Beyond weakness: pain and other under-studied symptoms in adults with inflammatory myopathies

Idiopathic inflammatory myopathies (IIM) are heterogeneous autoimmune diseases with a broad and often underappreciated symptom burden extending beyond organ-specific manifestations. While traditional research has emphasized muscle weakness and other clinical features, less visible symptoms remain insufficiently captured. This review highlights these under-recognized but impactful domains for patients living with IIM.

Pain, fatigue, depression, incontinence, sleep disturbance, cognitive dysfunction, and sexual dysfunction are common, inter-related, and closely linked to disease activity and functional impairment, and significantly impact health-related quality of life among patients with IIM. While recent studies increasingly demonstrate pain and fatigue as the key drivers of patient-perceived disease burden, the research studies on other domains are scarce.

This review highlights the importance and prevalence of several under-recognized patient-prioritized symptoms and identifies the areas of critical knowledge gaps that warrant further investigation. Holistic and patient-centered management approach in IIM involves adoption of patient reported outcome measures assessing these key disease aspects and multidisciplinary teams that are equipped with diverse skillsets to improve patient outcomes.