Guillain-Barré Syndrome (GBS)
Welcome to our Guillain-Barré Syndrome Information Hub
Please note: work on this page is IN progress to make it more accessible and readable. To view the static GBS page, visit here.
If you've found yourself on this page due to a recent diagnosis of GBS either in yourself, or someone important to you - welcome. We know this is a scary and confusing time.
You may never have heard of the condition, and the speed of it has left you reeling. We hope this page brings a little clarity to the situation, and helps explain what is happening with GBS, its cause, how it's diagnosed, treated, and the future.
Our information is sourced from our Medical Advisory Board, medical texts, and recognised support providers. Where possible, we've taken steps to make this page as accessible to everyone as possible, giving simple explanations or writing in plain language.
If you have any questions after reading this that you feel haven’t been answered. Please get in touch with us, we will do our best to respond or point you to the right place or person.
Here are some helpful links that may be useful now, or throughout your experience.
Our Peer Support service can link you up with someone with lived experience
Our Personal Grants can help with home adaptations or with travel costs
Lived stories from people who have been in a similar position
What is Guillain-Barré Syndrome (GBS)
The basics
(bold text in this section has an IN simple terms explainer below)
Guillain-Barré (pronounced ghee-yan bar-ray) Syndrome, or GBS for short, is a rare and serious neurological condition known as an Inflammatory Neuropathy that damages the Peripheral Nerves.
In GBS, the body's immune system goes into overdrive and produces Antibodies that attack the Peripheral Nerves. The immune attack triggers inflammation around the nerves and damages the protective Myelin coating that helps electrical signals travel smoothly along the Axons.
The result of this damage causes messages between the brain and muscles to become slowed, disrupted, or halted in some cases altogether. This causes weakness, tingling, pain, and possible paralysis which can develop rapidly (often within 48 hours from onset) but should improve over time as the inflammation settles via urgent treatment.
Most recover, however some sadly do not. Many are left with long-term or lifelong residual effects, which may include ongoing weakness, loss of sensation, chronic pain, and significant impacts on mental and emotional well-being.
IN simple terms: Inflammatory Neuropathy
Neuro means string, or nerve. Pathy, in the medical world, refers to a disorder or system of medicine. So Neuropathy simply means a condition impacting the nerves.
Inflammation is part of the biological defence response of body tissues. The five signs of inflammation are heat, pain, redness, swelling, and loss of function.
Therefore, an Inflammatory Neuropathy is when the nerves are damaged or impacted through inflammation.
IN simple terms: Peripheral Nerves
Your brain and spine are called the Central Nervous System (CNS). The Peripheral Nervous System (PNS) is the network of nerves carrying messages to and from the CNS to your limbs, organs, and the rest of your body.
The PNS consists of sensory, motor, and autonomic nerves, transmitting sensations, controlling muscle movement, and regulating involuntary functions like heart rate and digestion.
IN simple terms: Antibodies
An antibody is a large protein which is used by the immune system to identify and neutralise antigens (toxins, bacteria, viruses).
IN simple terms: Myelin & Axons
The Myelin is an insulating layer, or sheath, that surrounds nerve fibres, think of it as the plastic protective casing that surrounds an electrical wire.
The electrical wire in this case is an Axon, or simply, the Nerve Fibre's. The wire transports signals between your central nervous system and peripheral nervous system.
Demyelination is the name for damage to the Myelin.
How many people get GBS?
It affects one to two people per 100,000 per year (around 1,300 people each year in the United Kingdom).
Who is most likely to develop symptoms?
People of all ages can develop GBS, but it is more common in adults, and in men than in women.
Is GBS infectious?
It is neither hereditary nor infectious, so you can’t pass it on to your children, or transmit it to someone else. It tends to be caused by an infection or illness like food poisoning. See the Causes of GBS section for more.
Will I recover from GBS? Is it fatal?
Most people will eventually make a good recovery, but it can be life-threatening. Some people will make a complete recovery with full bodily function. Some people are left with long-term problems, from severe fatigue to dexterity and mobility issues.
About 2-5% of people with GBS die. Quick diagnosis and rapid access to treatment like IVIg (see GBS treatment section), makes the likelihood of recovery much higher.
Will GBS come back?
GBS is a one-off condition which usually does not happen again, except in around 3% who may experience GBS more than once, perhaps many years later. The fear of recurrence is very natural, and is felt by many in our community. You're not alone in any worries you feel about GBS returning, but please remember it is a very rare event.
How long will recovery from GBS take?
GBS worsens for up to four weeks. Unfortunately, recovery usually takes much longer than this.
The speed of recovery depends on the type and severity of damage. Demyelination, inflammation and antibodies usually improve within week. If there is damage (degeneration) of the axons, recovery takes many months or up to three years, and is often incomplete.
If the muscles have become very thin (wasted) this usually indicates axonal damage and a slower recovery. Axonal degeneration may occur in either AIDP or axonal GBS (see section below on types of GBS). The distinction between AIDP and axonal GBS does not affect treatment or the speed of recovery. The factors which usually indicate a slower recovery are:
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more severe weakness
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older age
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diarrhoea just before GBS starts
In some cases, an initial diagnosis of GBS may later be changed to CIDP, a chronic variant in which nerve inflammation lasts for years. ‘Chronic’ means continuing for a long time. CIDP stands for Chronic Inflammatory Demyelinating Polyradiculoneuropathy. By definition, in CIDP the symptoms continue to worsen more than 8 weeks after onset, usually after improving first. If someone with severe GBS is not improving, this is more likely GBS with axonal damage than CIDP.
Is There More Than One Type of GBS?
Yes. The word ‘syndrome’ in GBS means it is not a single disease but includes several different diseases which may look similar.
AIDP
The most common type of GBS is acute inflammatory demyelinating polyneuropathy or AIDP. ‘Acute’ means starting quickly, ‘Inflammatory’ means a reaction of the immune system, for example when your skin is inflamed it looks red and feels uncomfortable. ‘Demyelinating’ means damage to the myelin. ‘Polyneuropathy’ means a disease affecting the nerves. The myelin sheath is made and repaired by cells called Schwann cells. People with AIDP typically have numbness/tingling as well as weakness. In more severe forms of AIDP, both the axon and the myelin may be damaged, giving slower recovery.
AMAN and AMSAN
The axon is the conducting core of the nerve, equivalent to the copper wire within electrical cables. In AIDP this is usually not damaged. However, in the variants called AMAN (acute motor axonal neuropathy) and AMSAN (acute motor and sensory axonal neuropathy), the axon is damaged too. Recently, variants of axonal GBS have been discovered in which the axon is temporarily blocked by antibodies without much damage, which can therefore recover more quickly. These may be called paranodopathy, acute motor conduction block neuropathy, or reversible conduction failure.
Although the commonest (classical) form of GBS causes weakness and sensory loss throughout the whole body, some people with GBS may have one of several variants which look different.
