Post-Polio Syndrome

What is post-polio syndrome?

If you have had polio, post-polio syndrome (PPS) is a condition that you can have 10 to 40 years later. PPS causes muscle weakness and tiredness. About 25% of polio survivors develop PPS.

Polio was a terrible viral disease in the 1900s up through the 1950s. Since then polio vaccination has almost eliminated polio worldwide. The last outbreak in the US was in 1954. However, many people who survived the disease have suffered the aftereffects of polio and disability—a medical problem now recognized as post-polio syndrome.

How does it occur?

The cause of PPS is not completely understood. The original poliovirus infection attacked nerve cells responsible for muscle movement. The virus damaged or destroyed some of these nerve cells. Surviving nerve cells grew extra branches. The branches attached to muscles that had lost their original nerve supply during the polio infection. After the new nerves attached, the muscles were able to work again. Some researchers think these extra nerve branches weaken over time. The muscle then loses its ability to move properly.

What are the symptoms?

Symptoms of PPS are:

• tiredness
• increasing muscle weakness
• trouble swallowing
• wasting away of muscles (atrophy)
• joint pain
• skeletal problems, such as scoliosis (curvature of the spine).

Tiring easily and feeling weak are more common symptoms than pain.

How is it diagnosed?

A history of polio and your symptoms since then are important in the diagnosis.

Very few lab tests point directly to PPS. Most testing is done to check for other diseases that can cause weakness and tiredness. For PPS, your healthcare provider will test your muscles, checking for a pattern of weakness that is typical of PPS. You may also have other tests such as:

• imaging tests, or scans, such as MRI, CT, and PET
• tests of samples of muscle tissue (biopsies)
• tests of spinal fluid.

How is it treated?

Doctors don’t yet know how to cure or prevent PPS. Many unproven treatments are being tried in the hope that they will have some effect.

Electronic nerve stimulation devices (TENS) may help relieve pain. Heavy use of muscles and massage may have been harmful for you during the active poliovirus infection. However, it may be helpful for post-polio syndrome.

If you needed a ventilator during the original polio infection, you may need to use a ventilator again to help you breathe.

Future PPS treatment may focus on helping the nerves grow new branches.

How long will the effects last?

PPS worsens very slowly. There may be long periods of time when it does not get worse. PPS usually is not life threatening unless it starts causing severe lung problems.

How can I take care of myself?

• Do strengthening, stretching, and aerobic exercise according to your healthcare provider’s recommendations. Avoid exercise that makes your joints hurt. Stop exercising if your muscles start hurting or get tired. Research says you should limit your exercise so that you are not exhausting your muscles in each exercise session.
• Don’t let yourself get too tired. Have regular rest periods or daytime naps. Early afternoon can be a good time to take a nap.
• Take a pain reliever, such as acetaminophen or ibuprofen. Nonsteroidal anti-inflammatory medicines (NSAIDs), such as ibuprofen, may cause stomach bleeding and other problems. These risks increase with age. Read the label and take as directed. Unless recommended by your healthcare provider, do not take for more than 10 days for any reason.
• Put ice or heat on your muscles to help relieve pain.
• Consider using devices that can help you be mobile, such as braces, canes, crutches, wheelchairs, and motorized scooters.
• If you have problems with swallowing:
  • Eat smaller and more frequent meals during the day.
  • Avoid eating when you are tired.
  • Turn your head to one side or tuck down your chin when you swallow.

For more information, contact:

International Polio Network/Gazette International
Phone: 1-314-534-0475
Web site: http://www.post-polio.org

National Institute of Neurological Disorders and Stroke
Phone: (800) 352-9424
Web site: http://www.ninds.nih.gov/disorders/post_polio/detail_post_polio.htm