What is post-polio syndrome?
Post-polio syndrome is an illness in the nervous system. It can arise 15 to 50 years after you had polio. It affects your muscles and nerves, and it causes you to have low energy, fatigue, and muscle or joint pain. But there are ways you can stay active with this condition.
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 does not spread from person to person.
What causes it?
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.
What are the symptoms?
Symptoms of post-polio syndrome tend to show up very slowly. The main symptoms are new muscle weakness, fatigue, and pain in the muscles and joints. Muscles that had nerve damage from polio may get weak and waste away because of post-polio syndrome. With post-polio syndrome, muscles that you didn't realize had been affected by polio may have weakness.
Some people with post-polio syndrome also have problems with swallowing, breathing, sleeping, and tolerating cold temperatures.
How is post-polio syndrome diagnosed?
Doctors identify post-polio syndrome by checking your medical history and current signs of illness. They look at how polio affected you and how well you healed from it. Lab tests can check for other possible causes of your symptoms. You may need to have repeated health exams if new symptoms arise.
How is it treated?
Post-polio syndrome is a condition that you may have for the rest of your life. The aim of treatment is to help you control symptoms and learn ways to stay active in spite of your muscle weakness. You can manage your symptoms with a balance of physical activity and rest, ice and heat, pain medicine, and a healthy diet. Some people use canes, braces, and physical therapy. All of these things can help you stay active.
Who is at risk for post-polio syndrome?
It is 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 can occur as soon as 15 years after you had polio. Not everyone who had polio gets post-polio syndrome.
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.
Frequently Asked Questions
Learning about post-polio syndrome:
Living with post-polio syndrome:
There are many possible symptoms of post-polio syndrome (PPS). The exact symptoms you may have depend on many factors, including which muscles were affected by the original polio infection. For most people, muscle weakness caused by PPS gets worse very gradually and may take many years to become noticeable. You may go through long periods of stability when your symptoms do not get any worse.
The symptoms of PPS may resemble those of amyotrophic lateral sclerosis (ALS, or Lou Gehrig's disease), a disease of the nerves that control movement (motor neurons) that usually leads to death within several years. Post-polio syndrome is not a form of ALS and usually is not life-threatening.
The most common symptoms of post-polio syndrome are:
- New muscle weakness.
- Muscle and joint pain.
New muscle weakness
Most people who have PPS develop new muscle weakness. In some cases the weakness is caused by wasting away (atrophy) of the muscle. This new muscle weakness is sometimes called post-polio progressive muscular atrophy.
Muscle weakness is most common in the muscles that were originally affected by polio. But many people with PPS find that muscles that were not paralyzed by polio are getting weaker as well. This is not because PPS is spreading. Instead, experts believe that these muscles were indeed affected by the polio virus, but the effect was not as severe. In fact, in most cases the person never knew that polio had affected the nerves that control those muscles.
New muscle weakness may be caused by overuse or underuse of that muscle. You may overuse the muscle to compensate for weakness in another place. This may damage the nerves of the muscle and cause weakness. Or you may stop using the muscle because of fatigue or pain in your joints or muscles. This can cause your muscle to get weaker.
Most people with PPS experience fatigue, which is a feeling of exhaustion, after a short period of activity. You may find that activities you used to do without getting tired now cause fatigue. You may feel tired, lack energy, or have a heavy sensation in your muscles. When fatigue is severe, it can affect your ability to think or concentrate. You may even feel confused or sleepy. A short rest after activity usually can reduce your fatigue.
Muscle or joint pain
Many people with PPS have muscle or joint pain.
Even when it seems that you have completely recovered from polio, your muscles tend to be weaker than normal. To make up for this weakness, other muscles have to work harder. This is especially noticeable when you are walking. When muscles have to work overtime this way, it puts extra stress on muscles, joints, and tendons.
This extra stress may lead to muscle aches or cramping from overuse and joint or tendon pain from excess wear on joints and tendons. In many cases the pain is severe enough to limit your use of that part of your body. This resulting decrease in activity can lead to muscle weakness and can create a cycle of weakness, overuse of other muscles, and increased pain.
Symptoms of PPS, especially weakness and pain, can lead to difficulty in doing daily activities, such as getting dressed. This is most common among people who have shoulder or arm weakness.
New problems with walking or climbing stairs are also common in people with PPS. These problems occur most often in people who used braces, crutches, a cane, or some other aid while they were recovering from polio and then later in recovery found they could stop using the walking aid. The cause of this symptom is gradual loss of muscle strength, muscle and joint pain, and damage to joints (osteoarthritis) and tendons from the extra strain placed on them.