Pattern of Symptoms in Variants of GBS
These variants include:
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weakness without sensory loss (pure motor variant, usually AMAN)
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weakness only in face and cranial nerves (facial palsy with paraesthesias)
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weak face, tingling in the arms/legs but no weakness in the arm/legs
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weakness only in arms, neck and throat (pharyngeal–cervical–brachial variant)
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weakness only in legs (paraparetic variant)
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Miller Fisher syndrome (MFS)
GBS variants are rarely ‘pure’ but often overlap in part with classical GBS. Antibodies to molecules called gangliosides are found in many of these variants, but not usually in classical AIDP.
Miller Fisher Syndrome and Variants
Miller Fisher syndrome (MFS) is also known as Fisher’s syndrome. MFS typically causes:
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abnormal coordination (‘ataxia’, such as clumsiness and poor balance as if drunk).
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paralysis of eye movements (‘ophthalmoplegia’, which may cause difficulty reading or double vision).
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absent tendon reflexes (‘areflexia’, detectable by a doctor but causes no symptoms).
Often there is weakness of the face but many people have no weakness.
Variants of Miller Fisher syndrome
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Some people with MFS also have weakness of the whole body and are then considered to have an overlap of both MFS and GBS. The speed of recovery is largely determined by the severity of the GBS.
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If GBS causes weakness of eye movements (which it usually doesn’t) this is also an overlap with MFS.
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Rare milder variants of MFS may have weakness only of eye movements (‘acute ophthalmoparesis’).
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Bickerstaff’s brainstem encephalitis (BBE) means MFS with additional inflammation of the brainstem. This typically causes drowsiness or reduced consciousness, often with whole-body weakness, and may be shown on MRI scanning or by neurological examination. BBE is the only variant of GBS affecting the brain; otherwise GBS and MFS affect only the peripheral nerves not the brain.
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Antibodies to ganglioside GQ1b (IgG type) are found in most patients with MFS and its variants (but not other types of GBS), suggesting they are all closely related.
What causes Guillain-Barré Syndrome (GBS)
Guillain-Barré syndrome is thought to be caused by an over-reaction of the immune system, the body’s natural defence against illness and infection. Normally the immune system attacks any germs that get into the body. A disease in which the immune system attacks its own body is called an autoimmune disease. In people who develop Guillain-Barré syndrome, the immune system experiences a sort of allergic reaction to the infection and it mistakenly attacks the peripheral nerves.
The immune reaction in GBS causes the myelin to become inflamed and may also damage the axons. This prevents signals from the brain travelling along the nerve fibres properly, which can cause numbness, weakness and pain in the limbs. Because many nerves are inflamed, GBS is called a ‘polyneuropathy’. Poly means "many"
IN simple terms: Myelin & Axons
"wait, myelin... axons..?" Don't worry - that's why we are here. The Myelin is an insulating layer, or sheath, that surrounds nerve fibres, think of it as the plastic protective casing that surrounds an electrical wire.
The electrical wire in this case is an Axon, or simply, the Nerve Fibre's. The wire transports signals between your central nervous system and peripheral nervous system.
Demyelination is the name for damage to the Myelin.
Now it is all a little more complicated than that, but this just gives you a quick way to visualise it.
GBS is not contagious. You cannot catch it from someone else, you cannot spread it to someone else. So in that case, how does someone develop it?
About two thirds of people who develop GBS had an infection within the preceding six weeks. Usually this is a fever, chest infection, or flu-like illness without detecting a specific infecting organism.
If a specific infection is found, the most common is Campylobacter bacteria. Campylobacter is the main cause of food poisoning in the UK, and is typically caught from eating raw or under-cooked chicken.
Other specific infections that are proven sometimes to trigger GBS include:
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Influenza
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Haemophilus influenzae
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Mycoplasma pneumoniae
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Hepatitis A
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Hepatitis E
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Cytomegalovirus (CMV)
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Glandular fever (Epstein-Barr virus)
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Zika
Most of these just cause mild flu-like symptoms or a chest infection.
Most people who catch these infections don’t develop GBS.
GBS only happens rarely if the infection triggers a sort of allergic reaction of the immune system against a person’s nerves. After Campylobacter infection the risk of developing GBS is under 1 in 1,000.
GBS is sometimes triggered by major surgery including transplant surgery. Rarely GBS is triggered by certain biological drugs used for treating cancer or other diseases.
GBS can also, very rarely, be triggered via certain vaccinations like influenza, at an estimated rate of 1-3 cases per million vaccinations.
In some cases, no obvious trigger is apparent.
Remember, it is not contagious. In the rare event of a mass incidence such as that as we saw in Pune in 2025, it is usually caused by a water or food supply contaminated with a bacteria like Campylobacter.
What are the symptoms of Guillain-Barré Syndrome (GBS)
Early Symptoms
Symptoms of Guillain-Barré syndrome usually develop rapidly, starting in the feet and legs before spreading to other parts of the body. These symptoms affect both sides of the body at the same time, usually symmetrically.
You may experience some or all of these symptoms:
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numbness
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pins and needles
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muscle weakness
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poor co-ordination
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problems with balance
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pain in back and legs
Later symptoms
The symptoms may continue to get worse over the next few days or weeks, typically reaching the worst point, or nadir, within two weeks and always within four weeks.
In the early stages, GBS is often misdiagnosed - we have heard everything from Stress and Anxiety through to a Stroke or MND. If you're experiencing some or all the symptoms above or below, please mention GBS to your health care team.
Some people are only mildly affected, but others may have:
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difficulty walking
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paralysis
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difficulty breathing
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severe pain
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weak arms
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problems speaking or swallowing
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bowel problems or constipation
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facial weakness and loss of expression
The worst degree of weakness is usually reached within two to four weeks. Some people worsen very rapidly to severe paralysis within a few days, but this is uncommon. The person then stays the same (plateau or stabilisation) for a few days or weeks. Many people are so weak that they are unable to get out of bed. However, it is very important that someone keeps all the joints moving to stop them stiffening up*. A physiotherapist may advise relatives and friends on what they can do to help.
Community Advice: if it doesn't cause pain, gently massage and manipulate fingers, and toes, wrists and ankles. Rub a rough towel gently across the skin to stimulate the nerves. If the person you're with is paralysed, check via spoken agreement, or blinking, that this is not causing pain due to skin or muscle sensitivity.
Other Symptoms
You may also experience Cardiac Arrythmia (irregular heartbeat), very high or low blood pressure and constipation may occur if there is inflammation of the autonomic nerve, supplying internal organs.
How is Gullain-Barré Syndrome (GBS) Diagnosed
GBS can be difficult to diagnose because several other conditions can cause similar symptoms. Your GP will refer you to hospital if they think you might have it or they are not sure what is causing your symptoms.
Examination:
A GP or specialist may:
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ask about your symptoms, such as when they started and whether they’re getting worse.
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examine your hands, feet or limbs to check for weakness or numbness.
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ask if you’ve recently been ill, as GBS may follow an infection.
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ask about risk factors or symptoms of other conditions such as toxins, alcohol, tick bites, diabetes, family history, etc.
