AnonymousNovember 15, 2006 at 5:41 pm
GBS can effect the autonomic nervous system and the nerves that control body temperature are part of this system. It’s not uncommon to feel hot or cold, regardless of actual room temperature. This problem, like most residuals usually lessens or goes away with time, as the nerves heal.
Patience – it’s so hard to learn, especially for children.
Best wishes for Nate’s quick recovery,
AnonymousNovember 15, 2006 at 6:50 pm
Sometimes I would cry from the bone-chilling cold! The only thing that would ever help, temporarily, was a ‘hot’ bath/soak. We wouldn’t stay overnite at other’s homes because often I would need 2 or more baths thoughout the nite. Now, thankfully, usually a hot shower will do the trick. But, I still have to check the water temp ~ we keep a hot tub thermometer near by. I often can’t “feel the heat” until it’s close to 115* 😮 There is no way to explain this feeling of cold ~ it’s an experience! So when Nate says he is cold, believe him and suggest a bath. Just putting on extra clothes or another blanket wouldn’t help me. I am nearly 12 years post, and I don’t suffer as often (it was definitely suffering for me . . .). Remember, each body has it’s own time table for the healing process. hugs to Nate 🙂
AnonymousNovember 15, 2006 at 7:21 pm
Nate gets cold really easily. I have at his suggestion left a jacket in the car to keep there.
That way if he gets cold while we are shopping or driving, its already in the car.
He can’t get in an out of a bathtub yet due to very weak legs, and being a big guy doesn’t help.
I think I know now why he likes lonnnnng showers.
The warm water feels so good and warms him up for awhile.
He wears sweat pants most of the time unless its real hot, like 85.
Not only are they warm but very comfy and soft for him. He even sleeps in them and socks along with a really warm plaid blanket!
He still has loss of sensation in his legs and feet so keeping them warm is really important to him.
They even feel cold to my touch, so I guess the nervous system isn’t keeping them warm yet like his arms are now.
Whenever he is strong enough to get in and out of a bathtub, he will love mine. Its a big oval one with lots of room to soak.
Thanks for the suggestion.
November 16, 2006 at 9:41 am
I too have been very cold lately since summer is gone. It can be 60-70 and I feel as if I am frozen. I often wear 2 pair of thick socks, a pair of sweats, a long sleeved shirt and a down jacket around the house and I too live in so cal so ya know it hasnt been very cold. A hot shower for me means as hot as it gets…and sometimes even then it isnt hot enough. I sleep with a heating pad that shuts off automatically (which is irritating while I am still awake). I have also noticed that when I sit I wont let my soles touch the ground, only my heels because if I am barefoot the ground is soooo cold to me (this is when I go outside for a smoke). Then for some reason my body temp will switch and I will feel as if I am going to spontaneously combust. I wouldnt be surprised if you could see actual steam coming off of me. I dont sweat though, just feel as if I am on fire all over. During the night however, I often go thru extremes of hot and cold. I will be freezing and shivering for awhile and sweating soon after and then back to freezing again. On those nights I know I will wake up feeling awful in the morning, almost like a hangover.
We want to move to Idaho eventually and I am worried I will have to dress like the kid in A Christmas Story in order to be comfortable LOL! During the summer I could only get relief from my symptoms (I was very new to all of it then) by laying with a frozen towel on my bare body and eating Otter Pops. I couldnt get cold enough it seemed…that is when I was looking forward to Idaho and making snow angels naked and wearing shorts and tank tops while everyone else was shivering. HA! I cant imagine doing any of that now.
AnonymousNovember 16, 2006 at 1:46 pm
Since my ‘relapse’ in April 05, I have definitely noticed that I suffer from the type of cold you are speaking about. This fall has been even worse than last year …….. The past few months i have often sat oun the couch or crawled into bed trying to get warm, because as you say, even my bones are cold. Nothing helps. My husband came in one day and suggested I put a woolen hat on as heat excapes through the top of our heads …. naturally I laughed, but got the hat out and sat with it on, and even went to nap with it on too. It seemed to help just a little after a while – just felt funny lying in bed with a hat on, nevermind the fact that it was a little uncomfortable. Just a suggestion …… even though a warm bath is by far the best thing for me.
AnonymousNovember 17, 2006 at 12:34 pm
I also had similiar issues, I know it was much worse the first 2 years or so after I had GBS in 1995. Sometimes my feet and hands would get so cold it was physically painful to even hold a pen or stand. At one point my doctor thought I might also have Reynaud’s Syndrome, which apparently gives you very similiar effects, but they ruled it out. Eventually it did get a bit better, I would say now it mainly happens if it is very cold outside or if I happen to step in a puddle, snow, etc. It can take hours to get back to feeling “normal”.
