By Jennine Zeleznik
The Daily Times
Between 3 million and 6 million Americans suffer from fibromyalgia, a chronic disorder characterized by widespread musculoskeletal pain and fatigue.
Three of those people are in my family.
My mom, Peg Zeleznik, was diagnosed with fibromyalgia the spring of my junior year of high school.
“I’d been in a car accident in August the year before and was getting no relief, after six or seven months, just no relief. Then the doctor diagnosed it,” she said.
The cause of fibromyalgia is unknown and the disorder itself is difficult to diagnose because its symptoms — widespread pain, fatigue, sleep disturbances, morning stiffness, irritable bowel syndrome and anxiety — are similar to those of other disorders, according to the National Institute of Arthritis and Musculoskeletal and Skin Diseases.
“A lot of people are told for years and years that it’s in their heads, because there is no blood test you can do for fibro, there is no X-ray, no CAT scan to diagnose it,” Peg said. “Plus, the symptoms are so broad-ranging from one person to another.”
However, doctors generally use two criteria to diagnose FM — a combination of widespread pain with tenderness in at least 11 of 18 specific “trigger points” across the body, many in the neck and shoulder area.
“I think I had 16 for 18 or 18 for 18,” Peg said.
Over the next few years, my mother went from the vibrant, energetic person who drove me crazy during my childhood to somebody who could wake up one morning too tired to take a shower.
“I didn’t curtail my activities,” she said. “The disease curtailed me.”
She had to make major lifestyle changes, including closing her quilting shop and working from home. She learned to balance her daily activities and to manage her fibromyalgia through a combination of physical therapy, stress management and medications.
“I have to be very careful when I know I want to do something. I like to travel, but I have to be very careful in not pushing myself too hard,” Peg said. “If I push myself to really do something, I pay for it for days.”
The hardest part, she said, is the “fibro fog” — a result of the disease that makes it hard to think sometimes.
“It makes me feel like I’m going senile,” she said with a laugh. “I read a lot, I feel like I have a large vocabulary. But I lose the words.”
My mother is 45 years old. She will be living with this disease for a long time and for the most part seems to have come to terms with her limitations.
“There are things I would like to have done that I’m not going to be able to do — like spelunking,” Peg said with a laugh. “I always wanted to take one of those big cave tours, but I’m not going to be able to. I’m also not going to be able to do five-mile hikes up mountaintops, or rock climbing. Rock climbing is definitely out for the future.
“I don’t have the energy I had 15 years ago, but I do have more energy these days. It’s something that I’ve learned to deal with.”
For my sister, however, it’s been a little more difficult.
Fibromyalgia tends to run in families, according to the article “Pain Processing: Fibromyalgia Syndrome,” written by Kerrville doctors Anand Mehendale and Mark Goldman.
At the age of 16, my sister was diagnosed with fibromyalgia, a few years after my mom learned she herself had the disorder.
Until lately, Rachael has been in denial.
“I tried to pretend that I don’t have it. A lot of times I told myself that I don’t, that I was misdiagnosed,” she said.
This past spring, she couldn’t pretend anymore. Rachael just finished her junior in college, and is a Spanish major with an education minor who plans to teach elementary school when she graduates. The stress of finals week last month brought on such a bad flare-up that she ended up in the hospital with stabbing pains in her arm.
“You can’t keep up. When you’re having trouble getting out of bed in the morning, when it hurts to walk and you can’t even think of words to say — it’s a little hard to write a paper, or to get to class on time or study well. Everything builds up,” she said. “When stress builds up, fibro gets worse. And when fibro gets worse, you get more frustrated and become more stressed.”
This summer, Rachael plans to take control of her situation. She’s going to a doctor for a specialized physical therapy plan and perhaps medications to help her control the FM.
“I’ve been through the worst. Now it’s just learning how to make it better, how to live with it,” Rachael said. “From now on it should improve, because up until now I haven’t done anything for it.”
That whole running in the family thing? My maternal grandmother was diagnosed with FM two weeks ago. As for me, I’m checking out those pressure points, but so far I seem to be doing fine.
Like many other diseases, it’s just a matter of learning to live with it. Although not much is known about FM, research is ongoing. If you think you have FM, contact your doctor. More information is available at http://www.nlm.nih.gov/medlineplus/fibromyalgia.html.
© 2004 The Daily Times. All rights reserved.