Post-polio syndrome

Post-polio syndrome is a slow, progressive condition that affects some people who have had polio. It isn't life threatening, but it can make it harder for you to carry out your daily activities.

Polio is a serious viral infection that used to be common in many countries, and across the world. It's rarer now because vaccination can prevent it.

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

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

Post-polio syndrome can cause a number of symptoms:

• 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 weakness and atrophy usually affect muscles that were already hit by polio. Sometimes other muscles are affected too.

This can limit how well you move about and 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. It can be physical fatigue (tiredness) or brain fatigue. Brain fatigue can cause problems with concentration, attention and memory. MRI scans can show white spots in the brains of polio survivors, and these may be related to brain fatigue.

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

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

Some people are sensitive to certain types of anaesthesia, so they take longer to recover after having it.

Post-polio syndrome is caused by the polio virus. It only affects people who've had polio, though it can take 15 to 40 years after the infection for it to develop. Nobody knows if there's anything that can be done to prevent it.

It's also unclear exactly why some people get post-polio syndrome after having the polio virus and others don't.

One possible reason is the gradual degeneration (breaking down) of nerve cells, called motor neurones, in the brainstem or spinal cord that the polio virus had damaged. Because this change is so gradual, it can take years for the symptoms to appear.

While someone is recovering from polio, the motor neurone cells that survive grow new nerve ends to connect with other muscle fibres. This helps them regain muscle strength.

Over time, though, these new nerve ends put the motor neurone cell under stress. The cells slowly break down, and muscle strength is lost.

People who had severe polio at a young age or during adolescence (teenage years) might be more likely to get post-polio syndrome. The same is true of people who had a more serious infection in early adulthood.

Post-polio syndrome is not contagious.

Post-polio syndrome can be hard to diagnose. There's no specific test for it, and it's easy to mistake for other conditions.

Your doctor might suspect post-polio syndrome if:

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

The symptoms of post-polio syndrome come on slowly and get worse over time. If symptoms appear suddenly, something else is more likely to be the cause. A long spell of bed rest because of another illness or a serious injury can bring on post-polio syndrome symptoms.

Some tests can be done to rule out other conditions with similar symptoms. You might be offered blood tests and scans of your spine.

Other tests you might be offered include:

• electromyography (EMG) tests, which measure the electrical activity in your nerves and muscles and pick up damage that may have been caused by having polio
• sleep studies, if you have 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, such as spirometry, to measure your breathing
• tests to look into dysphagia (swallowing problems)

Because there's no cure for post-polio syndrome, treatment focuses on helping you manage your symptoms and your quality of life.

You'll likely have a team of health professionals working together to care for you, including:

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

They'll talk through the most suitable plan for your care, which might include a mixture of the following.

Exercise can help slow down the progressive muscle weakness that post-polio syndrome causes. But staying active can be hard, because your symptoms might get worse after exercise or activity. Any exercise should be pain free, because too much can cause more damage. Pace yourself so you don't become exhausted.

Your health team might suggest 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 avoid becoming worn out. Spacing out your activities through the day leaves rest periods where you can recover in between. Using your muscles and strength efficiently in this way can help them last longer.

Medicine to relieve pain might be used alongside pacing. Your health team might suggest over the counter painkillers like aspirin, paracetamol or ibuprofen. Stronger anti-inflammatory drugs and opiates might also be considered, depending on your needs.

Talk to your doctor if you're taking over the counter medicines, because they shouldn't be used long term. Taken over a long period, they can cause complications like stomach ulcers.

Your health team or doctor might suggest medicine like gabapentin or pregabalin for your pain if over the counter medicines aren't working.

While you're taking medicine for pain, you might not feel the damage that too much activity is doing to your muscles and joints. So it's important to follow your pacing routine even when you don't feel tired or aren't in any pain.

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 health team will go through the most suitable options for you, depending on your needs.

If you have breathing problems, you might benefit from treatment or lifestyle changes. Your breathing problems will be assessed to find the cause. They might be caused by stiff ribs, scoliosis or weak respiratory muscles, for example. Finding the cause helps in choosing the right treatment for you.

You might be offered a machine that delivers pressurised air into your lungs through a mask while you sleep. This helps stop your airways closing if you have sleep apnoea.

There are exercises you can do to strengthen your breathing muscles. A respiratory physiotherapist will help you find exercises that are suitable and safe for you.

Your health team might suggest the pneumococcal vaccination, COVID-19 vaccines and an annual flu jab. These reduce your risk of chest infections, which can cause further complications.

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

Bladder problems are common in people with muscle disorders. You might have urinary incontinence, where you pee by accident. This is often caused by weakness of the pelvic floor muscles combined with weakness of the core muscles.

You're more likely to have urinary incontinence if you:

• have poor mobility
• spend a lot of time sitting down

Pelvic floor exercise may be helpful. An urgent need to pee can sometimes be helped with medicine.

You might also have bowel problems like:

• chronic constipation
• diarrhoea with little warning
• bowel incontinence

If you drink less water than is recommended to avoid going to the toilet during the day, this could cause dehydration. That can make constipation worse and add to bowel problems.

Using a gentle laxative like Lactulose regularly during the week may help. These problems can sometimes be helped with medicine too.

If you're overweight, you might be putting your weakened muscles under further pressure. This can cause problems with your energy levels and general health. Losing weight can help improve your symptoms and general health. Your health team can tell you about specific exercises suitable for you.

Eating a healthy, balanced diet can help you reduce and control your weight, and it'll improve your general health too. A plan that includes healthy foods which release energy slowly over time can help improve your symptoms. You can read the Eatwell Guide on how to eat a healthy balanced diet.

The symptoms of post-polio syndrome can be distressing. Developing it after living with the polio virus as a child can cause anxiety, isolation and stress, and this can lead to depression. Speak to your doctor if you're feeling down and you no longer enjoy things you used to.