Polio is essentially a disease of the past. However, an increasing number of people who have had polio are developing a condition called post-polio syndrome (PPS).
PPS is a poorly understood condition that can cause pain, muscle weakness and fatigue.
The history of polio
In the past, polio was very common. It affected children worldwide, causing paralysis and death. There are now only four countries in which the condition remains a serious problem. These are:
There is no cure for polio so it is important to prevent it from occurring. Make sure your child receives all their necessary vaccinations.
Post-polio syndrome (PPS)
It is not known exactly how many people PPS affects, but some research estimates that it may be up to 75% of people who have had polio. PPS may develop between 10 and 40 years after the initial illness, with symptoms taking an average of 30 years to develop. Only people who have had polio can develop PPS.
It can be difficult to confirm a diagnosis of PPS as no definitive tests are available. However, some tests are used to rule out other conditions with similar symptoms.
The initial symptoms of PPS usually develop gradually and include:
- increasing muscle weakness
- muscle and joint pain
- breathing or sleeping problems
- sensitivity to the cold
Although PPS is rarely life threatening, it can greatly interfere with everyday life, making it difficult to get around or carry out some tasks and activities. This means there may also be secondary symptoms such as weight gain and walking problems.
Read more about the symptoms of PPS.
What causes post-polio syndrome?
The exact causes of PPS are unknown. However, the main theory is that PPS is the result of the gradual deterioration of nerve cells in the spinal cord (called motor neurones) that were damaged by the polio virus. This would also explain why PPS can take years to appear.
PPS is not contagious, and the theory that the polio virus may lay dormant in your system after the original infection has been disproven.
In recent years, PPS has become more common, largely due to the high number of polio cases during the 1940s and 1950s. However, as polio is no longer naturally active in many countries, PPS should become much rarer in the future.
How is post-polio syndrome treated?
Although there is currently no cure for PPS, a range of treatments and support is available to help manage the symptoms and improve quality of life.
Some of the ways that symptoms of PPS may be managed include:
- physical therapy known as "pacing", to help recognise and manage fatigue
- mobility aids, such as walking sticks or scooters
- weight control and healthy eating, to avoid putting unnecessary strain on muscles and joints
- painkilling medication, although this is avoided if possible to prevent people damaging their joints without realising it
- discussing the psychological impact, which might be with your doctor, on an online forum or in a local support group
Read more information about treatment for PPS.
Post-polio syndrome (PPS) can cause a wide range of symptoms which can have a serious effect on everyday life.
Common symptoms of PPS
Fatigue is the most common symptom of PPS. Fatigue can take many forms in PPS, including:
- muscle fatigue, where your muscles feel very tired and heavy, particularly after physical activity
- general fatigue, where you feel an overwhelming sense of physical exhaustion as if you have not slept for days
- mental fatigue, where you find it increasingly difficult to concentrate, have problems remembering things and make mistakes that you would not usually make
Symptoms of fatigue are usually worse in the early afternoon and can often be improved with rest or brief naps.
Increasing muscle weakness is another common symptom of PPS. It can be easy to confuse muscle weakness with muscle fatigue, but they are different.
Muscle weakness means that you are increasingly unable to use affected muscles, whether you feel fatigued or not. Weakness can occur in muscles that were previously affected by an active polio infection, as well as in muscles that were not previously affected.
There may also be associated shrinking of affected muscles. Doctors call this atrophy.
Muscle and joint pain
Muscle and joint pain is also common in PPS. Muscle pain is usually felt as a deep ache in the muscles or muscle cramps and spasms.
The pain is often worse after you have 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.
As well as the common symptoms of PPS, several associated symptoms can arise from the combination of fatigue, muscle weakness and muscle and joint pain.
Because of the combination of fatigue, muscle weakness and muscle and joint pain, most people with PPS 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 the symptoms of fatigue, muscle weakness and pain worse.
As well as weight gain, the combination of fatigue, weakness and pain can lead to walking difficulties and increasing difficulty with mobility. Many people with PPS will require a walking aid, such as crutches or a cane, at some stage and some people may eventually need to use a wheelchair.