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check your reflexes, such as whether your leg twitches when your knee is tapped, as people with GBS usually have absent or reduced reflexes.
Nerve Test (EMG, neurophysiology):
To measure how your nerves are working, a specialist clinical neurophysiologist usually does these two tests at the same time:
nerve conduction studies (NCS):
in which mild electric shocks are given through the skin to activate the nerves and measure the signals travelling along your arms and legs.
electromyogram (EMG):
in which tiny needles are inserted into several muscles to record their electrical activity. This can show if there is damage to the axons.
In people with GBS, these tests will usually show that signals are not travelling along the nerves properly.
Lumbar Puncture
A lumbar puncture is a procedure to remove some fluid from around the spinal cord (the nerves running up the spine), known as cerebro-spinal fluid (CSF). It involves lying on one side and having a needle inserted into the base of the spine under local anaesthetic.
The CSF usually has a raised protein level in GBS. The CSF may also show signs of other conditions with similar symptoms to GBS, such as an infection.
Occasionally the diagnosis may not be clear even after the tests, or it may take time to arrange the tests. The diagnosis usually becomes more obvious with time.
Treatment for GBS
GBS is classed as a medical emergency, and you should be admitted to hospital.
Once GBS is identified, it's important that treatment is started as soon as possible. Faster treatment tends to lead to a faster recovery and less residuals in many patients.
Most people will remain there for a few weeks, to a few months. In some rare cases, this can be shorter or, unfortunately, longer.
The main objective is to stop the immune reaction/attack and reduce the inflammation.
Please note, if you have the variant known as pure Miller Fisher syndrome (MFS), you may be more mildly impacted and can, in many cases, recover without treatment. You should be closely monitored during this process, and those with the subgroup, GBS-MFS overlap may need treatment if weakness develops. Those with BBE may also experience this.
IVIg
The most commonly used treatment for Guillain-Barré syndrome is intravenous immunoglobulin (IVIg). Immunoglobulin is made from donated blood that contains healthy antibodies which can help stop the harmful antibodies damaging your nerves. IVIg is given intravenously, which means directly into a vein, usually over a period of five days, and is most effective if given in the first two weeks following onset.
IVIg is not a 'cure' for GBS, but is given to stop the attack on your nerves. The sooner it is administered, the less long term damage/impact you should experience. Once the immune reaction has stopped, then the process of recovery can begin.
Plasma Exchange
Plasma exchange, also called plasmapheresis, is sometimes used instead of IVIg. This involves being attached to a machine that removes blood from a vein and filters out the harmful antibodies that are attacking your nerves before returning the blood to your body. This is also usually delivered over a period of five days, and is considered most effective during the first four weeks following onset.
Both IVIg and plasma exchange are considered to be equally effective and on average lead to earlier recovery than if left untreated. Unfortunately these treatments do not work for everyone. There are currently no other treatments with proven efficacy for GBS.
I'm pregnant, can I be treated?
Either IVIg or plasma exchange may be given during pregnancy if required. IVIg may be preferred.
It can be scary being treated with powerful medications while pregnant. It may help to know that our Chair of the Board of Trustees experienced something similar - GBS while pregnant with her son. She shared her story in this podcast episode:
Other treatments during GBS
While in hospital, you’ll be closely monitored to check for any problems with your lungs, heart or other body functions.
You may also be given treatment to relieve your symptoms and reduce the risk of further problems. These treatments may include:
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A ventilator if you’re having difficulty breathing. We'll cover that in more detail in a future section.
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A feeding tube through your nose if you have swallowing problems.
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Painkillers if you’re in pain.
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Being gently moved around on a regular basis to avoid bed sores and keep your joints healthy.
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A thin tube called a catheter in your urethra (the tube that carries urine out of the body) if you have difficulty peeing.
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Laxatives if you have constipation.
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Injections to prevent blood clots.
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Physiotherapy to help you learn to move again and build up your strength.
Remember, GBS is not one size fits all. You may be given some, or none, of these treatments. If you're worried about anything that is happening, please ask your doctor or nurse to walk you through the process.
Mechanical Ventilation and Guillain-Barré Syndrome (GBS)
Mechanical Ventilation and Tracheostomy
Around 20% of people with GBS develop weakness of the breathing muscles and need Mechanical Ventilation.
Your care team will walk you through every step of this process.
The type of Mechanical Ventilation in GBS cases is typically known as Invasive. This means the tools used penetrate the body as opposed to Non-Invasive like Bag Masks that sit on the face/mouth/nose. However, in some cases your care team may find Non-Invasive is suitable for you.
An Orotracheal Intubation (OTI) may be used in the short term. This is when a tube is passed through the mouth and into the trachea (the tube that carries air to and from your lungs). This can be uncomfortable, however medication/sedation can be given to lessen the sensation.
If you or your loved one is expected to be on Mechanical Ventilation for a long time, then a Tracheostomy may be performed.
A Tracheostomy is when an opening in the neck is surgically created to allow for the tubes to be directly inserted into the trachea. This has the benefit of vastly improving comfort for the patient opposed to oral intubation, it requires less sedation, allows for easier clearing of secretions, may allow for the patient to speak/verbalise, and helps patients breathe independently faster.
It can be frightening being put on Mechanical Ventilation, and in some cases uncomfortable though your team will do their best to minimise discomfort. It can also be upsetting seeing someone you care about hooked up to wires and cables, breathing for them. Although difficult, please try to keep in mind that this is the best way to get the body breathing independently again.
If you have questions about how Mechanical Ventilation feels, and the experience. We can link you with someone who has gone through it via our Peer Support service. Get in touch and we'll get you in touch as quickly as possible: Peer Support
Zoe received a tracheostomy during her experience, and is now getting back to playing rugby:
GBS and ICU
Intensive Care
Intensive care is a unit within hospitals, staffed by medical support personnel who are specially trained in the high levels of care required. This is also known as ITU (Intensive Therapy Unit). Patients are constantly monitored, day and night, and everything is done to ensure that they receive the highest level of care possible.
Admission to ICU is particularly recommended for patients who are experiencing problems with their breathing, swallowing or coughing muscles. Around 20% of GBS patients are admitted to ICU.
The amount of equipment may seem a bit daunting at first, but you will soon become familiar with all the machinery. It can help to know how each item helps recovery, here's a small list of what you may see. If in doubt, simply ask a doctor or nurse to explain what something does.
Equipment that may be used on an ICU includes:
Ventilator
A machine that helps with breathing by pumping air in and out while they are temporarily unable to breath unaided.
Breathing tube
Placed in the mouth, nose, or through a small cut in the throat (tracheostomy) which makes it more comfortable if ventilation is likely to be needed for longer than a week. This cut will heal up when the person can breathe again for themselves. The inflatable cuff around the bottom of this tube stops fluid and secretions from slipping down the throat into the lung and causing infection.
Monitoring equipment
Used to measure important bodily functions, such as heart rate (ECG), blood pressure and the level of oxygen in the blood.
