Loss of Temperature Sensation

    • Anonymous
      October 26, 2006 at 9:38 am

      Hi All:

      Does anyone else have loss of temperture sensation in their feet? My feet just don’t get cold anymore. I’ve noticed this for a year and a half.

      I’m doing very well, but I still have to concentrate when I’m walking. In a moment of inattention, I went over on my right foot over 3 weeks ago and sprained my ankle and broke my little toe. I was wearing sandals until last week so I could fit a tensor bandage in them and everybody was wondering why my feet weren’t freezing. This morning, it is 1 degree Celsius so that’s pert near freezing. I’m worried about winter coming and freezing my feet without knowing it. Anybody else?

      Cheers and hugs all around

      Waterloo, ON, Canada

    • Anonymous
      October 26, 2006 at 10:11 am

      Yup! I got into the tub, just last nite, and couldn’t feel the water with my right foot. Or, I’ll reach into my purse for some change (which I already know is there) and can’t ‘find’ any ~ until I get home and ‘dump’ my purse out. My biggest problem is being cold when the house, store, etc. is perfectly warm! Then it takes a hot bath or shower to ‘warm me up’. I can always tell when the room is hot by seeing the sweat on my husband’s face ๐Ÿ˜ฎ
      Dress appropriately for the temp by watching other people and check your feet regularily for anything unusual (diabetics have to do that). Good luck:)

    • Anonymous
      October 26, 2006 at 11:23 am

      Val, I have no sensation to touch in my feet but I do feel it if I step on an object or a surface that is cold or hot. But I don’t know it when my feet are cold. I guess I only feel temperature diffferences between other objects and my feet.

    • Anonymous
      October 26, 2006 at 11:49 am

      I also have limited sensation in my feet. To me they always feel like they are not there at all. I have to check my feet regularly to make sure I don’t burn them stepping into a bathtub/shower or to make sure I don’t freeze. My hands are not as bad as my feet but I also have to be careful with them. I ask others if it is cold/warm in the room so I know how to dress appropriately. My biggest problem is shoes…while I don’t have good feeling in my feet, I still get blisters/calluses if my shoes don’t fit right. It is difficult for me to find shoes that “feel good”, are appropriate for the weather, etc. Good thing I live in the desert and can wear flip-flops most of the time.

    • October 26, 2006 at 12:32 pm

      Jules- I’m jealous! My feet are always cold and getting them to warm up consists of soaking them in hot water. I think I would prefer them to be warm! My husband says between my feet and hands, he knows what the cold touch of death feels like, LOL

    • Anonymous
      October 26, 2006 at 1:53 pm

      My toes get numb quite often, especially when I’m exercising…but I notice loss of feeling mostly when I give myself a b12 shot in the thing muscle and barely feel it. Sometimes the shot hits a nerve and oh my goodness I about fall over, other times I feel nothing. I also notice my husand has to push down really hard when he massages my back so I can feel it and get relief from flu like symptoms in my muscles. It’s all a pain…but I try to keep positive. There was a time I could hardly move without assistance…at least I’m past that part of the disease.

    • Anonymous
      October 26, 2006 at 2:36 pm

      Dear Val,

      I’ve been thinking about the loss of temp. sensation you have. Just curious …. when you saw Dr. Hahn, was that something you mentioned to her, or was it just the lack of sensation? Im sure you remember all the threads and posts that have to do with having very cold feet etc. I havent actually seen any posts about not feeling temperature – but as usual I could be very wrong, I was wondering if that is one of the (possibly many) reasons she said its another neuropathy? (that is if you did mention it) Does that make sense?

      P.S. I need another Christmas photo please …. ๐Ÿ˜€

    • Anonymous
      October 26, 2006 at 3:26 pm

      Hi, Gang.

      I’ve had problems with temperatures for a long time. An interesting addition this year has been that I can’t tell whether a fan or wind blowing on me, or even air temperature, is warm or cool. Even on days when it’s been very hot (at least for London), and I’ve been sweating, I haven’t been able to tell by the feel on my skin that it’s hot. Can’t wait to see what winter holds.

      Such a fun disorder.


