Understanding myositis and what it means for you

Learn about myositis, its symptoms, and subtypes with perspectives from the community

THIS ARTICLE IS ABOUT

Myositis affects a relatively small group of individuals, but for the people living with it, the impact is anything but small. In this article, you’ll learn what myositis is and how different subtypes can affect people’s experiences and symptoms. Understanding what myositis is can help you better understand the condition and feel more confident advocating for the care you deserve.

KEY CONTRIBUTORS*

Franco

Larisa

Marcia

Sanjay

QUICK LINKS

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What is myositis?
Living with myositis
Moving forward

This article is intended for educational purposes only and not as medical advice. It’s important to talk to your doctor regularly about any questions you have, including sharing your symptoms, so they can develop the treatment plan that’s right for you.

What is myositis?

Myositis isn’t just one thing. It’s a general term used to describe a range of conditions known as inflammatory myopathies.

Myositis is characterized by chronic inflammation of the muscles, leading to weakness, fatigue, and other symptoms that can impact daily life. While myositis primarily targets muscles, skin, lungs, and joints, other organs can also be affected.

The role of autoantibodies in myositis

The cause of myositis continues to evolve and to be researched. We know that myositis occurs when harmful autoantibodies attack muscles or other organs in the body. Myositis-specific autoantibodies (MSAs) often target specific proteins in the body that are associated with different subtypes of myositis and symptoms.

Myositis subtypes and symptoms

Subtypes of myositis include antisynthetase syndrome (ASyS), dermatomyositis (DM), inclusion body myositis (IBM), and immune-mediated necrotizing myopathy (IMNM) among others. These subtypes differ both in the kind of symptoms people experience and in their severity. That’s why no two myositis journeys look the same.

Living with myositis

The experiences of those living with myositis can vary quite a lot because of the different subtypes of myositis. Below are some snapshots of what some of our contributors have personally experienced. These are not meant to represent every subtype of myositis. The symptoms highlighted are common, but they are not all the symptoms associated with each subtype.

Antisynthetase syndrome (ASyS)

Sanjay, living with ASyS

“One day I was walking around; the next day I was in the hospital and couldn’t breathe. It just happened like that.”

Symptoms or complications may include:

Muscle and joint pain and weakness
Thin, cracked skin on hands
Breathing issues or problems due to interstitial lung disease

Dermatomyositis (DM)

Marcia, living with DM

“I had pain. I had these red dots all over. All of a sudden, going up stairs felt like I was trying to run a marathon.”

Symptoms may include:

Gradual, symmetric weakness of the muscles closest to the center of the body
Distinctive rash—often reddish, purplish, or violet in color
Difficulty swallowing (dysphagia)

Immune-mediated necrotizing myopathy (IMNM)

Larisa, living with IMNM

“I was in the best shape of my life. Little did I know that this disease was happening to me, and slowly but surely, I was starting to fall.”

Symptoms may include:

Severe muscle weakness affecting the muscles closest to the center of the body
Difficulty swallowing (dysphagia)
Myocarditis (inflammation of the heart muscles)

Inclusion body myositis (IBM)

Franco, living with IBM

“I focus on my quality of life and how I can maintain my autonomy safely, as much and as long as possible.”

Symptoms may include:

Asymmetric muscle weakness
Muscle weakness in the leg muscles or fingers (distal muscle weakness)
Difficulty swallowing (dysphagia)

Moving forward

Myositis is complex—so if you’re feeling overwhelmed, that’s okay. There is a lot to learn about this disease, and you don’t need to know it all right away.

As you move forward, understanding as much as possible may be empowering. Knowledge can help you to ask informed questions, recognize changes in your symptoms, and advocate for the care that you need based on your own experience.

As research continues to evolve, so will The Myositis Collab. Here, you’ll find resources designed to provide insights, deepen understanding, and support you in navigating the journey ahead. Whether you’re living with myositis or caring for someone with the condition, you are not in this alone.

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