Temperature control

    • Anonymous
      June 19, 2006 at 4:39 pm

      Hi everyone,

      I’m wondering if a problem I’m having has anything to do with GBS residuals.

      My actual body temperature (as measured by a thermometer) is normal, but I feel hot. Not like hot flashes, but nearly all of the time.

      I can even feel that a room is cool on my skin, but inside, I still feel like I’m hot, even in the winter. This is unusual for me, because before, I was more prone to get cold easily. Now, my husband thinks I keep the house freezing.

      This may be totally unrelated to GBS, but I’ve learned since I got this disease, that it has so many quirky manifestations, that I immediately think of GBS when something is out of whack with my body.


    • Anonymous
      June 19, 2006 at 4:42 pm

      Oh, I forgot to mention that I also have a hard time controling my body temperature – the room temp may be constant, but I get hot or cold, unrelated to the room temp.

      Really, I’m not a mental case, but I probably sound like it.


    • Anonymous
      June 19, 2006 at 4:56 pm

      Greetings from Music City,
      I have that problem with temp control. Doc said its because our nerves control it and its out of wack. I can stand it warmer in the house now than I could a few years ago. Humidity, heat, makes me short of breath. I have a dehudimifier running in the summer. It really helps, as I am able to raise the room temp. now and save some on cooling bills. It can get humid here in Tennessee.
      Good Luck
      God Bless
      ps I have cidp, the chronic form of GBS

    • Anonymous
      June 19, 2006 at 10:38 pm

      suzanne, its not in your head, its your small fibers doing their job or actually slacking in their job. i have the same problem, before i was always cold, now i’m hot-can only tell that when my eyes get hot. the small fibers are responsible for sensations like hot/cold and so forth, when they don’t get the signals right you can’t sense things right. it has nothing to do with your mind. sometimes its a good thing-you can go into cold water when others are too chicken to swim in it–more swimming room for you! take care!:)

    • Anonymous
      June 20, 2006 at 10:36 am

      That is so interesting Suzanne, I thought I was maybe getting looooooooooooooooong hot flushes as a sign of getting older. Noticed none of my friends got it though. 😀

    • Anonymous
      June 20, 2006 at 10:59 am

      i have been rejected for several nontemperature gbs studies cuz i told them, if i went to their place, they had to control the temp as i needed. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      June 20, 2006 at 4:07 pm

      I use to be cold all the time. Since last year I started getting hotter inside but the outside wasn’t that hot. I even got myself check to see if I was getting early sign of perimenopause sp? I was told no. I was thinking maybe it was do to my having thyroid problems and I am not being treated yet.. Now I am glad I am not the only one. My face get so flush my Mom asked me a few weeks ago if I was going through the change. Also at work it get so hot some days I cna’t stand it.


    • Anonymous
      June 20, 2006 at 4:28 pm


      My actual body temperature is now normal at 97.4. So when I have a temperature of 100 I know I REALLY have a fever. I am in general a little bit warmer. I think the main thing is that I cannot tolerate the extremes at all. Unfortunately, Oklahoma City is nothing but extremes… And I get real bitchy when I get hot.

      My feet are really bad at changing in temperatures – one minute they are hot and feel swollen, and then a few minutes later I need to turn on a heating pad.

      And I think I am fairly close to some womanly changes – oh joy…

    • Anonymous
      June 20, 2006 at 11:37 pm

      My son ‘s leg and feet can be ice cld and his head & chest are burnin up. He asks for ice or a ice cloth to be put on his head, while the room temp is @ 65. The Dr’s say it is his nerves healing and going bonkers in his body. I’m constantly putting blankets on and taking them off.
      Good Luck!
      TMR’s Mom, Nancy

    • Anonymous
      June 20, 2006 at 11:52 pm

      hi guys i can relate to this one. when i was first sick i couldn’t feel temperatures at all. couldn’t tell if things were hot or cold. now i can feel those pretty much but i am also hot all the time. i used to be cold all the time and now 55 is more than comfortable. have no clue why. i freeze out everyone in the car, the house and anywhere else i go. i can tell that the air against me is cold but yet my body inside feels boiling. it is frustrating but not as bad as before. i’m 43 now so i guess i can also figure on things being different because of my age. yukkkkk

