Living in a body that locks up: Understanding stiff-person syndrome

Often misdiagnosed as anxiety or back pain, stiff-person syndrome can take years to detect. A neurologist breaks down causes and therapies

Stiff-person syndrome is a rare neurological disorder that causes progressive muscle stiffness and painful spasms, and because it develops gradually, it is often misunderstood in its early stages. What begins as occasional tightness or unexplained discomfort can slowly evolve into a disabling condition, yet many people spend years searching for answers before receiving the correct diagnosis.

 

According to Dr Kunal Bahrani, Chairman and Group Director, Neurology - Yatharth Hospitals, “Stiff-person syndrome is a rare neurological disorder marked by progressive muscle stiffness and painful spasms, primarily affecting the trunk and limbs.”

 

The condition is frequently misdiagnosed because its early symptoms are subtle and common. Patients may report back pain or muscle tightness, and these complaints are often attributed to orthopaedic problems or anxiety. Routine scans usually appear normal in the beginning, which further delays diagnosis, and many individuals are treated for muscle strain or fibromyalgia for years before the correct cause is identified.

 

Dr Bahrani explains, “The rarity of the condition means many clinicians may never encounter it, contributing to delayed recognition.” Early diagnosis requires strong clinical suspicion along with detailed history and specific antibody testing, and these tests are not always ordered at the outset.

 

Early signs that are easy to dismiss

 

In its initial phase, stiff-person syndrome can appear mild and intermittent, which makes it easy to overlook.

 

Early warning signs may include:

 

• Persistent tightness in the lower back or abdomen
• Difficulty standing for long periods
• Stiffness that worsens with stress
• Painful spasms triggered by sudden movement or emotional distress

 

Over time, the stiffness becomes constant and spreads to the limbs. Walking becomes difficult, falls become more frequent, and abnormal postures may develop. In severe cases, spasms are so intense that they can lead to fractures or muscle tears.

 

“As the disease progresses, everyday activities such as dressing, driving, or even turning in bed may become challenging,” says Dr Bahrani. Because the progression is gradual, many patients adapt quietly until significant disability sets in.

 

The autoimmune connection

 

Stiff-person syndrome is strongly linked to autoimmune dysfunction, and this link explains both its symptoms and its unpredictability.

 

Many patients have antibodies against glutamic acid decarboxylase or GAD, which is an enzyme that helps produce GABA. GABA is a neurotransmitter that allows muscles to relax, and when its activity is reduced, muscles remain in a constant state of contraction.

 

Dr Bahrani notes that SPS is also associated with other autoimmune diseases such as type 1 diabetes, thyroid disorders and vitiligo. This immune basis explains why symptoms can fluctuate and why immunomodulatory therapies can be effective, he adds.

 

However, not all patients test positive for known antibodies, and that adds complexity to both diagnosis and management.

 

Triggers and who is most at risk

 

Certain triggers are known to worsen stiffness and provoke spasms, and these triggers can make daily life unpredictable. They commonly include:

 

• Emotional stress
• Sudden loud noises
• Unexpected touch
• Cold temperatures
• Physical exertion

 

Even crowded places or fear of falling can set off severe spasms, and as a result, many patients begin to limit their movement. Unfortunately, reduced mobility can further increase stiffness, which creates a difficult cycle.

 

Stiff-person syndrome most often affects adults between 30 and 60 years of age and is more commonly seen in women. Individuals who already live with autoimmune diseases are at higher risk, although the condition itself remains rare.

 

Living with stiff-person syndrome

 

The impact of stiff-person syndrome extends far beyond physical symptoms, and it can deeply affect independence and emotional well-being.

 

A school teacher in her forties described how she slowly stopped taking public transport because sudden jerks or noise would trigger spasms. A corporate executive shared that he had to step away from client-facing roles because the fear of an episode during meetings became overwhelming.

 

Celine Dion, singer and global performing artist, widely known for powerful ballads such as My Heart Will Go On, also brought global attention to the condition when she publicly shared her diagnosis, and her openness helped many people understand the seriousness of this rare neurological disorder.

 

Dr Bahrani says, “Stiff-person syndrome can be deeply disruptive to daily life. Progressive stiffness and unpredictable spasms often limit mobility, independence, and the ability to work.” He adds that many patients experience anxiety, depression and social isolation, particularly after years of delayed diagnosis.

 

A multidisciplinary approach is essential, and should include medical treatment, physiotherapy, psychological counselling and strong family support. With structured care, patients can preserve function and dignity even in the face of a chronic illness.

 

Treatment options and what patients can expect

 

There is currently no cure for stiff-person syndrome, but treatment can significantly improve quality of life.

Management focuses on:

 

• Reducing muscle stiffness
• Controlling painful spasms
• Addressing the underlying immune process

 

Medications that enhance GABA activity, such as muscle relaxants and anti-spasm drugs, are usually the first line of therapy, and many patients experience meaningful relief. Immunotherapies, including intravenous immunoglobulin, steroids and other immunosuppressive agents, are used in selected patients and have shown benefit in reducing disease severity.

 

“While there is no cure, many patients experience improved mobility and quality of life with consistent treatment,” says Dr Bahrani. Physical therapy also plays a supportive role, although it must be carefully tailored because aggressive sessions can trigger spasms.

 

Greater awareness is slowly improving recognition of stiff-person syndrome, and earlier diagnosis combined with sustained support can make a meaningful difference in preserving independence and long-term wellbeing.     

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This report is for informational purposes only and is not a substitute for professional medical advice.