Living with Cramp-fasciculation syndrome
A rare genetic nerve condition in adults that causes painful muscle cramps and twitching.
Understanding Cramp-fasciculation syndrome
It starts in adulthood. It also causes stiffness, muscle pain, and brisk reflexes. Other signs of an overly sensitive nervous system can include asthma, acid reflux, migraine, tremor, sensitivity to cold, and heart rhythm conduction problems. Some people have nerve pain, thinking problems, and anxiety.
Signs & symptoms
GARD doesn't list specific symptoms for this condition yet. Its summary mentions these:
- Painful muscle cramps
- Muscle twitching (fasciculations)
- Muscle stiffness and pain
- Brisk reflexes
- Migraine and tremor
- Nerve pain
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 and genetic specialists.
- 3Consider genetic testing
Changes in TRPA1 are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); Genetic specialists (geneticists)
- 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
It is caused by changes in the TRPA1 gene. It is autosomal dominant, meaning one changed copy of the gene can be enough to cause it.
Also known as: benign fasciculation cramp syndrome; benign fasciculation-cramp syndrome; syndrome of foley and denny-brown
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 Cramp-fasciculation syndrome.
Explore research for Cramp-fasciculation syndrome
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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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