    • Anonymous
      June 21, 2006 at 8:30 am

      While I was in the hospital, I was hot all the time. There would be a fan blowing on me constantly, but I would be covered, head to toe, with a sheen of sweat. I was that way most of the time, but then, I would suddenly be freezing. Then in a few minutes, I would be hot again. That finally started getting better as I went into rehab. Now, I think I am mostly back to normal. It has been 13 months since my onset.

      Tonya Correll

    • Anonymous
      June 22, 2006 at 1:01 am


      I am 6 years post GBS and I have had the problem all those years. I was beginning to wonder if my hot flashes would ever end.

      In the forum of before hacker, we discussed this and many people had the same problem especially in hot weather.

      I use to get panic attacks and only air conditioning would help. I love the fresh air and all the noises of summer and this was frustrating me.

      I did notice that when I stopped using Zoloft, my hot flashes reduced intensity and my having problems with hot weather and the panic attacks were reduced quite a bit. Unfortunately,the hot flashes are still here. When I do work around the house, I noticed that I sweat even more and have to change my clothes. I guess that means I shouldn’t do any work….I wish.

    • Anonymous
      June 30, 2006 at 10:08 pm

      Thanks everyone for the feedback. Sounds like this is not too unusual as a GBS residual.

      Now, does anyone have suggestions of a way to get this fluctuation under control?

    • December 5, 2014 at 12:13 pm

      I have this problem, as a man and have studied it extensively. A small new group of neuros in Tazmania started working on it also. GBS can leave the hypothalamus with a lesion which can alter many things. Temp control is one. The body especially in winter is trying harder to maintain homostasis, of 98.6. In winter it has more work. In summer the ambient temp is closer hence winter brings it out more. No answers yet but many are working on it. Don’t suffer in silence. Join my group, One a Step at a Time: Living with Guillain Barre on Facebook. It is a secret group so look for Bob Shannon first. My Timeline is public in better order to identify me.

      • May 22, 2015 at 12:45 pm

        Reading your link and others I am greatly relieved to find others with the heat problem Should we all move to Alaska ! Guess not since it even happens in the cold.

    • January 17, 2015 at 5:43 am

      Not sure why, but young sexy woman get my blood boiling. Nothin’ I can do about it. Is that GBS related?

    • June 30, 2015 at 1:52 am

      I have had CIDP since ’05 and my strength is doing well now with monthly maintenance of IVIG. I have trouble with heat the whole time. I cant wear long pant and I will start shacking, sweating and fatigue sets in quickly. I wear shorts year round and in the winter I keep long pants a long sleeve shirt and a heavy coat in my trunk of my car incase it breaks down. I wear shorts in single digit weather with problems at all.

    • June 30, 2015 at 1:28 pm

      Since I had initially written my first post on temp. control , I have had a blood panel on every single deficiency it could be to make me so warm always. All tests came back normal. I even tried Estrovan thinking perhaps it was hormonal. As I had previously stated my hypothalamus was “fried” after (3) 107 degree fevers,while in a coma with GBS. This e mail site is the only thing after repeated doctor visits, that can make you feel you are not crazy, or a hypochondriac, or the only one in the world who wears shorts in the winter !

    • June 30, 2015 at 5:39 pm

      Ive been studying this as a patient for six years. Hypothalamus is the key word. Studies show that GBS leaves a range of lesions. These lesions prevent or disturb the body from reaching HOMEOSTASIS. Mine happens mostly in the winter and sounds much like everone elses. One blood panel showed my testosterone to be 25% low. We are going to try and bring that up this next winter.

    • July 15, 2015 at 7:57 pm

      Ahh, GBS…the gift that keeps on giving. 🙂 Wish it could be returned or exchanged.