Post-polio syndrome - Symptoms 

Symptoms of post-polio syndrome 

Post-polio syndrome (PPS) can cause a wide range of symptoms that can have a serious effect on everyday life.

Common symptoms of PPS

Fatigue

Fatigue is the most common symptom of PPS. It can take many forms in people with the condition, including:

  • muscle fatigue  where your muscles feel very tired and heavy, particularly after physical activity
  • general fatigue  where you feel an overwhelming sense of physical exhaustion, as if you have not slept for days
  • mental fatigue  where you find it increasingly difficult to concentrate, have problems remembering things and make mistakes that you would not usually make

The fatigue experienced by people with PPS is usually worse in the early afternoon and improves with rest or brief naps.

Muscle weakness

Increasing muscle weakness is another common symptom of PPS. It can be easy to confuse muscle weakness with muscle fatigue, but they are different.

Muscle weakness means that you are increasingly unable to use affected muscles, whether you feel fatigued or not. Weakness can occur in muscles that were previously affected by an active polio infection, as well as in muscles that were not previously affected.

There may also be associated shrinking of affected muscles, known as atrophy.

Muscle and joint pain

Muscle and joint pain are also common in PPS. Muscle pain is usually felt as a deep ache in the muscles or muscle cramps and spasms.

The pain is often worse after you have used the affected muscles. It can be particularly troublesome during the evening after a day's activities.

Joint pain is similar to arthritis and consists of soreness, stiffness and a reduced range of movement.

Associated symptoms

As well as the common symptoms of PPS, several associated symptoms can arise from the combination of fatigue, muscle weakness and muscle and joint pain.

Weight gain

Because of the common symptoms mentioned above, most people with PPS become less physically active than they used to be.

This can often lead to weight gain and, in some cases, obesity. This in turn can make any fatigue, muscle weakness and pain worse.

Walking difficulties

As well as weight gain, the combination of fatigue, weakness and pain can lead to walking difficulties and increasing difficulty with mobility.

Many people with PPS will require a walking aid such as crutches or a cane at some stage, and some people may eventually need to use a wheelchair.

Sleep apnoea

Sleep apnoea affects many people with PPS. It is a condition in which the muscles in your throat relax during sleep, which can lead to problems sleeping.

Once the muscles relax, the airway in your throat can narrow or become totally blocked. This interrupts the oxygen supply to your body, which triggers your brain to pull you out of deep sleep so that your airway can be reopened and you can breathe normally.

Swallowing problems

Weakness in the muscles you use for chewing and swallowing may lead to problems swallowing (dysphagia), such as choking or gagging when you try to swallow.

You may experience changes in your voice and speech, such as hoarseness, low volume or a nasal-sounding voice, particularly after you have been speaking for a while or when you are tired. 

Swallowing problems are usually mild and progress very slowly. A speech and language therapist may be able to help.

Sensitivity to cold

Some people with PPS find that they become very sensitive to cold temperatures or a sudden drop in temperature as a result of poor blood supply.

Because of this intolerance to cold, people with PPS may need to wear extra layers of clothing to try to stay comfortable.

Page last reviewed: 14/11/2013

Next review due: 14/11/2015

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Comments

The 7 comments posted are personal views. Any information they give has not been checked and may not be accurate.

fellman said on 16 September 2012

It has been a while since I visited this site and there does seem to have been an improvement. I thought my occasional swallowing problems were just me. Who knew?
My problems are mainly with the right leg and during the last 10 years I have had to revert from one walking stick to two and the hands are (sorry) taking some stick! I like to cook and bouncing around the kitchen (fortunately small) is almost comic.
The quote last year from Tennyson's Ulysses is still a strong chord but of course we all know there is only one exit.

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Ben Hunter said on 20 February 2012

The latest review of this article is a big improvement. No longer do I need to be concerned that health professionals are being misinformed. Polio survivors now have a better chance of receiving the help and understanding they deserve.

