Abstract Background/Aims Fibromyalgia refers to a long-term condition associated with widespread musculoskeletal pain, often alongside fatigue, sleep disturbances and cognitive difficulties. It is a frequent co-diagnosis received by patients with systemic autoimmune rheumatic diseases (SARDs), yet controversy persists regarding its validity, differentiation, and impact on patients’ lives. Methods This mixed-methods study analysed data from a survey of individuals with SARDs, and interviews with a purposively selected sample of these patients, and with clinicians. Quantitative measures included wellbeing measured by the Warwick Edinburgh mental wellbeing scale (WEMWBS) validated instrument, trust in healthcare providers, confidence in medical support, life adaptation, satisfaction with care, and self-reported current health. Independent t-tests and ANOVAs compared patient reported measures between participants with and without fibromyalgia diagnoses, and between those who accepted or rejected their diagnosis. Qualitative data from open-text responses and interviews were thematically analysed to explore perspectives on diagnostic accuracy, healthcare interactions, and lived experiences. Results Of the n = 1269 survey respondents, 25.9% (n = 329) reported a fibromyalgia diagnosis, of whom 28.2% (n = 93) felt this was a misdiagnosis and 24.6% (n = 81) were uncertain as to its accuracy. Quantitative analysis showed that participants reporting a fibromyalgia diagnosis had significantly lower self-ratings for wellbeing, life adaptation, trust in general practitioners and rheumatologists, confidence in receiving help, and satisfaction with care (all p .05), compared to those without a diagnosis. Differences between diagnosis acceptance versus rejection were non-significant except for acceptance being associated with better overall health self-ratings and satisfaction with life. Thematic analysis of interviews with clinicians (n = 23), patients (n = 18) and patient free-text responses (n = 175) revealed three themes: (1) diagnostic uncertainty due to overlapping symptoms, lack of biomarkers, and reliance on exclusion; (2) variability in healthcare providers’ knowledge and diagnostic framing, influencing trust and acceptance; and (3) the impact of diagnosis, misdiagnosis, and medical dismissiveness, with experiences ranging from relief and validation to distress, stigma, under-treatment of symptoms and delayed recognition of other medical conditions. Conclusion A fibromyalgia diagnosis is associated with poorer wellbeing and reduced trust in healthcare providers, regardless of diagnostic acceptance. Qualitative findings highlight diagnostic ambiguity and inconsistent clinical practices as potential key contributors to patient mistrust and mixed experiences of care. Disclosure D. Manavi: None. A. Tunks: None. W. Diment: None. A. Bortoluzzi: None. J.A. Bourgeois: None. L. Calderwood: None. M.A. Sloan: None.
Manavi et al. (2026) studied this question.