Everything you need to know about living well with post-polio syndrome
Introduction
Symptoms
Treatments
Daily Living
Support
GlossaryIf you have had polio before, have been given a diagnosis of post-polio syndrome, or know somebody who has, this guide will give you an overview of what post-polio syndrome is, its symptoms, and post-polio syndrome treatments that are available.
If you think you may have any post-polio syndrome symptoms you read here, consult your GP. This guide is not to be taken as an alternative to seeking professional, medical advice.
Post-polio syndrome is a neurological condition that only affects people who have had polio. Polio was common in the 1940s-50s but rarely occurs in the UK now. Some polio survivors have developed a similar set of symptoms, many years after they experienced polio, which is now known as post-polio syndrome. These post-polio syndrome symptoms tend to be symptoms that they experienced when they had polio, which have come back over 15 years later.
Not everyone who had polio in the past would have been diagnosed with polio. Similarly, not everyone who had polio (whether they were diagnosed or not) will get post-polio syndrome.
The condition is still being researched, and causes of post-polio syndrome are not yet established.
For more information about post-polio syndrome, visit the British Polio Fellowship website.
To understand more about the polio virus, visit the NHS website.
Post-polio syndrome occurs when someone experiences a case of polio at some point in life, however not everyone who has had polio will get post-polio syndrome. The condition is not well understood, because it is a relatively ‘new’ condition, having only been identified in the 1980s when polio survivors first starting experiencing post-polio syndrome symptoms.
Research is exploring what causes post-polio syndrome to occur, and why some people get it and others do not. Experts currently believe that the polio virus caused the body’s motor neurones to become damaged, which then become dysfunctional over time.
Here, we discuss the most common symptoms of post-polio syndrome.
Post-polio syndrome symptoms are varied and not everyone who has the condition will experience it the same way. Symptoms vary in severity and onset. Some symptoms may appear sooner than others and not everyone gets the same set of symptoms. Post-polio syndrome symptoms are likely to affect a person’s day to day life to some degree, but again, this will be different for everybody.
If you experience any of the symptoms listed here, even if you have never had a polio diagnosis, you should visit your GP to investigate what these symptoms are. They may be symptoms of minor illness or other health conditions, but it is better to get them checked out.
Post-polio symptoms usually include:
• Muscle fatigue
• Exhaustion
• Difficulty concentrating
• Muscle weakness, pain and spasms – can cause mobility problems, breathing difficulties, sleep apnoea and swallowing problems
• Muscle spasms
• Sensitivity to cold
For more information on symptoms of post-polio syndrome, visit the NHS website.
Post-polio syndrome diagnosis can take some time. Knowledge of the condition amongst GPs has improved over the past decade, but the condition is still not well understood. There are no strict tests that confirm the diagnosis. Your GP may refer you to a neurologist. Often, your GP will rule out lots of other conditions before confirming a diagnosis.
If you believe you may have post-polio syndrome but are finding the diagnostic process difficult, you may wish to contact the British Polio Fellowship, who can provide contact information for medical experts who have more knowledge of the condition, and may be able to confirm a post-polio syndrome diagnosis.
Read on to find out more about the treatment options available if you have post-polio syndrome.
There is currently no cure for post-polio syndrome but there are a range of medications that you may be prescribed to help reduce the impact of post-polio syndrome symptoms on daily life. You may also be recommended lifestyle changes and ways to help manage your symptoms and their effects. You may receive treatment from a range of health and social care professionals, such as a GP, neurologist, occupational therapist, physiotherapist, speech and language therapist, etc.
Fatigue can be difficult to treat with medication, and you'll likely be advised to find ways to manage your daily life effectively; this will prevent you from using up too much energy (causing you to burn out), whilst also ensuring you are not too sedentary, which can make symptoms worse.
Medication to help relieve pain may include:
• Painkillers e.g. aspirin or paracetamol
• Prescription painkillers e.g. codeine
• Non-steroidal anti-inflammatory drugs e.g. ibuprofen, naproxen
Some people also explore complementary therapies such as massage, acupuncture and reflexology to manage their pain, which are not proven to work but seem to offer some health and wellbeing benefits.
If you are finding it difficult to manage pain associated with your condition, you may wish to contact Pain UK, a charity supporting people living with pain.
Some people find they have problems with feeling low, depressed or anxious due to living with a long-term health condition. If you are finding your mental wellbeing is affected, you may wish to explore options for counselling or therapy, and the NHS provides information on these services.
Some people experience breathing problems or sleep apnoea due to muscles in the chest and throat becoming weaker. You may be recommended specialist breathing equipment to help with this, such as a Continuous Positive Airway Pressure Therapy (CPAP) machine that helps you to breathe when you are asleep.
