There is no specific cure for PPS. However, properly managed, PPS can stabilise or progress only slowly. Much can be done to manage symptoms in order to retain an independent life.

Treatment currently combines symptom management with self-management strategies. Patients need to think about:

• energy management
• healthy eating
• weight control
• exercise
• relaxation and stress management
• medication
• mobility aids and orthotics
• respiratory help
• complementary/alternative therapies
• psychological and social support

The most crucial aspect of managing PPS is pacing. Many activities can be shortened or broken up into smaller ones, with rests in between. Another useful approach is to rotate between several repetitive activities, thereby using different muscles and resting others.

If a job cannot be broken up it may need to be done in a completely different way, or with help from another person. Several smaller trips to a supermarket may be easier than one large shop, or it may be time to have home deliveries.

For further information and guidance on pacing see our leaflet, Pacing for activity and exercise, written with advice from the physiotherapy department of the Lane Fox Unit at St Thomas’s Hospital in London.

Most PPS symptoms seem to relate to muscle overuse. People who have had polio tend to be just as active as those with far more strength. It is not unusual to use exercise to maintain or increase muscle strength when PPS weakness first begins to develop.

If PPS symptoms are due to muscle overuse, the question of whether to exercise and if so, how much, is a sensitive issue as exercise is traditionally thought to be the route to health and strength. However, as exercise that leads to increased pain and fatigue can cause further weakness, it is important for patients with PPS to exercise or be active just the right amount, according to their own needs.

Aerobic exercises are good for general health, the heart and circulation, but may cause too much fatigue in some people. Gentler exercise is still good for health, well being, muscle strength and mobility.

The best types of exercise are those that can be broken down into short bursts, to see if resting for a few minutes gets rid of any fatigue. It is advisable to start a new kind of exercise very slowly for a short period of time, to make sure it is not causing excess fatigue.

While regular exercise is the most effective way of controlling weight, this may not be possible for everyone. Eating less of the high calorie, refined foods high in sugars and fats and more of the lower calorie and more nutritious foods such as fruit and vegetables will help to reduce weight and improve health. It is important to eat adequate protein, to help with weakness and fatigue and to provide slowly-released energy. This should be balanced with other food groups including complex carbohydrates like wholegrain bread, cereals and rice, which also provide energy over longer periods.

Rest and relaxation are an important part of finding the right balance between activity and saving energy. Rest times need not be seen as something negative or an admission of “failure”, but as a positive time of relaxation while muscles are recharging. Warm baths and showers can be relaxing for muscles. A heating pad may also be helpful for sore, overused muscles as heat increases circulation, bringing oxygen to muscles.

Cold treatment, such as ice packs (traditionally a bag of frozen peas) is helpful for acute injuries in order to reduce swelling, but this may not be advisable if there is poor circulation or cold intolerance.

Sometimes, night-time respiratory assistance may be needed, which may help sleep and daytime fatigue.

If this is the case, two kinds of ventilators may be used:

• continuous positive airway pressure (CPAP) for sleep apnoea and
• bilevel positive airway pressure (BiPAP) for weak respiratory muscles

Ventilators regulate breathing but do not add oxygen to the air breathed. Unless there is lung disease, oxygen is not generally needed. Often the problem in PPS is a build-up of carbon dioxide from not breathing out forcefully enough, rather than a lack of oxygen.

Also helpful for night-time breathing problems are sleeping in a more upright position with more pillows and breathing exercises.

A flu vaccination is important for people with respiratory muscle weakness as lung infections are more common and may cause further harm.

Cold intolerence is best controlled by practical common sense methods, like wearing multiple layers of clothing, two pairs of socks and using heating pads. If cold intolerence affects the whole body, sometimes a comfortably hot bath is the only thing that will affect the overall cold, shivery feeling from being out in cold or windy weather. Cold may also lead to temporary increased weakness and sleepiness. It has been suggested that people with PPS may need to dress as if it were 20 degrees colder.

Our factsheet, Cold Intolerance includes further information about cold intolerance and practical ways to keep warm.

