Post-Polio Syndrome

Courtesy of The British Polio Fellowship.




Whilst Post-Polio Syndrome (PPS) and M.E. resemble one another in many ways, this does not mean that they are one and the same. Similar symptoms include fatigue, lack of endurance, and aches, pains and weakness in muscles. Due to this similarity, some people with PPS are misdiagnosed as having M.E. (a condition far more familiar to modern doctors). The management of these symptoms is also similar, being mainly based around pacing or energy management: that is, striking a balance between over and under activity.

The two diverge in their cause - PPS can only occur in a person with a history of Polio (this could be confirmed or suspected); it is not an immediate consequence of this, but generally occurs 15 or more years later and can affect both those who appear to have made a full recovery and those left with a permanent disability. Whilst there is not full agreement on the cause of PPS, and this may include a number of factors, the most common theory is that overused motor neurons experience a premature ageing; to understand this it is useful to have some understanding of what occurs in the body in the original acute Polio infection.

Poliomyelitis (also known as Polio or Infantile Paralysis) refers to three groups of viruses, which cause a range of symptoms from a short-term flu-like illness (in most people, who may not even know that they had Polio) to paralysis ranging from one or more limbs requiring physiotherapy for rehabilitation to the whole body, including the muscles of breathing and swallowing, necessitating the use of the most famous image of polio - the iron lung. Recovery can be complete with a return to full health and mobility, or partial with a lingering disability. Most often this disability is in the form of paralysis or weakness in one or more limbs; in very rare cases total paralysis may persist indefinitely, resulting in a long-term dependence on ventilation in a similar way to those with severe spinal cord injuries.

In the developed world, acute Polio is virtually unknown now due to vaccination, though it does still occur in the developing world (such as parts of Asia and Africa), and anyone travelling in these areas should ensure that they are vaccinated (check with your GP, Practice Nurse or travel clinic to see if you will be at risk and require vaccination).  People who have had Polio should also be vaccinated as they will only be immune to one of the Polio viruses, the one they contracted, not all of them; it is possible to contract Polio more than once if they are different strains.  Whilst in the past there was a very small risk of developing Polio from the live (sugar lump) vaccine, this is no longer used in the UK and Polio cannot be contracted from the injected vaccine in current use.

The symptoms of Polio when it progresses beyond the flu-like illness stage are caused by the virus attacking motor neurons (a type of nerve involved in movement of muscles) in the spinal cord. Sensory neurons (another type of nerve involved in sensation) are unaffected and, as such, ability to feel pain, heat, cold, touch, etc. is not affected. These motor neurons (like all neurological tissue) cannot be re-grown once dead; therefore, during recovery from Polio neighbouring motor neurons sprout additional branches to supply those muscles that have been left without; unsurprisingly, these can easily be overworked over time. This can lead to a second condition many years later - PPS. In parallel to these motor neurons now handling twice or more their normal workload, unaffected or seemingly unaffected muscles may have had to compensate for those disabled by the Polio virus, for example arms and shoulders may feel the consequences of years of using crutches to make up for weakened legs. In some cases, the motor neurons in a seemingly unaffected muscle or limb may have been damaged themselves by Polio, although, as this was less extreme than in a more severely affected limb, it went unnoticed at the time.

The most common symptoms of PPS are those that are similar to M.E., including fatigue, muscle aches and weakness and lack of endurance. However, there may be other symptoms, including increased sensitivity to cold (especially of limbs), breathing problems (most commonly at night and characterised by a severe headache on waking that eases later), and swallowing and/or speech difficulties.

As there is no test for PPS, it is important that other possible causes of symptoms, such as thyroid problems, diabetes, anaemia etc., are ruled out.  Many of these conditions can be tested for through simple blood tests, which if found to be negative (or positive but symptoms remain after treatment) may result in a diagnosis of PPS at that point, or may prompt a referral for further more specialised tests, such as EMG testing of affected nerves by a Neurologist, to confirm the diagnosis.

Many of the symptoms of PPS can be stopped from progressing, if not reversed, by proper management, the most important part of which is pacing or energy management; over-activity can result in quicker tiring of limited neurological resources, whereas under-activity results in stiffened muscles requiring more effort to 'get going' again. Striking the right balance is the key! In practice this means doing what you want or need to do but building in breaks just before you get tired. It is also important to consider general health measures such as eating a healthy diet, not getting too overweight, and giving up smoking.  It may also be necessary to consider using orthotics such as callipers or braces to support joints that are no longer able to support themselves adequately, particularly in order to prevent further wear and tear on joints and the possibility of falls. Your doctor needs to be aware that you have had Polio, as some drugs may have greater effects on Polio-affected people and will need to be prescribed with greater caution and more carefully monitored - these include beta-blockers, statins, sedatives and anaesthetics.

The British Polio Fellowship is a charity dedicated to helping, supporting and empowering approximately 120,000 people in the UK living with the late effects of Polio and PPS. It provides information, welfare and support to those living with the effects, to enable all to live full independent and integrated lives. By Becoming a member you will also benefit from a dedicated Disability and Benefits Advisor and support through Welfare, Heating and Holiday grants. The bi-monthly membership magazine, The Bulletin, is also a valuable source of information and is a lifeline to many members.