As you can see, there are a number of post-polio treatment options available.
Read on for information about living with post-polio syndrome.
Living with post-polio syndrome can be challenging but the amount it affects a person’s daily life will depend on the type of symptoms they experience and how severe they are. Treatments for post-polio symptoms can help reduce the impact of symptoms, but some people do have issues with mobility. Fatigue can also have an impact on a person’s daily life.
Here, we discuss how to live a healthy life with post-polio syndrome, including taking exercise and eating a suitable post-polio syndrome diet, as well as products for post-polio syndrome that can help with daily tasks. All these factors can help ensure a person with the condition has a good quality of life.
Post-polio syndrome is likely to impact a person’s life in a number of ways but many challenges can be overcome with the right support.
Post-polio syndrome is not very well known, and is not very common, so some people may feel isolated. However there are a number of ways to connect with people in a similar situation in order to share experiences. See our support for post-polio syndrome section for more details about online forums and resources. You may also like to read personal stories about people living with the condition.
Symptoms can make daily tasks more difficult. If this is the case for you or someone you know, you may benefit from having an assessment by an Occupational Therapist, who may be able to recommend ways to adapt tasks to make them easier for you.
There are products for post-polio syndrome which may help with mobility or everyday tasks that you are finding difficult due to your symptoms. Here, we provide some examples of daily living aids for post-polio syndrome which you may find useful:
Household aids
Mobility aids
• Rollator
Chair aids
Toilet aids
Bath and shower aids
If you are unsure what products for post-polio syndrome may help you with daily tasks you are finding difficult, please contact the NRS Healthcare Occupational Therapist product advisors by telephone: 0345 121 8111 or email: [email protected]
Eating a healthy diet can help a person with post-polio syndrome to maintain a healthy weight and help overall health and wellbeing. Eating good foods can also help reduce fatigue and provide the right amount of energy to see you through the day. There is no strict post-polio syndrome diet – it just needs to be balanced and nutritious.
Some people find preparing food tiring, but there are ways to make food easily without having to stand around cooking for hours, so look for gadgets like slow cookers that can do a lot of the hard work for you.
For more advice, download this healthy eating guide from the British Polio Fellowship.
It is important to stay active if you have a post-polio syndrome diagnosis, but pain and fatigue can make this challenging. Some people find that exercising makes their fatigue worse. It is important to take your time and not over exert yourself, whilst still trying to be as active as possible within your own limits. Finding the right amount of activity for yourself is important. If you are unsure how to do this, speak to your GP who may be able to advise, or may refer you to a physiotherapist.
If you have mobility difficulties as a result of your condition, a physiotherapist may also be able to give you exercises for post-polio syndrome effects, to help maintain or improve your gait and strengthen muscles. They may also be able to recommend mobility equipment that will help you get around more easily.
Read this booklet for more information on Pacing for Activity and Exercise.
Remember – you are not alone!
We hope this guide to post-polio syndrome has helped you understand the condition more. If you are concerned you or someone you know may have post-polio syndrome symptoms, speak to your GP.
It may be helpful to talk to other people in similar situations to yourself, and below we list some online forums where you can do just that. We also provide links to other online sources of information which you may find useful.
British Polio Fellowship Forum – the leading UK charity’s forum for members only to share their experiences of the condition
Post-polio Syndrome Facebook Group – a social media group for people to share experiences of post-polio syndrome
British Polio Fellowship – the UK charity’s website featuring information about polio and post-polio syndrome, including leaflets and factsheets, information for healthcare professionals, real life stories, and local support branches
NHS – source of official medical information on post-polio syndrome including symptoms and treatments
Pain UK – a charity supporting people living with pain, offering information about various health conditions and a helpline for members
Polio survivors network – a charity run by polio survivors who have come together to support others, with a website offering information about polio-related conditions and newsletters for members
Unsure what something means? Checkout our Glossary section below.
Although we always try to explain things as simply and as clearly as possible, sometimes it’s necessary to use the correct medical terminology.
Medical terms are often known for being tricky to pronounce, and if you’re not an expert on the subject, they can also be a little difficult to understand. Below, we’ve put together a list of terms used on this page along with a brief explanation of what they mean to help make your understanding of post-polio syndrome as straightforward as possible.
Polio
– short for poliomyelitis, this is a viral infection present in only some parts of the world now (due to effective immunisations) which may cause temporary or permanent paralysis, and which we now understand causes symptoms in some survivors, decades after the initial infection
Neurological
– relating to the brain, spinal cord and nerve cells which transmit messages around the body
Sleep apnoea
– a condition that causes temporary disruption to airflow in some people whilst they are asleep
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