HealthyWomen, the nation’s leading independent health information source for women, commissioned Edelman StrategyOne to conduct an online survey among 508 diagnosed, female fibromyalgia sufferers in the U.S. between May 5 and May 11, 2010.* The survey was sponsored by Forest Laboratories, Inc.
Results from Women Expressing Fibromyalgia’s Effects on their Everyday Lives (WE FEEL), illuminate the private, prolonged, and often agonizing, physical and emotional struggles that women with fibromyalgia face. The survey also reveals constructive, concrete ways to help ease suffering, including an earlier diagnosis and access to information and support.
Fibromyalgia is a significant burden on patients
Most patients (85%) consider fibromyalgia a burden on their lives.
Nearly all (86%) rate their symptoms as moderate to severe.
Many patients face skepticism
Sixty-four percent are concerned that their fibromyalgia is not being taken seriously.
Nearly four in five (79%) said they look for fibromyalgia healthcare professionals (HCPs) who will “take their symptoms seriously”.
Most patients suffer undiagnosed for years
Seven in ten (71%) do not seek help until their symptoms become intolerable.
For more than half (54%), diagnosis took a year or more; for one in four (23%), it took at least five years.
Patients whose diagnoses take longer are more likely to report severe symptoms (68%), compared to those diagnosed in less than a year (42%).
The perceived top barriers to proper diagnosis include HCPs not recognizing symptoms as fibromyalgia (50%) and the patient’s own lack of knowledge about the condition (48%).
Earlier diagnosis can lessen the impact of fibromyalgia
Nine in ten (91%) feel relieved when they can finally connect a condition with their symptoms.
Patients diagnosed in less than a year are less likely to experience daily life challenges.
Nearly half (48%) of those who were diagnosed after five years or more stopped exercising compared to one third (33%) of those who were diagnosed in less than one year.
Fibromyalgia negatively impacts career and housework
Nearly half (47%) said their work or career has been negatively affected.
Two-thirds (67%) said they can no longer keep up with household chores because of fibromyalgia.
Fibromyalgia challenges relationships and limits intimacy
Two in five (42%) spend less quality time with their friends, while one in three (29%) spends less quality time with their family.
Nearly one-third (31%) said fibromyalgia has affected their ability to experience intimacy.
Patients often lack adequate support and resources
While more than four in 10 women (43%) said they rely most often on their spouse or significant other, only about a quarter (27%) said that person fully understands how fibromyalgia affects them.
A greater level of support was offered by spouses (43%), followed by children (33%), and friends (28%) when learning of a loved one’s diagnosis.
Only one of four (25%) said that they have the tools and resources available to help them manage their fibromyalgia.
Both treatment and support from loved ones were helpful in improving fibromyalgia symptoms and day-to-day life
Four in ten (42%) patients who take prescription medication report taking FDA-approved medication. Among those, 92% rank drug therapy as a successful treatment option in improving fibromyalgia symptoms.
Respondents said exercise (46%) and alternative therapies (43%), such as massage, meditation, and chiropractic care were also factors in improving their fibromyalgia symptoms.
Lifestyle changes were also helpful for nearly half (51%) of patients in improving fibromyalgia symptoms.
A greater number (56%) of those who received more support from their spouse reported that treatment had a positive impact on their day-to-day life compared to those who received the same amount of support or less (47%).
Nearly two-thirds (61%) of those who received more support from their children reported that treatment has improved their day-to-day life compared to those who received the same amount of support or less (48%).
*Methodology: Fielded by Harris Interactive | 508 respondents in 48 states | 48 questions; 20 minutes | ±4.4% margin of error