
Living with Polymyositis
A condition that causes long-lasting muscle inflammation and weakness on both sides of the body, mostly in adults.
Understanding Polymyositis
It affects the skeletal muscles used for movement, on both sides of the body. It appears mostly in adults and older adults and is more common in women and Black individuals. It shares features with autoimmune disorders, where the immune system mistakenly attacks healthy tissue. It may be linked to viral infections, connective tissue disorders or an increased cancer risk.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Weakness of the upper arms and thighs
- Muscle aches and joint pain
- Tiredness (fatigue)
- Fever and weight loss
- Shortness of breath with activity
- Cough
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include autoimmune and inflammatory disease specialists, brain and nervous system specialists and kidney specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Autoimmune Association, Global Autoimmune Institute and Muscular Dystrophy Association may keep lists of experts for this condition.
Care & treatment
- Care team
- autoimmune and inflammatory disease specialists (rheumatologists); Brain and nervous system specialists (neurologists); Kidney specialists (nephrologists)
- Expert care
- Expert lists: Autoimmune Association, Global Autoimmune Institute, Muscular Dystrophy Association
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with Autoimmune Association and other patient organizations
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
GARD says the exact cause is unknown. It shares many features with autoimmune disorders, and some cases are linked to viral infections, connective tissue disorders or cancer.
Also known as: neuromyositis; pm; pm - polymyositis
Patient organizations
- Autoimmune AssociationPolymyositis · United States
- Global Autoimmune InstitutePolymyositis · United States
- Muscular Dystrophy AssociationPolymyositis · United States
- Myositis Support and UnderstandingPolymyositis · United States
- The Myositis AssociationPolymyositis · United States
- Arthritis FoundationPolymyositis · United States
- National Kidney FoundationKidney diseases · United States
- Renal Support NetworkKidney diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Polymyositis.
Explore research for Polymyositis
Explore actively recruiting Polymyositis studies with HealthSpark.
Find actively recruiting studies for Polymyositis with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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