While PPS usually is not a life-threatening condition, you may experience complications, including:
- Swallowing problems. If your throat muscles were affected by polio, you may develop difficulty swallowing, which can lead to choking.
- Abnormal curvature of the spine. If the back muscles that support your spine were affected when you had polio, they may be too weak to support your spine. This can lead to abnormal curvature of the spine (scoliosis). Severe scoliosis can make breathing more difficult and can affect heart function.
- Breathing problems. Some people with PPS need help to improve their breathing. Even if you have only slight breathing trouble with PPS, you may need treatment to maintain lung function and prevent pneumonia.
Sleep problems. Having trouble sleeping may be a problem for some people with
- Sleep may be disturbed by restless legs syndrome, which makes you feel that you need to move your legs. Other abnormal movements while sleeping that disturb your rest may include muscle twitching and jerking.
- Breathing problems, such as sleep apnea, may also disrupt sleep. Sleep apnea occurs when you frequently stop breathing for 10 to 15 seconds while you are sleeping. People who have sleep apnea usually snore loudly and do not sleep as deeply as they should.
- Cold intolerance. Many people with PPS cannot tolerate cold temperatures well.
- Stress. Stress and anxiety may occur after you get PPS. You may find it harder to fall asleep because of mental stress, which is often described as racing thoughts. Increased stress and anxiety are often caused by excessive worry about PPS and its symptoms.
As with many disabling chronic conditions, depression is common in people with PPS. But it may be difficult to diagnose in someone with PPS, because symptoms of fatigue, low energy, and sleep problems can occur with both conditions. You may assume that PPS is responsible for all of your symptoms when in fact depression may be contributing to them. Because proper treatment can often greatly improve symptoms of depression, it's important to look for and recognize this condition when it is present and to discuss it with your doctor.
Some symptoms of post-polio syndrome are also similar to those of fibromyalgia, a common condition that causes widespread muscle and soft tissue pain and tenderness. As with depression, proper diagnosis and treatment of fibromyalgia is extremely important in people with PPS.
Exams and Tests
Your doctor will diagnose post-polio syndrome (PPS) only after ruling out all other possible causes of your symptoms. The doctor will ask about your medical history and do a careful physical exam to confirm that you once had polio. There are no lab tests that can be used to diagnose PPS.
A doctor will not diagnose PPS as the most likely cause of your symptoms unless the following four statements are true:
- Your medical history indicates you had polio, or testing of the electrical activity of certain muscle groups (electromyogram) suggests you had polio.
- It has been at least 15 years since you had polio, and you have recovered at least some use of the paralyzed muscles since then.
- You have new muscle weakness, fatigue, pain, decreased endurance, or loss of function in a muscle group, especially in one that was affected by polio.
- Tests do not find another problem that could explain your symptoms.
There are numerous tests your doctor may want to do to assess whether your symptoms are caused by a medical condition other than PPS. Special tests may be needed if you have problems with breathing, swallowing, or memory. Repeat exams may be needed to diagnose weakness and features of PPS that may not have been evident at your first exam.
Post-polio syndrome (PPS) is an ongoing condition. Your treatment will focus on controlling symptoms and learning new ways to stay active despite having muscle weakness. Careful exercise and proper rest are the basis of successful treatment. Other aspects of treatment may include physical and occupational therapy, assistive devices such as canes or braces, medicines for pain or sleep problems, and respiratory therapy to help with breathing problems.
If you have just been diagnosed with post-polio syndrome (PPS), your doctor will probably recommend that you start a program of regular exercise to increase your muscle strength and endurance. Exercise will also help you maintain a healthy weight, which reduces the stress on your joints and muscles. With your doctor's guidance, a physical therapist can design an exercise program for you and make sure that you do the exercises safely and correctly without overexerting yourself. Overexertion can make symptoms of fatigue, muscle weakness, and pain worse.
Getting adequate rest is another key component of early treatment, especially if fatigue is a problem for you. You may want to start looking for ways to adjust your daily schedule so that your routine is less stressful or tiring. If sleep problems are contributing to your fatigue, you may require further evaluation using a sleep study. Treatment for sleep problems and the type of doctor who treats them may depend on what is causing your sleep disturbances.
Your doctor may advise you to use an assistive device such as a cane or brace if needed.
Because post-polio syndrome can weaken the muscles that help you breathe, some doctors recommend that people with PPS get an annual flu shot(What is a PDF document?) to avoid breathing problems from the flu. You might also think about getting the pneumococcal vaccine.(What is a PDF document?)
