12053 Polymyositis

Overview

Polymyositis (say: pol-ee-my-oh-SY-tis) is a rare disease that causes inflammation and weakness in your muscles. It mostly affects the muscles closest to the center of your body, like the shoulders, hips, neck, and back. This can make everyday actions such as lifting your arms, climbing stairs, or getting up from a chair feel very hard.

No, polymyositis is rare. It affects about 1 in 100,000 people each year, so your doctor may not see it very often.

It can happen at any age, but it most often affects adults between 40 and 60. Women are affected more often than men.

Symptoms

Common symptoms

• Progressive muscle weakness, especially in the hips, thighs, shoulders, and neck
• Difficulty climbing stairs, getting up from a chair, or lifting objects
• Difficulty reaching your arms above your head
• Muscle pain, tenderness, or swelling
• Fatigue and feeling generally unwell
• Trouble swallowing or a feeling of food sticking

Causes

Main causes

• An abnormal immune system response where your body's defenses attack healthy muscle fibers
• A trigger such as an infection (like a virus) may start this process in some people
• The exact cause is still unknown, and it is not contagious
• Sometimes it occurs alongside another autoimmune disease, like lupus or rheumatoid arthritis

Risk factors

• Being a woman
• Being between 40 and 60 years old
• Having a family history of autoimmune disease
• Having another autoimmune condition
• Certain infections may act as a trigger

When to see a doctor

See a doctor urgently if:

• If you notice muscle weakness that is getting worse over days, especially if it affects your ability to walk, stand, or breathe
• If you have difficulty swallowing or feel weak in your chest
• If you have very dark urine or severe muscle pain

Book a routine appointment if:

• If you have ongoing muscle weakness that does not go away after a few weeks
• If you have difficulty doing normal activities like climbing stairs or lifting bags
• If your muscles feel painful or tender most of the time

Diagnosis

Your doctor will start by asking about your symptoms and doing a physical exam. They will check your muscle strength and look for weakness in the shoulders, hips, and neck. Because polymyositis is rare, you will likely be referred to a specialist such as a rheumatologist (joint and muscle doctor) or a neurologist (nerve and muscle doctor).

Tests that may be done

• Blood tests to check for muscle enzymes like creatine kinase, which are released when muscle is damaged
• Electromyography (EMG), a test that checks the electrical activity in your muscles
• Magnetic resonance imaging (MRI) scans to see areas of inflammation
• A muscle biopsy, where a small sample of muscle tissue is taken and examined under a microscope to confirm the diagnosis

What to expect at your appointment

Getting a diagnosis may take a few weeks because other conditions need to be ruled out. The specialists will guide you through the tests and explain each step. You may have several appointments, but you do not need to face it alone — your care team will be with you.

Treatment

Treatment for polymyositis focuses on reducing muscle inflammation, easing pain, and helping you recover strength. The earlier it is treated, the better the chance of preventing permanent muscle damage. Most people need a combination of medicines, physiotherapy, and lifestyle changes.

Self-care at home

• Get plenty of rest during flare-ups and pace yourself during the day
• Ask for help with heavy tasks when you need it
• Try gentle activities like walking or stretching between rest periods
• Use adaptive aids, such as long-handled tools, to make tasks easier
• Keep a symptoms diary to notice what makes you feel better or worse

Medical treatments

Your doctor may prescribe steroid-type medicines (called corticosteroids) to quickly reduce inflammation. For people who do not improve fully, doctors may also use other medicines that calm the immune system (immunosuppressants) to help control the disease over a longer period. Some people may receive intravenous immunoglobulin, which is given through a vein. All of these options are tailored to your individual needs — always discuss the risks and benefits with your specialist.

When is surgery considered?

Surgery is not a normal part of polymyositis treatment, but in rare cases it may be needed if complications develop, such as severe joint contractures or calcium deposits under the skin. Your doctor will only discuss surgery if it is truly necessary.

Living with this condition

Living with polymyositis means learning to listen to your body. Some days you feel stronger, and other days you may need more rest. Plan your important activities for the times when you have the most energy, and do not be afraid to accept help from family and friends.

Lifestyle tips

• Set realistic daily goals and celebrate small wins
• Stay socially connected — isolation can make symptoms feel worse
• Manage stress through relaxation techniques, mindfulness, or hobbies you enjoy
• Talk openly with your employer or school about what you need
• Keep good communication with your healthcare team and tell them about any changes

Diet and exercise

Eating a balanced diet with plenty of fruits, vegetables, lean proteins, and whole grains helps support your muscles and overall health. Moderate, low-impact exercise such as swimming, stationary cycling, and gentle stretching can help maintain muscle strength and flexibility. A physiotherapist can design a safe exercise plan for you — it is important not to overdo it during a flare-up.

Mental health and emotional wellbeing

Living with a chronic condition can be emotionally challenging. You may feel frustrated, anxious, or down at times. These feelings are normal. Talk to your doctor if you are struggling — counseling and psychological support can make a real difference.

Prevention

There is no known way to prevent polymyositis because it is an autoimmune disease. However, early diagnosis and treatment can help prevent serious complications and muscle damage.

Vaccines

It is generally a good idea to keep your vaccinations up to date to reduce the risk of infections, which can trigger flare-ups. Because some treatments can weaken the immune system, talk to your doctor or pharmacist about which vaccines are safe and recommended for you.

Screening programmes

There is no routine screening test for polymyositis in the general public. Regular check-ups are important if you have symptoms or if you are being treated for the condition.

Complications

If left untreated

• Permanent muscle wasting and severe disability
• Difficulty swallowing, which can lead to weight loss or choking
• Breathing problems caused by weakened breathing muscles
• Increase risk of falls and fractures
• Long-term inflammation may also affect the heart or lungs

Long-term outlook

The outlook for polymyositis is better than many people think. With early treatment, most people see big improvements in muscle strength, and many are able to return to normal or near-normal activities. It may be a lifelong condition that needs managing, but with a good care team and support, you can live a full and meaningful life.

Find support

International organisations

• The Myositis Association ↗
• Myositis UK ↗

External links open third-party websites. Ruqelo Health is not responsible for external content. Listing an organisation does not imply endorsement.