Living with Eosinophilia myalgia syndrome
A complex condition with high eosinophil counts and severe muscle pain that can affect many organs.
Understanding Eosinophilia myalgia syndrome
Key features are a high count of white blood cells called eosinophils and muscle pain severe enough to limit daily activities. Doctors also check that infection or other conditions do not explain the high eosinophils. Tissue samples show widespread inflammation in connective tissue.
Signs & symptoms
GARD describes these features in its summary:
- High eosinophil count in the blood
- Muscle pain (myalgia) severe enough to limit activities
- Inflammation of the skin, muscle, and nerves
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
Your doctor may refer you to a specialist who knows rare conditions.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
American Partnership For Eosinophilic Disorders may keep lists of experts for this condition.
Care & treatment
- Care team
- A doctor familiar with rare conditions, plus specialists as needed
- Expert care
- Expert lists: American Partnership For Eosinophilic Disorders
- 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 American Partnership For Eosinophilic Disorders 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 doesn't describe a cause for this condition yet.
Also known as: ems; ems - eosinophilia myalgia syndrome; eosinophilia-myalgia syndrome
Patient organizations
- American Partnership For Eosinophilic DisordersEosinophilia myalgia syndrome · United States
- National Eosinophilia Myalgia Syndrome NetworkEosinophilia myalgia syndrome · United States
You are more than your diagnosis
Perspectives from people navigating life with Eosinophilia myalgia syndrome.
Explore research for Eosinophilia myalgia syndrome
Explore actively recruiting Eosinophilia myalgia syndrome studies with HealthSpark.
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- 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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