Sleep apnoea affects many people with PPS. It is a condition in which the muscles in your throat relax during sleep, which can lead to problems sleeping.
Once the muscles relax, the airway in your throat can narrow or become totally blocked. This interrupts the oxygen supply to your body, which triggers your brain to pull you out of deep sleep so that your airway can be reopened and you can breathe normally.
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 have been speaking for a while or when you are tired.
Usually, swallowing problems are mild and progress very slowly. A speech and language therapist may be able to help.
Sensitivity to cold
Some people with PPS find that parts of their body, usually a limb, become very sensitive to cold temperatures or a sudden drop in temperature due to poor blood supply.
Because of this intolerance to cold, you may need to add extra layers of clothing to the affected body part.
The exact causes of post-polio syndrome (PPS) are unknown. The main theory is that PPS may be caused by the gradual deterioration of nerve cells in the spinal cord (motor neurones), which were damaged by the polio virus.
PPS is not contagious. The theory that the polio virus may lay dormant in your system after the original infection has been disproven.
Motor neurone cells are used by your brain to send signals to your muscles. These cells are targeted by the polio virus.
A polio infection can damage motor neurone cells, leading to a shortage of motor neurones. To compensate for this shortage, the body will enlarge the remaining motor neurones, leading to a recovery of movement in the affected limbs.
It is thought that the high use of these enlarged motor neurones may weaken them and, over many years, the cells may start to break down. This leads to the symptoms of muscle weakness, muscle wasting and fatigue.
This theory would also explain why PPS can take years to appear, and often has slow and progressive symptoms with periods where normal activity is possible.
There are no tests to definitively confirm a diagnosis of post-polio syndrome (PPS). Your doctor will normally make a diagnosis by looking at your medical history and by carrying out a physical examination.
If you have PPS, you will have had a long period without symptoms (usually 10 to 40 years) after the initial attack from the polio virus. Your doctor will ask you when you first noticed your symptoms. The symptoms of PPS usually develop gradually. Therefore, if your symptoms developed suddenly, they may have been caused by a different condition.
As the symptoms of PPS are similar to those of several other conditions, such as arthritis, your doctor will try to rule out any other possible causes of your illness. You may have to undergo a series of tests or procedures, depending on what your doctor suspects could be causing your illness.
For example, you will need to have a blood test. Someone with PPS will usually have normal blood test results. However, if your blood test result is abnormal, it is a strong indication that your symptoms are being caused by a different condition.
You may also have X-rays of your chest and spine or joints.
If, after these tests, your doctor is still unsure whether you have PPS, you may be referred to a hospital consultant. At this stage, you may have some or all of the following tests to rule out other conditions or to confirm the likelihood of PPS:
- electromyography (EMG) tests to determine whether polio has damaged your nerves and muscles (an EMG measures the electrical activity in your muscles and nerves)
- sleep studies if you are having problems sleeping or are feeling unusually tired
- tests to check your heart rate and function
- a magnetic resonance imaging (MRI) scan, a type of imaging scan that can look inside your spine
- lung function tests to measure how well you can breathe in and out
- tests to investigate swallowing problems
It is possible to have PPS as well as other conditions, so not every health problem or symptom you experience may be related to PPS.
Post-polio syndrome (PPS) is a complex condition with a wide range of symptoms that can affect many aspects of your life. As there is currently no cure for PPS, treatment focuses on helping you manage your symptoms and improving your quality of life.
Your care team
You will probably be treated by a combination of different healthcare professionals working together. This type of team is known as a multidisciplinary team (MDT).
Members of your MDT may include:
- a health visitor
- a social worker
- a physiotherapist, who helps people improve their range of movement and co-ordination
- a speech and language therapist, who can help you with any swallowing difficulties you may have
- an occupational therapist, who helps people improve the skills needed for daily activities, such as washing and dressing
- a mobility specialist, who can give advice about mobility aids, such as walking sticks and wheelchairs
An effective way to manage symptoms of fatigue is a type of physical therapy known as pacing.
Pacing involves learning to recognise when to stop what you are doing before you become exhausted.
By always stopping before you are tired, you may be able to accomplish more activities over the space of a day than if you tried to do things without taking a break.
