Understanding online discussions related to pain among patients living with myositis

Idiopathic inflammatory myopathies (IIM) have historically been considered to cause painless muscle weakness. However, recent studies suggest that pain can be an important symptom for patients with IIM. This study aims to examine the discussions related to myositis and pain on Reddit to understand its frequency and impact. Reddit posts from Academic Torrents were searched for myositis-related terms using the Pushshift archive. A two-step cleaning process was used, including a large language model-based classification, to retain posts describing suspected or confirmed IIM. Posts were analyzed for pain descriptors and anatomical regions. A semantic network of the top 500 pain posts was built to map connections between descriptors, body regions and experiences. The dataset included 1,529 IIM-related Reddit posts written by 968 unique authors. Pain-related terms were present in 63.0% of the posts. Pain was described using qualifiers reflecting chronicity and severity, including "chronic", "constant" and "severe" pain. Muscle was the most frequently mentioned body region (18.5%) in pain-related posts. Semantic network analysis showed nine distinct communities, showing that pain-related discussions were closely integrated with core disease concepts such as myositis, muscle involvement, and weakness. Additional clusters reflected dermatomyositis-related skin features, sensory and neuropathic pain experiences, and comorbid autoimmune conditions. Pain is a common topic among people discussing myositis on Reddit. Results suggest pain as a prevalent symptom and highlight the need for more research to understand the pain to help provide more effective strategies for management.