Temperature sensitivity over a year post-diagnosis?

    • November 3, 2015 at 10:37 pm

      Hello! I was diagnosed with GBS in September 2014, and for the most part feel 100% recovered. (Okay, maybe more like 95%). As the temperature is cooling, I’ve noticed that my hands and feet are extremely sensitive to the cold – to the point where I nearly lose function of my fingers. This happened last year when I was in full recovery mode, but it’s rather new since I’ve felt recovered. Has anyone else had this happen a while after recovery? I’m just not sure if I should blame the GBS or if I should look at other options.


    • November 3, 2015 at 11:36 pm

      Sensitivity to cold is one of the symptoms many here have reported. It seems it is common during the Winter to experience this. Maybe it has something to do with the nerves regenerating? If so I would take it as a good sign.

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    • November 4, 2015 at 2:17 am

      Thanks for the response! I just wanted to know if it was something others have experienced – and I guess it’s par for the course. Guess I’ll have to break out the gloves for daily use now..

    • November 4, 2015 at 5:44 am

      It’s been 2 years now ; I’m 80 % ok : but my feet kills if the temperature rises: and I need to sit in air conditioned room for relief : my hands still drop things : and I get tired very fast : : but overall things are getting better : I have started driving again and that’s a big accomplishment : my prayers for all for a speedy recovery :

    • November 7, 2015 at 1:41 pm

      Having had the Miller Fisher variant of GBS back in 2000, all was descending for me. Not so much my feet, but my hands and fingers bear the residual of always being temp-sensitive. As the winter sets in and the days get cooler, so do my hands! They feel like they’ve just been in the icebox at times. When on an outing at night, and in one place, I’m the one sitting on my hands to keep them warm. Really the least of my worries, have grown to accept this, and no longer a nuisance. Hope this helps. Norm

    • November 9, 2015 at 8:43 am

      I still get very numb fingers and toes in even cool temperatures, 3 1/2 years after diagnosis. I think it’s pretty common with GBS’ers. Our poor nerves have been through a lot. I’ve no idea though, whether it’s a sign of nerve damage or nerve regeneration. I’m hoping for the latter. 🙂

    • November 10, 2015 at 12:08 am

      Lets all hope its nerve regeneration:; my toes burn 24/7 : my hands are also still weak and I keep dropping things: these are all after symptoms and the residue of GBS :: let’s be patient and keep faith for 100% recovery: God bless

    • November 10, 2015 at 1:19 am

      With upper body involvement, to this day I still experience chronic balance episodes, atrophied vocal chords, and bouts of proximal vertigo along with the hand and finger sensations. What is amazing is how wonderful the brain adjusts to these things as “normal”, to a point. Most of the time these things are doable, for which I’m grateful. I look forward, as you do… that we’ll recover completely. If not immediately, then ultimately, to be sure.