Research article

An internet survey of 2,596 people with fibromyalgia

Robert M Bennett¹ , Jessie Jones² , Dennis C Turk³ , I Jon Russell⁴ and Lynne Matallana⁵

¹Oregon Health & Science University, Portland, OR, USA

²California State University, Fullerton, USA

³University of Washington, Seattle, WA, USA

⁴The University of Texas Health Science Center at San Antonio, TX, USA

⁵National Fibromyalgia Association, Orange, CA, USA

author email corresponding author email

BMC Musculoskeletal Disorders 2007, 8:27doi:10.1186/1471-2474-8-27

Published:	9 March 2007

Abstract

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 middle-aged 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 self-selected 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.