Results released 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 (67%) of respondents say they are unable to keep up with household chores, nearly half (47%) report that their work-life or career has been negatively affected, and two in five (42%) spend less quality time with their friends. Nearly one-third (31%) say 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 six 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 sources the nation’s leading independent source of health information for women. The survey was sponsored by Forest Laboratories, Inc.
“Fibromyalgia is a common medical condition affecting women,” said 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 in four (23%) respondents report having suffered for at least five years before receiving a diagnosis for their condition. Most respondents (71%) say 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 say they fear skepticism about their condition, with 64% expressing concern about being taken seriously, and 79% indicating the top quality they seek in a healthcare 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,” added 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.”
Respondents whose diagnosis was delayed were more likely to report severe symptoms (68%) at the time of diagnosis, compared to those who were diagnosed within a year (42%). Patients diagnosed within a year are also significantly less likely to experience daily challenges in the management of their households, relationships, and careers.
“An earlier diagnosis is important,” said David Edelberg, M.D., 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.”
Effective treatment and support from loved ones are critical
Since being treated, 51% 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%), compared to those who received the same amount of or less support (47%) since being treated.
Respondents say the following types of treatment have improved their symptoms:
— Prescription drug therapy (58%)
— Alternative therapies (43%), such as massage, meditation, acupuncture, and chiropractic care
Unfortunately, many patients do not receive the support from friends and loved ones that they need:
— Of the 43% of respondents who say they rely most often on their spouse or significant other for support, only about a quarter (27%) say this person fully understands how fibromyalgia affects them
— After learning about their diagnosis, less than half of respondents say their friends (28%), children (33%), and spouses (43%) offered more support
“Arriving at an earlier and accurate diagnosis is only the first step for patients with fibromyalgia,” said 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 better understand perspectives on diagnosis and treatment, the relationship between fibromyalgia patients and their physicians, the impact of the condition on patient’s daily activities, and the types of support patients need and receive.
Research for WE FEEL 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. The findings are nationally representative of diagnosed, female fibromyalgia sufferers in the US.
The total sample of 508 yields a margin of error of ±4.4% at the 95% confidence level, which means that 95 out of 100 times that a sample of this size is drawn, the results will not vary by more than 4.4 percentage points in either direction. The statistical significance is reported at the 95% level.
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