|G. Rapids woman doesn't let fibromyalgia beat her|
|Written by By JENISE FOUTS Sentinel Staff Writer|
|Wednesday, 12 August 2009 10:08|
GRAND RAPIDS - Pill bottles define Carmen Duncan's life. Full ones fill baskets on her counter. Empties are saved in large bags.
She takes 11 pills in the morning, just to get out of bed. At lunch she downs three more. Dinner time adds seven pills to her daily menu.
Duncan is one of 10 million people in the United States diagnosed with fibromyalgia syndrome, a chronic disorder of the muscles and related soft tissue, including ligaments and tendons. Hard to diagnose because its conditions are similar to others, such as lupus and Lyme's disease, it is called fibromyalgia syndrome because it is identified by a collection of symptoms: Widespread nerve pain, fatigue, heightened pain in response to pressure, muscle spasms, chronic sleep disturbances and bowel problems - just to name a few.
"Because your stomach is a muscle, the bladder is a muscle, the heart is a muscle, all those things are affected," explained Duncan. "You lose bladder control. ... It affects my lungs so I get pneumonia very easily. It affects all the muscles around the joints. I have rheumatoid arthritis. It's a triple whammy."
She also gets chronic migraines and has insomnia, depression and the shakes. More pills.
Add acid reflux, indoor and outdoor allergies, asthma and restless leg syndrome. Even more pills.
"It won't necessarily kill you. It makes you miserable," Duncan said of the disease. "There is no one-pill wonder cure."
"Just one would knock me out," commented Dave Duncan, in admiration for the bevy of medications his wife has to take daily.
Some of the medicines cause weight gain. The pills she took, and her migraine medicine, both cause nausea. "It was a constant battle. There are so many side effects. I was miserable. There were times I didn't feel like putting my feet on the floor."
But Duncan, the mother of five, is not a quitter. "I refuse to let this disease overtake me," she said, noting that her seven grandchildren in Ohio keep her going. She also has four grandchildren in Wisconsin, along with one great-grandchild.
In addition, she and her husband, Dave, both have to work to pay their bills. "I make myself get up each day and go to work. I know I have to," said Duncan who has been in retail for 38 years. Though her doctor offered to put her on disability, she realizes it would take away her reason to get up. "The best thing is to stay working. The doctor said 'I want you to work as long as you can. Once you stop you won't get out of bed.'" On weekends she makes plans to do things with her children and grandchildren.
Work also helps her pay for medications. A single pill she was taking cost $50. Duncan "guesstimated" her pill cost is anywhere from $200 to $500 a week.
Among diseases, fibromyalgia is a relative newcomer; named in 1976, with the first clinical study published in 1981. It seems most common among women, ages 35 through 55. One of the most recent studies, done in France, concludes that fibromyalgia is related to abnormalities of blood flow in the brain.
It may also be hereditary. Duncan recalls an aunt with the disease who refused to get out of bed and died at 65 after her body stopped functioning.
Finally diagnosed in her early 30s with fibromyalgia, and given information on it, Duncan found the knowledge made a "huge, huge difference." She had a name for her disease and a reason for her multitude of symptoms.
"I try to get through every day, one day at a time. I don't make plans. We are very last-minute people because I don't know what I'll feel like. I'm going to work until I can't stand up any more. "
Duncan said Bowling Green has a fibromyalgia support group, but she is too busy working and providing care for relatives to attend it.
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