Post-polio syndrome

Overview

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.

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:

• persistent fatigue (extreme tiredness)
• muscle weakness
• shrinking muscles
• muscle and joint pain
• sleep apnoea

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.

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.

Who's affected

Post-polio syndrome only affects people who have had polio. It usually develops 15 to 40 years after the infection.

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.

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.

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.

How post-polio syndrome is treated

There's currently no cure for post-polio syndrome, but support and a range of treatments are available to help manage the symptoms and improve quality of life.

Some of the ways that symptoms of post-polio syndrome may be managed include:

• rest and exercise –such as learning to stop activities before becoming exhausted
• mobility aids –such as walking sticks or scooters
• weight control and healthy eating –to avoid putting unnecessary strain on muscles and joints
• painkilling medication – to help relieve muscle or joint pain
• psychological support – such as discussions with a GP, on an online forum, or in a local support group

Symptoms

Post-polio syndrome can cause a wide range of symptoms that can significantly affect everyday life.

They tend to develop gradually and get worse very slowly over time.

Common symptoms

Fatigue

Fatigue is the most common symptom of post-polio syndrome. It can take many forms, including:

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

Organising your activities so that you don't over-exert yourself and taking regular rests will help to reduce your fatigue.

Muscle weakness

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

Muscle weakness is where you're increasingly unable to use affected muscles, whether you feel tired or not. Weakness can occur in muscles that were previously affected by a 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 post-polio syndrome. Muscle pain is usually felt as a deep ache in the muscles or muscle cramps and spasms.

The pain is often worse after you've 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 post-polio syndrome, a number of associated symptoms can also develop from the combination of fatigue, muscle weakness, and muscle and joint pain.

Weight gain

Because of the symptoms mentioned above, most people with post-polio syndrome 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 also make walking difficult, leading to increasing mobility problems.

Many people with post-polio syndrome will need a walking aid, such as crutches or a stick at some stage, and some people may eventually need to use a wheelchair.

Breathing difficulties

Some people with post-polio syndrome find breathing can be difficult because the breathing muscles become weaker.

This can cause problems such as shortness of breath, interrupted breathing while you sleep (sleep apnoea), and an increased risk of chest infections.

If you have post-polio syndrome, it's important to seek medical advice as soon as possible if you experience symptoms of a possible chest infection, such as coughing up discoloured phlegm or blood, chest pain and wheezing.

Sleep apnoea

Sleep apnoea affects many people with post-polio syndrome. The walls of the throat relax and narrow during sleep, interrupting normal breathing.

This can cause problems such as feeling very sleepy during the day, headaches and increased fatigue.

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've 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 post-polio syndrome find 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 post-polio syndrome may need to wear extra layers of clothing to try to stay comfortable.

Diagnosis

Post-polio syndrome can be difficult to diagnose because there are no specific tests for it and symptoms can be mistaken for other conditions.

Your GP may suspect post-polio syndrome based on your medical history and the results of a physical examination. For example, it may be suspected if:

• you had polio in the past, followed by a long period (usually at least 15 years) of no symptoms
• your symptoms have developed gradually (sudden symptoms are more likely to be caused by a different condition)

As the symptoms of post-polio syndrome can be similar to those of several other conditions, such as arthritis, some tests may be needed to rule out any other possible causes of your problems. These may include blood tests and X-rays of your chest, spine or joints.

Referral to a specialist

If your GP is unsure whether you have post-polio syndrome, you may be referred to a hospital consultant for further testing.

To rule out other conditions, or confirm whether you have post-polio syndrome, tests you may have include:

• electromyography (EMG) tests – to measure the electrical activity in your muscles and nerves and find out whether they're damaged
• sleep studies – if you're having problems sleeping, such as sleep apnoea, or you're feeling unusually tired
• tests to check your heart rate and function
• a magnetic resonance imaging (MRI) scan or computerised tomography (CT) scan of your bones and muscles
• lung function tests – such as spirometry to measure how well you can breathe
• tests to investigate swallowing problems (dysphagia)

It's possible to have post-polio syndrome alongside other conditions, so not every health problem or symptom you experience may be related to the condition.

Treatment

There's currently no cure for post-polio syndrome, so treatment focuses on helping you manage your symptoms and improving your quality of life.

People with the condition are often treated by a team of different healthcare professionals working together. This is known as a multidisciplinary team (MDT).

Members of your MDT may include:

• a neurologist – a specialist in problems affecting the nervous system
• a respiratory consultant – a specialist in problems affecting breathing
• a consultant in rehabilitation medicine – a specialist in managing complex disabilities
• a physiotherapist – who helps people improve their range of movement and co-ordination
• a speech and language therapist – who can help people with swallowing difficulties
• an occupational therapist – who helps people improve the skills needed for daily activities, such as washing and dressing
• a mobility specialist – who can advise you about mobility aids, such as walking sticks and wheelchairs

Rest and exercise

Being active is thought to be beneficial for most people with post-polio syndrome, as it may slow down the progressive muscle weakness.

