You might go see a doctor, but if you go in and complain about knee pain, there might not be anything to find in your knee. No abnormalities would appear in an x-ray or blood test.
With no apparent cause, you might start to wonder if the pain is real. How can you be in pain all the time? Maybe you are a hypochondriac. Maybe it's in your head.
But then the pain flares and you know you're not making it up. It must be something worse. Cancer, you whisper to yourself.
When a diagnosis of Fibromyalgia is made, you are simultaneously glad to have a name to explain the pain, relieved that the condition isn't life threatening, and disappointed that there isn't a cure and you probably will have to live with the condition for the rest of your life.
Although Fibromyalgia may have existed for centuries, key signs to the condition were first identified by Canadian researchers in the 1970s. These discoveries eventually led to a diagnosis of the syndrome. Prior to that, said Dr. Allan Solum, it was a baffling condition.
The Arthritis Foundation estimates that the syndrome affects 3.7 million Americans. Locally, Allan Solum, M.D., a family physician who splits his practice between the Paynesville Area Medical Clinic and the Richmond Area Medical Clinic, estimated that he has between 12 and 15 patients with the condition.
The chronic musculoskeletal pain of the syndrome typically affects women, and generally starts between the ages of 20 and 45.
According to the Arthritis Foundation, Fibromyalgia mainly affects muscles and their attachment to the bones and is a muscular rheumatism. It is not a form of arthritis, because it does not deal with the joints. It is not believed to be life threatening.
"The cause of fibromyalgia is unknown, but speculations have centered on disturbances in rapid eye movement sleep, chronic viral infections, psychological disorders, and metabolic muscle defects," stated David B Hellman, M.D., in a chapter of "Principles of Ambulatory Medicine," edited by L. Randol Barker.
While research on fibromyalgia is ongoing, it still doesn't receive as much interest as some diseases, said Solum.
While the predominant symptom of fibromyalgia is pain, according to Hellman, other symptoms include fatigue, recurrent headaches, depression, and difficulty concentrating.
Several local sufferers of fibromyalgia shared their experiences with the condition. "Tremendous body pain. Hips. Ankles," said Paula Tebben, who was diagnosed with fibromyalgia five years ago. " It hurt so bad I couldn't put on my pants. I literally crawled across the floor one day to call the doctor."
"It's not fun," said another local woman who suffers from fibromyalgia. "It aches all the time. Nonstop."
The pain and fatigue can be particularly strong in the morning. "Oh, the morning stiffness is bad," said Carol Heitke. "It feels like you were hit by a truck. The first 15 minutes after you get out of bed it's like, 'Oh God, I'm glad it doesn't feel like this all day, or I wouldn't be able to function.'"
"You get up in the morning, and you feel like you didn't sleep," added Barb Lieser. "You feel like you've been hit by a train."
Gary Haglund, who is in the minority as a male sufferer of fibromyalgia, said he has suffered from chronic migraine headaches for a number of years. There seems to be some connection between the two conditions.
Heitke reports short-term memory lapses. She may say something and then forget it while walking back to her desk. "I'm sure some people will think that's ridiculous (and that) no one forgets that fast, but you do," she said.
A clinical diagnosis of fibromyalgia is based on the patient's history and a physical exam. The patient must have chronic pain and must have 11 of 18 tender spots. Nine tender spots are defined, in pairs, on the body, including the neck, chest, upper back, hips, elbows, and knees. "These tender spots are fairly consistent from patient to patient," explained Solum. "When you examine (a patient)...you can find a very tender spot."
Clinical tests, like x-rays and laboratory work, may rule out other conditions, but can not be used to determine fibromyalgia. In fact, Hellman recommends considering the diagnosis for a patient with a history of chronic, nonspecific pain but normal tests results.
The diagnosis can come as a relief by giving sufferers a name to their pain. Gone is fear of a life-threatening disease. "You just think of everything," said Heitke. "That's why I was so relieved (to be diagnoses with fibromyalgia) because I was thinking of all these serious things."
"Cancer," added Lieser. "That was my thing. Everything to me was a tumor." She would feel the pulse in her head and think she had a brain tumor.
"It's human nature to think the worse," said Solum.
If you think about it, fibromyalgia's most prevalent symptoms--pain and fatigue--are common in thousands of diseases. A history of pain is needed for diagnosis, requiring time. "It's not something they can draw in your blood," said one fibromyalgia patient. "It's a process of elimination."
Many of these patients were given tests, which found nothing wrong, which led them to feel stupid, like they were imagining the pain. Before the official criteria for diagnosis were established, people with fibromyalgia sometimes were labeled as hypochondriacs. Without a proper diagnosis, they still could be today.
Lieser said she was relieved to be told she had fibromyalgia "because then you know there's a reason for all of this."
"Even once you're diagnosed," she added, "You really can't believe it can be that painful."
One local woman was diagnosed with fibromyalgia while in the Air Force, and is now a disabled veteran. While relieved by the diagnosis, she is also upset by its chronic nature. Her condition limits her to part-time work. She has trouble because people can't see her disability. "You can see someone with a broken arm," she said, "but you can't see a chronic illness."
Because the cause is not known, treatments focus on symptoms and do not cure the disease. At present, the condition is incurable, and treatment focuses on coping with the syndrome.
This is done on an individual basis, depending on the patient's symptoms and what relieves them. Common treatments include medicine, physical therapy, exercise, and general activity.
Dr. Solum said anti-inflammatory medicines like Advil or ibuprofen are generally ineffective, as the pain is not cause by inflammation. Tylenol and aspirin are more effective. Some anti-depressants are effective and frequently have a side effect of drowsiness, which helps patients get their rest.
None of the suffers reported using pain medication except as needed. A few took an anti-depressant at night.
Tebben reported that seeing a chiropractor for maintenance care and getting deep muscle massages helped her. She also said that her pain can be triggered by stress or weather. Haglund's does, too. His is worse in the winter.
All of them stressed the importance of exercise. Most preferred nonimpact exercise like walking, which works the cardiovascular system and stretches muscles. Heitke walks two miles four or five times a week. "I think it keeps you limber," she said. "I just know I feel better when I walk on a regular basis."
Last year, Haglund did carpentry full time, which he said gave him a better variety of exercise, as long as he didn't do too strenuous jobs like working with concrete or sheetrocking. "If I am physically active in a general sort of way, it's good for me. I feel better," said Haglund, whose body is adjusting this year to teaching and coaching again at the middle school. "But if I get too active, I get sore."
Both Lieser and Heitke reported that staying active in other ways helps them manage their condition. Heitke could retire, but continues to work at the Press office because she needs to stay mentally active. Spending all day at home, she said, would lead her to dwelling on her pain. Work, she said, was her salvation.
Lieser felt the same way about staying at home alone, which is why she took a another part-time job. "I took a second job to get out of the house," she explained.
Ultimately, patients have to cope with the pain mentally. "You have to keep reminding yourself. This is not life threatening," said Lieser "You talk yourself out of the pain."
"Everybody has to try different things until they find what works for them," said Tebben.
"Basically, you just learn to accept the pain," she continued. "It's there and you're going to have to live with it."
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