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Guillain-Barré Syndrome Support Group
After GBS — Pain
This series of guides is produced by the Guillain-Barré Syndrome Support Group. We are aregistered charity that supports those affected by the Guillain-Barré syndrome (GBS) and relatedconditions in the United Kingdom and the Republic of Ireland. The related conditions includechronic inflammatory demyelinating polyradiculoneuropathy (CIDP) and Miller Fisher syndrome(MFS).
Our guides are easily downloaded from our Web site at www.gbs.org.uk in PDF format and maybe both read and printed using free Adobe Reader software. Alternatively, you can request printedcopies from our office.
For information and support, ring our helpline on 0800 374 803
In the Republic of Ireland, call 0044 1529 415278
by Dr B Lecky, Consultant Neurologist, Walton Centre, Liverpool. First published in
After GBS, edited by Jane Tempest-Roe, Administrator GBS Support Group.
Pain in GBS may never be a problem but can occur in three main situations:
In the acute stage of the illness, some patients experience spinal pain, most commonly low backpain, and this may even be the presenting feature. The pain is thought to be due to acuteinflammation of the nerve roots in the spine. The pain can sometimes be severe and may requirestrong analgesics (pain killers). It does however usually settle.
In the acute stage of the illness, if weakness is severe, many patients experience non-specificgeneral discomfort because of the inability to move and obtain the normal relief of a morecomfortable position of the limbs or body. This particularly applies to ventilated patients whohave the added difficulty in communicating with their nurses. Although pain killers and tricyclicdrugs such as amitriptyline (Tryptizol®) may be needed, particularly if sleep is very interrupted,this problem is considerably helped by nurses and physiotherapists being aware of the patient’sdiscomfort and aiding movement.
Usually in the early recovery phase, some GBS patients experience painful pins and needles(paraesthesiae) or other unpleasant sensations, such as burning feelings in the hands and feet.
These symptoms tend not to respond to analgesics, but usually respond to some anticonvulsantdrugs such as carbamazepine (Tegretol®), and gabapentin (Neurontin®) sometimes withamitriptyline. The problem does tend to resolve as recovery proceeds.
As pain can make one irritable and difficult to live with at times, it is important that family andfriends are kept informed, so that they can understand the reason for such behaviour.
Remember that because the nerves to the hands and feet are the longest in the body, pain willlinger in the extremities after it has left other parts of the body.
Some helpful suggestions
Over-the-counter analgesics: paracetamol/acetaminophen (Tylenol®), aspirin, ibuprofenmay help mild pain. Stronger analgesics may sedate and be constipating.
Capsaicin, a topical analgesic cream, made from peppers. (Note. This has been reported tocause nerve damage in some patients.)
TENS machines (portable battery-operated powered devices) stimulate the skin andunderlying nerves to block pain.
Foot baths, good chiropody. Massage / massage machines.
Foot cradles at night-time to keep the bed clothes from touching the feet, or apply anointment and loose fitting socks.
Heat therapy (hot water bottles with cold or hot water). Freezer blocks. (Heat generallyrelieves soreness, aches and pains, whereas coldness lessens pain sensations by numbingthe affected areas).
Support stockings/socks. Woollen socks, soft soled wide-fitting shoes, gloves.
Complementary therapies/herbal remedies.
Gentle exercise encourages the production of endorphins, which can have a direct influenceon the reduction of pain.
Consult your GP about a local pain clinic and/or pain management programme.
(020) 7631 8870, www.britishpainsociety.org
0151 529 5820, www.painrelieffoundation.org.uk
If after reading this guide you still have anxieties and unanswered questions, telephone our helplineon 0800 374803 (UK) or 0033 1529 415278 (RoI). Alternatively, you can e-mail us or registerfor support on-line
The GBS Support Group is a registered charity and receives neither government nor Lotteryfunding. If you have found this guide helpful and would like to help us to continue publishingcopies for others affected by GBS and its related conditions, please consider making a donationto the Support Group. Secure donations may be made on line. Alternatively you can request aform from our office.
GBS Support Group, LCC Offices, Eastgate, Sleaford, Lincs, NG34 7EB
Tel: 01529 304615 E-mail: firstname.lastname@example.org Web site: www.gbs.org.uk
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