Living with Painful legs and moving toes syndrome
A rare adult movement condition with ongoing leg or foot pain and toes that twist on their own.
Understanding Painful legs and moving toes syndrome
It usually begins in adulthood. People have lasting pain in one or both feet or legs, along with twisting toe movements they can't control. The pain is often described as a deep, aching, pulling feeling.
Signs & symptoms
Symptoms vary from person to person. GARD describes these:
- Ongoing pain in the feet or legs
- Twisting, involuntary toe movements
- Deep aching or pulling pain
- Tingling or numbness
- Burning, sharp, or shooting pain
- Cramps
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 doesn't describe a cause for this condition yet.
Also known as: plmt syndrome
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 Painful legs and moving toes syndrome.
Explore research for Painful legs and moving toes syndrome
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