Results released recently from a national survey of U.S. women with fibromyalgia illustrate the private and prolonged physical and emotional struggles patients with this condition face, underscored by delays in diagnosis, which a majority of respondents report as being one year or longer.

As a result of fibromyalgia, two-thirds of respondents said they're unable to keep up with household chores, nearly half report that their work life or career has been negatively affected, and two in five spend less quality time with their friends. Nearly one-third said fibromyalgia has negatively affected their ability to experience intimacy.

Fibromyalgia is a condition marked by chronic, widespread pain and tenderness, and decreased physical function. It affects 6 million to 12 million Americans, mostly women, three-quarters of whom are estimated to be undiagnosed.

Results of the 48-state, 508-person survey were released by HealthyWomen.org, an independent source of health information for women. The survey was sponsored by Forest Laboratories Inc.

"Fibromyalgia is a common medical condition affecting women," says Elizabeth Battaglino Cahill, executive director of HealthyWomen.org and a registered nurse. "It is estimated that there could be as many American women living with fibromyalgia as there are living with diabetes. And while increased awareness has dramatically improved care for patients with this condition, we still have a lot of work to do to ensure patients have the support they need to live their lives fully."

Remarkably, one quarter of respondents reported having suffered for at least five years before receiving a diagnosis for their condition. Most respondents said they waited until they could no longer tolerate their symptoms before seeking a diagnosis. Examples of perceived barriers to a proper diagnosis include patients' own lack of knowledge about the condition and physicians not recognizing symptoms.

Although fibromyalgia is a chronic disorder, a majority of respondents said they fear skepticism about their condition, with 64 percent expressing concern about being taken seriously, and 79 percent indicating the top quality they seek in a health-care professional is assurance that their condition is being taken seriously.

"This survey quantifies what patients and their supporters have known and experienced—that stigma, skepticism, lack of knowledge about fibromyalgia, and delays in diagnosis contribute negatively to patient outcomes," adds Battaglino Cahill. "However, with more knowledge, patients are overcoming these barriers to improving their lives, and that is an important lesson we can take away from this survey."

Early diagnosis is important

Respondents whose diagnosis was delayed were more likely to report severe symptoms (68 percent) at the time of diagnosis, compared with those who were diagnosed within a year (42 percent). Patients diagnosed within a year also are much less likely to experience daily challenges in management of their households, relationships and careers.

"An earlier diagnosis is important," says Dr. David Edelberg, founder of WholeHealth Chicago and a physician specializing in fibromyalgia treatment. "The sooner patients are diagnosed, the sooner they can begin an effective management plan and get back to their daily activities. This is why it's critical for both doctors and patients to communicate effectively and for patients to not wait until they can no longer bear their symptoms before seeking help."

Since being treated, 51 percent of patients believe that their overall day-to-day life has improved. In addition, a greater number of patients who received more support from their spouse report that their day-to-day life has improved due to treatment (56 percent), compared with those who received the same amount of or less support (47 percent) since being treated.

Respondents said the following types of treatment have improved their symptoms:

• Prescription drug therapy (58 percent).

• Exercise (46 percent).

• Alternative therapies (43 percent), such as massage, meditation, acupuncture and chiropractic care.

Unfortunately, many patients don't receive the support from friends and loved ones that they need:

• Of the 43 percent of respondents who said they rely most often on their spouse or significant other for support, only about a quarter (27 percent) said this person fully understands how fibromyalgia affects them.

• After learning about their diagnosis, less than half of respondents said their friends (28 percent), children (33 percent) and spouses (43 percent) offered more support.

"Arriving at an earlier and accurate diagnosis is only the first step for patients with fibromyalgia," says Battaglino Cahill. "Women need to work closely with their physicians to find an effective treatment plan, and friends and loved ones must do their part to provide the ongoing encouragement that is critical to a patient's improvement."

The survey, known as WE FEEL (Women Expressing Fibromyalgia's Effects on their Everyday Lives), was designed to gather data and understand perspectives on diagnosis and treatment better, the relationship between fibromyalgia patients and their physicians, the impact of the condition on patients' daily activities, and the types of support patients need and receive.

The research was conducted by Edelman StrategyOne, using the field services of Harris Interactive Service Bureau. The 20-minute survey was fielded between May 5 and May 11, 2010.