Forum Replies Created

Viewing 2 posts - 1 through 2 (of 2 total)

Hello world!

  • Author
  • Post

    • 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.

      in reply to: What to do

    • Suzie Mudge

      Participant

    • #3720

      Kia ora Christian,

      I can give you some generic advice for managing fatigue, however I’m afraid I can’t provide any commentary about the extreme fatigue you have been experiencing recently, which if I understand correctly is over and above the fatigue that you have been dealing with since your Miller Fisher diagnosis.

      Fatigue is a feature of many health conditions and therefore, there is a lot of advice on how to understand and manage available on the web that is also applicable to other conditions. A couple of great websites are:
      * https://www.mssociety.org.uk/about-ms/signs-and-symptoms/fatigue
      * https://www.macmillan.org.uk/cancer-information-and-support/impacts-of-cancer/tiredness
      * you could also check out the MS energise app (from the app store) which which was developed by some colleagues at AUT

      The study that Gareth is referring to that we have just completed showed that activity helps reduce fatigue in GBS, Importantly though, progressions should be made slowly and carefully so as not to worsen fatigue. A lot of the participants in our study used FITT principles to plan and progress exercise where:
      F= frequency
      I = intensity
      T = time
      T = type
      The key thing is to only progress one of these features at a time to avoid too much overload.

      It is really important to try and avoid a ‘boom-bust’ cycle where you do so much activity that you crash for a period of time afterwards. If you feel like you’re experiencing this pattern, then it is worth trying to ease back on the amount of activity that precipitates the bout of excessive fatigue.

      As I said before, these are fairly generic principles and they all may be known to you already. Seeing an occupational therapist or physiotherapist who work in neurological rehabilitation might be helpful to look at the specific features of your fatigue to see if they can offer more individualised advice.

      Ngā mihi,
      Suzie

Viewing 2 posts - 1 through 2 (of 2 total)