I established the Fibro-Haze Humor Pages. They are wonderfully funny. We are not laughing at each other, we are laughing WITH each other. I will list 2 links and you can find MANY other ones... You will also find the link to the Interactive Fibromyalgia Survey on the below links!!

  • Fibro-Haze Page Humor Page #1
    Do you need a good laugh?

  • More Fibro-Haze Humor Page #2
    And even more laughter...


    I have personally heard from 2 book publishers interested in publishing this information, and will keep you posted!!

    Most Sincerely,