Guillain-Barré syndrome: Signs and symptoms

What is Guillain-Barré syndrome?

 
Named after two of the French doctors who first described it in 1916 – Georges Guillain and Jean Alexandre Barré – Guillain-Barré syndrome is an uncommon autoimmune condition that affects the nerves (neuropathy). While rare it’s also serious, with symptoms starting suddenly and rapidly. In fact, if you develop Guillain-Barré syndrome you’ll usually need immediate hospital treatment.
 
Thankfully these days most people with Guillain-Barré syndrome who are treated and monitored appropriately make a full recovery. But very occasionally it can be life-threatening, with a small number of people who develop it also left with long-term health problems.
 
In the UK about 1,500 people develop Guillain-Barré syndrome every year (i). The syndrome can affect anyone of any age, but it’s more common in adults – the peak ages for developing it are 15 - 35 and 50 - 75 years – with men more likely to be affected than women (ii). Worldwide, around 100,000 people are thought to develop Guillain-Barré syndrome every year (iii).
 

What are the symptoms of Guillain-Barré syndrome?

 
Guillain-Barré syndrome is an inflammatory neuropathic disorder that affects the peripheral nerves, which are the nerves outside the brain and spinal cord (central nervous system). The symptoms include weakness, numbness and pain, mainly in the feet, hands and limbs.
 
Early symptoms usually develop very quickly and tend to start in the feet and legs then sometimes spread to other parts of the body (both sides are affected at the same time). These early symptoms can include:
 

• Numbness, usually starting in the fingertips and/or toes

• Muscle weakness that starts in the hands and feet and moves towards the centre of the body (the legs are more often affected than the arms)

• Pins and needles

• Balance problems

• Co-ordination difficulties

• Back and leg pain (about half of people with Guillain-Barré syndrome develop nerve pain or deep muscle pain that can be worse with movement and at night (i))

• Reduced or lost muscle reflexes (if a doctor taps your knee in a particular place your leg will usually twitch – this doesn’t happen or only happens slightly in most people with Guillain-Barré syndrome)

 
As the condition progresses these symptoms get worse for several more days or a few weeks, typically reaching their peak within four weeks (though this varies from one person to another). Some people who have a mild case of Guillain-Barré syndrome may not experience any further symptoms, but others who are affected more severely can develop one or more of the following:
 

• Walking difficulties (even if you have a mild case your lower legs may be affected to such an extent that you may need a walking stick to get about)

• Breathing difficulties (breathing is affected in around one in four people with Guillain-Barré syndrome because the muscles of the chest can become very weak (i))

• Severe pain, especially at night

• Speech difficulties

• Problems with chewing and swallowing

• Facial muscle weakness

• Paralysis (legs, arms and/or face)

• Blurred or double vision

• Urination difficulties

 
After the symptoms have reached their peak they tend to stay the same for a few days or weeks, after which they usually start to improve. How long it takes to recover can vary widely from person to person, but typically it can take at least several months.
 
If you notice any of the early symptoms of Guillain-Barré syndrome it’s important to see your GP as soon as possible. Meanwhile if you develop problems with breathing, swallowing or speaking, or if you can’t move your arms, legs or face, get someone to call 999 for you or take you to your nearest hospital A&E department, as it’s very likely you’ll need emergency hospital treatment.
 

What are the complications of Guillain-Barré syndrome?

 
If Guillain-Barré syndrome affects your autonomic nerves – the nerves that control unconscious processes such as breathing, digesting food and the beating of your heart – it can cause potentially serious complications, including:
 

• Severe breathing difficulties (respiratory failure)

• Unstable blood pressure

• Irregular heart rhythm

• Bladder control problems

• Digestion problems

 
Having Guillain-Barré syndrome can also increase your risk of developing infections,
 

What are the 4 types of Guillain-Barré syndrome?

 
Guillain-Barré syndrome includes several different variants, including:
 

Acute inflammatory demyelinating polyradiculoneuropathy  

AIDP for short, this variant accounts for around 95 percent of Guillain-Barré syndrome cases (ii). If you have AIDP you will typically experience numbness and tingling as well as weakness, usually starting in the lower part of the body and gradually affecting other areas.
 

Acute motor and sensory axonal neuropathy  

 A rare and severe subtype, AMSAN symptoms include weakness in the extremities and sensory symptoms such as tingling, numbness and pins and needles. It often has a long recovery time.
 