IV lines and pumps
Tubes inserted into a vein (intravenously, iv) to provide fluids, nutrition and medication
Feeding tube
Placed through the nose down into the stomach (nasogastric tube, NGT) or sometimes through a small cut made in the tummy (gastrostomy, PEG) if a person is unable to eat normally
Catheter
A tube to drain urine from the bladder
Drain
Tube used to remove any build-up of blood or fluid from the body
Family and Loved Ones
This next section is useful for family, partners, and loved ones. Your job is to offer love, comfort and reassurance during this difficult period.
Try to remain calm and positive and give lots of encouragement on progress. Keep yourself well informed by the medical staff.
Writing a few lines each day in a journal will help you keep a perspective on progress. You can share this over the coming weeks to show how far they’ve come since those early days.
For close family, this period of the illness can be an exhausting time of stress, uncertainty and disruption, as you struggle to maintain other commitments alongside frequent hospital visits, so don’t forget to look after yourself and stay well.
Remember to eat and drink regularly. When days revolve around hospital visits, it’s easy to put yourself last, but your wellbeing matters too. Taking a moment to nourish yourself helps you stay strong for the long haul.
Intensive Care | What to Expect?
Mental Health, Well-Being, and Work following GBS
This section will provide useful links and sources to help support your mental health after, or during GBS. If you’re a carer or have experienced a loved one going through an illness it can also be a traumatic time, and these links may also help you.
We also discuss getting back to work and how to communicate with your employer.
Click one of the headers below to access the information directly:
Back To Work: After a Long Absence
Back To Work: Making Reasonable Adjustments
Back To Work: Pay During A Phased Return To Work
Click here to return to the main GBS topic hub.
Mental Health & Wellbeing
With all the changes in your health it is not uncommon to feel anxious or angry. An acute stress reaction is recognised as being a normal part of the process of adjusting to a life change, and it can often help to talk things through with a partner or close friend. However, please seek advice and help from your GP if you are finding it difficult to cope or to sleep, or if you are feeling overwhelmed emotionally.
The impact of being severely affected by a sudden, frightening and potentially life-changing condition such as GBS can leave people with symptoms of PTSD (post-traumatic stress disorder). It can develop immediately, or many months or even years after a traumatic event.
If you are concerned about low mood, irritability, panic attacks, anxiety, flashbacks, physical sensations such as trembling or sweating, poor concentration or sleeping problems, please talk to your GP about getting some counselling.
Sexual Relationships
GBS, CIDP and associated inflammatory neuropathies can bring on problems in any relationship, and sexual relationships are not excluded. Dealing with a long-term illness or disability can put a great strain on a relationship, particularly when one partner is partially or totally dependent on the other. Even without the actual physical disability, the emotional upheaval can interfere with a couple’s sex life and this can be difficult to talk about. This can mean that the once close, intimate relationship can become distant and stressful for both partners. Help is available so speak to your GP or a relationship counsellor.
Relate https://www.relate.org.uk/
Getting Back To Work
When someone is ready to return to work after an absence, the employer should have a procedure they follow, or an Occupational Health service. You can check your workplace’s absence policy for this. Your workplace might have a policy for meeting with employees after absences.
Back To Work: After a Long Absence
If there’s been a long absence or the employee has an ongoing health condition, it’s a good idea for the employer and employee to meet and:
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Make sure the employee is ready to return to work.
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Talk about any work updates that happened while they were off.
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Look at any recommendations from the employee’s doctor.
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See if they need any support.
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If the employee has a disability, see if changes are needed in the workplace to remove or reduce any disadvantages (‘reasonable adjustments’).
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Consider a referral to a medical service such as occupational health.
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Discuss an employee assistance programme (EAP) if it’s available.
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Agree on a plan that suits you both, for example a phased return to work.
Back To Work: Making Reasonable Adjustments
If an employee has a disability, by law their employer must consider making ‘reasonable adjustments’ if needed to help them return to work.
Reasonable adjustments could include making changes to the employee’s:
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Workstation or working equipment.
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Working hours.
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Duties or tasks.
For the best course of action, the employer should take advice from:
- The employee themself.
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The employee’s doctor.
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Their Occupational Health adviser.
This can help get people back to work quicker prevent any further problems.
Back To Work: Phased Return
A ‘phased return to work’ is when someone who’s been absent might need to come back to work on:
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Reduced hours.
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Lighter duties.
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Different duties.
For example, after a:
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Long-term illness.
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Serious injury.
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Bereavement.
The employer or their HR manager and the employee should agree on a plan for how long this will be for.
For example, they could agree to review how things are going after a month and then decide to increase the working hours or duties, or they might decide they need to stay reduced for longer.
The employer or HR manager should continue to regularly review the employee’s health and wellbeing in the workplace and make new adjustments if necessary.
Back To Work: Pay During A Phased Return To Work
If the employee returns to their normal duties but on reduced hours, they should get their normal rate of pay for those hours they work.
For the time they’re not able to work, they should get sick pay if they’re entitled to it.
If the employee is doing lighter duties, it’s up to the employer and employee to agree on a rate of pay. It’s a good idea to make sure this agreement is put in writing.
This information is provided by ACAS (the Advisory, Conciliation and Arbitration Service).
Further information regarding absence and returning to work is available on the ACAS website:
What happens after GBS?
What happens after Guillain-Barré Syndrome (GBS)?
What happens next? That’s a big question for a lot of people upon leaving hospital. This section covers everything from rehab to hygiene to pain management.
To skip to the information directly, just hit a header below:
Support and Rehabilitation
Going Home
Assessment & Care Plan
Residual Symptoms
Preventative Measures
Hospital Follow Up
Physiotherapy and Discharge
Hygiene, Cleanliness and Teeth
Diet
Your Immune System
Exercise and Rest
Pain
Support and Rehabilitation
60-80% of GBS patients can walk independently at 6 months, and the vast majority recover within a year. Of these, some will be discharged straight home without spending time in a rehabilitation unit, but if you need it, support is available to help you recover and adapt to any long-term issues.
Specialists who might support you through rehab:
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Physiotherapist: will help you with movement issues, re-building muscle, and learning to walk
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Occupational Therapist (OT): will identify potential problem areas and work out some solutions
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Speech and Language Therapist: will help with communication and swallowing problems
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Counsellor or Psychologist: someone you can discuss your problems with and help you find ways to cope emotionally
Going Home
Leaving hospital or a rehabilitation centre and heading home can be daunting and takes a while to arrange. You may need equipment to help with everyday tasks, your home may need adaptations, or you may need a care package in place. There are many people and organisations that can help with this, starting with the occupational therapist and your care team. Your family can also be a great help in getting the information together and speaking to organisations that have in-depth knowledge of what help is available.
Assessment & Care Plan
If you are likely to have ongoing health and social care needs you should have an assessment carried out by a multidisciplinary team of health or social care professionals such as a social worker, physiotherapist, occupational therapist, psychologist or dietician. You, and a family member if appropriate should be involved in this process.
A care plan should include details of:
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The treatment and support you will get.
