Background Research show that fibromyalgia has low credibility in healthcare, leading to poor treatment, lack of knowledge and disinterest. Therefore, people with fibromyalgia feel frustration, fear, anxiety and disappointment. Objective: The aim of this study was to explore the experiences of people with fibromyalgia in their encounters with healthcare personnel in Sweden. Method: A cross-sectional design, where 409 people with fibromyalgia answered an anonymous online patient-reported experience measure, developed specific for the study, with six closed questions and one open-ended question. Descriptive statistics were analysed by response frequencies. Correlation analysis were performed between demographic and clinical variables with the answers from the closed questions. Free-text answers were analysed with content analysis. Results: A third experienced the treatment as bad (34%) and that they were not being taken seriously (30.5%). Almost half (47%) always or mostly felt fear of seeking healthcare related to fibromyalgia and that the health care personnel did not understand their diagnosis (46%). The majority (54%) experienced that the health care personnel did not understand how fibromyalgia affected them or how they could help them. The findings were confirmed in the free-text answers that were categorized into: Scepticism and disregard, Ignorance and disinterest and Professionalism and empathy. There were positive significant correlations between age and five of the questions (ρ = .105–.181, p < .05–p < .01), indicating that lower age is correlated with a worse experience. Furthermore, the duration of fibromyalgia showed a significant correlation with feeling afraid of seeking healthcare because of fibromyalgia (ρ = .144, p < .01), the shorter duration, the greater was the fear of seeking healthcare. Conclusion: As a third of patients with fibromyalgia had bad experiences with healthcare, especially younger patients, knowledge about fibromyalgia needs to be increased and the patients should be taken seriously and treated respectfully, as well as given adequate support.
scite is a Brooklyn-based organization that helps researchers better discover and understand research articles through Smart Citations–citations that display the context of the citation and describe whether the article provides supporting or contrasting evidence. scite is used by students and researchers from around the world and is funded in part by the National Science Foundation and the National Institute on Drug Abuse of the National Institutes of Health.
customersupport@researchsolutions.com
10624 S. Eastern Ave., Ste. A-614
Henderson, NV 89052, USA
This site is protected by reCAPTCHA and the Google Privacy Policy and Terms of Service apply.
Copyright © 2025 scite LLC. All rights reserved.
Made with 💙 for researchers
Part of the Research Solutions Family.