Acute motor axonal neuropathy 

As well as muscle weakness, AMAN’s symptoms include balance, co-ordination and speech difficulties as well as vision problems and occasionally breathing problems, but it doesn’t usually cause tingling or numbness. AMAN is thought to account for just five percent of Guillain-Barré syndrome cases in Europe and the US (iv).
 

Miller Fisher syndrome  

Also considered a variant of Guillain-Barré syndrome, Miller Fisher syndrome causes symptoms such as mild to severe muscle weakness, paralysis of the eye muscles, problems with co-ordination and breathing difficulties (sometimes severe).
 
Chronic inflammatory demyelinating polyradiculoneuropathy – or CIPD – is a similar but longer-lasting illness than Guillain-Barré syndrome, where symptoms continue to get worse for more than eight weeks (sometimes after improving first) and nerve inflammation lasts for years. This used to be called chronic Guillain-Barré syndrome (or chronic GBS).
 
Treatments for Guillain-Barré syndrome have improved, and these days about seven or eight in every 10 people affected recover from the condition within six to 12 months, including those with severe symptoms or complications such as total paralysis or respiratory failure (i). However approximately one in five people are left with a long-term problem such as pain, muscle weakness or wasting, or walking difficulties. Even more seriously, because Guillain-Barré syndrome can cause severe breathing problems and other complications such as heart problems, it is fatal for about one in 20 people who develop it (v).
 

What causes Guillain-Barré syndrome?

 
Guillain-Barré syndrome is an autoimmune condition, which means it’s caused by an over-reaction of the immune system. Normally your immune system attacks harmful micro-organisms that enter your body, such as viruses and bacteria. In some people, however, the immune system mistakenly attacks healthy tissue in the body – in the case of Guillain-Barré syndrome, this healthy tissue is the peripheral nerves.
 
Find out more about autoimmunity in our guide to common autoimmune conditions. 
 

How do you get Guillain-Barré syndrome?

 
In most cases of Guillain-Barré syndrome the immune system damages a part of a nerve called the myelin sheath – this covers the axon, the central conducting core in the nerve. Myelin sheaths are important because they speed up the transmission of nerve signals. So if you have Guillain-Barré syndrome it means your nerves cannot transmit signals efficiently, and your muscles can no longer respond to commands from your brain as well as they should. It can also cause sensory problems such as numbness, because information like touch sensations are prevented from being sent to the brain.
 
We don’t always know why this happens, but we do know that Guillain-Barré syndrome isn’t infectious – so you can’t catch it from someone or pass it to anyone else – nor does it run in families. There are, however, certain things that are thought to trigger the immune system to overreact and cause Guillain-Barré syndrome:
 
Infections  According to experts, about 75 percent of people with Guillain-Barré syndrome had a viral or bacterial infection one to three weeks before their symptoms started (ii). Some of the main infections linked to Guillain-Barré syndrome include:
 

• Food poisoning (especially when caused by Campylobacter bacteria) and gastroenteritis

• Flu

• Glandular fever

• HIV

• Cytomegalovirus (a common virus that can cause flu-like symptoms, though most people don’t have any symptoms and don’t realise they have it)

• Zika virus (an infection spread by mosquitoes)

• Dengue fever (another infection spread by mosquitoes)

• Herpes simplex (the infection that causes cold sores and genital herpes)

• Covid-19

• Pneumonia caused by the bacteria Mycoplasma pneumoniae

 
It is, however, important to remember that the vast majority of people who get these infections never develop Guillain-Barré syndrome. Meanwhile some experts also suggest Guillain-Barré syndrome can also be triggered by some medical conditions such as lupus, Hodgkin disease (cancer of the lymphatic system) or after having surgery (vi).
 
Vaccines   Guillain-Barré syndrome has been reported in people who had certain vaccinations in the days or weeks before their symptoms started. But this is very rare. For instance, for every million people vaccinated against flu, only one or two may develop Guillain-Barré syndrome – so you’re more likely to develop Guillain-Barré syndrome after having the flu than after having a flu vaccine (vii). Indeed, according to the NHS research has found the chances of developing Guillain-Barré syndrome after having any vaccination are extremely small (viii).
 
There have also been reports of Guillain-Barré syndrome developing in people after they’ve had surgery, including a bone marrow transplant, but again this is very rare. Meanwhile others who have an increased risk include women who’ve recently had a baby (the risk is reduced during pregnancy but increases for a few months after childbirth). In all cases, the risk even when increased is tiny.
 

How is Guillain-Barré syndrome treated?

