Post-polio syndrome

Post-polio syndrome is caused by the polio virus itself. It only develops in people who have already had polio, and it can take anywhere from 15 to 40 years after the original infection to appear. At present, it isn't known whether anything can be done to prevent it.

Doctors don't fully understand why some people who have had polio go on to develop post-polio syndrome while others don't.

One possible explanation is the gradual degeneration, or breaking down, of nerve cells (motor neurones) in the brainstem or spinal cord that were damaged by the original polio infection. This slow process is thought to be why symptoms of post-polio syndrome can take so many years to show up.

While someone is recovering from polio, the motor neurone cells that survived grow new nerve endings to reconnect with muscle fibres. This is part of what helps muscle strength return after the initial illness.

Over time, however, these new nerve endings place extra stress on the motor neurone cell. The cells gradually break down as a result, and this leads to a loss of muscle strength.

People who had severe polio in childhood or adolescence (the teenage years) may be more likely to go on to develop post-polio syndrome. The same is true for people who had a more serious infection in early adulthood.

Post-polio syndrome is not contagious, so it cannot be passed on to anyone else.

Post-polio syndrome can be tricky to diagnose. There is no single test that confirms it, and it can easily be mistaken for other conditions.

Your doctor may suspect post-polio syndrome if:

• you had polio in the past, followed by many years, usually around 15, of stable, unchanging symptoms
• your current symptoms have come on gradually, not suddenly

This gradual, slowly progressive pattern is typical of post-polio syndrome. If symptoms appear suddenly, another cause is more likely. It is also worth knowing that a long spell of bed rest, brought on by another illness or a serious injury, can trigger post-polio syndrome symptoms.

To rule out other conditions that cause similar problems, your doctor may arrange some tests. You might be offered blood tests and scans of your spine, along with other checks such as:

• electromyography (EMG), which measures the electrical activity in your nerves and muscles and can pick up damage caused by earlier polio infection
• a sleep study, if you have signs of sleep apnoea or feel unusually tired
• tests to check how well your heart is working, including your heart rate
• an MRI or CT scan of your brain, spine and muscles
• lung function tests, such as spirometry, to measure your breathing
• tests to look into swallowing difficulties, known as dysphagia

Post-polio syndrome cannot be cured, but treatment can help you manage your symptoms and keep your quality of life as good as possible.

You will usually be looked after by a team of different healthcare professionals working together, which may include:

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

Together, they will work out a care plan suited to you. This may include a combination of the approaches below.

Gentle exercise can help slow down the muscle weakness that post-polio syndrome causes. Staying active is not always easy, since symptoms can get worse after exercise or exertion. Any exercise you do should be pain free, since overdoing it can cause further damage. Pace yourself so you do not become exhausted.

Your healthcare team may suggest pacing techniques, such as:

• prioritising tasks
• finding different ways to do tasks that avoid pain or exhaustion
• asking others for help with particularly tiring tasks
• taking regular breaks and resting throughout the day
• doing gentle exercise that you build up slowly, stopping before you feel worn out

Pacing helps prevent you from becoming worn out. Spacing activities across the day, with rest periods in between to recover, allows you to use your muscles and strength more efficiently, so they last longer.

Pain relieving medicines may be used alongside pacing. Your healthcare team may first suggest over the counter painkillers such as aspirin, paracetamol or ibuprofen. Depending on your needs, stronger anti inflammatory medicines or opiates may also be considered.

If you are taking over the counter medicines, talk to your doctor, since these should not be used for long periods. Long term use can lead to complications such as stomach ulcers.

If over the counter medicines are not enough, your healthcare team or doctor may suggest medicines such as gabapentin or pregabalin for pain.

While on pain medicine, you may not notice the strain being placed on your muscles and joints through overactivity. This is why it is important to keep following your pacing routine even when you do not feel tired or in pain.

You may also benefit from a mobility aid, such as:

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

Your healthcare team will talk through which options would suit you best based on your needs.

If you have breathing difficulties, treatment or lifestyle changes may help. Your breathing will first be assessed to find the cause, which could be stiff ribs, scoliosis or weakened respiratory muscles. Identifying the cause helps guide the right treatment.

You may be offered a machine that delivers pressurised air through a mask while you sleep, which helps keep your airway open if you have sleep apnoea. A respiratory physiotherapist can also guide you through exercises to strengthen your breathing muscles safely.

Your healthcare team may recommend the pneumococcal vaccine, COVID-19 vaccination and an annual flu jab, since these lower your risk of chest infections that could lead to further complications. If you smoke, quitting can also improve your breathing.

Bladder problems are common among people with muscle disorders. You may experience urinary incontinence, meaning you leak urine by accident. This is often due to weakness in the pelvic floor muscles combined with weak core muscles.

You are more likely to have urinary incontinence if you:

• have limited mobility
• spend long periods sitting down

Pelvic floor exercises can help, and medicine can sometimes ease a sudden, urgent need to pee.

You may also experience bowel problems such as:

• long term constipation
• diarrhoea with little warning
• bowel incontinence

Drinking less water than recommended, in an effort to avoid frequent toilet trips, can lead to dehydration, which in turn can worsen constipation and other bowel problems. Taking a gentle laxative such as lactulose regularly through the week may help, and medicine can also ease some bowel symptoms.

Carrying extra weight puts additional pressure on already weakened muscles, which can affect your energy levels and overall health. Losing weight, if you are overweight, can help ease your symptoms and improve your general health. Your healthcare team can suggest exercises suited to you.

Eating a healthy, balanced diet can help you manage your weight and improve your overall health. Following a diet built around foods that release energy slowly can also help ease your symptoms. The Eatwell Guide is a useful reference for building a healthy, balanced diet.

The symptoms of post-polio syndrome can be distressing. Developing this condition after living with polio since childhood can bring on anxiety, isolation and stress, which may lead to depression.

If you are feeling low, or have stopped enjoying things you once did, talk to your doctor.