Ideally, pain and fatigue can be reduced with good management and the strategies mentioned above. If even the most ordinary daily activities cause pain, there are various medication options, from over-the-counter painkillers like aspirin, paracetamol or ibuprofen, to stronger anti-inflammatory drugs and opiates. Gabapentin, a drug that was originally devised for epilepsy and nerve pain, has been used for some people with PPS pain where other types of painkillers have not helped. Reducing pain may also help with sleep and fatigue.

Opiates such as codeine may cause drowsiness or depress breathing and have other side effects, including constipation. Muscle relaxants such as benzodiazepines, which are sometimes used for muscle cramps, may also cause drowsiness and increased weakness.

It is important to remember that while pain is being controlled by drugs, more damage may be done leading to more pain later if patients do not look after their joints and pace their activities.

Drug-free alternatives for pain management include TENS (Transcutaneous Electrical Nerve Stimulation) machines. Some people have found acupuncture or hypnotherapy helpful for managing pain.

There have been various trials for drugs that seemed to help with muscle fatigue (pyridostigmine) or general fatigue (modafinil), but large trials were not successful, possibly because the causes of PPS are so varied even when the symptoms seem similar. For instance, modafinil, originally developed for narcolepsy sleepiness, targets one area of the brain, but polio can affect many brain areas. General fatigue may relate more to muscle overuse than brain damage.

There have been trials of intravenous immunoglobulin to help inflammation found in the spinal cord. One of these trials resulted in significant improvement. However, there needs to be further research in this area.

There are three major areas for consideration when prescribing drugs or choosing anaesthesia for someone who has had polio: the effect of the drugs on weakness, breathing difficulties or circulation problems. For example, general anaesthetics often include muscle relaxants, which may lead to weakness for some time afterwards.

If polio affected the brain stem, sedatives may also have a prolonged effect. If the autonomic nervous system has been damaged in some way, this can lead to problems with blood pressure or heart rhythms during anaesthesia. Many people with polio may not realise they have breathing problems as they progress very slowly, so this must be considered when general anaesthetics and pain relief that depresses breathing (codeine, morphine) are used.

For more information about anaesthetics, see our guide about going into hospital.

Some people with polio have reported that certain drugs or combinations of drugs taken for other health conditions have made their PPS symptoms worse or more noticeable. As there is a lack of relevant clinical studies, much of the evidence of problems with certain drugs in people with polio/PPS is anecdotal.

Patients with PPS are at greater risk of adverse side effects if they have reduced respiratory function, muscle weakness or paralysis, swallowing difficulties or if they are over 65 years of age.

There has been very little research into the benefits of individual complementary/alternative therapies, such as acupuncture, homeopathy and hypnotherapy, in relation to PPS. Much of what is documented is anecdotal.

However, there is some agreement that as long as the practitioner is properly qualified complementary therapies may be able to help with PPS symptoms where conventional medicine does not have anything to offer. This has been demonstrated by comments made by members of The British Polio Fellowship.

For further information, see our fact sheet/leaflet, Complementary Therapies

After their lengthy rehabilitation, people who had polio were often told that the disease should be forgotten and that they would become stronger with time, not weaker. After working so hard to recover, it is often difficult to both accept and face increasing weakness and disability, having ignored limitations for so many years.

Many people never talked about having polio, but now, in order for PPS to be understood by family, friends and doctors, it is finally necessary to talk about it and explain the symptoms, some of which may have been ongoing since the original onset of polio.

Explaining PPS and its symptoms can be the first step towards learning to ask for necessary help. But having finally learnt to acknowledge and understand PPS and tried to explain it to family and friends, it can be galling and humiliating to find that other people have their own beliefs about symptoms like pain and fatigue; that they are “all in the mind” and can be cured with exercise.

Everyone needs to find a balance between giving and receiving, helping others and being helped. As this balance can be difficult to find, there is often guilt.

If a patient’s self esteem and sense of self have always revolved around independence, working and having an active life, s/he may need to change his/her beliefs about his/herself, his/her abilities and lifestyle. This may be a difficult process and the patient may need extra support for this.