Myositis Fatigue: Why It Happens and How To Manage It

When you’re living with myositis (idiopathic inflammatory myopathy), the fatigue can feel unrelenting. That heavy flu-like feeling can be constant, even when you haven’t done much at all.

And it’s not just in your head.

“Fatigue is extremely common in people with myositis,” says rheumatologist Soumya Chatterjee, MD. “More than half of people with myositis experience fatigue, and it can be quite severe.”

Dr. Chatterjee explains why myositis can drain your energy, and shares ways to help you manage fatigue.

Why myositis causes fatigue

There are a few reasons why myositis leaves you fatigued.

For starters, the condition itself causes inflammation throughout your body, which makes your system work in overdrive. That exhausted feeling can even start at the cellular level.

“Your cells’ mitochondria — often called the cells’ ‘energy factories’ — don’t function as well when you have myositis,” Dr. Chatterjee says. “That leads to lower energy production in your muscles, which contributes to fatigue and weakness.”

Other factors can make fatigue worse, including:

• Stress on your lungs: When myositis affects your lungs, even breathing can drain your energy reserves.
• Medications: Some myositis treatments, like long-term steroid use, can cause fatigue.
• Mental health toll: Depression and anxiety are more common in people with myositis, and both are closely linked with fatigue.
• Other health concerns: Low oxygen levels, anemia or thyroid problems can go hand-in-hand with myositis. And they can all contribute to fatigue.

“This isn’t just feeling tired because you have a chronic illness,” Dr. Chatterjee emphasizes. “There are real chemical and structural changes happening in your body that cause high levels of fatigue.”

How to manage myositis fatigue

Because fatigue has multiple causes, managing it often requires addressing both your physical and mental health. Dr. Chatterjee shares advice for getting some energy back.

Follow your care plan

The more myositis goes unchecked, the more it affects your muscles and the rest of your body. Living with other conditions, like lung disease or heart disease, can worsen fatigue, too. Taking care to manage your physical health can help you feel, and live, your best.

That means taking medications as prescribed and staying in close contact with your care team, especially if symptoms change or flare.

Exercise — even when you’re tired

When myositis fatigue has you craving your bed, exercise is probably the last thing on your mind. But the more you can push through, the better you may feel.

“Among all the treatments we have for fatigue, exercise is by far the most effective,” Dr. Chatterjee states.

But, you might be wondering, I’m completely exhausted, and I’m feeling weak. Isn’t exercise risky?

Here’s the rub: Avoiding movement can backfire. The less you exercise, the more you risk losing muscle and feeling even more fatigued.

“Exercise doesn’t harm the muscles — it helps them,” Dr. Chatterjee encourages.

It doesn’t have to be anything too intense. Gentle, low‑impact activity can give your muscles more energy. And it can lower inflammation.

Physical therapy is part of most myositis treatment plans. Your physical therapist may suggest exercises like:

• Strength training
• Stretching
• Walking
• Yoga

“We typically suggest a graded program — one that builds slowly over time,” he adds. “The more you work at it, the more you’ll be able to tolerate.”

Support your mental health

Living with a chronic condition like myositis can, understandably, affect your mood and your mental well-being. And it’s a two-way street. Living with mental health conditions like anxiety and depression can make myositis symptoms like fatigue worse, too.

“Treating your mental health is just as important as treating the physical disease,” Dr. Chatterjee reminds us.

Counseling, support groups and, when appropriate, medication can all play a role. And, yes: Most antidepressant and anti-anxiety medications are safe to take alongside myositis treatments.

Practice healthy habits

Caring for your overall well-being can also help manage fatigue.

• Sleep well. Poor sleep can worsen fatigue, promote inflammation and affect your mood.
• Pace yourself. Yes, movement is important, but finding a balance between too much and too little activity can help you break through fatigue without losing strength.
• Manage stress. Chronic stress affects your mind and body, adding to your fatigue. Practice stress reduction techniques, like breathwork, journaling and self-care.
• Follow a healthy diet. Prioritize anti-inflammatory foods, like fruits, veggies and lean protein. Not sure where to start? Take cues from the Mediterranean diet.

Final thoughts

Fatigue can be a real challenge when you’re living with myositis. Know that it’s not a reflection on you. It’s the result of very real biological changes in your body — not a lack of effort or a personal failing.

“This is a serious disease, and fatigue is part of that disease burden,” Dr. Chatterjee acknowledges.

Talk with your team about how fatigue is affecting your life. They can help you find ways to get back to the activities you love.