What is guillain-barré syndrome (GBS)?
It’s a rare condition, where your body’s immune response is triggered and causes damage to the nerves in your body. This usually starts with weakness, numbness or pain in your hands and/or feet, and progresses up the limbs. Although GBS can affect anyone, it is more common in adult males.
In most cases people make a full recovery, but some people can be left with long term problems. In severe cases it can be life threatening and the person may need to spend time in an intensive care unit.
How it affects you will depend on the type and severity of the GBS, your general health, response to treatment and how early it is treated.
What types of guillain-barré syndrome are there?
Acute inflammatory demyelinating polyradiculoneuropathy (AIDP)
This affects the myelin (insulation) around your nerves and slows down the speed at which the information travels around your body. Without myelin nerves cannot send messages effectively. Most common in America and Europe.
Acute motor axonal neuropathy
This affects the axons (the main body of your nerves). This is more common in Asian countries.
Acute motor and sensory axonal neuropathy
This is the same as above but affects your nerves responsible for movement (motor) and feeling (sensory).
What causes guillain-barré syndrome and what is a trigger?
It is classed as an autoimmune condition, where your body’s immune system mistakenly attacks itself, specifically damaging your nerves. This can stop or interrupt information going to and from the brain, leading to weakness, pain, sensory changes and tonal changes in your body. The causes of why and how this happens are not clear, but we do know that GBS is not transmissible or inherited.
Although the causes are unclear, it appears that GBS can have triggers. If you’re unwell, under a period of stress or run down for a period of time your immune system will be working to combat this. Normally once you’re better the immune system stops, however in GBS it continues and mistakenly attacks your nerves.
Infections have been known to trigger the response, these include:
● Food poisoning (bacteria)
● Flu (Virus)
● Cytomegalovirus
● Glandular fever
● HIV
● Tropical disease (Dengue and Zika)
Some vaccinations have been linked to an increased risk in the past, but subsequent research has shown that the risk is extremely small. In fact it is more likely that you will develop GBS from the flu than the vaccine to prevent it.
Do I have guillain-barré syndrome, and what should I do?
It may be difficult at first to know you have GBS, as other conditions can share similar onset and symptoms.
Typically GBS presents as:
● Weakness, numbness or changes in sensation in hands and feet that is getting progressively worse, usually travelling up the limbs.
● First you may notice that you are stumbling, dropping things or having difficulty using your hands and feet.
● Be aware of recent health complaints, if you couple the first two signs with recently being unwell this may point to GBS.
● In addition GBS affects your reflexes, often starting further away from your centre, so your feet and hands are often first affected.
If you notice the persistent early signs of GBS then your GP will be able to assess and refer you to a hospital specialist. If you have rapid progression or later signs such as difficulty breathing or you are unable to move limbs then contact the emergency services.
I have been diagnosed with guillain-barré syndrome, what can I expect?
Early diagnosis is often key to successful recovery, injury to your nerves can present with a range of symptoms, once your condition has been stabilised you may be left with some of the following symptoms. You may not have all of these symptoms and they are often dependent on the severity of your condition and other factors.
● Difficulty walking without assistance
● Weakness and inability to move body parts
● Fatigue (tiredness)
● Difficulty breathing
● Difficulty speaking
● Visual impairments
● Difficulty with swallowing
● Difficulty with urinating or opening bowels
● Pain or sensory changes
● Stiffness in joints and muscles
In most cases GBS will not progress to requiring intensive care and usually reaches its most severe point within 4 weeks, this is dependent on how quickly you receive treatment. Once stabilised you can begin a period of recovery as your nerves heal.
How long will I take to recover from guillain-barré syndrome?
Most people make a full recovery from GBS, usually within the year, although in some cases it can take a longer time. Around 15% of people may have mild long term impairments such as foot drop, or fatigue. Around 20% of people will have more severe long term problems from GBS, such as needing a wheelchair and assistance to transfer.
It is important to note everyone is individual and your recovery may depend on other factors, such as any previous health conditions and your overall fitness prior to diagnosis.
Recovery will be dependent on the type of GBS you have and how severe it becomes, with AIDP type (where the myelin is affected) recovering quicker than those with involvement of the nerves (axons) themselves.
What treatment is there for guillain-barré syndrome?
GBS treatment can be split into stages of recovery; initial medical management and rehabilitation period.
Medical interventions:
Depending on the severity of your condition early stage treatment may be more medically focussed, you can expect tests to explore the severity of the condition as well as a hospital stay and possible admission to intensive care should the condition be severe or progress rapidly.
There are two treatments that accelerate recovery from GBS, a plasma exchange (PE, plasmapheresis) and Intravenous immunoglobulin (IVIg).
● PE works by removing the plasma from the blood which contains your antibodies causing the damage and replacing it with a plasma substitute.
● IVIg consists of a high dose of immunoglobulin (antibodies) that block the effects of the harmful antibodies that cause GBS.
Both treatments are equally as helpful and having both is no more helpful than one on its own. These treatments are most effective within the first 2 weeks of onset, so it is important you seek medical assessment early.
Therapies:
Once stable you may well begin your recovery process with therapy input both in hospital or at home, depending on the effects of the GBS.
Therapy often begins in the acute stages of the condition, you may meet physiotherapists, occupational therapists and speech and language therapists who will aim to maximise your abilities whilst in hospital. If you are unable to move yourself the team will aim to help reduce further complications like stiffness, sores, infections through movement and use of a postural management plan to ensure you have opportunity to move, stretch and change position throughout the day. If you have required a ventilator your physiotherapist and speech therapist will work to wean you off needing this over time. Should your condition be less severe you may start to explore moving around and safely getting from A to B using a walking aid, support, or independently if possible.
If you are still in hospital the team may start to explore what you might need to get home, if your condition is less severe you may already be at home and be accessing therapies in the community.
The broad aim of physiotherapy is to help you manage the effects of GBS such as pain, sensitivity, weakness and stiffness and work to improve your strength, balance and movement as your nerves recover.
Occupational therapists will also explore how you manage at home or out in the community, looking at equipment and exploring functional rehabilitation techniques to maximise your independence.
You may also require speech and language therapy (SLT) to help you with your speech and swallowing if these have been affected, either due to the GBS or weakened due to requiring a ventilator for a period of time.
It is important you access all of the above in a timely manner both in hospital and once home in order to help you adjust to the changes in your life and help guide your recovery moving forwards.