Although new cases of polio were essentially eradicated in the early 1960s, the lingering effects of this devastating disease can prevail well into middle age.

Forty years after surviving a childhood bout of poliomyelitis (polio), 53-year-old Michael B. began experiencing a medley of uncomfortable, frightening, and debilitating symptoms. It started with an overall sense of bone-crushing fatigue, and was soon followed by joint pain and muscle weakness. Finally, when the pain and exhaustion became overwhelming, he went to his physician, who diagnosed his problem as post-polio syndrome (PPS).

A Debilitating Disease

"Polio was America's summer terror," says Dr. Nancy Frick, a polio survivor and an expert on the long-term psychological effects of childhood polio. Summer epidemics of polio ravaged the Western industrial world during the 1940s and 1950s until the development of the Salk (1955) and Sabin (1961) vaccines.

Poliomyelitis, also known as infantile paralysis, is an infectious disease caused by a virus that enters the gastrointestinal tract, then the bloodstream, and finally the central nervous system. Infected nerves in the brain and spinal cord stop working normally, which leads to weakness or paralysis of the muscles in the arms, legs, chest, diaphragm, and throat.

Up to 90% of the motor nerves are affected by the poliovirus, and at least 50% are killed off. According to Alan J. McComas, MD, a Canadian neurologist at McMaster University in Hamilton, Ontario, the remaining healthy nerve cells send out "sprouts" to reconnect the muscle fibers that were orphaned when their motor neurons were killed.

Long-Term Repercussions

Thirty or more years after the initial injury, the sprouted nerves (which have carried up to 500 times their normal workload) begin suffering from overuse. These overused nerves—along with overworked joints that hurt and throb after decades of doing too much work with too little muscle support—make up the syndrome known as post-polio syndrome (PPS). Studies suggest that 20% to 40% of people who recover from polio go on to develop post-polio syndrome, and those who developed polio at a later age are more at risk. There are an estimated 640,000 survivors of paralytic polio in the United States, so there may be up to 250,000 people with PPS.

Symptoms of PPS include:

  • Generalized fatigue
  • Muscle weakness
  • Muscle atrophy or wasting
  • Joint pain
  • Cold intolerance
  • Swallowing and breathing problems
  • Sleep disorders

While muscle weakness and pain are reported by more than 75% of polio survivors, the most common symptom of PPS is fatigue. Dr. Richard L. Bruno, director of the Post-Polio Institute at Englewood Hospital and Medical Center in Englewood, New Jersey, explains that, "Brain fatigue—the inability of polio survivors to concentrate and stay awake as the day goes on—is associated with a marked reduction in the brain-activating hormone ACTH. Magnetic resonance imaging reveals damage to the brainstem neurons responsible for activating the brain." It also appears that polio survivors suffer from an impaired ability to make dopamine—a brain chemical necessary for optimal nervous system functioning.

Psychological Effects of Polio

According to Drs. Frick and Bruno, psychological symptoms, such as chronic stress, anxiety, depression, and compulsive and Type A behavior, are evident in a large number of polio survivors.

Most polio survivors were young children when they became ill. They remember being hospitalized for weeks or months with visits from family restricted to a few hours per week. The loss of control and sense of abandonment were excruciating. Patients were often totally dependent on hospital staff and were subjected to painful and frightening therapies such as hot packs, bracing, splinting, and exercise. Many post-polio survivors recall instances of emotional, physical, and even sexual abuse by hospital workers.

Once they returned home, they were often rejected by playmates. Many, unable to initially participate in social or sports activities, learned to cope with physical and emotional pain. Others discarded their braces, walkers, and assistive devices in their quest to gain acceptance and appear normal. Many became super-achievers, struggling to improve their damaged sense of self-worth by placing impossibly high demands on themselves. Others developed traits typical of obsessive-compulsive personality disorder as a way of regaining a sense of control.

Dealing With the Return of Symptoms

Unfortunately, these personality dynamics make it difficult for the post-polio survivor to make the lifestyle changes necessary to control the severity of PPS symptoms. It is hard for these people to admit that they are experiencing pain or fatigue, and many resist recommendations to slow down and lead a less frenetic life. "I have to stay in control, stay busy, and look normal," says one polio survivor who remembers being taunted about her withered legs throughout her childhood and adolescence.

Living With PPS

Polio survivors need to slow down to allow damaged neurons, joints, and muscles to rest. According to the International Polio Network, management of PPS includes measures to both control and relieve existing symptoms.

Conserving Energy

Energy conservation techniques that can lead to a noticeable decrease in fatigue, weakness, and pain include:

  • Rest periods
  • Stress management and relaxation therapies
  • Maintenance of a healthy weight
  • Use of adaptive equipment (braces, scooters)
  • Avoidance of strenuous exercise or physically demanding activities

Relieving Pain

Simple stretching and strengthening exercises may be recommended. Physiotherapy (ice applications, heat, and ultrasound) may reduce joint and muscle pain.

Acetaminophen and other nonsteroidal anti-inflammatory drugs (NSAIDS) help reduce muscle and joint pain. Investigational drug therapies include pyridostigmine (Mestinon), high doses of Prednisone, amantadine, and human growth hormone (Humatrope).

Reducing Fatigue

Bromocriptine (Parlodel), a drug that substitutes for dopamine in the brain, is used to reduce the symptoms of post-polio brain fatigue in those patients who do not respond to more conservative techniques.

Intravenous immunoglobulin, a solution of concentrated antibodies, treats the inflammatory mediators present in patients with post-polio syndrome and may be helpful in some patients.

Breathing and Swallowing

Patients with breathing and/or swallowing difficulties may find respiratory treatments, diet modification, and instruction in swallowing techniques to be useful.

How Do You Know if You Have PPS?

It is difficult to diagnose PPS because there are no definitive tests, and the typical PPS symptoms may also be caused by many other diseases, including:

As a result, the diagnosis of PPS is a diagnosis of exclusion, meaning that a doctor can only diagnose PPS by eliminating these other potential causes of the symptoms. In general, a doctor may suspect PPS in a polio survivor if the person is suffering from new muscle weakness, generalized or muscular fatigue, or pain involving the muscles and/or joints, and has experienced at least 10 years of good health (ie, muscle functions have not deteriorated) since recovering from polio.

Even if these criteria are met, your doctor must still make sure that your symptoms are not caused by other medical conditions. Fibromyalgia, a musculoskeletal disorder that can cause generalized pain and tenderness as well as fatigue, is frequently seen in polio survivors and may sometimes coexist with PPS. If you are found to have another condition that causes PPS-like symptoms, this does not rule out the possibility that you may also have PPS.

If you've had polio, you owe it to yourself to get a second opinion.