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Who will provide the support.
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When and how often.
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Monitoring and review.
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A named co-ordinator.
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Who and how to contact.
The type of support that might be in a care plan:
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Community care services.
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NHS continuing services.
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NHS funded nursing care.
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Rehabilitation.
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Equipment.
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Support from voluntary agencies.
Residual Symptoms
It is normal to experience persistent symptoms over the weeks and months after discharge from hospital following GBS. These symptoms vary from patient to patient and include weakness, tingling, aching in the limbs, nerve pain, cramps and extreme tiredness.
We have a longer section on Residual Symptoms here.
Preventative Measures
Nothing can be done to alter the very small risk of a recurrence of GBS. Since GBS can be triggered by an infection, you might think it desirable to avoid all possible exposure to infections. As observed during the COVID-19 lockdown in 2020, this may be possible, but involves sacrificing normal life to a degree that is neither practical nor desirable. Having had GBS does not increase the probability that you will get it again.
Hospital Follow Up
There is a wide range of different practice regarding hospital follow-up visits. Unless you are taking medicines for other conditions, or unless you are being prescribed medicines for pain or complications, it is unlikely you will need to attend hospital as an outpatient following discharge.
The person you are likely to need to see is a community physiotherapist, rather than a neurologist. Some neurologists may ask you back for a follow-up appointment to see how your recovery is going, but most do not, because you no longer have an ongoing neurological condition and their role in your treatment has come to an end.
Physiotherapy and Discharge
If you have difficulty accessing physiotherapy, but feel it would benefit you, or if you find yourself on a lengthy waiting list, please contact the office at Inflammatory Neuroapthies UK.
Hygiene, Cleanliness and Teeth
Personal cleanliness for those who cannot care for themselves fully can be a problem. Many returning home from hospital may have reduced use of their hands, usually temporarily, but sometimes permanently. Many will be unable to wash themselves, brush their hair, use the lavatory, wipe their bottoms, brush their teeth, cut their nails etc. It is important for both hygiene and self-esteem that these matters are attended to by a carer.
Through no fault of their own, many people’s teeth are neglected during periods of serious illness. Once you have returned home, arrange an appointment with your dentist as soon as possible. If you have difficulty attending a dental practice, enquire about community dental services. Using an electric toothbrush can be helpful if you have residual weakness in your hands. More advice can be found on the British Society for Disability and Oral Health website.
Diet
During illness, nutritional needs are at their peak, but it is not unusual for patients to lose their appetites or taste for food. Worry and fear often accompany illness and can also contribute to loss of appetite. Good nutrition can be a powerful ally in the process of recovery, so if you need advice, ask to speak to a nutritionist. If taste has been affected, this will usually improve with time. Plastic utensils can be used if bitter or metallic tastes are experienced whilst eating.
Sometimes taste changes can be related to medications, but drugs should not be discontinued without first consulting your GP. Try to eat a healthy, balanced diet and keep consumption of sugary and processed foods, and drinks that are high in caffeine or alcohol to a minimum. There is some excellent advice on nutrition on the NHS website.
Some in our community enjoy an anti-inflammatory diet, finding it helps with residual nerve pain or weakness. Some choose to avoid, or cut back on, alcohol as they find it can make residual symptoms feel stronger.
Your Immune System
Although caused by your immune system malfunctioning, GBS does not weaken or damage your immune system, and having had GBS does not mean that your immune system is compromised. However, many people feel a bit rundown when they’re recovering from a lengthy illness, and you may be more prone to pick up colds and other bugs until you’re back to full fitness.
Regular exercise and maintaining a healthy diet and sleep regime will all help during recovery. There is anecdotal evidence, and lots of hype surrounding supplements and alternative remedies, but very few are known to have real benefits.
Most people are able to get the vitamins they need from their diet, but if you wish to take dietary supplements, please talk to your doctor first as they will not only be able to advise you on anything that may help you during recovery, but can warn you against any that may negatively impact you.
Exercise and Rest
During the recovery stages, physiotherapy, occupational therapy (OT) and speech and language therapy play a vital role in the rehabilitation process as well as maximizing functional ability. At some point during rehabilitation the rate of recovery will plateau, and it is often at this point that patients will be discharged from all the support services on which they may have relied. It is also possible that patients may be placed ‘on review’. This means that you may be followed up at regular intervals and can telephone for advice in-between but don’t attend the clinic as often as you did before.
The role of exercise in the ongoing rehabilitation for patients with GBS is still to some extent unclear and clinical trials are being carried out to improve our understanding. However, there is evidence that where weakness and fatigue are problems, participation in regular graded exercise can be beneficial.
Exercise can help to improve your muscle strength and reduce your overall sense of fatigue. It can also aid sleep and support mood through the production of endorphins. Other benefits include helping your heart and lungs remain healthy and making you feel more positive about yourself. However, it may take weeks or even months before you feel some of the benefits, so it is important to pace yourself. You will find lots of exercises online, including seated exercises, or you could ask your GP or physiotherapist about how to start regular exercise and what exercises might be right for you.
Recovery from GBS is not a race, and you also need to get plenty of rest, but try to avoid napping and develop instead a regular sleep pattern.
Visit the NHS website for advice on exercise: https://www.nhs.uk/live-well/exercise/
and also for advice on sleep: https://www.nhs.uk/live-well/sleep-and-tiredness/
Pain
Some people do not experience pain, but even if they had none during the active phase of the syndrome, it may occur during the recovery phase. The problem tends to resolve as recovery proceeds, but it can become an ongoing issue.
Being in pain naturally impacts on mood and the ability to cope with everyday situations. Your family and friends might expect you to be ‘back to normal’ once you are discharged from hospital, not realising that in many cases, there is still a very long way to go in terms of recovery. It is important to talk to your family and friends about this, so that they understand what you are going through and why you might be irritable and difficult to live with at times.
Other Sources of Support:
Pain Concern https://painconcern.org.uk/
British Pain Society https://www.britishpainsociety.org/
Pain Association Scotland https://painassociation.co.uk/
Welsh Pain Society https://www.welshpainsociety.org.uk/
Pain Relief Foundation https://painrelieffoundation.org.uk/
Pain Relief Ireland https://painreliefireland.ie/
Residual Symptoms and GBS
It is normal to experience persistent symptoms over the weeks and months after discharge from hospital following GBS. These symptoms vary from patient to patient but are often felt particularly strongly in the hands and feet.
Below we have a list of residual symptoms we find are frequently mentioned. This is not an exhaustive list, you may experience other residual symptoms not listed. Nor should you expect to experience each symptom (if any) on the list.
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Aching in limbs
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Clawing of hands/toes
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Cramp
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Fatigue
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Foot drop
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Loss of balance
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Nerve Pain
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Numb/Loss of Feeling
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Tingling/Pins-and-Needles
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Weakness
It is normal for these symptoms to fluctuate a bit, being worse when you are particularly tired, stressed or affected by illness, such as a cold, sore throat or flu.
