Patient Comments: Post-Polio Syndrome - Symptoms

What were your symptoms associated with post-polio syndrome?

Comment from: Mary, 65-74 Female (Patient) Published: February 02

This polio and then post-polio syndrome can just be overwhelming. I got polio when I was 7, spent months in the hospitals, near and far. I lost all movement, even the ability to roll over. I had the old treatment at the hospital of having the mop bucket rolled in with boiling water, then the nurse picking the wraps up with tongs, rolling them through the ringers on the mop bucket, then lay them all over my body. Of course I could not move, so you just lay there, and took it. What else was there to do! Sometimes they would put me in a tub of very hot water and I would sit there, I still could not move. That was the only treatment at the time. I got most of my movement back, except my left leg is just about dead, all over weakness, and stomach muscles just don't work for my bowels. I just can't have bowel movements without Miralax or enemas. Now there is just so much pain, and exhaustion I simply can't make it through the day without having to stop and sleep, rest and rest. I had three sons, and was able to raise them, used up all my strength doing that. I go to a pain clinic and have to take oxycodone for pain, lots of Tylenol and still can hardly make it. I feel like no one but my husband realizes what I deal with; simply overwhelming. There seems no way out, I am so tired all the time.

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Comment from: pinecrone, 65-74 Female (Patient) Published: February 25

I am 70 and had polio when I was 3. Today I have pain in my legs and back, COPD, and arthritis everywhere. I have told doctors for years that I had polio. Since I was able to walk (a little), they said I was cured! I was sent to physical therapy where the process was more painful than I could bear. At 66 I had an orthopedic doctor confirm it was post-polio. Today I need a wheel chair and can only manage to walk across a room before it is too much. I resent that there are no doctors to help us. Drugs do not work. I've had them all. Life is much better without them. They do not help the pain.

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Comment from: Scitnor, 55-64 Male (Patient) Published: January 06

I contracted polio when I was (I think) 5 years old. I lost ability to walk. As I remember, my right leg gave out, and, as I recall it was painful to attempt to walk. This would have been somewhere during 1957 to 1959 years, I believe. My parents (still living) don't remember my having polio, but I remember having it, yet I'm not clear on what year/s I experienced polio. I recall taking the sugar cubes and in a short time, I was able to walk. Now however, at 63, my right leg gets numb when walking and/or standing and has been steadily getting worse. Today (1-4-16), I woke up to a numb right leg, tingling as though it's asleep and am unable to put any weight on it. Yet, I can bend/operate my right foot. Odd!

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Comment from: Eppy, 75 or over Male (Patient) Published: December 07

I had bulbar poliomyelitis in 1944 when I was 10 years old. I was hospitalized for 1 year. I had slow recovery and left sided body weakness. By age 21 I had full recovery with little vestigial symptoms. At age 75 in 2009, muscle weakness in arms and legs began. I developed COPD. Difficulty swallowing in 2014 caused aspirating pneumonia and MI (myocardial infarction). PEG (percutaneous endoscopic gastrostomy) feeding was set up, which lasted for one year. Present situation is, I have mild physical activity to prevent and delay muscle deterioration. Continual loss is inevitable. I am learning to cope.

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Comment from: Dixie, 65-74 Female (Patient) Published: December 01

I had polio at age 12, temporary paralysis of my neck only. I had full, total recovery, and was on ski team, swim team. Now at 73 and this has been going on undiagnosed for years; chest pain, terrible neck and shoulder pain, nervousness, trouble breathing, sleep apnea, can't concentrate, get flu-like symptoms a lot, terrible fatigue for years, and cannot even swim anymore. I am desperate for some treatment. I am angry that I have told my doctors all these symptoms and just now finally got diagnosed, because I asked them if I have post-polio syndrome. Finally one doctor said yes!

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Post-Polio Syndrome - Treatment Question: What forms of treatment or therapy have you tried to improve muscle strength lost from post-polio syndrome?
Post-Polio Syndrome - Exercise Question: What types of exercise or physical therapy are helpful in managing symptoms associated with post-polio syndrome?

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