Post-Polio Syndrome

Original Editor - Peter Thwaites Top Contributors - Natalie Patterson, Peter Thwaites, Tony Lowe and Kim Jackson

This article is currently under review and may not be up to date. Please come back soon to see the finished work! (3/10/2020)

Post-Polio Syndrome(PPS)

What is Post Polio Syndrome

Post Polio Syndrome is a poorly understood condition that can affect people who have previously had polio.[1] Polio is a viral infection that used to be common in the UK, Polio cases have decreased by over 99% since 1988, from an estimated 350 000 cases to 175 reported cases in 2019[2]

Most people who had Polio would have fought off the infection without even realising they were infected. However, some people with polio would have had paralysis, muscle weakness and shrinking of the muscles. But usually, these problems would have resolved over the following weeks or months, or remained the same for years afterwards.[1]

​Post Polio Syndrome is where some of these symptoms return or get worse many years or decades after the original polio infection.[3]

Clinical features

Fatigue

Fatigue is the most common symptom of post-polio syndrome. It can take many forms, 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've not slept for days
  • mental fatigue – where you find it increasingly difficult to concentrate, have problems remembering things and make mistakes you wouldn't usually make

Muscle weakness

Increasing muscle weakness is another common symptom of post-polio syndrome.

Muscle weakness is where you are finding it difficult to use the affected muscles, whether you feel tired or not. Weakness can occur in both the muscles that were previously affected by the polio infection, as well as those that weren't previously affected. There may also be associated shrinking of affected muscles, known as atrophy.

Muscle and joint pain

Muscle and joint pain are also common in post-polio syndrome. Muscle pain is usually felt deep like an ache in the muscles or muscle cramps and spasms. The pain is often worse in the evenings and is similar to arthritis and consists of soreness, stiffness and a reduced range of movement.[1]

Associated symptoms

Weight gain

Because of the above symptoms, most people with post-polio syndrome become less physically active than they used to be. This can often lead to weight gain and in some cases, obesity.

Mobility difficulties

As well as weight gain, the combination of fatigue, weakness and pain can also make walking difficult, leading to increasing mobility problems. Often people with post-polio syndrome will need a walking aid, such as crutches or a stick at some stage, and some people may eventually need to use a wheelchair.

Breathing difficulties

Some people with post-polio syndrome find breathing can be difficult because the breathing muscles become weaker. This can cause problems such as shortness of breath, sleep apnoea, and an increased risk of chest infections due to the muscle weakness.

Sleep apnoea

Sleep apnoea affects many people with post-polio syndrome. The walls of the throat relax and narrow during sleep, interrupting normal breathing.

This can cause problems such as feeling very sleepy during the day, headaches and increased fatigue.

Swallowing problems

Weakness in the muscles you use for chewing and swallowing may lead to problems swallowing (dysphagia), such as coughing, choking or gagging when swallowing. Voice and speech changes may occur, such as hoarseness, low volume or a nasal-sounding voice, particularly after you've been speaking for a while or when you're tired. A speech and language therapist may be able to help.

Sensitivity to cold

Some people with post-polio syndrome find they become very sensitive to cold temperatures or a sudden drop in temperature as a result of poor blood supply.[1]

Diagnosis- Post-polio syndrome

It is difficult to diagnose post-polio syndrome as there are no specific tests for it and symptoms can be mistaken for other conditions.

If post-polio syndrome suspected based on your medical history and the results of a physical examination:

  • you had polio in the past, followed by a long period (usually at least 15 years) of no symptoms
  • your symptoms have developed gradually (sudden symptoms are more likely to be caused by a different condition)

As the symptoms of post-polio syndrome can be similar to those of several other conditions, such as arthritis, some tests such as X-rays may be needed to rule out any other possible causes of your problems.

To rule out other conditions, or confirm whether you have post-polio syndrome, the following tests may be carried out:

  • electromyography (EMG) tests – to measure the electrical activity in your muscles and nerves and find out whether they're damaged
  • sleep studies – if you're having problems sleeping, such as sleep apnoea, or you're feeling unusually tired (read more about diagnosing sleep apnoea)
  • heart rate and function tests
  • a magnetic resonance imaging (MRI) scan or computerised tomography (CT)
  • lung function tests 
  • tests to investigate swallowing problems (dysphagia)

It's possible to have post-polio syndrome alongside other conditions, so not every health problem or symptom you experience may be related to the condition.<article></article>

Peter Thwaites: Living with Post-Polio Syndrome

When we left hospital after contracting Polio, (know as Infantile Paralysis many years ago), regardless of the disabilities bequeathed us by the Polio Virus, the last thing told us by our attending Physician, now burnt into our memory was "You must use it, or lose it".

How wrong was this statement, and since that fateful day we have been unwittingly destroying, or further damaging, already seriously damaged motor neurons, to such a degree that a large number of Polio Survivors are now experiencing one of the most devastating debilitating neurodegenerative condition in the world.

Non-motor symptoms of PPS have considerable quality of life implications and are notoriously challenging to manage, and yet very few Medical Professionals have even a slight knowledge of Polio, and even less of PPS.

Every person who was caught by the Polio virus had damage to their motor neurons. Many Polio victims were never diagnosed as their symptoms could have been only 'flu like' and would have gone unnoticed.

Our parents were told that our recovery was stable and once our muscle strength and physical abilities returned, they would remain stable for the rest of our lives, in fact we developed unexpected and disabling symptoms about 35 years after the acute polio virus attack.

Post-Polio Syndrome or Post-Polio Sequelae symptoms:

  • Fatigue
  • Muscle Weakness
  • Muscle Pain
  • Joint Pain
  • Cold Intolerance
  • Sleep Disorders
  • Difficulty Swallowing
  • Breathing Issues

At the time of the initial attack parents of Polio Survivors were told that they would die, stop breathing, or never walk again, but in the vast majority of cases this was not the case.

For some strange reason, we were told that:

  • We would never go to college
  • We would never get a job, and
  • We would never get married.

To be accepted, we became 'Type A' personalities, with the feeling of loneliness, and have a lower sense of adequacy, worth, and value.

We were told to 'get normal', and so:

  • We discarded assistive devices
  • We have more years of education
  • We work more overtime hours and take fewer sick days
  • We married at a higher rate
  • We are more sensitive to criticism and failure

Fatigue is the number 1 reported PPS, brain fatigue associated with:

  • Reported difficulty with concentration, memory, attention, word finding and staying awake
  • Abnormal attention, word finding and slowed thinking speed on neuropsychologic tests
  • Brain wave slowing
  • Other PPS "brain" symptoms evident: Abnormal breathing, and Twitching in sleep.

[4]

References

  1. 1.0 1.1 1.2 1.3 NHS Post-polio syndrome https://www.nhs.uk/conditions/post-polio-syndrome/ (Accessed 27th September 2020)
  2. Who Poliomyelitis (polio) https://www.who.int/health-topics/poliomyelitis/#tab=tab_1 (Accessed 27th September 2020)
  3. The British Polio Fellowship https://www.britishpolio.org.uk/about-pps (Accessed 28 August 2020)
  4. Bruno R. Polio Paradox, The: Understanding and Treating "Post-Polio Syndrome" and Chronic Fatigue Paperback. Grand Central Publishing; New edition 2003