What is post-polio syndrome?

Post-polio syndrome (PPS) is a disorder of the nerves and muscles. It happens in some people many years after they have had polio. PPS may cause new muscle weakness that gets worse over time, pain in the muscles and joints, and tiredness. People with PPS often feel exhausted.

Polio is a contagious disease caused by the polio virus. It can spread through body fluids. It most often strikes young children. Severe polio may lead to paralysis and breathing problems.

In the U.S., an epidemic of polio peaked in the early 1950s. Polio vaccines helped to wipe out polio in the U.S. and almost everywhere else. But polio is making a comeback. There have been recent outbreaks around the world.

Symptoms of polio can range from a mild, flu-like illness to serious muscle paralysis. Many people who survive polio are later at risk for PPS.

PPS happens in some people who have recovered from polio. It starts an average of 35 years after the original polio and may eventually make it hard to breathe. PPS may cause the muscles to shrink.

What causes post-polio syndrome?

The cause of PPS is still not clear. Some experts think it may have to do with the way that the nerves have to regrow branches. This may overwork the nerve cells after a bout of polio. Another idea under investigation is that the virus “sleeps” in the nervous system. It reactivates later, causing PPS. It is also possible that the immune system somehow gets mixed up and attacks the body’s own nerves. Researchers are still trying to learn more about the possible causes of PPS.

What are the symptoms of post-polio syndrome?

PPS affects your nerves and muscles. Symptoms usually start between 20 and 40 years after the original polio illness. But they may appear anywhere from 10 to 70 years after. Muscle weakness may be the main symptom. This weakness may affect one side of your body more than the other. In general, symptoms of PPS may include:

• Progressive weakness (common)

• Tiredness (fatigue) (common)

• Pain in the muscles and joints (common)

• Muscle shrinkage

• Trouble swallowing

• Breathing problems

• Sleep disorders

• Sensitivity to cold temperatures

You may find that your symptoms get more noticeable. Nerves and muscles may continue to decline over time. Specially designed exercise programs and physical therapy may help improve some of the muscle weakness.

How is post-polio syndrome diagnosed?

PPS only develops in people who once had polio. Your healthcare provider will ask about your health history, your recent symptoms, and other health conditions. The provider typically does a physical exam and tests your muscle strength. You may need testing that includes:

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

• Electromyography (EMG) to measure the electrical activity of the muscles

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

• MRI or CT scans

Your healthcare provider may make a diagnosis of PPS if you had polio in the past, have new muscle weakness and other symptoms that last for a year, and have no other cause for your symptoms.

You may first see your primary healthcare provider and then be referred to a specialist, such as a neurologist who specializes in neuromuscular diseases.

How is post-polio syndrome treated?

There is no cure for PPS. But supportive therapies 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. You may need to make sure you get plenty of rest.

People with PPS who have new muscle weakness and tiredness (fatigue) may improve muscle strength with specially designed, low-intensity, muscle-strengthening exercise programs known as nonfatiguing exercises . You may do these exercises in brief cycles, in which short repeats of exercise alternate with periods of rest in between. It's very important for people with PPS to not do too much exertion. Exercising in warm temperatures and in water may improve your well-being.

In addition to the exercise program, other supportive therapies that you may use include:

• Devices, such as lightweight braces, canes, walkers, scooters, and wheelchairs, that provide assistance

• Medicines to ease pain

• Medicines to ease fatigue

• Physical therapy to keep as much mobility as possible

• Occupational therapy to help with ways to adapt

• Speech-language therapy if needed for trouble swallowing

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

• Emotional and mental health support

You may get care from a variety of providers in addition to your neurologist. These might include physical therapists, occupational therapists, speech-language therapists, and respiratory specialists. You can work with your medical team to design the best plan of care for your situation.

Key points about post-polio syndrome

• PPS is a disorder that happens in as many as half of people many years after they had polio.

• The symptoms include progressive muscle weakness, pain in the muscles and joints, and tiredness.

• Some people with PPS may eventually need a machine to help with breathing.

• Prescribed special exercise programs, devices that provide assistance, physical therapy, occupational therapy, and medicines may all help you manage the symptoms of PPS.

Next steps

Tips to help you get the most from a visit to your healthcare provider:

• Know the reason for your visit and what you want to happen.

• Before your visit, write down questions you want answered.

• Bring someone with you to help you ask questions and remember what your provider tells you.

• At the visit, write down the name of a new diagnosis, and any new medicines, treatments, or tests. Also write down any new instructions your provider gives you.

• Know why a new medicine or treatment is prescribed, and how it will help you. Also know what the side effects are.

• Ask if your condition can be treated in other ways.

• Know why a test or procedure is recommended and what the results could mean.

• Know what to expect if you do not take the medicine or have the test or procedure.

• If you have a follow-up appointment, write down the date, time, and purpose for that visit.

• Know how you can contact your provider if you have questions.