Living with Macrophagic myofasciitis
A rare muscle condition with muscle and joint pain, tiredness, and weakness after a past vaccination.
Understanding Macrophagic myofasciitis
GARD describes it as acquired, meaning not inherited. It is most often found in the shoulder (deltoid) muscle. Muscle tissue damage is typically absent. Symptoms usually develop slowly over several months and can start at a variety of ages.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Tiredness (fatigue)
- Fever
- Weakness in muscles throughout the body
- Joint pain (arthralgia)
- Muscle aches (myalgia)
- Thinking or memory problems (cognitive dysfunction)
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 brain and nervous system specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists)
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- 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 rare disease patient organizations for support
- 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 describes it as an acquired condition linked to immune cells with aluminum salt crystals at the site of an earlier vaccination. GARD does not list a gene or inheritance pattern.
Also known as: mmf; mmf - macrophagic myofasciitis
Patient organizations
Rare-disease groups that can help
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Macrophagic myofasciitis.
Explore research for Macrophagic myofasciitis
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- Recruiting studies from ClinicalTrials.gov
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- 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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