Summer heat

    • Anonymous
      May 30, 2007 at 10:07 am

      Hi, Im having a rough time with the heat. This is my first summer with GBS, Rash, more fatigue than usual, shortness of breath, all cloged up. NYC has never been the ideal place in summer but I dont seem to be handling it well. The glare from the sun drives me nuts, Just curious how you do, has the GBS changed the way the summer heat affects you??????Keep cool …..Gene

    • Anonymous
      May 30, 2007 at 12:47 pm

      Hi Gene,

      How are you doing?

      I love when the weather gets warmer but don’t like when it’s humid and sticky out side. Although I don’t complain because I don’t like when it’s cold! ha!ha!

      Wearing a pair of good uv protecting sun glasses certainly helps with the sun glare. I never leave home with out them. I had Miller Fisher variant GBS so my eyes were effected a lot and still are today.

      Bright lights still bother me a lot.

      I tend to get skin rashes from time to time, they come on if I’m too hot, sometimes my allergies will bring them on or if I get stressed out it can happen. So I’m either taking a allergy pill along with my other medications.
      I also use Vaseline Intensive care cream it’s called Advanced Healing also fragrance-free skin protection lotion. I know there is a calming cream it’s over the counter just don’t know the name of it. That can work too.

      If the rashes get worse or just get annoying you may want to see a skin care specialist. Everyone is different.

      Summer doesn’t have to be unbarable, just have to find ways to beat the heat and still have fun!!
      Swimming is just one of them even if you can’t move around much it’s still nice to get into the water and cool off at the same time,LOL!
      Take care! Stay cool! ๐Ÿ™‚

    • Anonymous
      May 30, 2007 at 1:57 pm

      I have CIDP, but the heat definately affects me. Even an overly-hot room can make me feel wiped out. Also, the air quality can be worse in summer (especially in or near a city), which can leave me short(er) of breath. Thank goodness for air conditioning!


    • Anonymous
      May 30, 2007 at 2:53 pm


      rest more, it’ll help. i still use a flower spray bottle to cool me down when going out in the summer sun. i know in ny it can also be the humidity. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      May 30, 2007 at 2:54 pm

      Frank’s only pleasure was sitting in the sun, it never seemed to bother him like some others with GBS/CIDP. It was the winter that wrecked havoc on his body.

    • Anonymous
      May 30, 2007 at 5:27 pm

      Have you ever heard of a mist fan? We are ordering the kit for about $50, including shipping from the Northern Tool Company. I haven’t shopped around, you may be able to get cheaper.

      It’s a hose that hooks to a regular fan and to a regular water hose. It is SUPPOSED to bring the heat down up to 25 degrees.

      We try to keep Dell inside if the temp is above 80 degrees. I am excited about getting this misting thing, I’m hoping it will help and he can go outside during the summer.

      We live in MS, it will be in the 90’s real soon.


    • Anonymous
      May 30, 2007 at 5:49 pm

      Hi Gene I work and since I got CIDP the heat wipes me out. It doesn’t take much for me to get tired faster. I have less energy and with the heat and humidity I get hot so fast I need a fan in front of me to cool me down. My face gets red like a tomato. Also depending on the speed of the production line that doesn’t help. The humidity is also a killer for me. Last year at work one day I left at lunch time I thought I was going to pass out. With the humidity it was around 120F. I felt sick the rest of the afternoon.
      Any exertion tires me out and with the heat it makes me feel sick.

      I have a hard time to do my job now. I am not looking forward to this summer and the heat. ๐Ÿ™ ๐Ÿ™ ๐Ÿ™


    • Anonymous
      May 30, 2007 at 11:06 pm

      I am another one that has a hard time with heat. Winter and Summer. People in the Winter that had the heat turned up to high and had a wood stove blasting! Summer on the patio I just sit in the shade and look around at what has to be done! No energy to speak of with the fatigue and then the heat makes me fell like I am going to burst! I take a cold shower after I take a warm one. Never mind even going into the bathroom after someone has taken a hot shower! But I am getting stronger! Muscle tone is coming back quickly that makes me so happy it over rides the hot days!

    • Anonymous
      May 30, 2007 at 11:32 pm

      I have CIDP and summer is not my favorite time of the year. The heat and humidity seem to suck the energy right out of me. Thank goodness for air conditioning. I try to limit outside activities to early in the morning or at or after dusk.

      I can remember what NYC was like during the summer. ๐Ÿ™

    • Anonymous
      May 31, 2007 at 1:34 am

      Sue or anyone –

      Have you ever tried one of those “cool neck ties” with the polymer crystals in them for helping with the heat? My family has used them in the desert and when camping for years, and they are pretty amazing in how much they help keep you cooler.

      In the last few years there are tons of places that either sell them online, or that offer instructions for how to make them, as many people make them and send them to troops in Iraq. A google search of “cool neck ties” should bring quite a few good results for more info about them.

      The only problem I’ve had with them is when I’m in a humid area, you have to make sure you don’t store them in a plastic bag or anything like that, or they’ll mold instead of drying out between uses.

