The results? There’s plenty most of us don’t know about fibromyalgia—and a few things that might even surprise those who have it.
“We found that 92 percent of people have heard of fibromyalgia, but they have a real misconception about its impact on daily life,” says Penney Cowan, founder and CEO of the American Chronic Pain Association. “There are real differences between what people believe and what actually happens.”
Here are four of the biggest myths about fibromyalgia that the survey discovered (for the full results, visit theacpa.org):
Myth: Sedentary activities don’t hurt.
When asked whether certain everyday activities would be difficult for people with fibromyalgia, people with and without the illness agreed that physical tasks like household chores and exercising weren’t easy. But when it came to sit-down activities, there was a discrepancy: “Driving a car” was rated difficult by 61 percent of people with fibromyalgia, but only 41 percent of people without; 75 percent of fibromyalgia patients found “watching a movie” painful, but only 18 percent of the general population imagined it would be difficult.
“Sitting still in one place is difficult because of the muscle pain. That was for me a big problem,” says Cowan, who has fibromyalgia. Moving around can help with the pain.
Myth: Fibromyalgia is a middle-aged woman’s disease.
Even people with fibromyalgia were likely to identify it with older women, but the condition also affects women in their 20s, as well as young and middle-aged men. “I treat a lot of young ladies and a few young men,” says Beth Hodges, MD, a family practice physician in Asheboro, N.C., who specializes in fibromyalgia treatment. “Men are trickier to diagnose because they don’t come in [to the doctor’s office]. They might think being diagnosed with fibromyalgia takes away from their masculinity.”
Myth: People think fibromyalgia patients are “complainers” or “lazy.”
People with fibromyalgia were overwhelmingly likely to feel that others view them in a negative light. But in reality, the general public was more likely to rate fibromyalgia patients using positive adjectives like “courageous” and “strong.” Because chronic pain and depression often go hand in hand, correcting this misperception could be an important step in treatment.
Myth: It’s easy to know when to seek help for pain.
The fibromyalgia patients in the survey reported waiting an average of 3 years to seek help for their symptoms, with 15 percent saying they waited 7 or more years. By contrast, only 3 percent of people without chronic pain said they’d wait a year or more before seeking help. This points to a lack of understanding of how elusive chronic pain symptoms can be.
“I think part of that is because the symptoms don’t just hit you all of a sudden, they sort of progress over time,” says Cowan. “Everyone experiences it differently. I also think people are afraid, especially men, that they will be seen as being weak. It’s a hard thing to diagnose because there’s not one thing to put your finger on, no one test that will tell you ‘you have fibromyalgia.’ ”
Chronic pain doesn’t have a one-solution-fits-all remedy, and overcoming that hesitation to seek help is the first step in getting the right care for you, says Cowan. “There’s a lot that goes into managing fibromyalgia. There are many different choices for treatment—it depends on the person. That’s why good, open communication with your health care provider is so important. You’ve got to be proactive in your care; be that active patient.”