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Discharge Instructions for Guillain-Barré Syndrome

You have been diagnosed with Guillain-Barré syndrome (GBS), a condition that affects the nervous system. In people with GBS, the immune system attacks the nerves, often following an infection. But it can also arise out of the blue. This attack can cause weakness or even paralysis. GBS is a temporary illness. Many people return to normal and have no further problems. Others may have some permanent nerve damage. Here’s what you can do to help yourself recover.

Activity

Do's and don'ts:

  • Stay active, but don’t overdo it. Get advice from your healthcare provider or physical or occupational therapist on what your activity should be.

  • Be patient. Recovery from nerve damage is a slow process, and each person’s recovery is unique. You may recover in as little as 3 weeks, or it could take as long as 3 years.

  • Be careful. If you still have numbness and weakness, limit activities in which you could fall or hurt yourself. Use temporary assistive devices (walker, cane) as needed until your strength returns.

  • Set priorities. Decide which tasks you need to do on a given day. Save the others for another time.

  • Talk with your healthcare provider about physical therapy and occupational therapy. These can help you get your strength back.

  • Don’t drive until your healthcare provider says it’s OK.

Getting support

  • Work closely with your healthcare provider and rehab (rehabilitation) team to ensure the best possible recovery.

  • Ask your healthcare providers to work with your employer so that appropriate accommodations can be made.

  • Seek emotional and physical support when you need it; then accept it. This isn’t a sign of weakness.

  • You may find it helpful to talk with a counselor or therapist in addition to your primary care provider.

  • Some people find support groups helpful. The GBS/CIDP Foundation can identify both local and online resources for patients and caregivers. They can also be reached at 610-667-0131 or 866-224-3301.

  • Get out of the house. Ask a friend to visit or to take you on short errands.

Follow-up

Make a follow-up appointment with your healthcare provider as advised. Keep all recommended referrals and follow-up appointments. Rarely, GBS can sometimes get worse.

When to call your healthcare provider

Call your healthcare provider right away if you have any of the following:

  • Numbness or tingling in your legs, hands, or feet that gets worse

  • Weakness that gets worse

  • Dizziness

  • Loss of movement or feeling in your legs, hands, arms, or feet

  • New nervous system symptoms, such as double vision, slurred speech, or trouble swallowing

  • Shortness of breath

  • New bladder or bowel symptoms

  • Fever of  100.4° F ( 38°C) or higher, or as advised by your healthcare provider

  • Chills

  • Symptoms get worse or you have new symptoms

Online Medical Reviewer: Heather M Trevino BSN RNC
Online Medical Reviewer: Marianne Fraser MSN RN
Online Medical Reviewer: Rajadurai Samnishanth
Date Last Reviewed: 9/1/2024
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