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Polio & Post-Polio Fact Sheet (continued)
Poliomyelitis and the epidemics
The late effects of poliomyelitis
The Late Effects of Poliomyelitis
The World Health Organization estimates there are up to 20,000,000 survivors of poliomyelitis living in the world today.
Preliminary numbers from a National Health Interview Survey (1996) estimate that there are 1,000,000 survivors of polio in the United States.
Of the 1,000,000 survivors of polio in the United States, 450,000 are living with the effects of permanent paralysis, ranging from unequal leg lengths resulting in a limp to paralysis of the breathing muscles resulting in the use of a ventilator.
The occurrence of new muscle weakness and atrophy, many years after acute poliomyelitis, was first reported in the medical literature in 1875.
In the late '70s, polio survivors started to report that they were "tiring more easily" and that they were in search of physicians who were knowledgeable about poliomyelitis. The sheer weight of numbers of polio survivors from the epidemics of the '40s and '50s compelled medical professionals to begin to address the problem.
The triad of major symptoms includes inordinate fatigue, new muscle weakness with or without loss of muscle bulk, and muscle pain with possible muscle twitching. Other symptoms include sleeping problems, breathing difficulties, decreased ability to tolerate cold temperatures, joint pain and a noticeable decline in the ability to carry out customary activities.
Research suggests that 120,000-180,000 polio survivors may be developing "post-polio syndrome." The diagnosis is based on the following general criteria: prior episode of paralytic polio; period of functional stability; gradual or abrupt new weakness usually accompanied by the health problems listed above; exclusion of other medical, orthopedic and neurologic conditions that may cause the same symptoms.
Nerve cells damaged by the poliovirus during the acute stage of poliomyelitis left the accompanying muscles orphaned and paralyzed. During recovery, the surviving nerve cells "sprouted" and reconnected to the orphaned muscles. The nerve and muscle combination is called a motor unit, and the most widely accepted explanation of the new weakness is a dysfunction of the motor unit.
For diagnosed post-polio syndrome, the current treatment, which must be unique to each individual, is the management of the symptoms. The specific cause(s) of the symptoms need(s) to be identified and treated and/or eliminated. Many times the cause is overuse; however, disuse also can result in new weakness.
Although some physicians use exacting criteria for the diagnosis of "post-polio syndrome," many physicians and polio survivors alike acknowledge that aging polio survivors will encounter "wear and tear" musculoskeletal problems. Thus, whatever the cause and whatever the label of the diagnosis, there are consequences to living long-term with the late effects of poliomyelitis.
Surveys of polio survivors cite the following lifestyle changes as the most beneficial: adopting energy conservation techniques, employing household help, buying special equipment, modifying the home, cutting back on work and implementing a general conditioning exercise program.
Polio survivors are advised to examine their daily schedules, both at work and at home, and modify, if necessary, the intensity and timing of their activities by utilizing appropriate energy-saving techniques and equipment.
The role of exercise is controversial. Recent research indicates that supervised, low intensity, interval exercise can increase strength with no apparent damage. Polio survivors are best advised to heed their bodies' warning signs of pain. The general recommendation is to avoid activity that causes pain and fatigue after ten minutes.
Limited research has been conducted on medications to address muscle fatigue. No medicine has been found in controlled studies to provide consistent and significant benefits.
In 1987, the Social Security Administration acknowledged the late effects of poliomyelitis and issued criteria for the evaluation of the ability of polio survivors to continue employment in its Program Operations Manual System (POMS). The listing number is DI 24580.010E.3.
- On July 1st, 2003, the Social Security Administration updated the listing. It is now called DI 24580.010 Evaluation of Postpolio Sequelae.
Polio survivors are also susceptible to all the other diseases that affect the general population. One study revealed that 35% of the individuals complaining of post-polio problems had another medical condition such as diabetes; other secondary conditions included obesity and elevated cholesterol.
In treating other conditions, polio survivors should be aware that the side effects of some medications are weakness and fatigue; taking those medications can noticeably increase post-polio symptoms. Also, the recovery time after injury, surgery and other illnesses is reported by polio survivors to be longer. Polio survivors facing surgery should seek a consultation with the anesthesiologist to discuss prior medical history related to poliomyelitis.
Many survivors express concern over the lack of knowledge and adequate assistance from medical professionals about issues related to poliomyelitis. Through the networking efforts of many, more professionals are gaining expertise and do provide sound advice. However, polio survivors must educate themselves, be resourceful, and work in collaboration with open-minded health professionals.
To assist with the education of polio survivors and health professionals, Post-Polio Health International (PHI) has available the Handbook on the Late Effects of Poliomyelitis for Physicians and Survivors (Revised edition, 1999). PHI also publishes the quarterly Post-Polio Health and compiles an annual Post-Polio Directory (pdf) of clinics, health professionals and support groups.