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Ben Hunter said on 27 August 2011

I'm with you Ladybell. Like Gerry I have led a very active life, still try to, but now find that polio and its after effect is beating me. Frustration!

The widespread ignorance of PPS and its effects is shameful. All the information is available on-line but some medical practitioners still advise unsuitable treatments. There is no mention in this article about the need for pacing our activities or the damage which can be caused through over-exercising. Yet some of us are still being told to 'pump iron' to rebuild our almost non-existent muscles. All this does is destroy even more of our small supply of motor-neurones thus speeding up our physical decine. I despair.

There are about 120,000 of us surviving in the UK at the present but other medical conditions with fewer victims receive far greater publicity, attention and care.

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dissilusioned said on 27 August 2011

Gerry, you seem to be one of the few who do not develop PPS, long may it last.
The days of pushing yourself until you can't go any further are gone for some of us, I am just starting out on this journey of finding help for what is failing me at the moment and to say that I am dillousioned is a bit of an understatement.
The research has been done & published since 1997, the NHS should make use of this & pass it to patients & staff I might add, we are still alive if all but forgotten

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dissilusioned said on 27 August 2011

In all the studies published it does state that not everyone who had polio will develop PPS, Gerry seems to be one of the few who hasn't.
The studies have been going on & published since 1997 and still we have problems with G.P's & Consultants who would rather put it down to problems with age or some other causes. The days of pushing yourself regardless of how you feel/cope with it have gone, we no longer have our youth to fall back on, remember how much energy it took to be 'normal'. We can no longer ignore our bodies when bits are 'failing'. We look to the NHS for help but end up educating them, that's if they will listen, most don't because we don't have MD after our names.
I am extremely dissapointed about what I have found out so far and am worried that as I have just started to look for help for 'failing' bits, there is not a lot of help out there.
I am at this time waiting for an appointment to see a rehabilitation consultant, never having had to use 'aids' since my teens, I now find myself with a splint for a failing ankle, the orthotist have done all that they can do for now, so I wait.

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Gerry Adgar said on 13 June 2011

I am sorry that ladybell finds it difficult to cope. I contracted polio as a 3 year old in 1955 and at times childhood was pretty dreadful including a clear memory of being unable to kick a football because my right leg wouldn't work, even with a calliper. Then there was all the surgery in my teens. But, I have walked the Pennine Way climbed Ben Nevis, Scafell, Snowdon and many other peaks (albeit over 20 years ago) and more recently cycled from Newcastle to Edinburgh. Forty something years of walking sticks is starting to take it's toll on my hands but, for all it's faults, 3 cheers for the NHS.
To paraphrase:
Tho' much is taken, much abides, and tho'
We are not now that strength which in old days
Moved earth and heaven; that which we are, we are
One equal temper of hearts
Made weak by time and fate, but strong in will
To strive, to seek, to find, and not to yield
I hope the new drive to eradicate polio from the rest of the world succeeds!

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ladybell said on 15 May 2011

I can't believe that the NHS makes so of little of Post Polio.
Reading the above belittles everything we have been through, first, when we had Polio, and our efforts to overcome our problems, now, after all these years, it returns and again we find our life a total struggle.
I have lost the use of my left hand due to muscle atrophy, my right leg is withering, my left ankle has become paralysed. Not to mention the main muscle in the left side of my spine has such atrophy I can hardly stand up. And, all this in the last few years. I am now 62.
The pain is hard to live with. As for the cold intolerance, it is not one limb, it is the whole body that goes cold and takes so long to warm up using everything, fires, hot water bottles.
I am now frightened of my old age, where once I looked forward to it. I now know that if my wonderful husband goes before me, I shall have to go into a home!
There are so many of us now, but as Polio is now eradicated in the UK, we are not worth any research, or it seems by the above information given, any understanding and truth of our now failing health.
Shame on you the NHS.
Whoever wrote this has not done any real research and has no understanding of our problems.

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