Patient Comments: Post-Polio Syndrome - Symptoms


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Comment from: julesgarden, 65-74 Female (Patient) Published: January 30

I contracted polio when I was 18 months old and spent the next 3 years going to therapy 5 days a week, which consisted of electro-shock on my right leg muscles, then a whirlpool bath. I had to wear a brace from my knee to my ankle, which constantly rubbed the skin off my ankle bone. I could not move my foot to climb. At 12, I had reconstructive surgery that helped, although I still can only move that foot about an inch, which still makes tripping a constant threat. At age 50, I started feeling tired all the time and my muscles have grown progressively weaker over the past 18 years and I find I can do less and less, which really annoys because I was an avid gardener. I take a half of a Norco after lunch to see me through the afternoons if I've been active in the morning. I have a lot of nerve pain from the post-polio syndrome, so I take gabapentin after dinner to help me sleep. And when my muscles are really sore, I take a meloxicam to reduce swelling (Aleve has no effect). I'm having problems with insomnia a few times a month now, but have avoided taking sleeping pills and just take a melatonin an hour before bed if it lasts more than one night. These are certainly not the 'golden years' I'd hoped for after working 35 years and raising 2 children. I'm 68 but feel twenty years older than that most days. I went to the polio clinic (USD 300 copay!) to see what new developments in polio care there have been in the last 60 years and all they said was my neurologist was prescribing the correct medication and I should probably start using a cane and 'would you like to be part of our study?' I was so angry, I just left. This is the level of 'care' we get.

Comment from: Tricia, 65-74 Female (Patient) Published: November 07

I was just 3 or 4 years old when I had a severe illness then called 'black measles'. All I remember is being rushed to hospital and was put in isolation and was very lucky to survive. From that I had the polio virus which has left me with severe restless legs syndrome which was never properly diagnosed until I was well into adulthood; it was always said to be growing pains. I'm on treatment after horrible nerve conduction tests to finally diagnose post-polio syndrome and to complicate things I also have arthritis, fibromyalgia and poor circulation. All this is not life threatening but very debilitating.

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.

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.

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!

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.

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!

Comment from: Linda G., 55-64 Female (Patient) Published: May 05

I have every symptom from the post-polio syndrome. I am 59 years old and contracted polio at the age of 18 months. Along with the normal symptoms, I have bouts of chronic costochondritis. I have so much shoulder, neck and chest pain which makes it very difficult to wear a bra. My breasts are very uneven from muscle mass damage. I am so tired of having to take pain medication to wear a bra that I'm willing to have my breast removed. I am seeing a surgeon on May 14th, 2015.

Comment from: Greek, Female (Patient) Published: September 03

Choking, joint pain and depression became my biggest challenge 10 years ago. Despite my positive character, the post-polio syndrome (PPS) takes a toll on me and I feel overwhelmed that doctors know so little about it! I wish I knew doctors that do not see me as an experiment. I was only 8 months old in Greece when I came down with paralytic polio but I was determined to use 80% of my mobility. The fight these days is not only physical but emotional too!

Comment from: Linda, 55-64 Female (Patient) Published: May 01

I contracted polio in 1952 at age 15 months. I wore braces and had a muscles contract with muscle wasting on my right side. After surgery and being sent to a rehabilitation facility, at age 8 for a year, I was expected to fit in, and spent much of my time trying to measure up to everyone else. I married right out of high school and was able to have 3 children. As I look back on it, I was still trying to catch up. I picked professions that were physically hard. I was a hair dresser and would stand for hours and be exhausted. I went to nursing school at age 40 and became a registered nurse. At work, I had periods of weakness and had trouble doing my job, which was lifting, pushing, pulling standing, stooping, etc. I began falling almost on a daily basis, and again tried to hide the fact that I was too weak and it was getting worse. I could hardly struggle out to my car after a shift. This is just a little of the symptoms I had. I also have shortness of breath and trouble swallowing at times. Exercise makes my muscles waste even further. Joint problems with surgeries another symptom. It is getting worse as I age.

Comment from: shermada, 45-54 Female (Patient) Published: February 28

I contracted polio in 1970 at age 8 from the Sabin oral vaccine. It took about 4 or 5 months to recover, however about a year later I began having problems with my knee joints swelling. Now, for the past few years I have been dealing with increasing muscle fatigue, generalized fatigue and muscle pain. I am also experiencing increasing numbness. And I fall a lot. My life was ruined because of this vaccine. I wish my parents would have just skipped it and took their chances. A doctor told me years ago that only one half of one percent of people vaccinated develop polio from the vaccine. That the benefits outweigh the risks. That"s all well and good as long as you aren"t the unlucky one half of one percent.

