Let’s talk about pain, the new important domain to assess and address in adult myositis—a qualitative study: a MIHRA collaboration
Authors' conclusion
Pain is a key symptom of myositis, impacting many aspects of daily life and varies in character, location and duration. Although pain can be treated, it may persist as a chronic symptom, often worsening during flares.
Study context
- Population
- Adults with myositis (PM n = 5, DM n = 3, ASyS n = 2); six women, age 28–71 years; median VAS pain 59 mm (range 30–84 mm)6 women
- Participants
- 10 adults
- Outcome
- Experiences of pain in adults with myositis
Methodological detailsindividual semi-structured interviews, inductive qualitative content analysis, strategic sampling
- Individual semi-structured interviews
- Inductive qualitative content analysis
- Strategic sampling
Main finding
As reported in the abstract
Experiences of pain in adults with myositis (themes from qualitative content analysis)
- Theme 'Myositis pain-a new experience': myositis-related pain is unique and heterogeneous as to character, localization and duration; can be chronic and fluctuate with disease activity; adapted exercise and medical treatment can reduce pain; activity balance and coping strategies are keys to manage daily activities and pain
- Theme 'Pain impacts my life and my significant others': pain impacts self-perception and roles in life, with additional impact on family and friends; frustration and sadness about others' inability to understand their pain
- Theme 'Education and support are key': importance of knowledgeable health care providers to reduce the misinformation that myositis is a painless disease
- Three overarching themes emerged
Original publication
Let’s talk about pain, the new important domain to assess and address in adult myositis—a qualitative study: a MIHRA collaboration. Rheumatology (Oxford). Published 29 November 2025. doi:10.
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