Topic Overview

What is post-polio syndrome?

Post-polio syndrome is an illness of the nervous system that can appear 15 to 50 years after you had polio. It affects your muscles and nerves, and it causes you to have weakness, fatigue, and muscle or joint pain.

Although post-polio syndrome can make some day-to-day activities more difficult, treatment can help control symptoms and help you stay active. Your symptoms may not get worse for many years. Post-polio syndrome usually progresses very slowly.

Only people who have had polio can get post-polio syndrome. But having post-polio syndrome doesn’t mean that you have polio again. Unlike polio, post-polio syndrome doesn’t spread from person to person.

What causes post-polio syndrome?

Post-polio syndrome most likely arises from the damage left over from having polio.

The polio virus harms the nerves that control muscles, and it makes the muscles weak. If you had polio, you may have gained back the use of your muscles. But the nerves that connect to the muscles could be damaged without your knowing it. The nerves may break down over time and cause you to have weak muscles again.

Researchers are studying other possible causes of post-polio syndrome. One theory is that the immune system plays a role.

What are the symptoms?

Symptoms of post-polio syndrome tend to show up very slowly. The main symptoms are:

• New muscle weakness. This is most common in the muscles that had nerve damage from polio. You may also have weakness in muscles that you didn’t realize had been affected by polio. Overuse or underuse of the muscles can lead to weakness. You may also notice the weak muscle is smaller (muscle atrophy). This may cause an arm or leg to look different from your other arm or leg.
• Fatigue. You may find that the activities you used to do without getting tired are now causing fatigue. You may often feel tired, have a heavy feeling in your muscles, or feel sleepy. At times you may have trouble thinking clearly.
• Muscle or joint pain. Muscles affected by polio tend to be weaker than normal. To make up for this weakness, other muscles have to work harder. This puts extra wear and tear on muscles, joints, and tendons, sometimes leading to aches, cramping, and pain.

Depending on which muscles are affected, this trio of muscle weakness, fatigue, and pain can make daily activities more difficult. For example, people with shoulder or arm weakness may have trouble getting dressed. People who have weakness in their legs may have trouble walking or climbing stairs.

Some people who have post-polio syndrome also have problems with swallowing, sleeping, and tolerating cold temperatures. Or they may need help to improve their breathing.

How is post-polio syndrome diagnosed?

Doctors diagnose post-polio syndrome based on your symptoms, medical history, and lab tests. Your doctor will look at how polio affected you and how well you healed from it. Lab tests will be done to check for other causes of your symptoms. If your symptoms and history point to post-polio syndrome, and if tests cannot find another cause, then your doctor may diagnose post-polio syndrome.

You may need to have more tests or exams if your symptoms change.

How is it treated?

Post-polio syndrome is a condition that you may have for the rest of your life. The goal of treatment is to help you control symptoms and learn ways to stay active in spite of your muscle weakness. Here are some things you can do to stay active and feel better:

• Get enough exercise, and get enough rest. Finding this balance is the most important part of your treatment. Work with your doctor or a physical therapist to plan an exercise program that will help strengthen your muscles without making your pain and fatigue worse. Try to adjust your daily schedule so that your routine is less tiring, and make time for rest periods or naps. Ask others for help.
• Use ice, heat, and physical therapies like massage. These can help relieve pain.
• Try medicines for pain, fatigue, and sleep problems. Talk with your doctor about what medicines can help.
• Try to stay at a healthy weight. This can help reduce stress on your joints. Eat healthy foods, and stay as active as you can.
• Use assistive devices to make activities easier. An occupational therapist can help you find what devices might be most helpful, such as a cane, different types of braces or splints, or a powered chair.

If your condition gets worse, your treatment needs may increase. Be sure to see your doctor whenever new symptoms occur or your symptoms get worse.

Depression is common in people who have post-polio syndrome, as with many long-term illnesses. But it may be hard to recognize, because symptoms of fatigue, low energy, and sleep problems can occur with both conditions. If you think you may be depressed, talk to your doctor. Treatment can often greatly improve symptoms of depression.

Who is at risk for post-polio syndrome?

Not everyone who had polio gets post-polio syndrome. It’s hard to predict who will get symptoms, when symptoms will begin, and how severe they will be. The exact amount of time it takes for symptoms to start is different for each person. Symptoms may have started as soon as 15 years after you had polio.

You are more likely to get post-polio syndrome if you:

• Had polio when you were a teen or an adult, rather than as a child.
• Had serious muscle weakness or breathing problems when you had polio.
• Recovered well from the polio. The more fully a person recovered from the polio, the more likely it is that he or she will get post-polio syndrome.

It’s hard to know how many adults who had polio will get post-polio syndrome. The symptoms (such as fatigue and weakness) are sometimes ignored or considered part of “normal aging.” Between 2 and 4 out of 10 adults who had polio may get post-polio syndrome.^{footnote 1}