 
Guillain-Barré syndrome can be hard to diagnose because it shares symptoms with several other conditions. However if your GP suspects you may have it, they will usually refer you to a specialist straight away for tests. These can include tests that check how well your nerves are working, or you may need a lumbar puncture – this is when some of the fluid around your spinal cord is removed for analysis. Other tests include blood tests, spirometry (this checks how well you’re breathing) and an electrocardiogram (ECG), which records the electrical activity of your heart.
 
If you’re diagnosed with Guillain-Barré syndrome, you will be admitted to hospital immediately. This happens because the symptoms can become worse very quickly, and you may need help with breathing and with your heart. While at hospital you will also receive treatment with one or more of the following:
 
Intravenous immunoglobin   IVIG is the most common treatment for Guillain-Barré syndrome (ix). This isa fluid that’s given directly into a vein and is made from donated blood that contains immunoglobin, an antibody found in the bloodstream. Doctors don’t know exactly how it works, but it’s thought to stop any harmful antibodies your immune system has made from attacking and damaging your nerves. If you receive this treatment within two weeks of your symptoms starting, it’s more likely to be effective than if you receive it later.
 
Plasma exchange   Also called plasmapheresis, this is sometimes used instead of IVIG – though it’s the less common of the two treatments these days. Plasma exchange involves a special machine that takes small amounts of blood from your body and separating out the fluid known as plasma, then replacing it with a plasma substitute. This process filters out the antibodies that are attacking your nerves and usually takes around five days to complete. As with IVIG, the sooner you start plasma exchange, the better the results are likely to be.
 
While you’re in hospital you’ll be monitored closely for any other problems your condition may be causing, such as breathing problems or problems with your heart. If you do develop any of these complications you’ll need further treatment – you may need to use a ventilator, for instance, if you’re having difficulties with breathing, a feeding tube if you find it hard to swallow food, or painkillers if you’re experiencing pain.
 
Other treatments you may have at hospital include physiotherapy to help build up strength in your muscles. You may also receive counselling, since having Guillain-Barré syndrome can affect your mental health and cause low mood.
 
Most people who are treated in hospital for Guillain-Barré syndrome will have to stay there for at least a few weeks and maybe for a few months or longer. Being inactive can increase your risk of developing blood clots, so you will usually have to wear support stockings while you’re in hospital, plus you may need injections of a blood-thinning medicine too.
 

Guillain-Barré syndrome recovery time

 
It usually takes several months or even several years to fully recover from the nerve damage Guillain-Barré syndrome can cause, and even then one in five people are left with problems in the long term such as walking difficulties, fatigue, muscle weakness, numbness, pain, and balance and co-ordination problems (x). So once your initial hospital treatment has finished you may still need help and support from a range of health specialists, including:
 

• Physiotherapists to help with moving and strengthening your muscles

• Occupational therapists to help you find solutions to the problems your condition may be causing in your day-to-day life

• Speech and language therapists if you’re having problems with communication and also swallowing

• Counsellors to help you cope with your emotions

 
Some people may also experience a relapse of some of their previous symptoms such as muscle weakness and tingling even years after they were initially affected. But on a more positive note, most people with Guillain-Barré syndrome do recover fully in time.
 

Can your lifestyle and diet help Guillain-Barré syndrome?      

 
According to the UK charity Guillain-Barré and Associated Inflammatory Neuropathies (GAIN), when it comes to diet the general advice for people affected by peripheral neuropathy is to follow the recommendations in the NHS Eatwell Guide (xi). These include the following:
 

• Eat a wide range of fresh fruit and vegetables

• Choose wholegrain or wholewheat alternatives instead of highly processed cereals, bread and pasta

• Eat a range of differently coloured foods (the colour pigments found in plants include different phytochemicals that are considered beneficial to health)

• Eat less red meat by having more lean poultry and fish, including at least one portion of oily fish each week

• Also reduce your meat consumption by replacing or supplementing it with plant-based proteins such as those found in lentils, pulses and beans

• Have only small amounts of fats, sugar, alcohol and processed meats

• Drink at least six to eight glasses of fluids – such as water – every day

 

Are there supplements that can improve neuropathy?

 
Unfortunately there is a real lack of studies investigating the use of nutrition and nutritional supplements specifically in people recovering from Guillain-Barré syndrome. There are some, however, that have explored the potential benefits of nutrition and supplements in more general peripheral neuropathy – though many of these focus on neuropathy caused by diabetes (diabetic neuropathy), so we cannot be sure the results would also apply to neuropathy caused by Guillain-Barré syndrome (many of these studies are also not human studies, which also makes their results less robust). That said, however, some research that may be worth mentioning includes the following:
 

• A report published in the medical journal Practical Pain Management outlines a small number of case studies who had improved neuropathic pain and function as a result of taking high-quality fish oil supplements (xii). The authors claim there have been suggestions the omega-3 fatty acids in fish oil supplements may block substances called pain neuron voltage-gated sodium channels that underlie neuropathic pain. 