Timeline
For most people, these side effects gradually decrease over time. There is no fixed or standard timeline for recovery.
It can help to keep a diary of your residual symptoms - noting date, symptom, and severity. This way, if your recovery is slow, you can still see visual improvement.
During this time, you may also experience some of the above sensations returning/strengthening. Fluctuation is natural, and is very unlikely to be a recurrence of GBS, however, if you are concerned please consult a doctor for peace of mind.
I haven't fully recovered
Unfortunately, around 15% of people will not make a full or 'good' recovery, and will experience permanent or long term mobility and dexterity problems.
If this happens, there may be a need for a wheelchair or another mobility aid.
Persistent pain and fatigue may also be a long term issue that needs to be managed.
If you find you have a residual symptom that is not improving, and is causing a significant negative impact in your life (particularly pain, or mobility), please consult your GP or Consultant to ask about management strategies.
You can also join our online Zoom support calls to talk with others with experience of residuals, or arrange 1-to-1 Peer Support with someone we can match you with. If residuals are impacting your mood negatively, we also have an Emotional Support service you may wish to access.
Gullain-Barré Syndrome Advice for Carers
Hospital discharge can bring mixed emotions. Of course you’re glad to have your family member home, but it is quite normal to feel a bit daunted by what lies ahead, especially if you are now the main carer. On this page we have some practical suggestion that can help you in this new role, and some help contact details and/or resources you may wish to access.
Quick Fact: Informal/Unpaid Carer
The Department of Health and Social Care has described an informal/unpaid carer as: “… someone who provides unpaid help to a friend or family member needing support, perhaps due to illness, older age, disability, a mental health condition or an addiction”
Ask for a needs assessment for the person you’re caring for
You need this before the council can recommend services such as equipment, home adaptations, help from a paid carer, etc.
Get a carer's assessment
This can be requested at the same time as a needs assessment, via social services at your local council.
Don’t be afraid to ask for help
Ask family and friends (shopping, respite, etc), and contact carers’ organisations or Citizens Advice for benefits advice and other support.
Look after yourself
Eat a healthy diet, maintain a regular sleep pattern and make time for exercise, preferably in the fresh air or at your local gym or pool, away from the care setting.
Remember to rest
Put some activities on hold. Take some time for yourself by arranging respite care from a friend or relative, or through social services.
Recognise limitations
Both those of the person you’re caring for and your own. Let them try to do things for themselves if they are able, but bear in mind their safety and yours.
Look after your mental health
Talk to each other about your experiences and frustrations during illness and recovery. Talk to your GP if either of you is struggling.
Be mindful of risks
Be aware of temperature (cooker, iron, hot bath water, hot drinks), risk of falls due to poor balance, and dropping or spilling things due to weakness.
Diet and exercise
If appetite and taste are affected, ask about vitamin supplements to help maintain dietary needs. Ask the community physio about exercises to do between visits.
Don't lose sight of your relationship
Whatever your relationship is to the person you’re caring for, make time for it. Do things together that you both enjoy and that feel ‘normal’.
Get in touch with Inflammatory Neuropathies UK
We provide information and support, organise peer support via phone or video link, virtual group chats, and run an active and supportive Facebook group.
Hospital discharge can bring mixed emotions. Of course you’re glad to have your family member home, but it is quite normal to feel a bit daunted by what lies ahead, especially if you are now the main carer. On this page we have some practical suggestion that can help you in this new role, and some help contact details and/or resources you may wish to access.
IN simple terms: Informal/Unpaid Carer
The Department of Health and Social Care has described an informal/unpaid carer as: “… someone who provides unpaid help to a friend or family member needing support, perhaps due to illness, older age, disability, a mental health condition or an addiction”
Other sources of support
Looking after someone you love doesn’t have to mean struggling alone. There are organisations out there who offer advice and practical support to carers, so reach out and see what help is available to you.
NHS advice
Carers UK
Carers Scotland
Carers Wales
Carers Northern Ireland
Family Carers Ireland
Carers Trust
Help for young carers
Citizens Advice UK
Citizens Information RoI
Find your local social services
England
Scotland
Wales
Northern Ireland
Republic of Ireland
My child has been diagnosed with GBS
My Child has been Diagnosed with Guillain-Barré Syndrome (GBS), what do I do?
Although more common in adults, Guillain-Barré syndrome can affect anyone of any age. The encouraging news is that children tend to be less severely affected than adults, and in most cases make a very good recovery. Even so, it is distressing for any parent to see their child debilitated by illness, and we hope that knowing a little bit about what to expect may help, especially in the early stages following diagnosis. Don’t forget your child needs to be told what is happening and will be reassured by familiar faces and voices.
If you would like to talk to another parent of a child affected by GBS, please contact Inflammatory Neuropathies UK, and we will arrange contact with one of our support volunteers.
The following information has been adapted from TheSchoolRun: an online resource for parents of children at primary school
More detailed information is published online by Contact a Family.
If you want to access a specific topic in this section immediately, click the headings below, or click here to return to the main GBS topic hub.
How is Your Child’s Condition Managed?
What is Paediatric Intensive Care?
Things You Can Do To Help
Rehabilitation & Outcome
Going Home
Back to School
How is your Child's Condition Managed?
Diagnosis, treatment and recovery will follow a similar path for children as for adults, and are covered elsewhere in this booklet. Paediatric services tend to be very self-contained, and you will have access to support that you would not experience in an adult setting. The following information is specific to differences between adult and paediatric services.
It is important your child is treated in a centre familiar with GBS and with intensive care facilities should they be required, so they may be moved to a hospital you do not routinely use. Most of your child’s care will be ‘supportive’ for breathing, feeding, bowel or bladder functions. Physiotherapy is needed to ensure good joint mobility and to keep the chest clear.
People likely to be involved in your child’s care:
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you, your child and your family
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paediatric nurses and nurse practitioners, doctors and neurologists
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paediatric intensive care nurses and doctors
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neurophysiologist, who does the nerve conduction study
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physiotherapists, to help with movement and breathing
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speech therapist, to help with feeding and communication
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occupational therapist, to help maximise recovery
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clinical psychologist
Other staff you may meet could include dietician, health care assistants, family liaison nurses, play specialists, chaplains and interpreters.
What is Paediatric Intensive Care?
Around 10% of children with GBS will become so weak that they cannot breathe without the support of a ventilator. Understandably this can be a frightening situation for a child who is still fully aware of everything going on around him or her. Parents and carers must provide the child with all the positive support needed to avoid unnecessary trauma.
Things You Can Do To Help
Even if they can’t respond verbally, your child will be conscious (unless placed in an induced coma for a time to reduce stress and anxiety) and can hear what is being said. Talk about things that matter to your child (a pet, the football results, family events, messages from friends, etc). Bring a favourite soft toy for them to cuddle. Your child may become extremely frustrated especially if he or she cannot speak. Try to work out ways of communicating, such as picture cards that they can respond to by touch, blinking or pointing with their eyes or pointer on a headband. Ask the paediatric team for support in communicating with your child if they are non-verbal.
