Background

Patients with fibromyalgia syndrome (FMS) often report prolonged diagnostic pathways and inadequate care, prompting reliance on self-management and online health information. This study aimed to quantify the association between specific clinical experiences and the sources and extent of health information-seeking behaviours in people with FMS.

Methods

A cross-sectional online survey was completed by adults who self-reported a diagnosis of FMS. Measures assessed symptom severity, diagnostic and treatment experiences, frequency and duration of symptom flares, perceived stigma and caring from healthcare professionals, and engagement with health information sources, including traditional and digital platforms. Associations between clinical experiences and health information-seeking behaviours were examined using non-parametric tests and hierarchical regression analyses.

Results

A total of 384 adults completed the survey (75.3% female; median age 41 years). Most participants reported experiencing symptom flares (88.0%), occurring approximately every 2–3 weeks and lasting a median of 3 days. Participants reported significantly more negative than neutral experiences across multiple diagnostic and treatment variables, including diagnostic difficulty and challenges accessing specialist care. Most respondents (84.1%) actively sought health information, most commonly from healthcare professionals, websites, and online network platforms. Nearly half reported difficulties accessing satisfactory health information. Greater diagnostic difficulty, difficulty finding a specialist, and higher perceived caring from healthcare professionals independently predicted engagement with a wider range of health information sources.

Conclusions

Patients with FMS frequently report dissatisfaction with their clinical experiences. Positive and negative diagnostic and treatment experiences are associated with the extent of health information-seeking among people with FMS. These findings highlight the importance of clinical experiences in shaping how patients seek health information and underscore the role of supportive clinical relationships in fostering informed and collaborative care.