Patient Perspectives of Disease Activity, Medications and Substance Use in People with Fibromyalgia

Objective To explore patient perspectives on disease activity and experiences, as well as medication use of a group of fibromyalgia patients attending a single-centre rheumatology public hospital outpatient setting. Methods Patients seen in fibromyalgia clinic within a rheumatology unit from July 2016 to December 2019 were posted a voluntary survey with questionnaires pertaining to patient-reported measures of disease impact (FIQR), fatigue (MFI-20) and psychological distress (K10). A free-text section allowed description of disease impact. Patients were also asked to record medication use and comorbidities, which were then compared to the electronic medical records (EMR) of the overall clinic cohort. Results Forty-five patients responded to the survey (43/45, 95.6% female; mean age 56.5 years). Respondents had generally severe fibromyalgia (mean FIQR 67.1/100, range 23.7–92.8), moderate psychological distress (mean K10 27.5/50, range 14–45) and high fatigue (mean MFI 74.9/100, range 40–96). Free-text responses generated themes of pervasive disease impact and the necessity of adjusting life around unpredictable symptoms. Almost half reported opioid (21/45, 46.7%) and gabapentinoid (19/45, 42.2%) use. 16/41 (39%) use cannabinoids for their fibromyalgia symptoms. Comparing medication use with survey non-respondents (n=85), there was generally similar representation except for significantly greater NSAID use among survey respondents (33/45, 73.3% vs 22/85, 25.9%, p<0.001). Conclusion For patients living with fibromyalgia in this study, there were high levels of disease activity, psychological distress and fatigue. Patients described the need to accept disease-imposed limitations and life adjustments. Almost half reported opioid use, despite evidence suggesting poor efficacy and possible harm.