Post-polio syndrome (PPS) can cause a wide variety of symptoms. Ongoing treatment focuses on dealing with your symptoms as they develop and become troublesome for you. New symptoms may arise after you've had PPS for many years. When you notice new symptoms, see your doctor to make sure that they are caused by PPS rather than by another medical condition.
Being aware of the effects of stress, anxiety, and depression on your symptoms is also an important part of your treatment. These problems are sometimes difficult to recognize. Talk with your doctor when existing problems get worse or new symptoms develop. Don't assume there's nothing you can do about them.
Exercise and rest
A continued program of moderate exercise and proper rest is the most important part of ongoing treatment for PPS. Staying active and conserving your energy may seem like conflicting goals. But both are needed to control your symptoms.
- Weight lifting and other strengthening exercises can help with muscle weakness and joint pain, as long as they don't increase fatigue during or after exercise. Do not do strengthening exercises more often than every 2 to 3 days so that you do not overuse muscles that were damaged by polio.
- Moderate aerobic exercise may also help relieve fatigue by building enough endurance so that you can do more activity before getting tired. The goal of both strengthening and aerobic exercise is to work up to, but not beyond, a point at which you start to get tired. Doing exercises in water (other than swimming) can be especially helpful.2
- Stretching and muscle relaxation exercises may help relieve muscle pain and reduce stress.
- Regularly scheduled rest periods or naps during the day can help limit fatigue. When you can, plan activities around your need for rest periods. Make adjustments in your daily schedule so that your routine is less stressful or tiring. Have a family member or friend help with errands and household chores. Eliminate unnecessary tasks or activities that aren't a valuable use of your time and energy.
Ice, heat, and physical therapies
- Muscle pain may be treated with ice, heat, massage, or electrical stimulation. If the muscle pain is related to poor posture, correcting your posture under the guidance of a physical therapist can help.
- Joint pain may improve with ice and heat therapy.
- If you have abnormal curvature of the spine, a physical therapist can also help you with posture, body mechanics, and other back care.
A variety of assistive devices can be helpful for people with PPS:
- If you have joint pain (in your knees or wrists, for instance), your doctor may prescribe a brace or splint to help hold the joint in its proper position, which may reduce pain.
- A back brace can often improve curvature of the spine (scoliosis).
- Problems doing everyday tasks because of weak arms and shoulders may be treated using arm supports and other types of splints. An occupational therapist can help with these problems.
- Leg braces, crutches, or a cane may help if you have problems walking or climbing stairs. If walking is very difficult for you, a wheelchair or powered chair may help you get around more easily.
Medicines for fatigue, pain, and sleep problems
In general, medicines have not been shown to be of great benefit in people with post-polio syndrome. But they may be helpful in relieving certain symptoms:
- Muscle and joint pain may be treated with over-the-counter pain medicines or prescription pain medicines. Nonsteroidal anti-inflammatory drugs (NSAIDs) available over-the-counter, such as aspirin and ibuprofen, are usually tried first and may provide enough relief for some people.
- Medicines can help treat abnormal movements in sleep, such as restless legs syndrome.
- There is some evidence that certain medicines may help some people with fatigue caused by PPS. But more study is needed before these drugs can be recommended routinely.
Treatments for breathing and swallowing problems
Breathing problems may be treated by a physical or respiratory therapist. A major goal is to maintain lung function and prevent pneumonia. This is done using coughing and other deep breathing exercises. The therapist may also recommend exercises to strengthen the muscles that are used in breathing. As with other exercises, people who have PPS should work up to, but not beyond, the point at which they start to get tired.
People who have PPS may need to have a test that measures the amount of oxygen in their blood to be certain they are getting enough oxygen, especially at night. Sleep apnea may be treated with supplemental oxygen therapy or continuous positive airway pressure (CPAP). For more information, see the topic Sleep Apnea.
Swallowing problems may require a swallowing test to learn how severe the problem is. A speech pathologist can give you exercises to help make swallowing easier. Changing what and how you eat may also be helpful:
- Thicker drinks make swallowing easier. Try milk shakes or juices in gelatin form.
- Avoid foods such as crackers or cakes that crumble easily. These can cause choking.
- Soft foods need less chewing. Use a blender to prepare food for easiest chewing.
- Eat frequent, small meals to avoid fatigue.
Treatment if the condition gets worse
Post-polio syndrome (PPS) usually progresses very slowly. Your symptoms may stabilize and not get worse for many years. If your condition does get worse, though, your treatment needs may change.
- If you develop breathing problems, you may require devices to deliver extra oxygen and help you breathe. In this situation, seeing a doctor who specializes in treating diseases that affect the lungs (pulmonologist) may be helpful.
