A national survey of U.S. women with fibromyalgia illustrates the significant difference an early diagnosis can make. The 48-state, 508-person survey sponsored by Forest Laboratories, Inc. was released by HealthyWomen.org last week.
Respondents reported the time from the onset of symptoms to diagnosis of fibromyalgia by a healthcare professional:
- Immediately – 19%
- Within one year – 22%
- 1 – 5 years – 31%
- More than 5 years – 23%
Patients whose diagnosis was delayed were more likely to report severe symptoms. For those whose diagnosis took five years or more, 68% reported their symptoms as severe, compared to 42% of those diagnosed within a year.
The top three reasons given for the delay in diagnosis were:
- 50% said their healthcare provider didn't automatically connect their symptoms with FM.
- 48% were not aware of fibromyalgia as a condition.
- 47% said their individual symptoms were treated as separate conditions.
Another important factor that prevented a prompt diagnosis was the fact that 71% of the respondents admitted they didn't seek medical help until they could no longer tolerate their symptoms.
"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."
Additional Survey Results
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 patients' daily activities, and the types of support patients need and receive.
In addition to the importance of early diagnosis, the survey revealed several other interesting tidbits.
Severity of fibromyalgia symptoms:
- Severe – 48%
- Moderate – 38%
- Mild – 14%
Fibromyalgia symptoms experienced:
- Fatigue – 93%
- Widespread pain – 92%
- Sleep disturbances – 89%
- Stiffness – 87%
- Difficulty concentrating – 63%
- Numbness in hands and feet – 61%
- Headaches – 52%
- Mood changes – 47%
Treatments that have improved symptoms:
- Prescription drug therapy – 58%
- Exercise – 46%
- Alternative therapies (i.e., massage, acupuncture, meditation and chiropractic care) – 43%
Impact on day-to-day life:
- 67% can no longer keep up with household chores.
- 47% said job or career has been negatively affected.
- 39% gave up exercising or playing sports.
- 31% said FM has affected their ability to experience intimacy.
- 29% no longer feel good about themselves.
- 28% stopped traveling.
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.
You can download a copy of the full survey report in a Word document format here: WE FEEL Report
Women Expressing Fibromyalgia's Effects on their Everyday Lives – A National Survey. HealthyWomen.org. 11/22/2010.
Delay in Diagnosis Significantly Impacts Lives of Patients With Fibromyalgia, New Survey Reports. PR Newswire. 11/22/2010.
Published On: November 30, 2010