Living With Post-Polio Syndrome

Decades after surviving polio, many individuals are faced with the pain, fatigue and muscle weakness of post-polio syndrome (PPS). PPS is believed to affect 20-40% of the 640,000 polio survivors in the United States, according to the Post-Polio Task Force. People who had more severe cases of polio generally have more severe cases of PPS, as well. There is no cure for PPS, but it is seldom a life-threatening condition.

PPS typically affects polio survivors 10 to 40 years after an initial polio attack. In the course of recovery from polio, the body compensates for the loss of nerve cells by sprouting extra nerve endings to restore function to muscles. It is believed that these "axonal sprouts" eventually fail after years of use, resulting in loss of muscle strength, pain and fatigue. In essence, the muscle fiber loses its ability to contract in an efficient manner. This may eventually lead to joint pain and skeletal deformities. But PPS is a "very slowly progressing condition marked by long periods of stability," according to the National Institute of Neurological Disorders and Stroke.

For example, patients may realize that in years past they could walk long distances, but are now fatigued by walking in the grocery story. Or they have pain or weakness in an area of the body they thought was unaffected by polio. However, not every polio survivor who has aches and pains or experiences fatigue has post-polio syndrome.

Diagnosis of post-polio syndrome is difficult because there is no test for PPS, and symptoms may be similar to other neuromuscular conditions such as fibromyalgia, or even depression. Laboratory tests, magnetic resonance imaging (MRI) or other studies may be performed at some point to exclude other causes of PPS-like symptoms. But a thorough medical history, physical and routine blood work may be the first steps in diagnosis.

Electromyography (EMG) is often performed to assess the status of nerve functioning; active nerve irritation, for example, may be a symptom of a more serious form of PPS. In addition, muscle strength may be measured over a period of time to demonstrate muscle atrophy. Another sign of PPS is that the individual has experienced at least 10 years of proper muscle functioning. There is no known way to prevent post-polio syndrome.

Treatment

Lifestyle changes are the mainstay of treating PPS. Patients should pace activities; don't clean the entire house in one day, for example. They should use energy-conservation principles; simplify tasks as much as possible, focusing only on critical daily activities; and slow down.

Occupational and physical therapy may help with lifestyle changes. Patients should avoid overexertion of muscles. They may need to use braces, crutches or wheelchairs. Patients who used equipment to help them breathe (such as an iron lung) during their initial polio infection may be at greater risk of having sleep and breathing disorders that require nighttime respiratory support.

PPS may affect a person's mobility and ability to perform daily activities. A general, flu-like fatigue is probably the most common symptom responsible for disability from PPS. Managing fatigue may involve relocating household supplies for easier access, taking regular breaks and rest periods throughout the day, and getting a good night's rest. (Sleep apnea, a serious condition in which breathing temporarily stops hundreds of times a night, is common among polio survivors.)

The right kind of exercise, if carefully supervised by a physician or physical therapist, may help treat PPS. Exercising in water, for example, reduces strain on weak joints and is easier on the body than exercise done on land.

PPS patients should also consider networking with other patients, such as through a support group. They may pick up ideas from their peers to make living with PPS easier. Patients in contact with their peers tend to do better from an emotional standpoint, as well.

Mestinon, a medication also used to treat myasthenia gravis, may be prescribed, particularly for patients with more serious post-polio syndrome. The drug works to improve the connections between nerves and muscles. However, it is difficult to predict how much relief Mestinon will provide in a patient or how low long the relief will last.

Strengthening exercises, physical therapy and over-the-counter or prescription medication may help ease pain. Applying ice or heat or using ultrasound or transcutaneous electrical nerve stimulation (TENS) may also relieve pain. Rest may also help with pain. Remember that pain may be caused by other co-existing conditions, such as arthritis, that may have to be treated separately.

Each year, Medical College of Wisconsin physicians care for more than 180,000 patients, representing nearly 500,000 patient visits. Medical College physicians practice at Children's Hospital of Wisconsin, Froedtert Memorial Lutheran Hospital, the Milwaukee VA Medical Center, and many other hospitals and clinics in Milwaukee and southeastern Wisconsin.