Topic Overview
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.
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, 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 may have started 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: | |
Being diagnosed: | |
Getting treatment: | |
Living with post-polio syndrome: | |
Symptoms
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.
- Fatigue.
- 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.
Fatigue
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.
What happens
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
problems 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
PPS.
Having these types of sleeping problems may make you very
sleepy during the daytime. Sleep problems can also contribute to
fatigue.
- 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 hard 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 shows that 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 many tests your doctor may want to do to
see 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.
Treatment Overview
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.
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. 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.
- 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 helpful.
- 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.
Assistive devices
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 hard 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
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 and rest
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.
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.
For more information about exercise and rest for post-polio syndrome, see Treatment Overview.
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.
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?)
Other Places To Get Help
Organizations
| National Institute of Neurological Disorders and
Stroke |
| P.O. Box 5801 |
| Bethesda, MD 20824 |
| Phone: | 1-800-352-9424
(301) 496-5751 |
| TDD: | (301) 468-5981 |
| Web Address: | www.ninds.nih.gov |
| |
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 |
| Phone: | (914) 997-4488 |
| Web Address: | www.marchofdimes.com |
| |
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 website has information on premature birth, birth
defects, birth defects testing, pregnancy, and prenatal care. |
|
References
Other Works Consulted
- 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.
- 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.
- Modlin JF (2010). Poliovirus. In GL Mandell et al., eds., Mandell, Douglas, and Bennett's Principles and Practice of Infectious Diseases, 7th ed., vol. 2, pp. 2345–2351. Philadelphia: Churchill Livingstone Elsevier.
- Trojan D, Cashman N (2005). Post-poliomyelitis
syndrome. Muscle and Nerve, 31(1): 6–19.
Credits
| By | Healthwise Staff |
|---|
| Primary Medical Reviewer | Anne C. Poinier, MD - Internal Medicine |
|---|
| Specialist Medical Reviewer | Karin M. Lindholm, DO - Neurology |
|---|
| Last Revised | March 24, 2011 |
|---|
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