Post-GBS, I found it also became extremely hard for me to be in a swimming pool—no matter what the temperature of the pool, it felt like I was being stabbed by a thousand tiny knives.
AnonymousNovember 17, 2006 at 5:41 pm
I’m from northern Ill. My husband says I just start warming up around the 4th of July, then August is over and I’m cold again. That’s about right. Interesting to hear how many of us suffer from the sensation of abnormal temperatures.
My salvation is our hot-tub. It’s outside and sometimes just knowing I have to drop the bathrobe in 30 degree temps makes it not so appealing.
But it is always worth it! Just to be warm again. It seems the heat also helps some of the other risiduals.
I’ve never mentioned the uncomfortable coldness to my dr. Didn’t think there was anything could be done for it. The B12 Maureenboz mentioned is interesting.
Anybody else doing this?
AnonymousNovember 18, 2006 at 11:21 pm
I think Suzanne answered that good because I will be felling hot and sweating but if you touch me I’m ice cold Im 4 years in and still nearly a quad so I live in a nursing home and they still have to give me my showers and they can’t stand how hot I like the water, and when I first get sat up I sweat terably and I fell hot but I’m cold to touch but when I do fell cold its like pins and needles and thats our problem nerve damage my first month in ICU I sweated away 47 pounds in December I felt like I was on fire but because I was tract I couldn’t convince anyone to uncover me so I sweated down to bones its slightly better now but I wasn’t DX. for three days but I’m still improving.
AnonymousNovember 19, 2006 at 12:10 pm
Initially I encountered wide swings of body temperture while in hospital -once in rehab facility it slowly subsided. Reurning home after 15 months I find that the warmer weather or home does seem to aid movement in my hands. My extremities do get much colder during the winter months.(We live in CT) .My rehab facility has a pool which is kept quite warm (92-94) and I really look forward to 3 sessions a week. My guess is that as I make more progress in activity hopefully that cold feeling will subside.
Maybe a move to sunny Ca would help!
All the best
AnonymousNovember 19, 2006 at 1:03 pm
I am in San Diego County, (I live in Oceanside).
I always had a normal body temperature, (98.6), prior to the onset of C.I.D.P.
Now my normal body temperature is 97.2 !!
I was told that because it hit my autonomic system, as well as whacking out the autoimmune system, that’s what has thrown off my body temperature.
My legs and feet are always cold. Sometimes it takes me two hours under two blankets, to finally get warm in bed. And I ALWAYS sleep with a blanket, no matter what the season.
I love taking a HOT, HOT shower, as it makes me feel warm. BUT (!!!), I must be very careful now–I can no longer take a hot shower as heat is the main aggravation of C.I.D.P., and can bring on a flair. Many times after I take a shower, I have to go and rest on the bed, as I am very weak after it. I can only take a luke warm shower. I was told to NEVER use a hot tub due to the heat aggravation. So, it is like a catch 22…I need the heat to warm up, but can’t due to the C.I.D.P.
…c’est la vie…
AnonymousNovember 22, 2006 at 5:42 pm
I think GBS definately affects our body’s temperature. I, for one can’t handle the heat. I go into a sweating coma if it is 78 degrees and become very weak. It really bites. I keep my house at 55 degrees so I guess I am pretty much the opposite of you guys. Not good for my company, LOL, but I feel likje they can always put more clothes on. xoxoxoxoxoi Roxie
AnonymousNovember 22, 2006 at 10:39 pm
Nate told me that sometimes he gets really hot but it never lasts long. He gets cold in a very short time after that.
It makes ya wonder if his body temp is trying to regulate itself or its just still messed up.
I hate to think how he will do when it gets down to 32 at night like it did last year.
We’re in a small wind protected valley here so it gets pretty cold at night.
Good thing for forced air heating.
AnonymousNovember 23, 2006 at 1:57 am
I still to this day have attacks of being cold. It can get so bad that I can’t function. I will lay there shivering in a fetal position and if I try to straighten out it makes it worse.
If I catch the attack early enough a hot bath stops it. If I wake up with one then I have to rely on the heating pad and blankets. The episodes last 15-20 minutes and it doesn’t matter what time of the year it is.
I also have a below normal temp. Instead of running 98.6, I am at 96.4. It is hard to explain that a normal low grade fever is a HIGH temp for me.
AnonymousNovember 24, 2006 at 6:01 am
I also have difficulties staying warm, as well as problems with high temperatures in summer. Here in the Netherlands November isn’t particularly cold this year, but already I have ice cold feet. I use a heated blanket and now I even have heated socks! They run on a rechargeable battery and provide a safe heating. They are an expensive purchase, but they are durable and maybe you can turn down your central heating a bit because of them. That saves a buck;). If you do a search on heated clothing on the internet I think you will get the relevant websites, or you can pm me.
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