    • Anonymous
      October 26, 2006 at 3:51 pm

      I am consistantly surprised at the many different ways this condition presents itself. I feel temperature but for a long time when I would wash my hands in room temp. water it would feel like ice water. Other sensations are a surprise to me. I do not feel touch in my feet or legs but I do feel exagerated pain like when my grand son climbs on my legs or last night I stepped on a pair of glasses and would have thought it was broken glass. No cut or injury just the pain.

    • Anonymous
      October 26, 2006 at 4:52 pm

      Hi Val

      One more report: I haven’t lost hot/cold sensations yet in my hands or feet.

      If your foot is unstable, maybe its time to get a lightweight brace? I just got a brace called an SMO that prevents my foot from rolling outward (its partially paralyzed) and I love it! Wasn’t cheap at $1k/ft, but, heck, in comparison to IVIG, it nothing! Shoe selection is a bit limited, but there are attractive, accomodating styles with NAOT, Finn, Drew…

    • Anonymous
      October 26, 2006 at 5:22 pm


      I lost temperature sensation in my finger tips. It was one of the first things to go in my body with the GBS. Everything else in my body has nearly fully recovered. Unfortunatly many people I have talked to that have also lost sensation in the finger tips, haven’t regained it. I think that I have permanent loss.

      <333 Angee

    • Anonymous
      October 26, 2006 at 7:31 pm

      Hi Val, nice to see you are around again. missed ya!
      i can’t tell if i have cold or hot feet, i can’t feel temps on most of my body, there are small areas here and there but nothing that i can use to feel temps. this may sound strange but i can tell if i’m hot by the feeling in my eyes. my inner core tells me i’m cold by causing severe burning bone pain that won’t go away until i’ve been in a hot shower and wrapped in blankets for a few hours-until i feel the heat in my eyes. my small fibers are messed up from all the events over the last 14 months, the feeling in my feet, legs, fingers, hands, arms, trunk and head are all kind of like sleeping and numb feeling instead of normal sensative feeling. there are times when i feel pain like after i cut myself with a knife or stab my finger with a pin that all i feel is a very slight hint of pain then nothing. it is kinda nice not having that pain to deal with on top of the nerve pain, but it can be dangerous also-have to do a body check every night just to make sure i don’t have sores or booboos that i didn’t feel. before i had my firsy event last year, i always had cold feet because of bad cirulation and other health issues, comparing before gbs to post gbs i gladly take the post gbs feeling and no feeling. i rather not feel the cold-to me cold feels painful. i also look at it as now i can stay out in the snow and play with my kids longer since i can’t feel the cold until some one feels my arms, hands, legs and feet to tell me if they are cold or not. as long as i dress like i use to prior to gbs then i know i’ll be ok not feeling temps.:)

    • Anonymous
      October 27, 2006 at 12:43 pm

      Cheryl, you mentioned cold feet due to poor circulation. Did your doc ever check your feet for circulation.

      I find it strange that I would have cold feet most of the time but according to my neuro and also an internist just last month, circulation in my feet is fine. That doesn’t make sense to me.

    • Anonymous
      October 27, 2006 at 2:47 pm

      Before I went into remission, I used to get bouts of “snow-ball” hands. ๐Ÿ˜ฎ One or both could suddenly deep-freeze, they were not cold to the touch – on the outside, that is – but they felt extremely cold “under the skin”. I used to tuck them in folds of my sweather while watching TV, and it made them a little less cold, but I really couldn’t do anything about it, so they didn’t “thaw” until my nerves got tired of playing “The Cold Game”. I don’t remember when it happened for the last time, but it’s quite a while ago now.

    • Anonymous
      October 28, 2006 at 11:38 am

      Hey Norb ~ your circulation is probably just fine. It’s those pesky damaged nerves ๐Ÿ˜ฎ They are no longer speaking the “correct” language and give us crazy messages all the time. I only wish that the pain messages weren’t so real . . .:(

    • Anonymous
      October 28, 2006 at 2:05 pm

      [QUOTE=Judi Z]Hey Norb ~ your circulation is probably just fine. It’s those pesky damaged nerves ๐Ÿ˜ฎ They are no longer speaking the “correct” language and give us crazy messages all the time. I only wish that the pain messages weren’t so real . . .:([/QUOTE]

      Hi Judi, I don’t think it’s just messages. When I touch my feet with my hands they are actually ice cold. That’s the part I don’t understand since the docs are telling me the circulation is OK. It used to be that my wife had cold feet but I always was the “hot one” so at night she stuck her feet under my body to warm up. Now I am the one.

