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    Frequently Asked Questions (FAQs)


     




    OK, polio is licked, isn't it? So what is Post-Polio Syndrome?

    Polio infections may soon end (though there is still some question about possible new epidemics developing from "wild" polio virus loose in the environment if vaccinations are ever abandoned.) Post-Polio Syndrome (PPS) occurs about 25 to 30 years after the original polio illness, when polio survivors experience new symptoms of weakness, pain, pathological fatigue, additional paralysis, and breathing and swallowing problems. These symptoms are caused by a gradual wearing out of already weakened and damaged nerve cells and may appear even in those polio survivors who had apparently made a complete recovery from the original polio and were not left paralyzed. PPS is not caused by an active virus and is not contagious.


    What can I do about pain from Post-Polio Syndrome?

    Here are some helpful tips assembled from the Internet Polio Mail List by our friend Tom in California ( This e-mail address is being protected from spambots. You need JavaScript enabled to view it ):

    NUMERO UNO -- "Lifestyle Adjustment:" The 'sine qua non' without which none of the other tips or aids seem to

    do much good. That means reducing physical exertion / activity AND mental stress to the level of one's current capabilities.

    Dr. Jacquelin Perry, with over 40 years at the polio clinic of Rancho Los Amigos Medical Center in Downey, California, says we should exercise normal (if any) muscles normally but not do anything that causes PPS-affected muscles pain or weakness or fatigue that lasts more than 10 minutes.

    Assuming the person has been thoroughly checked for any other conditions that could mimic PPS symptoms and be treated -- and that any orthopedic anomalies that could be causing pain have been treated -- here's a partial list of some tips that PPSers have reported seem to work for them, alone or in combination:

    1. Moist heat applied to the painful area.

    2. Light massage to the painful area.

    3. Ice packs applied to the painful area.

    4. Chiropractic or osteopathic 'adjustment' of neck/back/joints; postural improvement - Alexander, Feldenkrais, etc.

    5. Alternative therapies such as acupuncture or electro-acupuncture to the ear lobe; magnetic field therapy.

    6. Dietary supplements such as ginger, pycnogenol, cayenne pepper, glucosamine and chondroitin sufates, calcium and magnesium.

    7. Treatment of sleeping difficulties, i.e., insufficient amount of deep, Stage IV (REM) sleep.

    8. Treatment of breathing difficulties, i.e., insufficient amount of oxygen and or too much carbon dioxide, especially during sleep.

    9. Use of assistive and adaptive aids, as necessary, to reduce stress and strain to muscles and joints; assuring that all body parts that require it, e.g., neck, head, back, shoulders, are properly supported at all times.

    10. For inflammation of muscles / joints -- use of arthritis-type drugs: NSAIDs (Non-Steroidal Anti-Inflammatory Drugs). Over-the-counter types like aspirin, Ketoprofen or prescription types like Relafen, Voltaren, Naprosyn.

    11. For 'nerve' pain -- use of antidepressant prescription drugs -- Elavil (amitriptyline) -- an anti-depressant of the tricyclic type -- is the first choice in drug therapy by some PPS specialist doctors for those with PPS pain AND trouble sleeping, at dosages less than would be used for clinical depression. But a lot of us don't tolerate it well. And for those who don't tolerate it (and also those who DON'T have sleeping problems), one of the SRUB class of anti-depressants (Serotonin ReUptake Blockers) such as Zoloft or Paxil -- also in smaller doses than would be used for clinical depression -- may be of help.

    12. Occasional and/or careful use of muscle relaxants such as Quinine or Methocarbamol.

    13. Hormone Replacement Therapy, especially for post-menopausal, post-hysterectomy women and others with lower than normal levels of estrogen, testosterone, thyroid. DHEA and pre-cursors; Melatonin.

    14. Generic Tramadol Hydrochloride, recently available in the U.S. as the prescription drug Ultram and in Mexico as Tradol, is an artificial opiate "pain pill" that appears to be safer and without the negative side effects of narcotic pain medications. Some doctors, though, are questioning claims that it is not addictive.

    15. LISTEN TO YOUR BODY !!!


    Where can I find a polio doctor or clinic in my area?

    This is a major problem for polio survivors since there are few doctors who are familiar with polio and the late effects of PPS. Often the ones who are most likely to be knowledgeable are Physiatrists. It will take persistence in checking with hospitals, clinics, and other medical organizations in your area to find the right person for you.

    We have a page linking to several excellent online directories of support groups, doctors, and clinics besides listing some Wisconsin medical practioners our members have found helpful. While no endorsement is implied by PPRG, this is an excellent place to start.


    What can I do to help others with Post-Polio Syndrome?

