Shanell Davis, a student at the University of Georgia, recalls being constantly sick as a child. Between stomachaches, migraines and just not feeling well, she was often in her doctor’s office.
At age 13, Ms. Davis finally got a reason for her constant pain and illness. She had fibromyalgia. For Ms. Davis, simply being given the name of her condition was a relief.
Ms. Davis found that few medications eased her pain, so today she takes painkillers only when her pain becomes too much to tolerate. Ms. Davis, an athlete in high school, knows that routine exercise is one thing that helps reduce her pain. However, a lacrosse injury and the hectic schedule of college life have made exercise difficult to fit in.
Even on the worst days, Ms. Davis says she does her best to get to classes. She is determined not to let her fibromyalgia get in the way of her go
Mabel Peralta had been in bed, unable to get up, for two days last May before she went to the hospital. There, doctors tested her for lupus, Lyme disease and several other conditions before they figured out that Ms. Peralta had fibromyalgia.
Once active and energetic, Ms. Peralta is bothered most by the way fibromyalgia has sapped all of her energy. She lives in a walk-up apartment and finds simply climbing the stairs is exhausting.
One of the symptoms of fibromyalgia is “brain fog,” which makes remembering to take pain medications a challenge for Ms. Peralta. “I pay for it when I forget,” she said. Ms. Peralta said that her friends and family don’t always understand her pain. Some suggest she just take some aspirin, and others refer to fibromyalgia as “fibro-my-lazy,” a reference to it always being the reason Ms. Peralta can’t go out.
On the worst days, “even the clothes you wear bother you,” Ms. Peralta said. “It’s an invisible disability.”
Back to Bowling
Leon Collins, 59, Clayton, N.J.
About 10 years ago, Leon Collins, a retired research technician, was rushed to the hospital because of pains in his chest. He thought he was having a heart attack.
At the hospital, doctors could not find the cause of Mr. Collins’s chest pain. So he went to various general practitioners, rheumatologists and other specialists to figure out what was wrong. Mr. Collins felt relieved upon learning he had fibromyalgia. After years of not understanding what was wrong and countless medical scares for him and his wife, Mr. Collins finally had a name for his condition.
Mr. Collins entered a clinical trial six years ago for a new fibromyalgia drug. He says the drug helps to curb most of his pain. Exercise and stress-reduction have also helped to keep Mr. Collins active. Mr. Collins says one of the harder things for him is figuring out when certain body pains are symptoms of fibromyalgia or a byproduct of aging. Still, he is happy to be fully active once again.
Confused by Her Disorder
Christine Wysocki, 33, St. Augustine, Fla.
Christine Wysocki, a librarian, learned in 2005 that she had fibromyalgia. It was three years earlier, however, that she began to feel pain in her right elbow, hands and wrists.
Ms. Wysocki says the fibromyalgia makes her feel achy all over, but it is worst in her hands, elbows and back. “Everything feels like a bruise,” she said.
While it would be ideal if she could sleep 12 hours every night, Ms. Wysocki knows that is not practical, so midday naps help her feel refreshed. She says she benefits most from weekly physical therapy massage, which is covered by her insurance. “Getting a good night’s sleep is absolutely key to staying pain free,” Ms. Wysocki said.
Ms. Wysocki runs a custom adult hula hoop business out of her home, making about 200 hula hoops a year by hand. Dividing the work into stages helps her complete her orders despite the pain in her hands and arms.
While she feels isolated by those who don’t believe fibromyalgia is a real condition, Ms. Wysocki says she draws much support and comfort from her husband and two pets.
Seeking the Source of Her Symptoms
Amy McMullen, 50, Gold Canyon, Ariz.
Amy McMullen believes she may have had symptoms of fibromyalgia as far back as 20 years ago. But since she didn’t have the most common symptom — pain — it took her a long time to figure out she had the condition.
Ms. McMullen said one doctor told her years earlier that her dizziness, fatigue, brain fog and heart abnormalities were caused by fibromyalgia, but she didn’t believe it. Several more years of feeling ill finally convinced her that he may have been right. Still, Ms. McMullen wasn’t satisfied with just being treated for the symptoms of fibromyalgia. With much research, she discovered a link between fibromyalgia and hypothyroidism. And tests revealed that Ms. McMullen was suffering from low levels of thyroid hormone.
For the past seven months, Ms. McMullen has been taking supplements for her thyroid hormones. She says she is beginning to feel an improvement in her symptoms, but is not 100 percent better yet.
”The thyroid is a canary in a coal mine,” said Ms. McMullen. She believes that others with fibromyalgia should have their thyroid hormone levels tested to be sure it isn’t an underlying cause for their pain.
A Writer in Pain
Aliza Hausman, 29, Bronx
Aliza Hausman, a freelance writer and blogger, recalls having generalized pain starting at 18. But for years, she was unable to find any answers for the cause of her severe pain.
After visiting many doctors, some of whom dismissed her complaints, Ms. Hausman was finally told she had fibromyalgia. Simply putting a name to her symptoms was a relief at first.
Ms. Hausman takes medication daily to lessen her pain. Still, some days are worse than others. She says yoga and stretching help, but she finds it difficult to exercise on a routine basis.
Ms. Hausman says some of her worst pain is in her hands and jaw, making routine tasks like combing her hair and even chewing difficult. Ms. Hausman jokes that to ease her pain, she hopes to one day be able to afford a live-in acupuncturist, maid and hair stylist