Comment from: Ken D, 75 or over Male (Patient) Published: February 11

I am now 82 years old and contracted polio while in Korea in 1961. I was totally paralyzed from my waist down. I was treated for 4 months as a civilian in a military hospital and treated for 2 additional months in a university hospital in the United States. The therapy was great and I eventually regained the use of my legs with the aid of forearm crutches. There was a short period where I could walk for a short time without the use of crutches. My leg muscles began to deteriorate when I fell in 1980 and broke my hip. Further deterioration occurred in 1999 when I fell and broke my femur, and more in 2003 when I fell again and broke my tibia. All these were on my left side where my recovered muscles were weakest. I was still able to walk with the aid of the crutches for short distances. In December of 2013, I reached a point, while walking, that I dared not take another step or I would fall again. I was able to sit on a chair that happened to be nearby. I dared not try to get up and called 911 for assistance. Since then I have been using my wheelchair and a walker trying to build the leg muscles to the point I could again get around with the use of my forearm crutches. So far I am not there, but I will keep trying! I do hope I am not overdoing it with too much exercise.

Comment from: roy, 45-54 Male (Patient) Published: October 18

I had polio at the age of 18 months and I wasn't vaccinated. I was paralyzed, I have a bad left leg and hip and scoliosis. I've had 11 surgeries and looking at more, I just had bone took out of my left hand, now I need my right knee replaced. I have post-polio syndrome and it is greatly affecting my body from lack of sleep, fatigued muscles, lack of energy and throat problems. I'm on 13 medicines. My right leg has given up from carrying the bad left leg. I worked hard for 25 yrs. in a factory, now I can hardly get out of bed. I'm only 54 years old, I contracted polio in 1961.

Comment from: kj, 65-74 Female (Patient) Published: June 12

I contracted paralytic polio (severe) in 1952 when I was 5 years old. After a great deal of time in the hospital and school for the physically handicapped (and a tremendous amount of physical therapy!), I went on to enjoying a life of academia, which also included skiing, running, dancing, etc. In the mid-1990s, I was diagnosed with post-polio syndrome, and symptoms included fatigue, muscle weakness, sleep disturbances, muscle pain, etc. The symptoms seemed to abate in the late 1990s until 2009, when PPS appeared in my life in a strong and progressive way which, in addition to the above stated symptoms, included balance problems, falls (with injuries), dropping items, tremors, increased sleep disturbances, pain, lack of coordination, and perhaps the most frustrating symptom of all, problems with word identification. The symptoms appear to be exacerbated by stress. At the urging of my physician, I was able to earn a service dog 12 months ago. I can't even begin to share how much having a service dog has changed my life! He counterbalances when I have balance issues, allows me to walk greater distances, braces when I fall so that I can lift myself up holding onto his vest/harness, picks up dropped items for me, and during those times I'm unable to identify words, he responds to hand signals. My physician said that he had worries that should I wear braces, use crutches, etc. My falls could easily end in large bone fractures and that a service dog would best meet my needs. He was right on target, and in addition to all the assistance my service dog provides, he is also incredibly helpful in grounding me and helping me to refocus. I'm the luckiest person in the world to have Nate, my service dog.

Comment from: Stump, 65-74 Male (Patient) Published: April 22

I had polio in 1950 (age 4). When I take off my brace and let my leg hang, the foot turns a dark red color. Sometimes the foot can be cold or hot to the touch. I wonder if this is part of the post-polio syndrome. The doctors I have don't seem to have clue. I have always been very active.

Comment from: Charlie, 75 or over Male (Patient) Published: May 28

I had polio at age 26 in 1952. I had the type that did not lead to paralysis or involvement (abortive polio). For years, I had mild swallowing problems. I played tennis with no affect for many years. Then in 2012, I experienced profound fatigue and an inability to absorb oxygen. Extensive cardiological exams and scans showed no reason for problems. I could sleep on my left side, but not on my right and have sleep apnea. I chaired the March of Dimes in Western New York in the late 1950s. Now what?

Comment from: Karen, 65-74 Female (Patient) Published: May 13

I contract polio when I was 21 months old in Japan. Except for a slightly deformed foot and leg aches I was OK until about 1980. I joined the military in 1973 – obviously, this was a mistake. I began to feel an overwhelming fatigue. I had a problem with cold or extreme temperatures. (Now that I think about it I used to shake on the way to school in Ohio, I remember my Dad telling me to relax and I wouldn't be so cold). Other symptoms include an inability to concentrate and a poor memory.

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