Rehabiliation and Outcome
The majority of children make a full recovery from Guillain-Barré syndrome without any lasting signs of having had the condition, but a small number may have some persisting problems, such as weakness of the hand and foot muscles. Most recovery is seen in the first six to twelve months, but gradual improvements can continue for five years and beyond.
Keep in touch with school, and once your child is on the road to recovery, ask their teachers for any resources they can access to help them catch up with what they would have been doing at school.
Going Home
Although recovery can be a long and drawn-out process, there are ways of helping children to cope.
Doctors can prescribe medication to counter pain. Rest, relaxation, massage and physiotherapy are all helpful.
Occupational therapists will discuss the suitability of the home environment and tell you how to access any specialised equipment that might be needed.
Hydrotherapy and swimming can be very beneficial, as the water is weight-bearing allowing freer movement. Consider going for a family bike ride once your child is strong enough, and even look at an activity such as horse-riding, as this can help with balance as well as the psychological benefits associated with being around animals (contact ‘Riding for the Disabled’, https://www.rda.org.uk/). Exercise is much easier when children are engaged, so it helps a lot if it is something fun and enjoyable. Since children are usually very active and move around without thinking, observing what they do naturally is a good indicator of their capabilities.
Your child may feel the cold and get tired more easily, or they may lose their appetite or complain of things tasting different. The trauma of GBS may also have an effect on their mood or behaviour. They may become frustrated, angry and upset at not being able to do everything that their friends can, and that they could do before. All of this is normal. It is important to listen to them, understand what they are feeling, and try to find things that will help. Be patient. These problems are temporary and will improve with time, but talk to your GP if you are concerned and feel further support is needed.
Back to School
Thousands of children live with health issues that involve long periods of absence from school. At some stage, these children will face the unenviable task of going back to school and reintegrating into their former class and its usual daily routines. Catching up with work and friendships can often be difficult, but a good school will do all it can to ease your child’s passage back into school life.
Returning to School: Catching Up With Work
When your child is ready to return to school, the thought of catching up on weeks of missed work can be daunting. But, says Lesley Black, special educational needs (SEN) advisor at the charity Contact a Family, ‘no school will want to overwhelm a child who has been unwell or dealing with difficult circumstances by expecting them to do extra homework or catch up on work during playtimes.’
Schools may prioritise catching up with work in maths and English – the core subjects – over other subjects. It’s quite common for schools to have small groups of children who need support with numeracy or literacy, and children who’ve been away from school will often slot into one of these. They may be given extra one-to-one help by a teaching assistant (TA) to help them catch up.
If you want to give your child a boost at home, speak to their teacher about how you can best help, such as games-based learning activities online that consolidate maths and English skills, or practical things you can do like reading aloud and cooking together. However, be aware that if your child has been ill they might find the school day very tiring, and may not be up to doing much homework.
Returning to School: Fitting In
Despite the fact that schools are under increasing pressure to ensure children achieve, your child’s school is likely to be far more concerned about their wellbeing as they return to school. Your school should help your child to keep in touch with their classmates while they’re absent, for example through visits, emails, letters or video calls. They also have a duty to help your child reintegrate once they’re well enough for school.
Your child may feel awkward if they’re bombarded with questions about why they’ve been away. Sometimes, they’re so reluctant to draw attention to themselves that they put up with discomfort or distress rather than asking a teacher for help. Some children, however, are happier with everything out in the open and even like to stand up in front of the class to explain what’s been happening. If your child has a specialist nurse or a social worker, they may be happy to visit the class, either with or without your child, to answer their classmates’ questions.
‘It’s important that schools are sensitive about your child’s needs when they’re considering what information to share with their classmates and the wider school community, and that they make sure your child has someone they can ask for help,’ Lesley says. ‘This could be a school counsellor or the special educational needs co-ordinator (SENCO) rather than their class teacher.’
Returning to School: The Individual Healthcare Plan
A key part of your child’s return to school after illness may be the creation of an Individual Healthcare Plan. This is a formal document that sets out things like:
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What their condition is.
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What medication they take.
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Who, in the school community, can administer their medication.
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What to do in an emergency.
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Arrangements that need to be made to enable your child to attend school, such as a quiet rest area.
‘You and your child should be central in drawing up the individual healthcare plan,’ says Lesley. Other people involved in your child’s care may also be involved, such as their GP, paediatrician or specialist nurse. The plan will identify if anyone needs to be given special training to administer medication or otherwise help care for your child at school. If so, someone from your child’s medical team is likely to arrange this. The plan should be reviewed regularly, and at least once a year.
Depending on the level of recovery or any residual disability, it may be necessary for your child to return to school in a wheelchair, and school facilities should be checked to make they are suitable for your child’s needs. A welfare officer from the local education authority (LEA) can visit to arrange adaptations, and can sometimes provide equipment for use in schools. Like any other institution, the ability of the school to cope depends on the willingness of those involved, as much as the building’s design and facilities.
Before your child returns to school, arrange a consultation with headteacher and SENCO to explain what if any limitations they have.
What is the Advice on GBS and Vaccinations?
What is the advice surrounding vaccinations and Guillain-Barré Syndrome (GBS)?
Professor Michael Lunn MA MBBS FRCP PhD, Consultant Neurologist and Professor of Clinical Neurology, National Hospital for Neurology and Neurosurgery, Queen Square, London advises:
“One vaccine is not the same as another. The only reason that one advises against flu vaccine in someone with GBS is if they actually had GBS in the 6 week window after a flu vaccine and then only out of an abundance of caution which is not based on any real science. The rate of GBS after flu vaccine in all assessed years after 1976 has been about 1 per million and no study has linked vaccination to recurrence of GBS or CIDP. COVID vaccine is nothing like flu vaccine. Although there have been a small number of people who have developed GBS for the first time following the COVID vaccine, the risk of serious illness and complications from COVID are greater.”
Most vaccinations do not cause GBS.
The influenza (‘flu) vaccine changes every year. In some years this has caused a few cases of GBS, most notably in 1976. The risk remains extremely small. For every one million people who receive an influenza vaccine, only about one case of GBS is caused. In most years, influenza vaccine does not cause GBS at all.
Although some neurologists advise people to avoid vaccinations for 6-12 months after onset of GBS, this is purely precautionary. Several scientific studies have shown very little or no causal link between vaccinations and GBS, concluding that vaccinations do not trigger a recurrence and are as safe for people who have had GBS as for anyone else.
GBS is a one-off condition that is unlikely to happen again. After recovering from GBS, the risk of ever developing GBS again (many years later) is about 1 in 30 (2 – 5%).
The risk of triggering GBS from the annual seasonal flu vaccine is far lower than the risk from flu infection.
Most people don’t need a flu jab. However, if you are in an at-risk group, or you live or work closely with people for whom flu might be severe or life-threatening, then you should be vaccinated, to protect yourself and others.
