An internet survey of 2,596 people with fibromyalgia
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Date
2007Author
Bennett, Robert M.
Jones, Jessie
Turk, Dennis C.
Russell, I Jon
Matallana, Lynne
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Background: This study explored the feasibility of using an Internet survey of people with fibromyalgia (FM), with a view to providing information on demographics, sources of information,
symptoms, functionality, perceived aggravating factors, perceived triggering events, health care utilization, management strategies, and medication use.
Methods: A survey questionnaire was developed by the National Fibromyalgia Association (NFA) in conjunction with a task force of "experts in the field". The questionnaire underwent several
rounds of testing to improve its face validity, content validity, clarity and readability before it was mounted on the internet. The questionnaire consisted of 121 items and is available online at the
website of the National Fibromyalgia Association.
Results: The questionnaire was completed by 2,569 people. Most were from the United States, with at least one respondent from each of the 50 states. Respondents were predominantly middleaged Caucasian females, most of whom had FM symptoms for = 4 years. The most common problems were morning stiffness, fatigue, nonrestorative sleep, pain, concentration, and memory.
Aggravating factors included: emotional distress, weather changes, insomnia, and strenuous activity. Respondents rated the most effective management modalities as rest, heat, pain medications, antidepressants, and hypnotics. The most commonly used medications were: acetaminophen, ibuprofen, naproxen, cyclobenzaprine, amitriptyline, and aspirin. The medications perceived to be
the most effective were: hydrocodone preparations, aprazolam, oxycodone preparations, zolpidem, cyclobenzaprine, and clonazepam.
Conclusion: This survey provides a snap-shot of FM at the end of 2005, as reported by a selfselected population of people. This descriptive data has a heuristic function, in that it identifies several issues for further research, such as the prescribing habits of FM health care providers, the role of emotional precipitants, the impact of obesity, the significance of low back pain and the
nature of FM related stiffness.