    • Anonymous
      May 31, 2007 at 7:00 am

      Chris are you talking about the thing that goes in the freezer when not in use and you put that around your neck when you need it. I used to have on like that but it was always in a dark color that stained my work cloths it was provided by the company. Also this year I was diagnosed with Raynaud’s disease. Where the cold causes me to have an attack of Raynaud’s where the circulation is not working properly in my body.

      I was in a room yesterday for a meeting it was hot and somebody put the A/C on and after a while I had to put a work shirt over my T-shirt. I had gloves ready if I needed it for my hands but the meeting was almost over. But my hands were hurting when I got home.

      So I can’t win either way. ๐Ÿ™


    • Anonymous
      May 31, 2007 at 10:17 am

      Ouch Sue – that’s tough.

      The cool neck ties I’ve used don’t rely on going in the freezer. They simply absorb water into the polymer crystals, and somehow the action of the wetness laying against your neck (against the arteries or veins there, I guess?), along with the slow evaporation of the water, helps to cool down your body. If you refrigerate the ties, they are simply colder for a while… I guess the fabric used to make them could bleed if it wasn’t a good dye – I’ve never had that problem with ones I’ve had.

      But it sounds like these wouldn’t help you with your conflicting heat/cold issues. Ugh, sounds like a real pain…

    • Anonymous
      May 31, 2007 at 1:27 pm

      Thanks all, if it wasnt for this site we would think we were the only people on this planet with all this weird stuff going on. 90 degrees today AC and a good book. I salute you all…….Keeeeep Koooool……..Gene

    • Anonymous
      May 31, 2007 at 1:43 pm


      You can find me outside in the spring and fall. Otherwise, I stay out of the elements. It’s still spring here in OKC and I have actually attended a couple of outdoor functions. I hear we are supposed to get in the 90’s next week and I will be hibernating then.

      Keeping Kool!

    • Anonymous
      May 31, 2007 at 4:45 pm

      The cool neck ties are great! I had a couple, but don’t know what became of them. I used them when camping – kept one in a zip bag with clean water in the cooler so that it was nice and chilled. Really made dealing with the heat much easier!

    • Anonymous
      May 31, 2007 at 9:36 pm

      Last year AVON had the necktie and I should gotten a few when they went on sale”” My neuro told me last week to be VERY careful of the heat and suggested a cooling vest. I have a brochure somewhere with items/prices. He even said I should try ice packs under my arms.
      Before I was diagnosed I spent a hot summer day watching a child’s soccer game and then a month total bedrest. I collapsed completely.
      It was 90* today and we’re having water shortages due to lack of rain.

    • Anonymous
      June 1, 2007 at 7:04 am

      Chris yes it is a pain. I have gloves with me when I go to the grocery stores in case I need it. Also in a factory with temperatures of 90F+ kills me especially with the fast pace of the production line.


    • Anonymous
      June 1, 2007 at 7:50 pm

      Hi Gene,
      I have CIDP and hot weather always makes me weak. I live in Australia so in the Summer I find I can’t do as much physical activity (which isn’t that much anyway) as in winter. Though, the cold seems to cause my sensory problems (tingling etc) to play up – I can’t win can I? LOL
      Best wishes and keep cool.

    • Anonymous
      June 2, 2007 at 10:53 am

      The heat affects me anormously.Same thing happens. I get very weak, winded and extremely fatigue, I perspire like a Sring rain. I keep my house very cold at all times, includung winter. Needless to say my friends don’t get it. They don’t like visiting much because of the coolness. I wish it was 65 with a cool breeze year round. I think my residuals would really improve. Thanks for posting. xoxoxoxoox Roxie

    • Anonymous
      June 2, 2007 at 11:05 am

      Hey guys. Summer is a killer for me. That used to be my favorite time of year but now it seems like as soon as it hit’s 70 I can’t hardly breath and it just wipes me out. I hate it. I used to hate winter but now I can tolerate it better. I love the ocean and I hope if I ever have a chance to go back that I will be able to handle it. I think the breeze from the ocean will help me survive the heat. I know I don’t feel temperatures like other people do anymore but hot to them is like on fire to me…yuk.


    • Anonymous
      June 2, 2007 at 6:03 pm

      Hello All You Hot People….

      It is a whole new meaning, isn’t it?!!! Good to read this post….we have long
      winters in Minnesota and cool Springs, so when it begins to get humid and the
      heat goes up, I too wilt. I find the days just go by and I am in some kind of fog. AC or not, the fog settles in.

      Those neck ties you are talking about are at [url][/url] and called
      Misty Mate Artic Cool Ties…good luck!!

      Nice to be good company on hot foggy summer days.

      Blessings Maureen Boz

    • Anonymous
      June 5, 2007 at 10:35 am

      Let me correct myself…the wraps are ‘Cool Downz” water activated
      wraps…. 6 for $18.68 on

      Wishing you a refreshing summer.

      Blessings Maureen Boz

    • Anonymous
      June 5, 2007 at 1:45 pm

      My husband is going to try to make a misting fan. If it is successfull, I’ll write and give you the directions.