Anyone have polio as a child now have FM and CFS?

Discussion in 'Fibromyalgia Main Forum' started by fibromaster, Oct 2, 2005.

  1. fibromaster

    fibromaster New Member

    I was wondering if anyone that had polio as a child now has FM and/or CFS. I had polio as a child. It affected my left leg. I had a stiff leg for a few years but I out grew it. I was left with a leg shorter than the other. Its noticable enough that when I was at work people would ask me why I was limping. Now I have this thigh and hip pain on the affected leg.
    One of the things that I found is that its covered by SSI if you meet the criteria.
    www.post-polio.org/ipn/di245801.html
    I have included several paragraphs from different websites to try and include as much information as possible.

    Polio's Late Effects

    With the extermination of the polio virus in the United States, polio became an all-but-forgotten disease. For the most part, those of us who had it learned to cope with whatever residual disabilities the disease had caused. We married, had children, progressed in our careers, and lived essentially ordinary lives. We gave the disease that had so disrupted our childhoods little thought. Whatever damage it had done occurred decades ago, and we thought it would not affect us again. We were wrong. Dead wrong. Almost as if its ghost had risen to avenge its death, polio slipped back into the news in the early 1980's with reports that many polio survivors were now experiencing new and unexpected symptoms.

    Typically the new symptoms begin 30 or more years after the acute polio infection. Though the symptoms may be acutely precipitated by illness or injury, usually their onset is gradual. Therefore, it is often difficult for individuals to pinpoint exactly when they started to experience new polio-related problems.

    Symptoms most typically reported by those experiencing these late effects are (1) excessive fatigue and reduced endurance; (2) new joint and muscle pain; (3) progressive muscle weakness, not only in muscles previously affected, but also in muscles apparently unaffected by acute polio; (4) new or increased breathing difficulties, in some cases requiring the use of ventilatory devices; and (5) cold intolerance that contributes to muscle weakness and is accompanied by burning pain (Jones, Speier, Canine, and Owen, 1989). The severity of the symptoms is quite variable, and in some cases individuals may require additional bracing, or may find that they now need canes or a wheelchair. Lifestyle changes may also become necessary (Owen, 1990).

    When medical help is sought, medications such as mestinon, which is used with myasthenia gravis patients, and symetral, most often used with Parkinson's patients, may be prescribed. Both of these drugs may improve the functioning of damaged or weakened nerve cells (Speier, Owen, Jones, and Seizert, 1990), and medications such as elavil that are often prescribed to combat depression can be helpful in the treatment of polio-related chronic fatigue. Prednisone, a steroid often used to treat multiple sclerosis, is also being used with some post-polio patients, and The National Institute of Neurological Disorders and Strokes is experimenting with the use of nerve growth factor, "a protein that spurs the proliferation of nerve axons" (Elmer-Dewitt, 1994, p. 55).

    The survivors of poliomyelitis may experience symptoms that include:

    Unaccustomed fatigue – either rapid muscle tiring or feeling of total body exhaustion

    New weakness in muscles, both those originally affected and those seemingly unaffected

    Pain in muscles and/or joints

    Sleeping problems

    Breathing difficulties

    Swallowing problems

    Decreased ability to tolerate cold temperatures

    Decline in ability to conduct customary daily activities such as walking, bathing, etc.

    Post Polio Syndrome

    Major symptoms include muscle pain, weakness, fatigue and, in some cases, wasting (atrophy) of the muscles that were involved during the polio infection, typically the legs. Additional problems can include intolerance to heat or cold, and difficulty swallowing, breathing or sleeping. The syndrome also can cause abnormal muscle contractions, such as quivering or spasms, in small segments of a muscle. Worsening disability may cause social and psychological problems. There also can be numbness or tingling, but these sensory problems are uncommon.

    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.

    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.

    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.

    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.

    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.

    Symptoms and Signs of Post-Polio Syndrome
    General:

    Increased weakness
    Increased fatigue
    Reduced endurance for routine activities
    Lifestyle changes
    Increased instability and falling
    Need for walking and mobility aids
    Weight gain
    Dependent edema
    Genito-urinary problems
    Gastro-intestinal complaints
    Sexual problems
    Anxiety and depression
    Change in tone of voice
    Swallowing problems
    Choking
    Poor memory and concentration
    Sensitivity to cold


    Neuromuscular:
    Increased pain
    Muscle atrophy
    Muscle pain
    Local muscle fatigue
    Increased or new muscle weakness
    Muscle twitching
    Muscle cramps
    Anterior nerve root entrapment
    Peripheral neuropathy

    Muscular-skeletal:
    Joint deformity
    Spinal deformity
    Chronic back pain
    Osteoporosis
    Degenerative joint disease
    Tendonitis
    Ligament laxity, especially in the knees

    Cardio-respiratory:
    Increased shortness of breath
    Difficulty in speaking Snoring
    Morning headaches
    Peripheral swelling
    Increased respiratory infections
    Sleep disturbance
    Sleep apnea
    Daytime somnolence
    Weak cough


    POLIO RETURNS TO ATTACK SURVIVORS

    LONDON (Reuters) - The campaign to rid the world of polio is marching toward victory but survivors of the virus have found themselves the target of a surprise counteroffensive. Post-polio syndrome hits people around 30 years after they were originally infected with the virus, like the delayed sting in a scorpion's tail. Intense fatigue, respiratory problems, painful joints and declining muscle strength leave people with PPS feeling as if they have aged before their time.

    "Over the next several years 100 percent of polio victims will have some symptom that is attributable to PPS," Dr. Richard Bruno, a director of the Post-Polio Institute at Englewood hospital and medical center in New Jersey and chairman of the International Post-Polio Taskforce said.

