An internet survey of 2,596 people with fibromyalgia
Open accessAbstract
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 > or = 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.
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Patients with fibromyalgia syndrome identify balance issues as one of the ten most debilitating symptoms of the disease, with a reported prevalence of 45%.
“Patients with FMS identify balance issues as one of the ten most debilitating symptoms of this disease; with a reported prevalence of 45% [6].”
From Impaired Balance in Patients with Fibromyalgia Syndrome: Predictors of the Impact of This Disorder and Balance Confidence (2020) · cites this paper as [6]
The Results, under “Symptoms and functionality” (page unavailable), list balance problems among the most common symptoms reported by survey respondents. The passage does not rank them among the ten most debilitating symptoms or give a 45% prevalence for balance problems; its separate 45% figure refers to respondents reporting no difficulty walking two blocks. (LLM, conf=0.85)
Experimental — accuracy not yet measuredThe main symptoms of fibromyalgia syndrome are chronic widespread pain, nonrestorative sleep, physical fatigue, and cognitive disturbances.
“The main symptoms of fibromyalgia syndrome (FMS) are chronic widespread pain, nonrestorative sleep, physical fatigue, and cognitive disturbances.”
From Comparative Efficacy and Harms of Duloxetine, Milnacipran, and Pregabalin in Fibromyalgia Syndrome (2010) · cites this paper as [5]
Disturbed sleep is consistently ranked by patients as a highly bothersome symptom of fibromyalgia.
“Disturbed sleep is consistently ranked by patients as a highly bothersome symptom of the disease [5,6].”
From Psychometric properties of a single-item scale to assess sleep quality among individuals with fibromyalgia (2009) · cites this paper as [5]
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- Authors
- Bennett, R. M., Jones, J., Turk, D. C., Russell, I. J., & Matallana, L.
- Affiliations
- Oregon Health & Science University (US)
- California State University, Fullerton (US)
- University of Washington (US)
- The University of Texas at San Antonio Health Science Center (US)
- Corresponding author
- Bennett, Robert M
- ORCID
- Bennett, Robert M
- Venue
- BMC Musculoskeletal Disorders
- Published
- 2007-03-09
- Volume
- 8
- Issue
- 1
- Pages
- 27-27
- ISSN
- 1471-2474 (ISSN-L)
- PMC
- PMC1829161
- OpenAlex
- W2165844418
- Cited by
- 865
- References
- 57
- Citations by year
- 2026: 18 · 2025: 32 · 2024: 35 · 2023: 40 · 2022: 37 · 2021: 50 · 2020: 32 · 2019: 27 · 2018: 35 · 2017: 50 · 2016: 50 · 2015: 60 · 2014: 65 · 2013: 56 · 2012: 68
- FWCI
- 27.78
- Type
- journal article
- Language
- en
- Open access
- gold
- doi.org
- Licence
- Locations
- BMC Musculoskeletal Disorders (publishedVersion, cc-by)
- Europe PMC (PubMed Central) (publishedVersion, cc-by)
- PubMed Central (publishedVersion, cc-by)
- PubMed (publishedVersion)
- ResearchWorks at the University of Washington (University of Washington) (submittedVersion, cc-by)
- DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion, cc-by-sa)
- Funders
- University of Washington
- California State University, Fullerton
- Topics
- Health Sciences › Medicine › Psychiatry and Mental health › Fibromyalgia and Chronic Fatigue Syndrome Research
- Health Sciences › Medicine › Pharmacology › Musculoskeletal pain and rehabilitation
- Social Sciences › Sociology and Political Science › Survey Methodology and Nonresponse
- Keywords
- fibromyalgia, online surveys, questionnaire development, survey feasibility, symptom profiles, aggravating circumstances, health care utilization, pain management, medication use, cyclobenzaprine, antidepressants, hypnotics, fatigue, non-restorative sleep, morning stiffness, emotional distress
- MeSH terms
- Adult, Female, Fibromyalgia, Health Surveys, Humans, Male, Middle Aged, Pain Measurement, Internet
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