Myositis and Pain: Catching Medical Understanding Up to What Patients Already Knew

For decades, medical textbooks described myositis with a single, tidy phrase: painless weakness of the proximal arms and legs. If you live with myositis and have ever felt dismissed when you brought up pain to a doctor, that textbook line may be part of why.

We sat down with Dr. Didem Saygin, a clinician-researcher at Rush University Medical Center who studies pain in myositis, who says she still shows that exact textbook passage during her talks, right before she shows the data that contradicts it. In her research, roughly 80% of people with idiopathic inflammatory myopathies (IIM) report experiencing pain. About one in four are on chronic opioid medications for it. This isn’t a rare complaint. It’s close to the norm.

The pain was never the problem. The problem was that medicine hadn’t caught up to it yet. We talked with Dr. Saygin about why that gap exists, what’s actually driving myositis pain, and what patients can do about it.

The Doctor-Patient Disconnect on Disease Activity

Dr. Saygin’s research has found something striking. When doctors and patients are each asked to rate how active a person’s myositis is, they don’t always agree, and pain is one of the biggest reasons why.

Physicians tend to weigh things they can measure directly, like a strength exam, muscle enzyme levels in bloodwork, or a visible rash. Patients, on the other hand, experience their pain as very much part of their disease. When a flare happens, patients report their pain levels rising right along with it. But because pain historically wasn’t considered a “real” myositis symptom, it hasn’t carried the same weight in how doctors assess disease activity.

In a recent survey, Dr. Saygin’s team asked patients how well they felt their care team understood their pain. Over 70% said they didn’t feel their pain was well understood. That’s not a small gap. It reflects a disease-wide blind spot that’s only recently starting to close.

3 Different Kinds of Pain and Why it Matters

One of the most useful things Dr. Saygin shared is a framework pain specialists use to sort pain into three types. Knowing which type (or types) you’re dealing with can change what kind of treatment is likely to actually help.

Nociceptive pain is caused by real, active tissue damage. Think of it like a cut on your skin. In myositis, this would be active inflammation in the muscle itself. Your nerves detect the injury and send a “something’s wrong here” signal to your brain. This is your body’s normal protective alarm system doing its job, and this kind of pain tends to ease up as the underlying inflammation is treated and the tissue heals.

Neuropathic pain works differently. Here, the nerve itself is injured, even though the surrounding tissue may be fine. It often feels distinct from nociceptive pain, more of a burning or tingling sensation rather than a throbbing ache. Because the problem lives in the nerve, this type tends to respond better to nerve targeted medications rather than anti-inflammatory treatment alone.

Nociplastic pain is the least intuitive of the three. Here, both the tissue and the nerves are essentially fine. The problem is in how the brain is processing pain signals. Dr. Saygin uses the analogy of a smoke detector going off with no fire: the alarm system has gotten stuck in the “on” position. This type of pain doesn’t respond to healing tissue or treating nerves directly. Instead, things like cognitive behavioral therapy (CBT), water based physical therapy, and certain nerve calming medications (like gabapentin) tend to help more.

Knowing which category, or combination of categories, applies to your pain can help you and your doctor figure out whether more anti-inflammatory treatment is actually the right next step, or whether something else needs to be added to the plan.

What happens to pain when the underlying disease gets treated?

According to Dr. Saygin’s longitudinal research, when patients start treatment for their underlying autoimmune disease, about half see meaningful improvement in their pain. That’s real, welcome news. But it also means the other half of patients continue to have persistent pain even when their disease is being actively treated.

For that second group, researchers are still working to figure out what’s going on. A few possibilities they’re exploring:

• The brain’s pain signals staying “switched on” (the nociplastic pattern described above) — a pattern that’s also been seen in other autoimmune conditions like lupus and rheumatoid arthritis over time.
• Muscles overworking to compensate. When myositis damages or weakens certain muscles, other muscles often have to pick up the slack. That extra strain can become its own separate source of pain.
• Inflammation in the tissue around the muscle, called fasciitis. This is more common in certain forms of myositis, like dermatomyositis and antisynthetase syndrome. Because that tissue is full of nerve endings, inflammation there may cause pain on its own.

Addressing the Stigma of Cognitive Behavioral Therapy

If a doctor has ever suggested cognitive behavioral therapy (CBT) for your pain and it felt like they were implying “it’s all in your head,” you’re not alone in that reaction, and it’s worth addressing head-on.

Dr. Saygin was clear that this isn’t what CBT is about. Her explanation: when pain signals fire constantly, day after day, the nervous system’s activation patterns can genuinely change over time. This isn’t something within a patient’s control, and it isn’t imagined. In rheumatoid arthritis, researchers have used functional brain imaging to show measurably higher activity in pain processing regions of the brain in patients with chronic pain. Dr. Saygin hopes to conduct similar imaging studies in myositis to demonstrate the same thing.

In other words, CBT for nociplastic pain isn’t treatment for a psychological problem. It’s a tool aimed at retraining a nervous system that has become over-sensitized, a real, physical process, even if it plays out in the brain rather than the muscle.

What to Bring to Your Next Appointment

If you feel your pain hasn’t been taken seriously, Dr. Saygin’s advice is practical: bring the research with you. She pointed to two papers in particular that patients are welcome to share with their care team:

• A review article titled “Pain and Myositis,” published in Clinical and Experimental Rheumatology, freely available to read, and a good overview of how common myositis pain is, how it presents, and how doctors can approach evaluating it.
• An original research article on the prevalence of pain in myositis, published in Arthritis Care & Research.

So much of the medical understanding of myositis pain is genuinely recent. Dr. Saygin noted that pain in myositis has only been seriously studied over roughly the last decade, which means many doctors simply learned an outdated picture of the disease in their training. Bringing current research to the conversation isn’t about proving a doctor wrong. It’s about closing a knowledge gap that’s still catching up to what patients have known all along.

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