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. 

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:

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:

The type of support that might be in a care plan:

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. Balance and co-ordination problems are also not uncommon. 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. For most people, they gradually decrease over time, but you may feel some of them coming back in a milder form at periods like that for a year or two. It is very unlikely that this indicates a recurrence of GBS, which is very rare. Unfortunately, around 15% of people will not make a good recovery, and will experience permanent mobility and dexterity problems, perhaps remaining dependent on a wheelchair or other mobility aid. Persistent pain and fatigue may also be an ongoing issue that needs to be managed.

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 GAIN.

Hygiene and cleanliness

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.

Teeth

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; https://www.bsdh.org/index.php/how-to-find-a-special-care-dentist

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; https://www.nhs.uk/live-well/eat-well/

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, your doctor (rather than Google!) will be able to advise you on anything that may help you during recovery.

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

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/

Welcome to our Guillain-Barré Syndrome Information Hub.

Here we breakdown what is happening to you or a loved in simple but proper terms. Our information is sourced from our Medical Advisory Board, medical texts, and recognised support providers. 

If you have any questions after reading this that you feel haven’t been answered. Please get in touch with us, we will strive to point you in the right direction. 

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