Post-polio syndrome

Post-polio syndrome

Post-polio syndrome is a slow progressive condition that affects some people that have had polio. It’s not life threatening but it can cause problems in your ability to carry out daily activities.

Polio is a serious viral infection that used to be common in the UK and worldwide. It’s rarer now because it can be prevented with vaccination.

In around 1 in 100 people, the polio virus causes paralysis, which in rare cases can be life threatening.

Cases of polio in the UK fell dramatically when routine vaccination was introduced in the mid-1950s.

Symptoms of post-polio syndrome

The symptoms of post-polio syndrome include:

• muscle weakness
• shrinking of the muscles (atrophy)
• tight joints (contractures)
• pain in muscles or joints
• chronic fatigue including physical tiredness and brain fatigue
• swallowing and speech problems
• respiratory problems like breathlessness and sleep apnoea
• cramps and muscle twitching
• being sensitive to cold temperatures

The muscle weakness and atrophy usually affects muscles that were previously affected by polio. Sometimes it affects other muscles.

This can impact your mobility and your ability to do everyday tasks like brushing your teeth or drying your hair.

Chronic fatigue is one of the most common and troublesome symptoms of post-polio syndrome. This can be physical fatigue (tiredness) and brain fatigue. Brain fatigue can cause problems with concentration, attention and memory. MRI scans can show white spots in the brains of polio survivors which may be related to brain fatigue.

The symptoms can gradually get worse over many years. There are supportive treatments that can help with symptoms.

Although post-polio syndrome is rarely life threatening, some people can develop breathing and swallowing difficulties that can lead to serious problems like chest infections.

Some people experience a sensitivity to some types of anaesthesia causing them to take longer to recover from having anaesthesia.

Causes of post-polio syndrome

Post-polio syndrome is caused by the polio virus. It only affects people who’ve had polio although it can take 15 – 40 years after the infection for it to develop. It’s not known if there’s anything that can be done to prevent it.

The exact cause behind who’ll experience post-polio syndrome after having the polio virus is unclear.

It could be because of gradual degeneration (breaking down) of nerve cells (motor neurones) in the brainstem or spinal cord that were damaged by the polio virus. This gradual change explains why it can take years for post-polio syndrome symptoms to appear.

During recovery from polio, surviving motor neurone cells grow new nerve ends to connect with other muscle fibres. This helps to regain muscle strength as someone recovers from the polio virus.

Over time, these new nerve ends put the motor neurone cell under stress. The cells slowly break down, resulting in the loss of muscle strength.

People who have had severe polio at a young age or during adolescence (teenage years) might be more likely to experience post-polio syndrome. People who had a more serious infection in early adulthood are also more likely to develop post-polio syndrome.

Post-polio syndrome is not contagious.

Diagnosis of post-polio syndrome

It can be difficult to diagnose post-polio syndrome. There are no specific tests for it, and it can be mistaken for other conditions.

Your GP might suspect post-polio syndrome if:

• you had polio followed by a long period of stable symptoms (usually 15 years)
• your symptoms have developed gradually

The symptoms of post-polio syndrome are slow and progressive. The sudden appearance of symptoms is more likely to be caused by something else. A prolonged period of bed rest as a result of another illness or serious injury can trigger post-polio syndrome symptoms.

There are some tests that can be done to rule out conditions with similar symptoms.

You might be offered blood tests and scans of your spine.

Other tests that might be offered include:

• electromyography (EMG) tests – these will measure the electrical activity in your nerves and muscles and detect damage that may have been caused by having polio
• sleep studies – if you’re experiencing sleep apnoea or you’re feeling unusually tired
• tests to check your heart function and heart rate
• a magnetic resonance imaging (MRI) scan or computerised tomography (CT) scan of your brain, spine and muscles
• lung function tests like a spirometry to measure your breathing
• test to investigate dysphagia (swallowing problems)

Treatment of post-polio syndrome

As there’s no cure for post-polio syndrome, treatment will help you manage your symptoms and quality of life.

It’s likely you’ll have a multidisciplinary team of healthcare professionals working together to care for you including:

• neurologists
• respiratory specialists
• physiotherapists
• orthotists
• psychologists
• pain management specialists
• occupational therapists

They’ll discuss the most suitable plan for your care which might include a mixture of the following:

Exercise and rest

Exercise can help slow down the progressive muscle weakness that post-polio syndrome causes. However, being active can become difficult because your symptoms might become worse after exercise or activity. Any exercise should be pain free because too much exercise can cause more damage. You should pace yourself to avoid becoming exhausted from exercise.

Your healthcare team might suggest you try using pacing techniques. This might involve:

• prioritising tasks
• finding different ways of doing tasks which prevent pain or exhaustion
• getting help from others to do particularly exhausting tasks
• taking regular breaks and having rest periods regularly throughout your day
• doing some regular gentle exercise that you can gradually build up and stopping before you become exhausted

Pacing can help you prevent becoming worn out. It can help to space out activities throughout the day to allow for rest periods where you can recover in between.

Making effective and efficient use of your muscles and strength in this way can help them to last longer.

Painkillers

Medication to relieve pain might be used in addition to pacing techniques. Your healthcare team might suggest over the counter painkillers like aspirin, paracetamol or ibuprofen. Other stronger anti-inflammatory drugs and opiates might be considered too depending on individual needs.

Talk to your GP if you’re taking over the counter medicines as they shouldn’t be used long term. They can cause complications like stomach ulcers if taken over a long period of time.

Your healthcare team or GP might suggest medication like gabapentin or pregabalin for your pain if over the counter medications aren’t working.

When taking medication for your pain, you might not feel the damage being caused to your muscles and joints through too much activity. This means it’s important you follow your pacing routine even when you don’t feel tired or aren’t in any pain.

Mobility aids

You might benefit from a mobility aid like:

• braces to support weakened muscles and joints, prevent falls and improve posture
• walking sticks to help you balance and prevent falls
• an electric scooter
• a wheelchair

Your healthcare team will discuss the most suitable options for you depending on your needs. Many mobility aids are provided for free by the NHS.

Treatment of breathing problems

If you have breathing problems, you might benefit from treatment or lifestyle changes.

Your breathing problems will be assessed to identify the cause. For example, your breathing problems might be caused by stiff ribs, scoliosis or weak respiratory muscles. Finding the cause will help to choose the correct treatment for you.

You might be offered a machine to deliver pressurised air into your lungs through a mask during sleep. This is to help stop your airways closing if you have sleep apnoea.

There are exercises you can do to increase the strength of your breathing muscles. A respiratory physiotherapist will help you to find suitable and safe exercises for you.

Your healthcare team might suggest you have the pneumococcal vaccination, COVID-19 vaccines and annual flu jab. This is to reduce your risk of getting chest infections which can cause further complications.

If you smoke, stopping smoking can help improve your breathing too.

Healthy eating and weight control

If you’re overweight, you might be putting your weakened muscles under further pressure. This can cause problems with your energy levels and overall health.

Losing weight (if you’re overweight) can help improve your symptoms and general health.

Your healthcare team can tell you about specific exercises suitable for you.

Eating a healthy, balanced diet can help you reduce and control your weight. It’ll also improve your general health. Following a plan that includes healthy foods that provide energy that’s released slowly over time can help improve your symptoms.

Read our Eatwell Guide: How to eat a healthy balanced diet

Coping with psychological factors

The symptoms of post-polio syndrome can be distressing.

Developing post-polio syndrome after living with the polio virus as a child can cause anxiety, isolation and stress. This can lead to depression.

Speak to your GP if you’re feeling down and you no longer enjoy things you used to.