Public Health England states in The national influenza immunisation programme 2020 to 2021 that:
‘Previous GBS is not a contraindication to influenza vaccination. A UK study found no association between GBS and influenza vaccines although there was a strong association between GBS and influenza-like illness. A causal relationship between immunisation with influenza vaccine and GBS has not been established.’
This is further supported by the Medicines & Healthcare products Regulatory Agency (MHRA) which states:
‘The balance of epidemiological evidence is not sufficient to confirm that currently used influenza vaccines are causally associated with the development of GBS. As GBS also occurs naturally in the vaccinated population, and particularly because flu-like illness is a known risk factor for GBS, a number of cases are reported each year in temporal association with vaccination. This does not mean the vaccine was the cause.
Recent data supports the findings made in previous studies that an influenza vaccination may trigger GBS in fewer than 1 in 1,000,000 people vaccinated. There were approximately 14,000,000 people vaccinated in the UK during 2019/20 and there were 11 reports submitted through the yellow card scheme for the same period.
These may be true side-effects, or they may be due to concurrent diagnosed or undiagnosed illness, other medicines or they may be purely co-incidental events that would have occurred anyway in the absence of therapy. Based on current evidence, the MHRA findings are that these reports do not indicate a causal relationship between influenza vaccine and GBS.’
Inflammatory Neuropathies UK adds that this is supported by independent research showing colds and flu-like illnesses are triggers for GBS. The seasonal flu vaccination is a very low risk trigger, with approximately 1 case of GBS triggered per 1,000,000 vaccinations compared with 1 case of GBS per 60,000 cases of flu(1).
A large retrospective study(2) entitled Vaccines and the risk of Guillain-Barré syndrome was published in 2020. In comparing 1,056 cases of GBS with 4,312 controls, Chen et al found no increased risk of GBS or its recurrence among either children or adults within 180 days following vaccinations of any kind, including influenza vaccination. Therefore, previous case reports of GBS shortly after receiving several other vaccines were probably merely coincidental.
On vaccinations in general, our Medical Advisory Board advises:
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DON’T have unnecessary vaccines for travel but DO have all travel vaccines that are recommended for the particular area you are travelling to.
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DO have all vaccines that are ‘necessary’. This includes the flu vaccine (if you are in an at risk group), MMR, DTP, HIF, COVID-19, etc. There are monitoring programmes ongoing so a link would be picked up if it occurred.
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COVID-19 is a more serious disease than influenza and more easily caught. Most people with GBS or CIDP should receive any of the COVID-19 vaccines, except perhaps people with a history of severe allergy.
Vaccines currently in use are amongst the safest medicines available. However, there is no simple ‘yes or no’ answer, and each person must weigh up the risks of not having a vaccination against the very small possible risk from having it.
Having relatively mild side effects such as numbness and tingling is quite common following a vaccination, and is almost certainly nothing to be concerned about. If you have had GBS in the past, or if you have an associated chronic neuropathy such as CIDP, a vaccination might cause a slight ‘flare-up’ of symptoms due to your immune system being stimulated. Most will only last a few days, but if they last longer than this, or if symptoms get worse or start spreading, then I would suggest contacting your GP. Anyone can report side effects of medication or vaccines, regardless of severity, and if you would like to do so, please follow this link: https://coronavirus-yellowcard.mhra.gov.uk/
(1) Jeffrey C. Kwong, Priya P. Vasa, Michael A. Campitelli, Steven Hawken, Kumanan Wilson, Laura C. Rosella, Therese A. Stukel, Natasha S. Crowcroft, Allison J. McGeer, Lorne Zinman and Shelley L. Deeks The risk of Guillain-Barré Syndrome following seasonal influenza vaccination and influenza healthcare encounters, a self-controlled study. The Lancet Infectious Diseases, Vol. 13, No. 9, p730–731 Published: June 28, 2013
(2) Chen, Y., Zhang, J., Chu, X. et al. Vaccines and the risk of Guillain-Barré syndrome. Eur J Epidemiol 35, 363–370 (2020).
Other Acute Inflammatory Neuropathies
These are not variants of GBS but different diseases. We include them here because they are ‘acute’, meaning starting rapidly within weeks, and caused by nerve inflammation.
Brachial Neuritis
Brachial neuritis, also known as neuralgic amyotrophy or Parsonage-Turner syndrome, is a localised severe form of peripheral nerve inflammation causing pain then weakness in one shoulder, arm or hand. It affects 1-2 people per 100,000 per year and occurs unexpectedly.
Typically it starts suddenly with sharp, severe pain in one shoulder or arm. The pain improves after a few weeks leaving weakness (and perhaps numbness) in the same place. The muscles become thin.
It affects nerves in the brachial plexus, which is a bundle of nerves in the shoulder travelling between neck and arm. It usually affects just one side, but sometimes affects both arms, or the diaphragm (a breathing muscle) and almost never the legs. The cause is unknown except sometimes it is genetic.
It typically improves slowly over 1-2 years but may leave some permanent weakness. It usually never happens again.
How is Brachial Neuritis diagnosed?
Brachial neuritis is difficult to diagnose early because the pain is often thought to be a shoulder joint injury or nerve compression. It is diagnosed by neurological examination, usually supported by an EMG test. An MRI may be needed to rule out other conditions. Your GP may refer you to a hospital specialist.
Treatment
There is no proven treatment. Painkillers are usually needed. Corticosteroids may be given if it is diagnosed early, but probably don’t help after the pain has gone. Physiotherapy often helps. Over time, brachial neuritis will improve on its own.
Vascultic Neuropathy
Vasculitis is a disease causing inflammation of blood vessels. This may block the flow of blood which carries oxygen, leading to damage. It can affect any organ in the body often the kidneys, lungs, heart, bowel, skin, and sometimes the peripheral nerves, called Vasculitic Neuropathy. This may happen with or without vasculitis in other organs.
What are the symptoms of Vasculitic Neuropathy?
Vasculitic Neuropathy develops more slowly than GBS and is usually less severe. Classically there is pain, numbness and weakness in one hand or foot, which starts suddenly and persists. Then over the next few weeks or months a similar problem happens in other parts of the body, known as ‘mononeuritis multiplex’. These areas can merge so it affects both feet and hands. It may cause a floppy foot (‘footdrop’). Symptoms are variable but often include:
Unlike many of the other peripheral neuropathies, vasculitic neuropathy can be very asymmetric and affect one limb more than the rest.
How is Vasculitic Neuropathy Diagnosed?
Blood tests usually show markers of inflammation or antibodies. Vasculitis may be diagnosed in another part of the body. Nerve conduction tests (EMG) can show neuropathy. Some people need a biopsy of nerve or muscle.
Treatment
The inflammation is usually suppressed by a combination of corticosteroids and strong immunosuppressive treatment. Treatment may be led by a rheumatologist, or kidney specialist. Nerve pain can be treated with a number of medications, some of which were originally developed for treating depression or epilepsy.
Sources of support
For more information about this condition contact one of the following charities:
Vasculitis UK: www.vasculitis.org.uk
Versus Arthritis: www.versusarthritis.org
British Lung Foundation: www.blf.org