cold and pain movement

    • Anonymous
      December 18, 2006 at 12:17 am

      I can not seem to stand the cold now.. It makes my pain worse. anybody else? also had IVIG 3 months ago could barely walk at the time , walking is fine now , I get tired easy and of course the pain in my lower calfs and feet are always there. Now my hands , chest and shoulders are really going bad my hands cramp up and like glue together and I take the gabepentin and it helps but now it seems to have moved to my upper body . Is this happening to anyone else? Seeing my neuro in early Jan…

    • Anonymous
      December 19, 2006 at 10:05 pm

      I don’t have pain- except occassional zaps here and there.

      However, last winter was awful. If my hands, feet, thighs, face got cold, I itched like no other. I would occassionally break into hives. Benadryl kept the itching sort of at bay. However, warming up did the most help. The doctors said this was coincidence and non-related to CIDP. I believe they are wrong, since I never had problems prior to being diagnosed.

      Since I have been on a regular regiment of IVIG, this winter seems to be much better; however, it hasn’t gotten really cold so far this winter.

      I also used a heating pad, but had to be careful since I couldn’t feel it as well with my numbness.

      Do you believe getting a more regular dosage of IvIG would help?

      Good luck!

    • Anonymous
      December 20, 2006 at 12:07 am

      I’m just the opposite. I can stand the “cool” [it really doesn’t get cold in the Panhandle of Florida], but I can’t stand the heat and humidity. That really takes it out of me.

      Just goes to show you that every CIDP case is unique.

      Hopefully this Christmas and the New Year will be better for you. 🙂

    • Anonymous
      December 20, 2006 at 12:18 am

      yes-always cold, but i live in Texas so it is not as cold as Norb and other people but sometimes it doesn’t matter how cold it is outside, i am cold most of the time inside. i have an electric throw in every room! i am living in my sweats, and sometime sleep in them. for a long time i was trying to find the electrical boot warmers but gave up. i read that some people here have the electric heating mattress pads. You are not alone. i avoid going out after 5:00 when the sun starts going down. the colder i am the more pain i feel, especially in my legs and feet.i don’t know if this is related to our cidp or not but i was always hot flashing prior to. try doing those things you love to do with the family, it seems that is what my family requested, just try, i never know if i can do something or go somewhere unless i try!

    • Anonymous
      December 20, 2006 at 12:28 am

      Nate is always cold now. He can’t get warm very well at all.
      It has been down to 32 here at night lately and in the 60’s during the day.
      Nate says his hands are hurting much more than usual now too. Neurontin is only helping a little now.
      He doesn’t want to use the computer or play video games it hurts so much.
      He ordered new gloves for wheeling and they seem to keep his hands warmer, but only if he wears them all the time.
      He lives in sweats and socks too, even at night with his big comforter on.
      It’s supposed to warm up a little for the weekend. Hopefully it will help.

      Nate/ GBS 1-06
      Hospitalized 9 1/2 mos
      Home 9-30-06

    • Anonymous
      December 29, 2006 at 12:46 am


      Cold gets me worse each winter. Heat gets me worse each summer. I am needing “middle” more and more.

      In my case, I think it is a lack of sensory response. My extremeties don’t “feel” the cold, and therefore don’t transmit the info to the brain. Brain then does not send extra warming blood to keep me warm. And I get colder. The cycle seems to start around 62 degrees, maybe 63. By the time it gets down to the lower 50’s I have gloves on.

      People look at me funny when I have gloves on at 55 or 56 degrees. But if I don’t. I get really cold, and it is painfully cold. Which brings in the added pain point. When you are shivering and cold, your pain levels go up.

      Good luck

      Dick S

    • Anonymous
      December 30, 2006 at 1:28 pm

      Cold weather and damp overcast days really get to me. Chills and tingling, especially in the lower extremities. Go around the house this time of year with sweatshirt and flannel lined pants.


    • Anonymous
      December 30, 2006 at 3:02 pm


      You might try looking for the boot warmers in stores or catalogs that specialize in skiing, or hunting/fishing, or camping/ hiking equipment. There are also electric heated socks. They are battery operated, and have padded heating wires running under the socks.

      Another thing that really works is a kind of powder that you sprinkle into the bottoms of your socks. I believe the powder is mostly capsaisin (sp)- a type of pepper. This makes the small blood vessels in your feet dialate, allowing the blood to warm them more efficiently. Sounds strange, but it really works well. One application lasts about 4-6 hours. I believe this stuff is called Hot Feet.

      Something else good to know about are portable hand warmers. These are small bags filled with iron filings. When you open the plastic covering over the pouch which allows air to mix with the iron filings. You put one in the palm of each mitten. The iron starts to oxidize immediately. This generates an unbelivable amount of heat very quickly. Each pouch lasts for about 3 hours.

