Just wondered if anyone else has lingering trouble withstanding heat. I was out at an outdoor graduation service in hot temps today and had so much trouble. I had eaten and drank plenty of water both before and during the ceremony so I know that I was not dehydrated or had a food issue. I had the Miller Fisher Variant of GBS almost 3 years ago. Today, I had the same pain behind the eye that was hit so hard for me initially and my vision was affected. Then I just felt awful like back in the early days of this. It’s like my body can’t handle temperature regulation that well any more. I was fine before GBS with heat. I used to run and play tennis at any time during the day without trouble. I had lots of problems with heat when GBS first hit me. It’s been better but today kind of shocked me. Any experience with this?
Oh yeah. I can’t tolerate warm tempatures for nothing. I travel for work (thankfully I still can for now) and I have to carry this rediculous little fan that plugs in to my phone just to have air on my face. My kids are always complaining that it’s cold in the car, cold in the house etc. Put a jacket on! Lol
Whenever I do task such as yard work, or washing or waxing my car I quickly overheat and sweat profusely. I mean SWEAT!! So I have to sit down and rest and it takes about half an-hour for my body to start cooling down. Even if I take a cold shower and dry off, I still sweat. I notice I overheat only when I do physical work. I mean, I used to sweat when I did those chores before but nothing like how I’m sweating and overheating like it is now. For example, I washed and waxed my CRV yesterday. A task that usually would take me 2.5 hours tops, it took me twice as long because of overheating. And on top of that, I am dead tired when I finished. All I wanted to do for the rest of the day was to lie in bed with the AC going full blast.
Yes, I have heat sensitivity in my fingers. If the temperature rises above 72, my fingers know and they start burning. I overheat in general but the pain in my fingers is unbearable. If I go to the beach or the pool, I take frozen bottles of water to hang on to so I can bare the pain. Anyone else?
I just remembered what all of my therapist reminded me during my sessions…They told me to never over do it. They told me that GBS patients have to know how much is too much and know when to stop. We’re never running on a full tank of gas and that we can easily run ourselves empty; and it will take a day or two to recuperate. No wonder chores like washing and waxing my car beats the hell out of me. Even simple yard work is no longer simple. Within half-an-hour I’m sweating and exhausted. Now it makes sense.
Kim, in my early months into my GBS, I experienced exactly what you’re feeling in your hands and fingers. They felt hot, numb and being poked by a thousand needles at the same time. Then only relief was to wrap them in ice soak towels. But eventually the pain and needles subsided. I still have a very slight numbness sensation on my fingers. Wished I thought about the frozen bottle idea.
Hi Spencer,
I’m glad to hear there was an end of the pain for u. I’m diagnosed with CIDP and I’m going on my third year of pain. I can’t be out in the sun too long or I’m in severe pain. Drugs mask the pain but never completely. If anyone has any ideas, drop me a line!
Me too…took me a few sessions working outside to see the pattern.
Am 17 months from onset.
If I work outside in the SoCal hot sun for more than two hours then at the end of the day I am a zombie. No strength or energy.
Next day I have no energy for anything…the real Dana
I haven’t noticed a greater intolerance for heat than before GBS but I live in Reno NV which has a very moderate climate. I will say that everything I do takes twice as long as it did before, I have to sit a lot when working in the yard, etc.
Absolutely. Sweating from just minor work. Cheeks become bright red and I have to rest after 20 minutes of gardening. I drink but it doesn’t work. I have CIDP.
Thank you Spencer, I think you nailed it for all of us.
When I was in rehab, they taught me to use bowls of rice and push my fingers through it to de-sensitise my nerves that regrew or re-routed. It hurts a lot for a few minutes but it seemed to help the rest of the day. A shower sprayer can have a similar effect. This was only for the immediate recovery for a few weeks after GBS, it helped with the cold and pins/needle feeling.
I do a lot better than most with the heat and work, but i was used to heavy work in a steel mill before. I find i dehydrate a lot faster and usually start drinking 30 min before getting hot and drink something every 30-60 minutes while working. Neurontin seems to make hydration worse, some other medications could easily cause problems too.
The few times i really got to hot since GBS it has taken 2-3 days to recover. Thats pretty consistant with anyone that gets heat exhaustion, it just happens faster now for me.
I still have nerve pain/damage in my face, but i have to balance pain from side effects with the nerve pain. Oddly enough i had no pain for a year after GBS in my face, then it started and got worse for another year.
That’s interesting about desensitizing the nerves. I had a lot of trouble with heat initially but it has gotten much better. I think I just overdo it sometimes and the heat can really add to it. I ran a 5 k last weekend in a triathlon relay . Luckily, it was overcast when I ran and I made sure to drink plenty. I still felt bad for that afternoon and the next day but never had pain. It wiped me out though and I had lots of twitching. I bounced back after that.
I really hate that face pain though! I still have damage in my face. Sometimes my vision is blurry when I’m too hot but it gets better after I’m cooled down. I also get pain in the eye that was affected the worst. It didn’t help that I forgot my sunglasses for the race. Hope your face gets better. Did you have Miller Fisher?
It wasnt typical miller fisher no, i had no vision issues. My pain was centered in my neck and i had no back pain, which is more typical if gbs from what i was told. The neurologist i saw at rehab said the types had a lot to do with the locations affected and the upper neck area was more typical of miller fisher even though i didnt have any other signs.
Hi my name is Kelly, I’m extremely sensitive to heat. I have CIDP an I keep my room blacked out with blackout curtains ,my thermostat is set on 68 an I have to have a fan on me. Even in the hospital they give me a fan to blow on me with temp turned down as far as it will go. If I get hot my entire body feels like it’s on fire from the inside out. It’s horrible pain an if I just start to get hot I feel almost a panic come over me because I know what’s coming if I don’t get cooled down. My husband tries to understand an my kids love it. But both our parents say they can’t come over cause it’s freezing an my parents give me a hard time about our electric bill cause they just don’t understand. I don’t expect for anyone to understand something they have never experienced but it makes it hard to go visit family when you need it to be cool all the time. God bless you all an wish you relief in your fight with your symptoms of your disease. Sincerely,Kelly c
Hi Kelly, I experienced the same type of heat when I was in the hospital. One way I kept cool was using ice packs. These are the hospital type where you put ice in it. My wife would roll it into a pillow case and place it under my neck. I’d too had the fan on me at all times. Now that I’m home, my heating spells only occurs when I do strenuous type of work or if I get stressed out. My wife calls it male menopause. haha! It’s like heat is radiating out of my body.
Thanks Spencer! It’s great being able to talk to people that can relate to your condition an pain. Even though many of us have our own unique symptoms we still can relate an share. Have a great cool day lol ty again,kelly