For many years, myositis has been known as a disease that causes muscle weakness, fatigue, and inflammation. However, a new study reminds us that pain is also an important part of life for many people with myositis. Researchers spoke with adults living with polymyositis, dermatomyositis, and antisynthetase syndrome to learn more about their experiences with pain and how it affects their daily lives.
The study included 10 adults between the ages of 28 and 71. Researchers conducted in-depth interviews, allowing participants to describe their pain in their own words. By listening to these personal experiences, the researchers gained a better understanding of an often-overlooked symptom of myositis.
One of the strongest messages from the study was that myositis-related pain is not the same for everyone. Participants described pain in different ways. Some experienced aching muscles, while others felt burning, stabbing, or deep discomfort. Pain could occur in different parts of the body and could change over time. For some people, pain was present every day. For others, it became worse during disease flares when inflammation increased.
Many participants said they had never experienced this type of pain before developing myositis. They described it as a “new” kind of pain that affected their lives in ways they had not expected. The pain often made everyday activities more difficult, including work, household chores, exercise, and social events.
The study also found that pain affects more than just the body. It can influence emotions, relationships, and self-confidence. Participants talked about feeling frustrated when other people did not understand what they were going through. Because pain is invisible, family members, friends, and even some healthcare providers may not realize how much it affects a person’s life. This lack of understanding sometimes led to feelings of sadness and isolation.
Another important finding was that pain can affect family members and loved ones as well. When a person with myositis is struggling with pain, daily routines may need to change. Family members may take on extra responsibilities or worry about the person’s well-being. This shows that pain has a ripple effect that extends beyond the individual patient.
Despite these challenges, participants shared several strategies that helped them manage pain. Many found that carefully planned exercise, medical treatments, and balancing activity with rest could reduce symptoms. Learning personal coping strategies also helped people continue participating in activities that were important to them. While pain might not disappear completely, these approaches often made it more manageable.
The researchers identified a third major theme: the need for education and support. Several participants said they had encountered the misconception that myositis is a painless disease. They stressed that healthcare providers should recognize pain as a real and important symptom. Better education could help patients receive more appropriate care and feel understood.
The study’s conclusion is clear: pain should be considered a key symptom of myositis. Even when treatments help control inflammation, pain may continue and can significantly affect quality of life. Researchers believe healthcare professionals should ask about pain regularly and address it throughout the course of the disease, not only during flares.
For the myositis community, this research provides important validation. Many patients have long reported that pain is a significant part of living with the disease. By listening directly to patients’ experiences, researchers are helping to ensure that pain receives the attention it deserves in both clinical care and future research.
“Let’s Talk About Pain: A New Important Domain to Assess and Address in Adult Myositis—A Qualitative Study” by former TMA medical advisor Malin Regardt, PhD, OT and colleagues at Karolinska Institute in Sweden, published in Rheumatology in 2025.