    He believes there are 15 to 20 million polio survivors worldwide but that does not include a large number of people who were never diagnosed with the disease and whose PPS symptoms are often mistaken for something else. "A study published last year shows that half of all people with chronic fatigue syndrome have in fact got PPS," Bruno, who has been working with post polio patients for 17 years, told Reuters.

    At about the time the World Health Organization began its polio eradication program in 1989, polio survivor Esther O'Leary began to notice that a walk that usually took her five minutes was taking 15 minutes and left her exhausted.

    Eleven years later, polio has been stamped out in all but 10 countries in Africa and South Asia. But O'Leary, a 53-year-old mother of four, can no longer sit up straight at the table and lift her food to her mouth. She has to hunch over her plate, bringing her mouth down to meet the fork halfway.

    For a five-minute walk she uses a wheelchair.

    "I used to sip my tea from a cup. Now, because of the weakness, I have to suck it through a straw. At least I have a good excuse for avoiding the ironing," she said.

    OUTWARDLY FINE
    Although polio evokes images of leg braces and coffin-like iron lungs in which some victims were encased, many survivors including actress Mia Farrow and renowned British photographer Lord Snowdon exhibit no trace of the virus.

    Most people who were infected with polio contracted only a mild strain that attacked their brains but did not cause muscular paralysis. Some experienced only flu-like symptoms and were never diagnosed with polio.

    In the confusion of the sporadic epidemics that broke out during the 1940s and 1950s even people whose muscles were paralyzed were not always diagnosed correctly.

    "If you could breathe you were sent home from the hospital. They needed the beds," said Bruno, who estimates that 39 percent of paralytic cases were never diagnosed and the figure for nonparalytic polio could be even higher.

    A major hurdle in the battle against PPS is ignorance of the condition within the medical profession. Widespread vaccination means many doctors have no practical experience of the virus and are skeptical about its late effects.

    "Doctors reject anything new that they did not learn in medical school," Bruno said.

    Patients trek from every corner of the globe to his New Jersey clinic to get treatment they cannot get at home. Although there is no cure for PPS, physiotherapy helps and patients are advised to rest frequently.

    'THERE IS NOBODY TO HELP'
    "There is nobody to help them. Doctors say to them, 'Yes I have heard about it but I do not believe in PPS,' as if it is some sort of religion," he said. "People have been told it is all in their head and they should go and see a psychiatrist."

    Dr. Ali Arshad, a rehabilitation specialist based in the northern English city of Leeds, agreed that doctors are still wary of PPS. "The medical profession here are still quite skeptical, they still have not embraced it 100 percent."

    This skepticism frustrates people with PPS who have struggled to establish the source of their fatigue.

    "It has been an uphill struggle, like trying to climb Mount Everest," said Hilary Hallam, 52. Before PPS stopped her in her tracks the mother of two had led an energetic life that belied any trace of the polio that had paralyzed her in childhood.

    A former policewoman and swimming teacher with an orange belt in judo, Hallam now uses both hands to lift a pint glass.

    "I could not swim fast anymore, could not pull myself out of the water anymore, but the doctors told me there was nothing wrong with me," said Hallam, who founded a support group called the Lincolnshire Post-Polio network in eastern England at http://www.ott.zynet.co.uk/polio/lincolnshire/.

    "I have had to fight every step of the way with the medical
    profession and I am still fighting," she said. "Doctors are still not getting the full picture."
  2. Bambi

    Bambi New Member

    paralized my left leg for awhile and then when the feeling returned I had to wear and brace that fitted over my shoe and extended mid way up my calf.
    I was able to remove the brace in Kindergarten. I have no visable problems left from it, but when I get very tired I have had people tell me I limp slightly.

    I have a couple of the symptoms of PPS but don't have it. If anything my muscles have gotten stronger in the last couple of years especially.

    I saw your post just as they announced that a baby in Ohio has Polio! They said she? has no apparent paralizing problems. I hope not.

    The people in Africa are avoiding the vaccine. I read an article that said when the villages hear they are coming to give the vaccine they run and hide in the brush. They never had Polio there until the vaccine was made mandatory and now they've had a problem of Polio outbreaks.

    When I first heard that it was coming back to people who had it as children the first thing I did was go get a booster of the vaccine. Then just in
    the last five years or so they said they think some people have gotten it from the vaccine. You can't win for
    losing.
  3. libra55

    libra55 New Member

    Personally I don't, but my very good friend had polio as a toddler, and she has Fibromyalgia plus Post-Polio Syndrome. She is 51 or 52 I think, right before the vaccine came out. I know it was released in 1955 same year I was born (I am 49).

    Michelle
  4. ksp56

    ksp56 Member

    In early '1940's' my Dad contracted polio at age six. He spent a very long time in Riley Children's Hospital in, Indianapolis.

    His right arm was affected, but he could still do anything. This arm and hand were smaller.

    I believe Dad had PPS, and looking back, I would bet that he had Fibro and CFS. While some of the symptoms overlap, I know that he had migrating pain and sore areas which would come and go.

    Dad died 2 1/2 years ago. He was a fighter until his last breath. My hero..

    Kim

  5. ksev

    ksev New Member

    Hi, I had polio in the 1950's, I recovered but the last 15yrs. I have had so many problems with my muscles, joints, etc. I am still active but like today I hurt so bad I didn't think I could get out of bed. I did, always do, then I went walking with my walking friend, we go 3 times a week with our dogs. I was just finally told what all is wrong with me. I have FM, Post Polio and spinal nuerophy. Gee I wondered why I hurt so bad. It's good to see a post on this along with FM. I love this site I am learning so much I thank you all.
    Hope your ok today.
    Hugs

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