A new national survey reveals the private, prolonged, physical and emotional struggles that women with fibromyalgia face, in part because it can take several years for them to be diagnosed. Most sufferers (85 percent) consider fibromyalgia a burden in their lives, making it difficult to work, maintain relationships or keep up their households. Yet more than half (54 percent) say their diagnosis took one year or longer. Many women wait until they can no longer tolerate their symptoms before seeking help.
Fibromyalgia, a condition characterized by widespread pain and tenderness, decreased physical function, and other symptoms, affects between two and four percent of the U.S. population or up to 12 million Americans, mostly women. It is estimated there could be as many American women living with fibromyalgia as there are living with diabetes.
“Though fibromyalgia is a common medical condition affecting mostly women, too many continue to suffer in silence,” said Elizabeth Battaglino Cahill, executive director, HealthyWomen.org and a registered nurse. “Increased awareness has greatly improved care for people with this condition, but we still have much work to do in getting patients the care and support they need.”
Although fibromyalgia is a real condition, most women surveyed worry that it is not being taken seriously by their loved ones and physicians. In fact, only about one-quarter say their spouse or significant other, their main source of support, fully understands how fibromyalgia affects them.
Other barriers to diagnosis include patients’ own lack of knowledge about the condition and health providers not recognizing symptoms.
There are no specific tests for fibromyalgia and the symptoms overlap with many other conditions, so patients are often referred to numerous physicians before being diagnosed accurately.
An earlier diagnosis is important for fibromyalgia sufferers. Nearly one-quarter of women said they suffered for at least five years before being diagnosed. Unfortunately, those women who reported a longer delay in diagnosis also reported experiencing more severe symptoms.
“An earlier diagnosis can help many aspects of a fibromyalgia patient’s experience,” said David Edelberg, M.D., founder of WholeHealth Chicago and a physician specializing in fibromyalgia treatment. “It’s crucial for women to visit their doctors as soon as possible if they think they may have fibromyalgia, so they can begin an effective management plan and get back to their daily activities.”