    Hey, that's a great question! Thanks for asking.

    Iit is important to help others to know about PPS: doctors, friends and family who may have had polio, news media, political leaders, and anyone else who is interested. The more this is known and understood the better it will be for polio survivors.

    Also, when you or someone you know starts to experience the symptoms of PPS, take it seriously and take action. The longer one delays, the more likely and more quickly the symptoms will become worse. There is no known way of reversing the symptoms once that happens.

    About Post-Polio Syndrome


    These questions and answers are courtesy of the International Polio Network (a.k.a., GINI) and are reprinted here with their permission.


    What is post-polio syndrome (PPS)?

    Post-polio syndrome is a condition that affects polio survivors years after their recovery from their initial bout with polio. An interval of 30 to 40 years usually elapses before the first PPS symptoms occur, but intervals as short as 8 years and as long as 71 years have been documented.

    What are the most common symptoms of PPS?

    Fatigue, new weakness, and pain are the most common symptoms of PPS, but many other symptoms can also occur, including:

    • Fatigue, which occurs in 60% to 90% of people with PPS, may be the most common symptom, and is probably most responsible for disability associated with the syndrome. Some people experience PPS-related fatigue as general fatigue, which often is described as a flu-like exhaustion that worsens as the day progresses. This type of fatigue can also increase during physical activity, and may cause difficulty with concentration and memory. Others experience muscle fatigue, a form of muscle weakness that increases with exercise and improves with rest. In addition, many individuals experience symptoms of both general fatigue and muscle fatigue

    • New weakness usually occurs in muscles that were affected during the original polio infection; however, this weakness also can occur in muscles that were not affected by the original polio infection, or at least did not seem to be affected at the time

    • People with PPS may experience pain in their muscles and/or joints. Muscle pain is usually felt as an aching or sore feeling that occurs after light physical activity, and it frequently improves with rest. Joint pain can be chronic (lasting for a long time) or intermittent (occurring off and on for short periods of time), and it may intensify during physical activity

    • Less common PPS symptoms may include:

      • new muscle atrophy (loss of muscle bulk)

      • respiratory insufficiency (breathing difficulties)

      • dysarthria (speech disturbances)

      • dysphagia (difficulty swallowing)

      • muscle cramps

      • cold intolerance

      • fasciculations (muscle twitches)

      • joint deformities

    How many people have PPS?

    It is estimated that there are currently 640,000 survivors of polio in the United States. Studies suggest that 20% to 40% of those who have recovered from the initial polio infection go on to develop PPS; thus, there may be as many as 128,000 to 256,000 individuals with PPS in the United States.

    How does PPS affect quality of life?

    PPS is not typically a life-threatening condition, but it may cause significant discomfort and disability. The most common disability caused by PPS is deterioration of mobility. People with PPS may also experience difficulties performing daily activities such as cooking, cleaning, shopping, and driving. Assistive devices such as canes, crutches, walkers, wheelchairs, or electric scooters may be necessary for some people. If symptoms are extremely severe, these individuals may be required to change occupations or stop working altogether.

    How does PPS cause these symptoms?

    The exact mechanism by which PPS causes fatigue, pain, and new weakness is not completely understood, but it is thought to be related to the gradual loss of individual nerve cells that make contact with muscle fibers, and subsequent loss of nerve transmission to these fibers. During the original polio infection, the poliovirus attacks motor neurons (nerve cells responsible for muscle movement), causing injury or death of those nerve cells. If this process occurs on a large enough scale, it can result in loss of muscle function, including weakness or paralysis.

    However, the body often employs strategies to compensate for lost functions -- in this case, surviving nerve cells sprout extra branches, called axonal sprouts, that are able to attach to muscle fibers that have lost their original nerve supply. After this process of nerve reattachment, or reinnervation, the muscle fibers are able to work again, sometimes as well as before.

    Some researchers have suggested that PPS develops because these extra axonal sprouts cannot "hold" forever, but instead get weaker over time due to "overexertion" -- in other words, they cannot sustain this additional activity indefinitely, because they were not designed to do so. Eventually, the sprouts degenerate, and the muscle fiber again loses its ability to contract.

    How is PPS diagnosed?

