hot hot hot

    • Anonymous
      June 1, 2010 at 11:33 pm

      so i have had GBS since 2006 and am slowly reovering, i have no sensation, i can’t feel hot, cold, sharp, or dull anywhere on my body except my face. this has resulted in many burns while cooking food and such, but iv lent to cope well.

      my big question now is does anyone know how to keep cool in the hot weather… because of my neurological condition my body does NOT regulate its temperature. i don’t sweat so i just get hotter and hotter… i drink alot to ensure i dont get dehydrated but i get very hot and suffer from heatstroke often….

      i just got a new ac unit for my apartment.. but i love pending time outside.

      im wondering if anyone elce has this problem and what u do to help…. any ideas would be really appreciated !:o

    • June 2, 2010 at 4:59 pm

      I deal with the same thing on a smaller scale…burn myself and dont realize it, water is too hot but cant tell, etc. During the summer I sleep with ice packs because I am too hot. There are these neck wraps that you can freeze and it helps keep you cool while outside. I think you freeze them and they are similar to wearing a bandana. I think I saw some at walmart in the sporting good section.

      I hope it helps or others have advice as well.

      I found an interesting link to some products:
      [url][/url] the whole site is all about “cooling” stuff. There may be something here that could help you. The vest sounds like a neat idea!

    • Anonymous
      June 2, 2010 at 6:21 pm

      thank u for taking the time to write me back i really appreciate it! good luck with staying safe from the burns….n sensation s mixed blessing…..we dont feel he pain from the burn blisters. but if we had the sensation we wouldn’t get them lol :confused:

    • Anonymous
      June 2, 2010 at 11:04 pm

      Hi, A Friend Of Mine Has M.s.

      She Wears Icepack Vest.

      Dont Know Where She Gets Them, But I’ll Check.


    • Anonymous
      June 3, 2010 at 1:06 am

      Here in Arizona we really have to work hard to stay cool while outside. It is very low tech, but it works. I bought one of those “boonie” hats – soft cotton with brim like crocadille Dundee wears – and soak it it water before I go outside. It provides shade for my face, a block from the sun, and as it evaporates it works like a cooler. Keeping your head cool is very important overall. You loose a significant amount of body heat from your head, so if you keep it cool you keep your body cool. And who cares how goofy you look in your own backyard? I suppose you could soak a shirt in water, too – but the wet hat is the best. I learned about it when I took the kids to the zoo many years ago, started to overheat, and soaked my hat in a water fountain. I stopped what could have been a case of heat stroke. No special hat, just a big, floppy cotton hat that can be dunked in cold water. Good luck – and welcome to the forum – it is a wonderful place of support.

    • Anonymous
      June 3, 2010 at 7:46 am

      My original reply was lost in electronic never-never land, so I am trying again.
      One thing that I have found that really helps in addition to the suggestions that you have gotten above is a baby fan that hangs on a string around my neck. I have two kinds. One of them is labelled as O2-cool and is a 3 X 5 X 0.5 inch rectangle with the direction out the upward (3 in) part. It is quiet and has AAA batteries so it can be used when doing things. The other looks like a mushroom. I will look for the manufactures and post this later. I got both of them at Walgreen’s pharmacy store and they were each about 4-6 US dollars (pretty inexpensive).
      Another suggestion is to plan outdoor activities in the early am or late evening before dark. A third is to build in rest times. If I overheat, I have to now stop totally for 15 minutes or so. Planning outdoor activies in little pieces or having a chair and book available (as well as ice water) really help.
      WithHope for a cure of these diseases

    • Anonymous
      June 3, 2010 at 6:39 pm

      I’ve CIDP, the longer term version of GBS? Which many can debate til the cows come home. BUT.
      YOU’ve gotta treat yourself as one who can dehydryate quickly and not necesserily rehydrate equally the same?
      You have to learn to achieve a balance between foods, hyrdration and dehydration. Your system isn’t working as efficiently as it could? So, you have to take either ‘defensive or pre-emptive’ actions to avoid problems!
      Fans, moisturizers and all sorts of things can ‘compensate’? But I’d lay it out to your doc to explain the complex THINGS going on with you that need special treatments! AND DO NOT LET HIM/HER FOIST YOU OFF! Get answers! I’ll guarantee you that they don’t know near as much as they ‘pretend’ – now is the time to call them on it? And thus work HARDER for you! Get on the web and search any key words you find OUT! Learn if there are connections? And if true, connect them! IF not, let your docs know? That you are digging deeper than they ever TRIED? Excuse me, docs that don’t TRY are out as far as I am concerned! Kick butt! Get the diagnosis and treatment YOU DESERVE! Second opinions are cheap! As are Thirds- They save your life! Don’t be shy. Hope and hugs.