Post-Polio Syndrome

What causes post-polio syndrome?

Researchers are still trying to learn more about the possible causes of PPS. It may be caused by the way the nerves have to regrow after polio. This may overwork the nerve cells. The poliovirus may remain in the nervous system and become active again later, causing PPS. Or the immune system may attack the body’s own nerves.

Only people who've had polio are at risk for PPS. About 25% to 50% of people who had polio in the past may develop PPS. You may be more likely to get PPS if:

• You had a severe case of polio.

• You were a teen or adult when you first got polio, instead of as a young child.

• You recovered from most of your polio symptoms.

Symptoms of post-polio syndrome

PPS affects your nerves and muscles. Symptoms can occur 10 to 70 years after polio, but they usually start 20 to 40 years later. Muscle weakness is the main symptom. This weakness may affect one side of your body more than the other. The symptoms may get worse over time and may include:

• Weakness that gets worse (common).

• Fatigue (common).

• Pain in the muscles and joints (common).

• Shrinking of muscles.

• Trouble swallowing.

• Breathing problems.

• Curvature of the spine (scoliosis).

• Sleep disorders.

• Sensitivity to cold temperatures.

• Depression.

Diagnosing post-polio syndrome

Your doctor will ask about your health history and your symptoms. You will have a physical exam. You may have tests. Some tests are done to measure your muscle strength. Other tests may look for other causes of your symptoms. Tests may include:

• Blood tests, to rule out other causes for your muscle weakness.

• Electromyography, to measure the electrical activity of the muscles.

• Muscle biopsy, to look for signs of damage in the muscle cells.

• MRI or CT scans.

• Lumbar puncture (spinal tap) to analyze the spinal fluid.

Living with post-polio syndrome

There is no cure for PPS, but treatment can help you manage the condition. The goal of treatment for PPS is to reduce the impact of the condition on your daily life. You may use a cane or walker to save your energy and muscle strength. Make sure to get plenty of rest.

Special exercises

People with PPS may improve muscle strength with low-intensity muscle-strengthening exercises. These are known as non-fatiguing exercises. You may do these exercises in brief cycles. During the cycles, you exercise for a short period of time. Then you rest in between. It's important for people with PPS to avoid too much exertion. Doing these exercises in warm temperatures and in water may help.

Other kinds of treatment

You may get care from a variety of health care providers. You will work with your care team to create a plan of care. There is currently no medicine shown to stop or reverse the disease. Treatment usually focuses on easing symptoms. Sometimes orthopedic surgery may be done to correct deformities. Your care team might include:

• A neurologist.

• A physical therapist.

• An occupational therapist.

• A speech-language therapist.

• A respiratory specialist.

Some supportive treatments for people with PPS include:

• Assistive devices, like lightweight braces, canes, walkers, scooters, and wheelchairs.

• Medicines to relieve pain.

• Medicines to treat fatigue.

• Lifestyle changes, such as eating a healthy diet, getting enough sleep, and quitting smoking.

• Physical therapy to keep as much mobility as possible.

• Occupational therapy to help with ways to adapt.

• Speech-language therapy for swallowing problems.

• Assisted breathing with a positive pressure breathing machine if needed, especially at night.

• Emotional and psychological support.

Call 911

Call 911 if you have trouble breathing.

When to call your doctor

Contact your doctor right away if you have:

• Trouble swallowing.

• New symptoms.

• Symptoms that get worse.