“Can Someone as Young as You Really Feel That Much Pain?” – A Survey on How People With Fibromyalgia Experience Healthcare in Sweden

Abstract

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.

Prevalence of FMS Diagnosis According to ACR 2016 Revised Criteria in a Pain Therapy Centre in Italy: Observational Study

“…The majority of these patients had a diagnosis on the admission of LBP, headache or facial pain, cervical or neck pain, articular pain, and others. The small number of FMS diagnoses on admission may be related to some concerns, like the poor knowledge among physicians about FMS or real scepticism in the medical community regarding this syndrome and its related conditions [15][16][17]. Nevertheless, the systematic application of the 2016 ACR revised diagnostic criteria for FMS to these patients after the clinical evaluation outside the examination room highlighted a prevalence of positive criteria for FMS in 57 patients (20.3%).…”

“You have to believe the patient”: What do people with fibromyalgia find helpful (and hindering) when accessing health care?

“…We found support for findings related to younger participants experiencing dismissal on the assumption that they could not be dealing with such severe symptoms at their young age. 22 One participant also described racism leading to delays in her diagnosis due to lack of understanding of how symptoms present across diverse ethnic and racial populations. Notably, this article contributes to the literature on the damaging and potentially disabling impacts of stigmatization and invalidation among people living with chronic pain; participants highlighted how stigmatizations of FM at a systemic health care level can lead to internalization of these beliefs, resulting in self-judgment and risk of self-stigmatization in the individual, potentially leading to negative mental health consequences.…”

Patients’ Lived Experience in a Multicomponent Intervention for Fibromyalgia Syndrome in Primary Care: A Qualitative Interview Study

“…Informers reported that only people who suffer from FMS understand it, remarking on the general lack of comprehension of relatives and healthcare professionals. A recent study about the experience of healthcare services for FMS in Sweden indicated that more than half of the sample felt misunderstood by the personnel and were missing an adequate treatment strategy [ 47 ].…”