Living with Familial episodic pain syndrome
A rare inherited nerve condition with repeated episodes of intense pain in the upper body or legs.
Understanding Familial episodic pain syndrome
The pain mostly affects the upper body or the legs. Episodes can be brought on or worsened by tiredness, cold, fasting, weather changes, or physical stress. They may or may not lessen with age. Sweating, a fast heartbeat, trouble breathing, and paleness can come with them. It starts in newborns and infants.
Signs & symptoms
GARD describes these features in its summary:
- Repeated episodes of intense pain
- Pain in the upper body or legs
- Sweating
- Fast heartbeat
- Trouble breathing
- Paleness
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.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
The Foundation for Peripheral Neuropathy may keep lists of experts for this condition.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); Genetic specialists (geneticists)
- Expert care
- Expert lists: The Foundation for Peripheral Neuropathy
- 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 The Foundation for Peripheral Neuropathy 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
Changes in genes cause this condition. It is autosomal dominant, which means a change in one copy of the gene can cause it. GARD does not name the gene.
Also known as: feps; feps - familial episodic pain syndrome
Patient organizations
- The Foundation for Peripheral NeuropathyPeripheral neuropathy · United States
- Neuropathy Action FoundationPeripheral neuropathy · United States
You are more than your diagnosis
Perspectives from people navigating life with Familial episodic pain syndrome.
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