      I’ve used all of the above when I used to do a lot of skiing, and they work quite well. No reason you couldn’t use them indoors too.

      And still one more thing available is a handwarmer that are like a palm size metal “box” that heats up. You slip one into it’s small felt bag and keep one in each pocket. I believe they run on lighter fluid – I haven’t tried this one myself, so don’t know how well it works, but they’ve been around for years.

      Hope this helps keep you warm and cozy! Happy New Year!


    • Anonymous
      December 30, 2006 at 8:14 pm

      I have a suspicion that not only the differences in CIDP symptoms but also the basic physiological differences between each of us play a role in how we react to temperature. For example, Kyle, my 4 year old nephew was visiting here for a couple of days. Yesterday, we took him outside to play in the snow. He stuck his hands in the snow and had a fit. He came inside crying for his mommy. He grew up and lives in Houston, Texas, and never experienced real snow. On the other hand, Sydney, our 2 year old granddaughter, has no problems at all playing outdoors in the snow. She lives in Denver where it gets fairly cold just like here.

      Superimpose on that differences in CIDP and you have the different stories reported by different members,

      My 2 cents worth.

    • Anonymous
      December 31, 2006 at 1:57 am


      I grew up in mid state PA. Played in the snow all the time. I liked the cold. Don’t get me wrong, I wasn’t the crazy guy who went out to the football game without a shirt on in the snow and ice. After college I moved to Charleston SC and lived there for several summers. If there is a lesser tolerance I would have, it would be for heat, I suppose.

      But this problem with cold is a real pain in the butt. I really have to pay attention to keeping myself warm in the 62 degree range. It isn’t really cold enough for you to feel “cold”, but the next thing I know, my hands are almost “blue cold”. Really cold to the touch, and painful to me.

      By the time the temperature gets down to the lower 50’s it is cooler for everyone and we all bundle up a bit more. and pay attention to staying warm.

      I do agree that we all have different frames of reference, and different tolerances. But CIDP changed my ability to deal with temperature change by damaging sensory nerves. I just don’t feel hot and cold like I used to.

      It is also true that sensory damage isn’t always first in CIDP. In my case I was almost totally sensory loss for the first 9 or 10 years I had CIDP.

      Oh well…

      Have a great day

      Dick S

    • Anonymous
      December 31, 2006 at 10:45 am

      sounds like my theory doesn’t hold water. I can’t imagine what it must be like for you and others with the same sensitivity to cold. I grew up in a climate similar to the one in PA, actually lived in Pittsburgh for 12 years as a young adult. The only problem I have is lowered sensitivity to both hot and cold in my feet, somewhat in my fingers. Sensitivity to touch is completely gone in my feet. There is no pain. But then I have this variant of CIDP and – I assume – the myelin gets attacked somewhat differently from many others.

      Happy New Year

    • Anonymous
      January 1, 2007 at 12:23 am

      Count me on the hot team. I just cannot take any temperture over about 80 F. The cold does not seem to bother me. In fact, since I don’t feel my feet much any more, I can walk on frozen ground and only barely feel the coolness. :confused:

      Have a great New Year,


    • Anonymous
      January 1, 2007 at 8:17 pm

      [QUOTE=peteacher1]I don’t have pain- except occassional zaps here and there.

      However, last winter was awful. If my hands, feet, thighs, face got cold, I itched like no other. I would occassionally break into hives. Benadryl kept the itching sort of at bay. However, warming up did the most help. The doctors said this was coincidence and non-related to CIDP. I believe they are wrong,1[/QUOTE]

      I’m here because of my mother in law but understand this. I suffer from horrible Rheumatoid Arthritis and go into a horrible flair with the cold as well as chils, hot and cold sweats, shakes etc. unless i have ultram.

      They too dont’ think it is RA related, but it never started until I got it and it started at the exact same time.

    • Anonymous
      January 1, 2007 at 9:18 pm

      Dear overthehill,
      ( I am too ). I am responding to the fact that this disease has moved up on my body also. My sholders are my weak spot. If I do anything much my strength is sapped out from my sholders. The I V I G has kept my legs strong The E M G test was good. However, now and then I feel wobbly , it is a balance problem. I do have lots of neuropathy in my feet as you do, however, I am the opposite of you with the heat and cold. You are the first person I have heard say that the upper body is affected. The Neuro says I have M S also, and I am beginning to beleive it. The I V I G and prednisone are just not holding me as they did in the beginning (2003). I am tired a lot, and I putts a lot and drive myself crazy ! I too will see the neuro in Jan, and a second opinion at the end of the month. Keep us posted. Blessings.
      Mary Ann