    It may be difficult to obtain a proper diagnosis of PPS, in part because there are no definitive tests for this condition. Some doctors dismiss PPS symptoms as being caused by psychological conditions such as depression. In addition, common PPS symptoms such as fatigue, pain, and new weakness may also be caused by many other diseases. As a result, the diagnosis of PPS is one of exclusion, meaning that a doctor can only diagnose PPS by eliminating other potential causes of the patient's symptoms. In general, a doctor may suspect PPS in a polio survivor if:

    • The individual is suffering from new muscle weakness, generalized or muscular fatigue, or pain involving the muscles and/or joints

    • The individual has experienced at least 10 years of good health (i.e., muscle functions have not deteriorated) since recovering from polio

    If these criteria are met, a doctor must still make sure that the symptoms are not caused by other medical conditions, including pulmonary (lung), cardiac (heart), hematologic (blood), or endocrine (hormonal) diseases, cancer, or some chronic infections. In addition, musculoskeletal diseases such as fibromyalgia, rheumatoid arthritis, and osteoarthritis may also be confused with PPS.

    Fibromyalgia, a common musculoskeletal disorder that can cause generalized pain and tenderness as well as fatigue, is frequently seen in polio survivors, and may sometimes co-exist with PPS. In addition, many neurologic diseases -- including amyotrophic lateral sclerosis (Lou Gehrig's disease), multiple sclerosis, and Parkinson's disease -- may cause PPS-like symptoms. However, even if an individual is found to have another condition that causes PPS-like symptoms, this does not rule out the possibility that he or she may also have PPS.

    Is there a cure for PPS?

    There is currently no cure for PPS. However, several drugs are being studied in the hopes that they will provide relief from some of its symptoms (see below). In addition, people with PPS have a wide range of non-drug options for symptom management. Depending on the individual, a typical strategy may involve physical therapy with careful use of exercise; occupational therapy, including instruction on lifestyle changes, such as avoiding overexertion; use of assistive devices such as canes or walkers; appropriate weight loss if needed; and use of over-the-counter or prescription pain medications.

    Often, these management strategies are developed in consultation with the individual's primary care physician, along with a team of other healthcare professionals that may include a physiatrist (a doctor specializing in rehabilitative medicine), a neurologist, a rheumatologist or orthopedist, a physical therapist, an occupational therapist, a speech therapist, an orthotist (a person who creates othopedic devices), a social worker, and a dietician.

    How to manage new weakness?

    Strengthening, stretching, and aerobic exercises may be useful for the management of new weakness, as is appropriate weight loss. However, not everyone benefits from the same types of exercise, and some individuals should avoid exercise altogether. In general, people with PPS should avoid exercise that causes joint pain, and should not exercise to the point of muscle pain or fatigue. It is important to avoid muscle overuse because this may result in increased weakness. If muscle overuse does occur, rest or supportive devices such as braces may be beneficial. Assistive devices -- such as canes, crutches, manual wheelchairs, electric wheelchairs, and motorized scooters -- can be helpful for severe muscle weakness.

    How to manage fatigue?

    One way to manage PPS-related fatigue is through the use of energy conservation techniques. For example, daily activities that are not considered "critical," such as making a bed, can be discontinued. Or, household items and supplies can be relocated to make them more accessible. Some people may consider certain lifestyle changes, such as working only part-time or taking a job that is less physically demanding. In addition, it helps to learn to pace daily activities, which means taking regular breaks during long periods of physical activity.

    Regular rest periods or daytime naps, especially in the early afternoon, can be beneficial for managing fatigue. (People with PPS who work should also consider this type of rest schedule.) Finally, it is important to get a good night's sleep; doctors can provide advice on how to improve the quantity and quality of sleep. (It should be noted that breathing disorders such as sleep apnea may interfere with sleep and contribute to fatigue.)

    How to manage pain?

    There are different types of pain associated with PPS, and management strategies must be tailored accordingly. Some types of pain may be of muscular origin -- such as muscle cramps or fibromyalgia -- while others may result from joint and soft tissue problems that are secondary to PPS, including osteoarthritis, tendinitis, ligament strains, and joint deformities.

    One way that people with PPS can manage pain is to modify the use of their extremities -- for example, by periodically resting a leg that is causing discomfort. Certain "physiotherapeutic" techniques, including the application of ice or superficial heat, as well as the use of ultrasound and a method called transcutaneous electrical nerve stimulation, or TENS, may be beneficial for pain management.

    Strengthening exercises, supportive devices such as braces, and assistive devices can also help to relieve pain. Acetaminophen (e.g., Tylenol) and nonsteroidal anti-inflammatory drugs (such as ibuprofen [e.g., Advil], naproxen sodium [e.g., Naprelan, Aleve], and etodolac [Lodine]) are effective pain relievers that can be obtained over-the-counter or by prescription. In rare cases, steroid injections or surgery may be required to relieve a patient's pain.

    How are other PPS symptoms managed?