However, this can be difficult to achieve because your symptoms may feel worse after a period of activity.

To overcome this problem, "pacing" techniques may be recommended. This involves:

• planning and prioritising tasks
• finding alternative ways of doing exhausting tasks and getting help from others when you need it
• taking regular breaks and having rest periods during the day
• doing regular gentle exercise – this should be built-up gradually and stopped before you become exhausted or experience pain

For example, several smaller trips to a supermarket may be easier than one large shop. If driving to the supermarket and back is tiring, you may want to consider having home deliveries.

Pacing can mean you don't wear yourself out and are able to accomplish more activities over the space of a day than if you tried to do things without taking a break.

Many people with post-polio syndrome find it difficult to adapt to pacing at first. This is because when they had polio as a child, they may have been told to make every effort to use their muscles, even if it caused pain and fatigue.

Nowadays, the advice is the opposite. It's thought that making effective and efficient use of your strength and muscle function will help them last longer.

Painkillers

While pain and fatigue can often be reduced using pacing, various medications to help relieve pain are available if you need them. These include over-the-counter painkillers such as aspirin, paracetamol or ibuprofen, and stronger anti-inflammatory drugs and opiates.

Over-the-counter medicines shouldn't be used on a long-term basis without first talking to your GP. This is because some of them can cause complications, such as stomach ulcers, if taken over long periods.

Opiates, such as codeine, may cause drowsiness or depressed breathing (slow, shallow breathing) as well as other side effects, including constipation.

If these medications don't work, your GP may consider prescribing gabapentin for your pain. This medication was originally developed for epilepsy, but has also proved useful for post-polio syndrome pain when other types of painkillers haven't helped.

If you're taking medication to control your pain, you may not be aware of damage that could be caused to your muscles and joints by too much activity. It's therefore important to stick to your pacing regimen, even if you don't feel tired or in pain.

Mobility aids

Mobility aids may make it possible for you to do many of the activities that were becoming difficult or impossible.

Mobility aids that may be of benefit to people with post-polio syndrome include:

• braces that can support weakened muscles and joints, improve posture and prevent falls
• walking sticks
• electric scooters
• wheelchairs

Many mobility aids are available for free on the NHS.

Treating breathing and sleeping problems

If you have breathing difficulties as a result of post-polio syndrome, a number of treatments and lifestyle measures may be useful.

These can include:

• using a machine that delivers pressurised air into your lungs through a mask as you sleep – this can help to stop your airways closing if you have sleep apnoea
• exercises to increase the strength of your breathing muscles
• having the pneumococcal vaccination and annual flu jab – this can reduce your risk of getting serious chest infections

If you smoke, stopping smoking can also help.

Weight control and healthy eating

Being overweight can put further strain on weakened muscles and can have a negative effect on your energy levels and general health. Losing weight (if you need to) may improve your symptoms.

While regular exercise is a good way of controlling your weight, it may not be possible because of your physical condition. Your care team may be able to give you specific advice about this.

Following a sensible healthy eating plan will help you reduce and control your weight, as well as improve your overall health. It's important to eat a healthy, balanced diet, including foods that provide energy that's released slowly over long periods.

Trying new foods, new food combinations or new ways of cooking to widen the variety of tastes and textures and stimulate the appetite can be an enjoyable way to lose weight and improve your health. Your GP can refer you to a dietitian, if necessary.

You can also apply the pacing principles mentioned above to eating and cooking. For example, it may help to:

• plan your meals in advance
• break down cooking tasks into smaller, more manageable ones
• use days when you have more energy to prepare food and cook extra amounts to freeze for less energetic days
• use cookery books that contain simple, healthy meals that are quick to prepare, such as pasta or salads
• use kitchen equipment, such as food processors, microwaves and slow cookers, that can help you save time and energy
• try ready meals and tinned and packet foods if you feel too tired to cook a meal from scratch; however, you should avoid eating these too often because they're usually high in salt, sugars and fats, and low in vitamins and minerals

Managing the psychological impact

Post-polio syndrome can often have a significant psychological impact. The symptoms can be distressing, and developing post-polio syndrome can often bring back painful childhood memories of living with polio.

It can often feel very cruel that, having struggled to overcome a polio infection during childhood, you're affected by polio again. This can lead to feelings of anxiety, isolation and stress, which can sometimes trigger depression.

If you've been feeling very down during the past month and you no longer take pleasure in things that you used to enjoy, you may be depressed. See your GP if this is the case. A number of treatments are available that can help.

It's important not to neglect your mental wellbeing if you have post-polio syndrome. As well as the impact on your quality of life, feelings of depression and anxiety can also interfere with your treatment.

Further help and support

You may find it useful to talk to other people who are living with post-polio syndrome.

Additionally, you may find The British Polio Fellowship's online forum to be a useful resource. The website also has details of useful organisations for people with the condition.