- If muscle weakness and joint pain increase, you may have a greater need for assistive devices to help you with everyday activities. You may need a wheelchair if weakness in your leg muscles becomes severe.
- Severe curvature of the spine may require surgery.
It is also important to find out whether a problem other than PPS is making your symptoms worse or causing new symptoms. See your doctor whenever new symptoms occur or existing symptoms get worse. Doing this will help your doctor and you find out if the symptoms are caused by PPS or by another medical condition.
Home treatment for post-polio syndrome (PPS) involves taking care of your physical health and your overall well-being. A combination of exercise, a balanced diet, and adequate rest can help meet these needs.
Exercise can improve your aerobic fitness, muscle strength, and endurance, and it can help you keep or achieve a healthy weight. Exercise not only improves your overall health, but also may make you feel better about yourself.
Your doctor can help decide what kind of exercise program may be most helpful. After your doctor helps you create an exercise program, it will be important for you to follow it. Avoid overexercising and overusing your muscles, which can increase muscle fatigue and pain. Work up to, but not beyond, the point at which you start to get tired. Exercise that is done within your physical limits and that does not tire you during or after exercise may greatly benefit you.
Getting enough rest and establishing good sleep habits are important parts of home treatment also. Naps and rest periods during the day can help you recover from the fatigue of exercise and allow you to increase your endurance.
A balanced diet
A balanced diet for a person who has PPS is the same diet that is recommended for most healthy adults. It includes fruits, vegetables, grains, cereals, legumes, poultry, fish, lean meats, and low-fat dairy products.
Eating a balanced diet, especially when combined with regular exercise, can help you control your weight. This can help reduce some symptoms of PPS. Being overweight causes extra wear and tear on knees and ankles that are already stressed because of weakened muscles. This extra stress can lead to joint damage (osteoarthritis), which in turn can cause more joint pain. Losing weight may relieve some of this increased stress on your joints.
Other Places To Get Help
|National Institute of Neurological Disorders and Stroke|
|P.O. Box 5801|
|Bethesda, MD 20824|
The National Institute of Neurological Disorders and Stroke (NINDS), a part of the National Institutes of Health, is the leading U.S. federal government agency supporting research on brain and nervous system disorders. It provides the public with educational materials and information about these disorders.
|March of Dimes|
|1275 Mamaroneck Avenue|
|White Plains, NY 10605|
The March of Dimes tries to improve the health of babies by preventing birth defects, premature birth, and early death. March of Dimes supports research, community services, education, and advocacy to save babies' lives. The organization's Web site has information on premature birth, birth defects, birth defects testing, pregnancy, and prenatal care. You can sign up to get a free newsletter and also explore Understanding Your Newborn: An Interactive Program for New Parents.
|Post-Polio Health International|
|4207 Lindell Boulevard|
|St. Louis, MO 63108-2930|
The Post-Polio Health International (PHI) helps people with post-polio syndrome get information and exchange information about the condition. PHI also offers a newsletter, brochures, and a handbook for doctors and patients on the long-term effects of polio.
- Trojan D, Cashman N (2005). Post-poliomyelitis syndrome. Muscle and Nerve, 31(1): 6–19.
- Farbu E, et al. (2006). EFNS guideline on diagnosis and management of post-polio syndrome: Report of an EFNS task force. European Journal of Neurology, 13(8): 795–801.
Other Works Consulted
- Hoffman MD, et al. (2005). Therapeutic exercise. In JA DeLisa et al., eds., Physical Medicine and Rehabilitation, 4th ed., vol. 1, p. 424. Philadelphia: Lippincott Williams and Wilkins.
- March of Dimes (2001). March of Dimes International Conference on Post-Polio Syndrome: Identifying best practices in diagnosis and care. Available online: http://www.marchofdimes.com/files/PPSreport.pdf.
- Modlin JF (2005). Poliovirus. In GL Mandell et al., eds., Mandell, Douglas, and Bennett's Principles and Practice of Infectious Diseases, 6th ed., vol. 2, p. 2144. Philadelphia: Elsevier Churchill Livingstone.
- Trojan D, Cashman N (2005). Post-poliomyelitis syndrome. Muscle and Nerve, 31(1): 6–19.
|Author||Maria G. Essig, MS, ELS|
|Editor||Susan Van Houten, RN, BSN, MBA|
|Associate Editor||Pat Truman, MATC|
|Primary Medical Reviewer||Anne C. Poinier, MD - Internal Medicine|
|Specialist Medical Reviewer||Colin Chalk, MD, CM, FRCPC - Neurology|
|Last Updated||April 8, 2009|
Last Updated: April 8, 2009