• One review of studies concludes a supplement called acetyl-l carnitine (ALC) may reduce pain in peripheral neuropathy by up to 20 percent when compared with a placebo (dummy pill) (xiii). The authors of the review suggest ALC is an effect and safe treatment in painful peripheral neuropathy, particularly in people with diabetes. 

• A study looking at the effect of N-acetylcysteine (NAC) on painful neuropathy has found those taking the supplement alongside conventional medication for eight weeks may enjoy up to 50 percent less pain when compared to those taking a placebo (xiv). The study only involved participants with diabetic neuropathy.

• Again only looking at peripheral neuropathic pain related strictly to diabetes, researchers have found a substance called palmitoylethanolamide (PEA) to be effective, not just for reducing neuropathic pain but also for improving mood and sleep (xv). PEA is often used as an alternative to CBD, as both substances are thought to have similar properties such as the ability to reduce pain and inflammation. However studies have suggested PEA may be the safer option, as it has been far more widely researched and has a more robust safety profile (xvi). 

• Another study involving people with diabetic neuropathy found those taking daily alpha lipoic acid supplements reported not only reduced neuropathic symptoms – including pain – but also improved quality of life (xvii).

 
If you are recovering from Guillain-Barré syndrome, speak to your doctor or specialist before trying these or any other nutritional supplements.
 

Can Guillain-Barré syndrome be prevented?

 
Since we don’t know why a small number of people develop Guillain-Barré syndrome after an illness or infection and others don’t, there’s a limit to what we can do to prevent it. Staying as healthy as possible and avoiding the infections that can trigger it may be a good idea, not just to help stop Guillain-Barré syndrome developing but for your health in general. Some of the things you could do include the following:
 

• Get your flu jab every year (if you’re not eligible for a free flu jab on the NHS, you may want to consider paying for the vaccine yourself). If you’re 65 or older, or have a health condition that makes your health more vulnerable you should also have a one-off pneumonia vaccine plus annual Covid-19 vaccines when they’re available

• Try to avoid situations where you may come into contact with people who have flu or other infections

• Wash your hands frequently and thoroughly to destroy the germs that can trigger Guillain-Barré syndrome

• Regularly clean and disinfect surfaces that an infected person may have touched or sneezed/coughed over, including tables, countertops, door handles, taps and other kitchen/bathroom fixtures

• As well as eating healthily it’s also a good idea to stay physically active, as regular exercise can also help keep your immune system in good working order

 
 

Want to find out more?

 
If you’re recovering from Guillain-Barré syndrome or caring for someone with the condition there’s support available from support groups including GAIN – call the charity’s helpline on 0800 374803 for details. Meanwhile our pharmacy health library has a section devoted to conditions that affect the nervous system that you may find useful.

 

 
 
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13. Stefano GD et al. , Acetyl-L-carnitine in painful peripheral neuropathy: a systematic review Journal of Pain Research 2019; 12: 1341-1351. Available online: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6498091

14. Heidari N et al. , Ameliorative Effects Of N-Acetylcysteine As Adjunct Therapy On Symptoms Of Painful Diabetic Neuropathy Journal of Pain Research 2019; 12: 3147-3159. Available online: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6875491/

15. Pikering E et al. , A randomized controlled trial assessing the safety and efficacy of palmitoylethanolamide for treating diabetic-related peripheral neuropathic pain Inflammopharmacology 2022 Dec; 30(6): 2163-2177. Available online: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9700575/

16. Clayton P et al. , Palmitoylethanolamide: A Potential Alternative to Cannabidiol Journal of Dietary Supplements 2021 Nov; 28: 1-26. Available online: https://www.tandfonline.com/doi/full/10.1080/19390211.2021.2005733

 

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Disclaimer: The information presented by Nature's Best is for informational purposes only. It is based on scientific studies (human, animal, or in vitro), clinical experience, or traditional usage as cited in each article. The results reported may not necessarily occur in all individuals. Self-treatment is not recommended for life-threatening conditions that require medical treatment under a doctor's care. For many of the conditions discussed, treatment with prescription or over the counter medication is also available. Consult your doctor, practitioner, and/or pharmacist for any health problem and before using any supplements or before making any changes in prescribed medications.

 

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