Pacing involves breaking up activities into smaller ones with rests in between.
If you switch between several different jobs or repetitive activities, you will be using different muscles and resting others. If a job cannot be broken up, it may need to be done a completely different way. You may need help from another person or you may realise that the job was not necessary after all.
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 consider having home deliveries.
Many people with PPS have a problem adapting to pacing. This is because when they had polio as a child, they were encouraged to "use it or lose it". In other words, they were told to make every effort to use their muscles, even if it caused pain and fatigue.
Years later, they are being told the exact opposite. For some people, this can be difficult to accept. One way of thinking about pacing is "conserve it and preserve it". If you make effective and efficient use of your strength and muscle function, they will last longer.
Read more information about the importance of pacing on the British Polio Fellowship website.
Ideally, pain and fatigue can be reduced by following the advice above. However, if even the most ordinary daily activities cause pain, various medications are available. These include over-the-counter painkillers - such as aspirin, paracetamol or ibuprofen - and stronger anti-inflammatory drugs and opiates.
Over-the-counter (OTC) remedies should not be used on a long-term basis without discussion with your doctor. This is because they can cause complications, such as stomach ulcers.
While it is not usually considered as an initial option, you may want to discuss [gabapentin] with your doctor. Gabapentin is a medication that was originally developed for epilepsy. However, it has also proved useful for people with PPS pain when other types of painkillers have not helped.
Possible side effects of gabapentin include:
- loss of co-ordination
Do not drive if gabapentin makes you drowsy. Do not suddenly stop taking gabapentin as you will experience withdrawal symptoms.
If you want to stop taking gabapentin or you no longer need to take it, your doctor will arrange for your dose to be gradually reduced over a week. This will ensure that you do not have withdrawal symptoms.
Opiates, such as [codeine], may cause drowsiness or depressed breathing (slow, shallow breathing) as well as other side effects, including constipation. Muscle relaxants, such as benzodiazepines, which are sometimes used for muscle cramps, may also cause drowsiness and increased weakness.
While your pain is being controlled by medication, you may not be aware of damage that could be caused to your joints by too much activity. It is, therefore, important to stick to your pacing regime even if you do not feel any symptoms of fatigue and pain.
Mobility aids, such as walking sticks, crutches, ankle braces, callipers, wheelchairs or scooters, may make it possible to do many of the things that were becoming difficult or impossible.
DLCs have permanent exhibitions of products and equipment. This gives people an opportunity to see and try them and get information and advice from professional staff about what might suit them best.
Mobility aids that can benefit people with PPS include:
- braces that can support weakened muscles and joints, as well as improving posture and preventing falls
- canes and waking sticks
- electric scooters
Weight control and healthy eating
Being overweight can put further strain on weakened muscles and will not help your energy levels or general health. Losing weight, if you need to, can help reduce your PPS symptoms.
While regular exercise is a good way of controlling your weight, it may not be possible because of your physical condition.
Following a sensible, healthy eating plan will help you reduce and control your weight and improve your health. It is important to eat a healthy balanced diet, including foods that provide energy that is 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. If necessary, your doctor can refer you to a dietitian.
The following advice makes use of the pacing technique mentioned above:
- 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. Your local library will stock a range of recipe books.
- Some kitchen equipment, such as food processors, microwaves and slow cookers, can help you save time and energy.
- Some utensils are specially designed for people who do not feel strong or have difficulty using their hands.
- Ready meals and tinned and packet foods are useful if you feel too tired to cook a meal from scratch. However, as they are usually high in salt, sugars and fats, low in vitamins and minerals and contain food additives, do not eat them too often.
Coping with the psychological impact of post-polio syndrome
PPS can often have a severe psychological impact. The symptoms of PPS can be distressing, and developing PPS 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 being affected by polio again. This can lead to feelings of anxiety, isolation and stress, which can sometimes trigger depression.
If you have been feeling very down during the past month and you no longer take pleasure in things that you used to enjoy, you may have depression. If this is the case, see your doctor.
Do not neglect your mental wellbeing. Aside from the adverse effect on your quality of life, feelings of depression and anxiety can interfere with your treatment.