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        • March 14, 2024 at 12:01 pm


          shaneo

          Keymaster

        • #3833

          Hi. I recently got gbs in may 2023. Some days I feel great and other days I can’t leave the bed and keep getting all tingly and unable to do much. I go to my local gp regularly. He does not seem to care too much and I feel he does not believe me. He is always asking why I have not gone back to work &
          Is telling me I don’t do enough. I’ve worked a small bit. Once I done a few hours work and spent 2 weeks at home after it due to fituge & exhaustion. I have asked him if he can refer me back to the clinic as I want an opinion other then his and feel I am still very sick but is being very dismissive and won’t just ask them the question . It’s really taking a toll on my mental situation. Any help would be appreciated as I feel very lost. Thanks
          Shane

        • March 14, 2024 at 1:39 pm


          Gareth Parry

          Keymaster

        • #3834

          Hi Shane: Sorry to hear you are having such a difficult time. Intermittent tingling and a sense of overwhelming fatigue do occur quite commonly after GBS, even when strength has recovered. It is a bit unusual for things to fluctuate so much with some near-normal days and others where you are seriously affected but I think it is most likely that what you are experiencing now is the result of that previous GBS. A much more difficult question is what can be done about it. Unfortunately, not much. I am going to ask my colleague, Dr Suzie Mudge to give you some advice about the fatigue management. Otherwise, it is just a matter of being patient. You are not yet a year out from your GBS attack and improvement is going to continue. It may take 2 years or even more before you get maximal recovery. I don’t know where you live but getting hooked up with a local support group can really help by seeing that others have had similar experiences and have come through it eventually. Gareth

        • March 14, 2024 at 3:54 pm


          Suzie Mudge

          Participant

        • #3835

          Hi Shane, I endorse Gareth’s assessment that it sounds like you are experiencing fatigue, which is very common after GBS. We’ve just created a short information page about fatigue after GBS, which is a really good place to start: https://gbsnz.org.nz/how-you-can-manage-fatigue/ and there are links to other sites with good advice about managing advice (although the conditions might be different, the way to manage fatigue is quite similar).. We have recently run a study to try to improve fatigue after GBS and found that graduated activity helps but so do other strategies and sometimes people had to try out different strategies to see what worked best for them. My suggestion is just to try one thing at a time and see how you respond. If you feel like you need more help to manage it, you could see an occupational or physiotherapist experienced working with people with neurological conditions for some advice that is tailored more to your specific situation.

        • March 18, 2024 at 3:05 pm


          Tony Pearson

          Keymaster

        • #3847

          Hi Shane. Where are you based? – If you contact me by Email to tonypearson@xtra.co.nz I might be able to put you in touch with other GBS’ers in your area who can share advice and experiences with you. Tony Pearson Secretary and National Co-ordinator GBS Support Group NZ 03 540 3217 027 687 1953

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