WHAT IS POST POLIO SYNDROME
Post Polio Syndrome is a poorly understood condition that can affect people who have had polio in the past.
Polio is a viral infection that used to be common in the UK, but is now rare.
Most people who had Polio would have fought off the infection without even realising they were infected.
Some people with Polio would have had paralysis, muscle weakness and shrinking of the muscles. But usually, these problems would have either gone away over the following weeks or months, or remained the same for years afterwards.
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Post Polio Syndrome is where some of these symptoms return or get worse many years or decades after the original polio infection.
SYMPTOMS OF POST POLIO SYNDROME
Post Polio Syndrome can include a wide range of symptoms that develop gradually over time, including:
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persistent fatigue (extreme tiredness)
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muscle weakness
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shrinking muscles
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muscle and joint pain
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The condition can have a significant impact on everyday life, making it very difficult to get around and carry out certain tasks and activities. The symptoms tend to get gradually worse over many years, but this happens very slowly and treatment may help slow it down further.
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Post Polio Syndrome is rarely life-threatening, although some people develop breathing and swallowing difficulties that can lead to serious problems, such as chest infections.
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WHO'S AFFECTED
Post Polio Syndrome only affects people who've had polio. It usually develops 15 to 40 years after the infection.
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The condition has become more common in the UK in recent years, because of the high number of Polio cases that occurred during the 1940s and 1950s, before routine vaccination was introduced. It's estimated that there are around 120,000 people living in the UK who survived Polio when they were younger. Some of these have, or will develop, Post Polio Syndrome.
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It's not known exactly how many Polio survivors are or will be affected by Post Polio Syndrome. Estimates vary from as low as 15% to as high as 80%.
WHAT CAUSES POST-POLIO SYNDROME?
The exact cause of post Polio Syndrome is unclear. It's not known whether anything can be done to prevent it.
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The leading theory is that it's the result of the gradual deterioration of nerve cells in the spinal cord (motor neurones) that were damaged by the Polio virus. This would explain why the condition can take years to appear.
Post Polio Syndrome isn't contagious. The theory that the Polio virus may lie dormant in your body, causing Post Polio Syndrome when it becomes reactivated at a later stage, has been disproven.
It's not clear why only some people who've had polio develop Post Polio Syndrome. Those who had severe Polio when they were younger may be more likely to develop the condition.
Contacts us: 0800 043 1935
Email us: info@britishpolio.org.uk
Sheila Gray
Sheila was six when she contracted polio and her family's life changed dramatically. The polio virus left her with weakness, particularly in her left arm and leg and she had to walk on tiptoes because her right foot wouldn’t flex.
The first six weeks of my life were quite exotic really. It’s a shame I don’t remember them. I was born in India, where my father was serving in the army. But then we (me, my parents and my two sisters) headed back to London.
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We stayed there for four years, but just after my little brother was born, we relocated to Liverpool. I don’t know why we moved, but I do remember all six of us had to live and sleep in one room. It was very noisy, but I didn’t mind.
Who knows if we would have done more travelling, but in round about 1950, when I was six, suddenly our lives changed dramatically; I contracted polio.
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My parents had no idea how or where I’d caught it and thankfully neither of my two sisters nor my little brother got it, it was just me.
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It was a nice evening, so I’d had my tea and gone to play with friends in the park. But soon after getting there I started to feel unwell. I went home and my mum put me straight to bed, presumably thinking a good night’s sleep would sort me out.
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The next morning, I woke and tried to get up and out of bed. I couldn’t move my legs and fell to the floor. My mum called the doctor straight away, and he told her it was infantile paralysis (polio). Hearing those words back then must have been terrifying for a parent.
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An ambulance was called, and I was wrapped up in a big red blanket and taken to Liverpool’s Royal Children’s Hospital. I remember they gave me some brown medicine and put me in a big hospital ward.
While I was there, I tried to walk using a chair. There was a voice inside my head that just kept telling me to walk, I should walk. But I couldn’t really do it.