    An estimated 13 percent of people with PPS develop new breathing difficulties, most commonly caused by weakness of the respiratory muscles. Other factors may be pulmonary (lung) disease; spinal deformities such as scoliosis or kyphosis; obesity; smoking; and/or sleep-associated breathing disorders (e.g., sleep apnea, a common problems in polio survivors). Many polio survivors who used a ventilator during their original polio infection may need to return to the use of a ventilator. Management of breathing and sleep problems can be achieved largely through the use of nocturnal (nighttime) ventilation.

    A small percentage of people with PPS suffer from dysphagia, or difficulty swallowing (often caused by weakness of the muscles of the pharynx or larynx). A videofluoroscopic evaluation may be needed. Swallowing problems can be managed with a variety of techniques, including eating smaller and more frequent meals during the day, avoiding eating when fatigued, and turning the head to one side or tucking down the chin while swallowing.

    Is PPS associated with emotional problems?

    Many individuals have difficulties adjusting to new disabilities. For some people with PPS, reliving their childhood experiences with polio can be a traumatic and even terrifying experience. To make matters worse, many doctors know very little about PPS, and some believe that the condition is only in the patient's head. Lacking proper medical and psychological advice, people with PPS are often forced to depend on their own resources to help them cope with their condition.

    Fortunately, PPS is gaining increasing attention in the medical community, and there is a growing number of healthcare professionals who understand PPS and can provide appropriate medical and psychological help. In addition, there are PPS support groups, newsletters, and educational networks that provide up-to-date information about PPS while offering individuals the knowledge that they are not alone in their struggle (see contact information below).

    Are there any promising new treatments for PPS?

    Several drugs are being studied in the hopes that they may prove effective in relieving some of the symptoms of PPS:

    • Human growth hormone (Humatrope) has been found to increase the production of a hormone in the body -- insulin-like growth factor I or IGF-1 -- that stimulates nerve cells to sprout additional extensions (axons). This drug, which is already approved for other uses, was tested in 6 people with PPS, producing little or no improvement in the subjects' muscle strength, endurance, or recovery after fatigue. However, the study investigators suggested that longer-term treatment with human growth hormone might help some individuals with PPS.

    • Bromocriptine mesylate (Parlodel), a drug that is used to treat conditions such as Parkinson's disease, was found to improve symptoms of fatigue in 3 out of a total of 5 persons with PPS. Researchers are hoping to conduct larger studies to confirm the benefits of this drug

    • Recombinant human insulin-like growth factor I (rhIGF-1) was shown to enhance the recovery of of strength in people with PPS after they engaged in tiring exercises, but the drug did not alleviate excessive fatigue caused by the exercises. The study involved 22 people with PPS

    • Pyridostigmine (Mestinon), a drug currently approved to treat muscle fatigue associated with the neuromuscular disorder myasthenia gravis, has shown some promise in the treatment of PPS. In one study of the drug involving 27 people with PPS, more than half of the subjects reported less fatigue after receiving pyridostigmine. A separate study involving 27 people with PPS found that patients taking pyridostigmine showed minimal improvements in strength (based on objective measures) and fatigue levels (based on the individual's own opinion)

      The potential benefits of pyridostigmine are being investigated further in a clinical trial called the North American Postpoliomyelitis Pyridostigmine Study, or NAPPS. Preliminary results have been released and pyridostigmine was not found to provide significant benefits with respect to quality of life, fatigue, or isometric muscle strength compared with placebo, although a trend was noted towards increased strength in very weak muscles.

      This trial of 126 people with PPS is designed to determine the effectiveness of pyridostigmine in relieving PPS symptoms using measures of fatigue, muscle strength, and general health. NAPPS will also determine the incidence and severity of any side effects associated with pyridostigmine. Adverse effects were seen in approximately 50% of individuals in previous trials of pyridostigmine; these side effects included loose stools and intestinal cramps, blurred vision, increased urinary frequency, muscle cramps, and fasciculations (muscle twitches).

    Patient checklist

    Check off the items in the following list that apply to you. If you check off the first item on this list and any of the subsequent ones, see a doctor.

    ___

    I have had polio in the past and I now have:

    ___

    unaccustomed fatigue (this may be "general fatigue" ), a feeling of total exhaustion, or "muscle fatigue", a rapid tiring of the muscles that increases with exercise and improves with rest

    ___

    new muscle weakness (may include muscles originally affected by polio infection, as well as muscles seemingly unaffected at the time)

    ___

    pain in my muscles and/or joints

    ___

    breathing or swallowing difficulties

    ___

    increased sensitivity to cold temperatures

    ___

    a decline in my ability to perform basic daily activities, such as climbing up stairs or bathing

    ___

    difficulty sleeping

     

    For further information on polio and PPS, contact the International Polio Network, (IPN), an organization with a forty-year history of collecting, creating, and disseminating information on issues relating to polio and post-polio syndrome.