Polio - Treating post-polio syndrome

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

People with PPS 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 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 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 give advice about mobility aids, such as walking sticks and wheelchairs

Pacing

An effective way to manage fatigue and pain is a type of physical therapy known as pacing. This involves recognising when you become exhausted doing certain activities and learning to stop and rest before you reach that point again. Activities are therefore broken up into smaller ones with rests in between.

By 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.

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 find it difficult 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.

Nowadays, the advice is the exact opposite. For some people, this can be difficult to accept or adapt to. 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.

Medication

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 (OTC) remedies should not be used on a long-term basis without discussion with 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.

While it is not usually considered as an initial option, you may want to discuss taking gabapentin with your GP. Gabapentin is a medication that was originally developed for epilepsy, but it has also proved useful for people with PPS pain when other types of painkillers have not helped.

If you are 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 do not feel fatigued or in pain.

Mobility aids

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

Many mobility aids are available free on the NHS. Before you contact your local supplier, it is important to have an idea of what is available. You can get help with this from disabled living centres (DLCs). Read more about accessing equipment through the NHS.

DLCs have 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. The contact details of all the DLCs in England are available on the Assist UK website.

Mobility aids that may be of benefit to 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
• wheelchairs

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, as well as 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 GP can refer you to a dietitian.

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, although you should avoid eating these too often as they are usually high in salt, sugars and fats, and low in vitamins and minerals

Managing the psychological impact of PPS

PPS can often have a significant 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 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 be depressed. If this is the case, see your GP. They may recommend medication or a "talking therapy", such as cognitive behavioural therapy (CBT).

It's important not to neglect your mental wellbeing. Aside from the adverse effect on your quality of life, feelings of depression and anxiety can interfere with your treatment.

You may find it useful to talk to other people who are living with PPS. The British Polio Fellowship website has an online forum as well as details of useful organisations for people with PPS.