• Anonymous
      July 23, 2010 at 10:34 am

      Does anyone have trouble being out in the sun? I’m beginning to feel like a vampire, afraid I will burn up if I’m out there too long! Can’t seem to be able to regulate my temp. My skin feels like it is on fire. I have always been an outdoors girl, and this is so difficult.

    • Anonymous
      July 23, 2010 at 11:11 am

      Yes, I do. I find it so strange, I was always outdoors. Now I get much weaker and dizzy if I am in the sun. I’ve started sitting out on the deck in the evening and enjoying the moonlight. Between that and the plasma, another vampire! 😮

    • Anonymous
      July 23, 2010 at 12:25 pm

      Every summer my neuro give all his patients his “being outside in the heat makes you worst” speech. He is 100% right. We must stay cool as it causes CIDP, auto-immune and other neurapathy illnesses to go into high gear. Plus you’re on various medications that react to excess heat.
      Today will be 98* and I’m already nauseous. My body doesn’t regular heat well at all now and so I must hide in the shadows.
      Please stay inside or where ever there is A/C with cold drink nearby for hydration. I put ice packs on my neck even while sitting inside to cool me down.

    • Anonymous
      July 23, 2010 at 7:46 pm

      But take into consideration that it deals with diabetic neuropathies. The site also deals with autonomic neuropathies-It’s not easy to get to? But very worth the while!
      If you are at the main screen? Go to ‘Diabetes in Skin Disease’ and click on there….Be very SURE to read the intro and abstract before going to click on any particulars… While you mite not have diabetes? The way the nerves are damaged works pretty-much the same. Therefore? You must care for your SKIN as IF it’s diabetic. [BTW? I’ve no hint of diabetes, yet-knock wood quickly, please?] It was eye-opening for me, but also sort of confirmed what I was ‘feeling’ or, ‘not-feeling’? Some of the pics are NOT fun? But they are enlightening in terms of when one has delayed treatments till the beyond UH-OH! stages.
      Most interesting to me was the relation of the nerve..brain..lymphatic system triggers. Which obviously are messed up by our neuropathies. Thus, the swelling [plus lack of proper exercising] and normal stimulation of the lymph circulation systems -it can’t work, cause it’s not getting the right ‘signals’. THAT is a whole other mystery that most docs don’t even comprehend.
      Hope this is useful to you and others.. Stop scratching? Start slathering!

    • Anonymous
      July 23, 2010 at 7:54 pm

      That lymphatic system, also tells you when to sweat or not. SOOOO…when the signals are scrambled up? You get knocked flat if you aren’t careful. Why? Because YOU simply don’t know.
      Tote a gatorade where-ever you go for such times. AND bring a bottle or toter of water to sip on, even tho you don’t think you need it. You likely will.
      It’s been almost 100 degrees here lately and will get over that tomorrow! I truly hate being self-imposed ‘confined’. It’s self preservation. And I respect all kids and parents who have CIDP who go out in THIS!
      Face it? We cannot regulate heat as ‘normal’ people do! So, we adjust. IF we must be ‘vampirish’? So be it.
      Hope this all helps. At least you can get out! That is a small blessing in and of itself.

    • Anonymous
      July 23, 2010 at 8:35 pm

      Interesting site homeagain. Thanks for posting it.

      I was thinking that my continual sweating this summer and heat stroke on July 3rd was related to being female and 51! I had in my own head explored the option that neuropathy could be involved due to decrease circulation and the inability to move wastes out of the skin in other more effective ways, like by lymph flow.

      It’s reassuring to hear from others abt this as I was beginning to think I was crazy!

    • Anonymous
      July 24, 2010 at 9:57 pm

      I get worse in the heat as well. I try to take it easy and stay cool. You aren’t crazy

    • July 25, 2010 at 12:37 am

      I live in the desert and make sure to stay hydrated even in the air conditioning. Outside my body tells me when to rest and sometimes I put an ice pack on the back of my neck when I go on a walk. I am more sensitive now because of CIDP medications and age.
      I love to sun by the pool, but depending on the time of day or breeze conditions I can only take so much and then head for the shade or air conditioning.

    • Anonymous
      July 28, 2010 at 7:56 am

      Every summer I dread the heat and know it will make me feel tired.My summer job involves being outside alot. Well this summer an opening came up to work overnight shift inside. I thought I would try it and see how I feel. I am amazed, not being out in the heat during the day,how good I feel. I also put a small window a/c unit in my bedroom eventhough the house has central air, but I like to keep the bedroom cooler especially sleeping during the day and it helps with the noise. SO yes…heat does affect me since my diagnosis of CIDP.

    • August 6, 2010 at 11:12 pm

      Our daughter’s CIDP is worse in the Texas heat also. She is also unable to feel temperatures. We do the best that we can to watch her and make sure she dresses for the outdoor temperatures.

    • Anonymous
      August 7, 2010 at 8:38 pm

      I don’t when it’s needed, do when it’s not! Totally perverse.
      Glad you liked that site, it chock full of goodies and heaps of pictures [some of them are scary for sure] of all sorts of skin issues.
      By being aware tho? We can avoid the worst of the worst? The more we know and understand, or try to, the better we can beat this all.
      Anyhow, I always have some ‘sippers’ w/me in the car, for when I mite need them. Should you feel a ‘grumpy type headache’ coming on? Sip some, or get a lemonade or other cold drink to help balance things out. The ‘grumps’ can come on suddenly, and it’s better to drink a warm liquid, than none at all. WE can’t TELL when we are going off keel, so we have to take precautions – just in case.
      Hoping everyone has or is going to get a weather break soon! I like warm? But not too too warm? This from one who has toes that turn BLUE when the temp is below 73!
      Everyone have a great weekend!

    • Anonymous
      August 8, 2010 at 8:23 am

      When I go out into the heat with shortpants and t-shirt I have to wear knee socks to keep my feet warm. But the heat kills me trying to breathe.

    • Anonymous
      August 8, 2010 at 8:53 am

      I also have a problem regulating my temp..i always feel so hot..and even during the Michigan Winter Weather i am still in a pair of shorts and a light sweatshirt. The only part of me that seems to get outrageously cold are my feet, it can take a few hours for them to get warmed up. The Reason why we have these problems is because the cidp has reached our autonomic nervous system, this is where our sensory and temperature regulation is affected at. my specialist said it should get better as we get better. The reason why we feel so weak is because we all get dehydrated really fast because of the cidp and bc we are so hot and sweating more. I always bring water with me everywhere, i also have a camel pack which is a backpack where you can hold water at. So the only thing that may help with the temperature is staying hydrated. I hope this helps everyone out.