SALT LAKE CITY — Athena Champneys is no stranger to questions about fibromyalgia, the illness that leaves her feeling wiped out and in pain. Some people don't believe it exists, and most don't understand it well. So it's no wonder that a national survey released this month doesn't surprise Champneys, who was diagnosed in December 2003. The study found that American women with the condition experience prolonged physical and emotional struggles. Champney's diagnosis came after debilitating pain settled in as a burning sensation up and down her spine and into her extremities.
The survey, conducted for HealthyWomen.org, a top online women's health site, found that it had taken most women who had fibromyalgia at least a year to get a diagnosis and that a fourth of them wait five years or more to find out what's wrong. Elizabeth Battaglino Cahill, executive director of HealthWomen.org, said an estimated 75 percent of those with the disease may still be undiagnosed. The numbers, she noted, could rival those living with diabetes.
"Even minimal activity drains the living tar out of me," said Champneys. "By afternoon, I need to lie down and rest. If I am having a bad day, I have to use an electric wheelchair in stores. You get all kind of interesting looks if they see you walk up to it."
Fibromyalgia is a syndrome featuring widespread muscular pains and fatigue, according to the Centers for Disease Control and Prevention. Symptoms include widespread pain, abnormal pain processing, sleep disturbance and fatigue. Its cause is unknown, but researchers believe genetics and stressors contribute to its development. And it often co-exists with morning stiffness, tingling or numbness in hands and feet, headaches, irritable bowel syndrome and more.
Champneys has four children, ages 5 to 14, so it was a relief, she said, to find a medication that actually helps her symptoms. Through her doctor, Lucinda Bateman, who has lots of experience with fibromyalgia and chronic fatigue, Champneys was part of a clinical trial of Savella, now approved by the Food and Drug Administration to treat fibromyalgia, along with a couple of other medications. "It cuts down on a lot of my symptoms," she said.
Still, Champneys finds herself unable to do many things she used to do on a daily basis. "Housework is pretty well impossible," she said. "Vacuuming is not going to happen. Squatting and bending to pick things up is one of the worst things, but my kids know to pick things up and hand them to me. We're trying to teach our dog, Timber, to do that as well."
Others can't see her illness, but they can inflict unimaginable pain, she said. "By barely touching me, they can cause severe pain. So when someone bumps into me in the store, that can cripple me and toss me onto the floor. If I turn suddenly into the counter behind me, I will crumple over in pain or grab hold of something."
Fibromyalgia affects men, as well as women, but in smaller numbers. And the survey focused on women. It found that 58 percent of women with fibromyalgia say they get some relief from prescription drug therapy, while 46 percent are helped by exercise and 43 percent by alternative treatments such as massage, acupuncture or chiropracty.
A diagnosis does not necessarily bring more help from family and friends, the survey found.
But early diagnosis seems to bring some tangible relief. The survey found those diagnosed within a year are "significantly less likely to experience daily challenges in management of their households, relationships and careers." And early diagnosis also decreased the chance the individual would stop exercising because of the disease's effects.
e-mail: lois@desnews.com