Imagine suddenly going as rigid as a board. Those who have experienced what stiff person syndrome is don’t have to rely on imagination. They know how this condition affects their life — what they often lack is the understanding of other people. 

Learning what stiff person syndrome is builds empathy for those with the condition. If you’re among those with stiff person syndrome, furthering awareness can help you and others get the care you need. Here’s what you need to know. 

What Is Stiff Person Syndrome? 

Stiff person syndrome is a rare disorder named after the symptoms that originally described the syndrome — namely, muscles that lock up on occasion, becoming as stiff as boards. Although the condition was once called “stiff man syndrome,” SPS occurs more frequently in women. 

What Causes Stiff Person Syndrome? 

The causes of stiff person syndrome remain partially shrouded in mystery. Scientists believe it is an autoimmune disorder, which occurs when your body’s innate defenses begin to attack healthy tissues. People with SPS have unique antibodies in their blood that block the antibodies you need to make GABA. 

GABA is a neurotransmitter that functions like the body’s natural Valium. It facilitates nerve function, but when you have an imbalance, it interrupts nerve signals resulting in unpleasant physical and mental symptoms. 

SPS often occurs with other autoimmune conditions, such as thyroid disease and Type 1 diabetes. It may also occur in conjunction with cancer, a condition called paraneoplastic SPS. 

What Are the Symptoms of Stiff Person Syndrome? 

The symptoms of stiff person syndrome vary depending on the type you have. However, all forms of the disorder share these characteristics:

• Stiffness in various muscle groups
• Muscle spasms
• Difficulty walking or moving normally
• Lack of coordination 
• Slurred speech
• Chronic pain 

Some people with SPS experience shortness of breath if their condition affects their chest muscles. Many people with SPS develop agoraphobia, a type of anxiety marked by a fear of going outside or into unfamiliar situations because of prior falls or embarrassment from a lack of coordination. 

What Are the Different Types of Stiff Person Syndrome? 

Stiff person syndrome is a continuum, and people with various types experience slightly different symptoms. Types of SPS include: 

• Classic SPS: Typically marked by spasms in the lower back and legs, sometimes the abdomen. 
• Partial SPS: In this form, the symptoms usually limit themselves to a specific limb, such as one leg. 
• SPS Plus: This condition includes visual disturbances and slurred speech suggestive of brain stem dysfunction. 

Other disorders of the cerebrum and brain stem — parts of your brain — can also cause SPS-like symptoms. 

How Is Stiff Person Syndrome Diagnosed? 

Getting a diagnosis for stiff person syndrome can be challenging, as your doctor must rule out other conditions that can cause muscle stiffness and spasms. However, it’s also critical to getting the accommodations you need to function well in daily life. SPS can interfere with your career and make some types of work challenging. Unfortunately, the stress from the resulting financial difficulties can worsen symptoms. 

Your doctor may perform several types of tests to diagnose SPS:

• Blood tests, specifically for the GAD65 antibody, which 80% of SPS patients have. Your doctor can also look for the glycine receptor and amphiphyson antibodies and various nutritional deficiencies. 
• Electromyography measures your body’s muscle and nerve function. 
• Lumbar puncture can rule out other symptom causes and reveal the GAD65 antibody. 
• Imaging studies such as MRIs, CT and PET scans can also rule out contributing factors such as cancer. 

How Do Doctors Treat Stiff Person Syndrome? 

Doctors take multiple approaches to treating stiff person syndrome. Your SPS regimen largely depends on your symptoms. 

Is Stiff Person Syndrome Dangerous? Is It Fatal?

Although stiff person syndrome is rarely fatal, problems can arise from complications. For example, blood clots can form from long periods of immobility. If they travel to your lungs, they can cause a fatal embolism. Rarely, chest muscle spasms can also impair breathing. 

Possible Treatments for Stiff Person Syndrome

Your doctor may use any combination of the following to treat SPS. 

• Oral muscle relaxers such as tizanadine and clonazepam can reduce spasms. 
• Other oral medications that work on your GABA receptors, such as gabapentin and pregabalin
• Botox for muscle spasms
• SSRIs for anxiety related to symptoms
• Immunosuppressant therapies to prevent your body from attacking GABA
• Physical therapy 

What Adaptations Make Life With Stiff Person Syndrome Easier? 

Fortunately, certain holistic interventions can make life with SPS less burdensome and ease your symptoms naturally. While they aren’t a substitute for professional care, they can help and serve as adjuncts to traditional remedies. 

1. Yoga 

Yoga increases your body awareness, making you conscious of how your thoughts and emotions influence physical wellness. While not a cure, it can ease the stress that often worsens symptoms. It also gradually trains you to notice subtle signs of a flare and practice deep breathing when you feel tension begin to climb, which may ward off some attacks. 

2. Qi Gong and Tai Chi 

Like yoga, these ancient forms of exercise focus on body awareness and breath-body movements to improve your mental and physical health. 

3. Aquatic Exercise

Water supports a considerable percentage of your body weight. People with SPS may find such workouts more accommodating, allowing them to focus on what they can move without losing balance. Water also provides gentle resistance to tone muscles grown weak from inactivity. 

4. Massage 

Massage stimulates blood flow to stiff areas. Additionally, certain techniques, such as myofascial release, can ease muscle spasms. It’s best if you can find a therapist familiar with SPS. Some patients find modalities like hot stones and aromatherapy massage especially beneficial for relieving tension and easing spasms. 

5. Heat Therapy 

Heat therapy can also ease muscle spasms and pain from SPS. It can be as simple as applying a heating pad to the affected area. Other options include saunas, steam rooms and hot tubs for all-over heating. Drawing a hot bath at home is a good alternative if a gym membership doesn’t fit into your budget. 

Stiff Person Syndrome

Stiff person syndrome is a rare autoimmune condition affecting your body’s GABA channels. It causes frustrating, painful symptoms such as muscle spasms and difficulties with mobility. 

Learning what SPS is builds empathy towards those with the condition. Spreading awareness helps everyone get the diagnosis and assistance they need to lead a fulfilling life despite health challenges.