    • Anonymous
      October 28, 2006 at 2:57 pm

      Hmm, good observation, Norb. I forgot that part (foggy brain :p ) We are such complex creatures! Maybe when DocDavid is back, he’ll have an explaination.

    • Anonymous
      October 29, 2006 at 1:36 am

      hi norb. sooo you use to be the “hot one” uuhh-i’m sure carol thinks you’re still the “Hot one”!;)
      yes i have blood in my feet, but they still get white, purple and sometimes gray/blue when i’m standing on them. strange-yeah but thats just me. i use to have to wear thigh high stockings for the circulation problem-my legs are soo long i have pooling in them when i stand which causes a sudden drop in bp and i faint. i can tell when i’m about to faint and see colors in my vision, so i can stop it before i actually faint. its called neurocardiogenic syncope. since gbs i haven’t had the syncope feeling, which is good, well i should say i have it very occasionally but not to the point of seeing colors and fainting-just have very minor lightheadedness. i do have a problem with decreased pulses in my feet now, which is new with gbs stuff.
      hows that little sweetpea doin? i love the last pic you posted. ๐Ÿ™‚

    • Anonymous
      October 30, 2006 at 10:00 am

      Hi Everybody:

      Wow, so many people are showing the same signs that I have, eg. numbness in hands and feet (but you can really feel it when you step on something). Funny it’s just my feet that have lost temperature sensation. My hands are fine, although they feel prickly and sore like my feet. The loss of temp. sensation goes up to my knees. I better not get lost in any snow drifts, lol. We had a blizzard here yesterday, but it didn’t stay on the ground.


      I don’t think I mentioned the temp. sensation loss to Dr. Hahn when I saw her. As you know, she diagnosed post infection neuropathy from the ears, nose and throat infection I had April 2005. From everything that I have read, my symptoms sure look to me like CIDP. Actually, what’s the difference???


    • Anonymous
      October 30, 2006 at 1:31 pm

      I have the same problem too. both with Feet and hands. I almost always feel like I am freezing but my husband will touch my hands or feet and say they dont feel cold. It is really weird. I have a TON of the foggy brain too.:confused:

    • Anonymous
      October 31, 2006 at 6:31 am

      All I ever noticed was the numbness and feeling of novocaine like feeling all over my body…especially in hands and feet…

      Then my current Neurologist some years ago did some kind of “sweat” test on my legs using a very low electical charge…and this showed that I was not sweating normally and I think that this confirmed the affect of my CIDP on other things…but this seemed minor in view of all the other symptoms, like breathing and incontinence….but I understand that this is important as some folks have been burnt in showers with the water too hot and then my wife reminded me of how hot the water was when i shaved and why was my face all red….I felt nothing…but HELLO….I discovered I was doing bad things with too hot a water on my face! Not good.


    • Anonymous
      November 5, 2006 at 1:36 pm


      I had GBS and had areas of my body that didn’t feel temperature, but did feel exadurated pain response.

      For example, I was sleeping on a heating pad to help relieve the intense pain from GBS, and accidentally burned myself. The heating pad was turned up very high and I was sleeping on my side with the pad below my thigh. I have an area on my thigh that doesn’t feel temperature, so I was unaware that I had burned myself until I felt intense itching sensation there. I reached down and felt a large blister that had formed on my skin due to the heat. The burn was bad enough that a scar remains there.

      I also have an oval shaped area around each knee where the skin feels “numb” and like pins and needles. I can’t feel heat or cold sensations in these areas.

      Although I couldn’t feel temperature, or the sensation of touch when I put my hands on these areas, when I would I kneel, it hurt intensely. This has improved over time. For over a year, even kneeling on carpet felt like kneeling on broken glass. Now, it’s still painful to kneel, but bearable, and I do feel touch and temperature somewhat.

      This a very weird disease.