Living with Stiff-person syndrome
A rare nervous system condition with muscle stiffness and painful spasms that can limit movement.
Understanding Stiff-person syndrome
Muscles in the trunk and limbs become stiff and rigid and can have painful spasms. Noise, sudden movements, or emotional distress can set off spasms. Over time, the spine may take on an abnormal posture, such as being hunched. It affects twice as many women as men. It is thought to have an autoimmune part and is often linked to diabetes and other autoimmune conditions.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Muscle stiffness and rigidity
- Painful muscle spasms
- Spasms set off by noise or sudden movement
- Trouble walking and falls
- Anxiety and fear of open spaces
- Trouble swallowing
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 hormone specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Autoimmune Association and The Stiff Person Syndrome Research Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); Hormone specialists (endocrinologists)
- Expert care
- Expert lists: Autoimmune Association, The Stiff Person Syndrome Research Foundation
- 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 Autoimmune Association 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
SPS is caused by increased muscle activity from less inhibition in the central nervous system. It is thought to have an autoimmune part.
Also known as: gamma neuron overactivity syndrome; moersch-woltman syndrome; sms; sps; stiff man syndrome; stiff person spectrum disorder
Patient organizations
- Autoimmune AssociationStiff-person syndrome · United States
- The Stiff Person Syndrome Research FoundationStiff-person syndrome · United States
You are more than your diagnosis
Perspectives from people navigating life with Stiff-person syndrome.
Explore research for Stiff-person syndrome
Explore actively recruiting Stiff-person syndrome studies with HealthSpark.
Find actively recruiting studies for Stiff-person syndrome with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- Eligibility is confirmed by the study team
Powered by HealthSpark, our AI chat helper
I can help you find recruiting Stiff-person syndrome studies. Enter a ZIP code, address or city below and I'll look within 50 miles.
Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
Get Signals for Stiff-person syndrome
Stay in the loop with community stories and updates from medical researchers.
Create a living journal that talks back
HealthStory evolves private journaling with a living AI journal that talks back and asks thoughtful questions, helping you capture your Stiff-person syndrome experiences more deeply and prepare for better conversations with your doctors and care team.
Your journal is private. Sharing your story publicly is a separate choice, made with Share your story above.