The polio virus left me weak from my waist down, particularly down the left side. Both my leg and my arm were weak. On my right side, my foot wouldn’t flex. I had to walk on my tiptoes because I couldn’t put my foot flat to the ground.
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Slowly I gained some strength back and was eventually allowed to go home. I left hospital with a full-length calliper on my left leg, but it was hard to walk. I couldn’t bend my knee.
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I was able to go to school and see my friends again. I kept the calliper until I was about eight or nine but after it was taken away, I started to fall over a lot. I was never teased about that though or bullied.
When I was 10, I had time off school for an operation on my right foot. It was to make the foot flex again, so I could walk properly. My legs were the same length, but I had a curve in my spine which made one hip higher than the other. After the operation I had to have a right shoe that was three quarters of an inch high and a left shoe that was a quarter of an inch, to try and balance my walking.
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I went back to school and carried on, living a fairly normal and active life. I got married and worked lots of different jobs. I didn’t give up work until after my first child. I was 29, with three children, before we moved to Scotland. We then went on to have two more.
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By the time I was 40 I started getting a lot of urinary infections. They became quite regular and the last time I had was really bad, so the doctor put me on antibiotics. I take one antibiotic at night to keep the infection at bay. It seems to be working. Whenever I see the early signs of an infection, I go straight onto the antibiotics. I still have to go to the toilet a lot though and I don’t seem to have very must control any more. An ultrasound showed my kidneys aren’t good, but the doctor is keeping an eye on them for now.
I noticed things really started to get weaker and more painful when I was about 50. My left leg has always been a bit thinner at the calf, than the right one, but it started to feel a lot weaker. For example, I drive a car and used to get in and out, no problem. Suddenly I had to start to lift my left leg and put it into the car. I just thought it was one of those things. But one day, when we were all going to Butlins in Scotland for a day out, I just couldn’t do it. I was only 52.
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By the time I reached 64, I couldn't really walk. I was struggling badly to move from A to B and would quickly get out of breath. I felt exhausted. I’d have to hold on to something because I just couldn't do it. About the same time, I also started to get pains in my back, which I’d never had before. I couldn’t go anywhere. I couldn’t travel abroad on holiday any more. I had to stay in the UK and go somewhere flat.
Nowadays, I can’t walk without an aid. I have a frame for walking when I’m in the house. If I go outside, I use a walker (one I can sit on). My legs get very tired, and I have to sit down. But I still try and get out as much as possible and I still have my car. That’s important to me. I just stay local and don’t drive long distances.
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I get so exhaustion. It takes me all the time to get up, dressed and ready. I feel tired all day.
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My muscles are getting more painful. I take Pregabalin (used to treat nerve pain), which has been prescribed by my doctor. He told me if I come off it, I’ll be in a lot more pain than I am now.
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I used to take co-codamol but had to stop it because it made me very, very constipation (a common side effect). If the pain is really bad, I’ll take paracetamol. It just takes the edge off the pain. I don’t want to take any more medication than I have to. I’m thinking of trying those cannabis patches before I go to bed, to see if they help.
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I can’t do the activities I used to do because I get so exhausted, but I still swim. I love swimming and go every week with my son. When I’m in the water, people don’t think there is anything wrong with me. I can swim up and down, no problem but as soon as I get out of the water sometimes (not all the time) the pain can be quite bad. I imagine it’s the cold.
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I hate the cold. I can’t warm the back of my legs or my bottom, they’re always cold. The right side of the leg is very numb now as well. It started in lock down. The doctor thinks it’s a trapped nerve.
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Swallowing has become a problem. It feels like I’ve got some food stuck in my throat sometimes. I have to have a drink of water and wait for it to clear. Everyone else has usually finished their meal and I’m still eating. By this time my foods gone cold.
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My old doctor never seemed to know anything about post-polio syndrome. He used to tell me my nerve ends have gone, but I didn’t understand what that meant.
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My son looked it up once, probably 20 years ago now and he said it could be post-polio syndrome. All the problems I was facing were listed on the website. I mentioned it to my doctor at the time and he referred me to a consultant. It was only then that I was diagnosed with post-polio syndrome.