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Living with Polyneuropathy CIDP, GBS, & CMT

FATIGUE and OVER HEATING

#1

I was diagnosed with GBS on May 2013. During my stay in the hospital, skilled nursing and then a Rehab hospital, I had some major heat issues. Being paralyzed from the neck down, the heat was unbearable. I would sleep with an ice pack under my neck, a fan blowing at me, the thermostat set in the 60s and even had ice baths just to cool me down. The heat eventually subsided about 5 months out.

I have since regained about 75% of body function. I’m able to walk around, do things by myself and eventually went back to work. But I noticed one thing, I get tired real quick, like within half an hour into what I was doing. My body then overheats and I start to sweat, and sweat, and sweat, up until a half hour after I stopped what I was doing. Only way to cool me down is to take a cold shower. And then I’m shot. Too tired to do anything.

Anyone else experience the same?

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#2

I’m sorry – I have no experience with such heat. However, you’re the first person on this forum to have reported on their level of regained function, especially 5 1/2 years out. Would you share what constitutes the remaining 25%, unrecovered?

I was diagnosed with GBS October 2016. In retrospect, a mild case (diagnosed 48 hours after onset of symptoms this, with treatment beginning the same day with five rounds of IVIG infusion): I remained able to walk (with support), and full mobility returned after nine weeks. However, my primary weakness was in my hands (I think this is a rarity with GBS), and, despite some recovery, I am still unable to extend nine out of 10 fingers; I am using Dragon Naturally Speaking software to dictate this post. There may have been some small recovery over the last three months. Can you share the timetable of your recovery?

#3

Hi fingers! Yes I’m about 75% maybe 80%. My core is still weak and so is my legs. My feet is still partially numb and tingles a bit. I have full use of my hands and fingers. I can walk unassisted. For me, I believe my recovery was nothing short of a prayer being answered. As stated above, I was paralyzed from the neck down. I had to be intubated for 11 days. My neuro said I had a 50/50 chance of walking and going back to some normality in my life. But he did encourage me to work hard on my rebab and don’t give up. Being a former weight lifter, my work outs kicked into overdrive. However the fatigue and over-heating never went away. I get real tired just washing my car, or doing minimum yard work and I sweat. Boy do I sweat. And it doesn’t stop until I cool myself with a cold shower. But after reading some of the blogs here, I count myself blessed to have recovered as much as I did. Another thing my neuro told me was that everyone afflicted with GBS recovers differently. Some will recover 100%, some 75%, and some 50%. We’re all built and wired differently from each other.

#4

I at 6 months out was told I was 80% recovered I sure as he’ll did not feel as if I was there yet, but my Nero thought so. 4 and a half years later I felt ok 6 yrs now I am at that 80%. I do believe I got a dr. That new very little about g.b.s. i never started the heat thing till this yr. And I have had to reincrease my lyrica and it has helped sorry you had to go threw that,. g.b.s . Is horrible in so many way . We all are different and yet so alike no matter what we made threw a terrible time in our life. Stay positive and stay strong, and fatigue sucks, learning o live with it. Guess we all do in our own way good luck alll

#5

Hi Spencer –

I feel the same as you about feeling blessed to have suffered so little loss, compared to others on the blog. Your neurologist has come up with no explanation as to the sweats?

Anyway, what I’m curious about is when your recovery plateaued, and whether there has been any further recovery since that time. I asked partly because I think I may have gained a small bit of finger extension this past summer (21 months later), and partly because I have the option of exploring tendon-transfer surgery, whereby a relatively unimportant but functioning (innervated) tendon in my hand would be transferred and attached to the muscles allowing for (some) finger extension. I choose not to consider this option, so long as there is the possibility of additional improvement through the regeneration of the destroyed myelin. My neurologist, who predicted “a complete recovery within weeks to months”, now speaks of the potential for the recovery over up to three years. However, nerve conduction tests, last done in nine months ago, suggested that this recovery is unlikely.

I too have worked out and have regained muscle strength in my wrists, squeeze, and even pinch, let alone in the upper arms and thighs. My core muscles were never compromised. However, I wear splints on my hands when I sleep, to attempt to keep the finger joints supple, if I ever regain control over the related muscles – at this point I cannot straighten out my fingers, even applying significant pressure.

Regards,

David

#6

Hey David,

Most of my recovery happened within a year time. I went back to work 9 months after being strickened. That’s why I say I feel blessed. I placed my entire faith in my Lord and Savior. Still I continued to have small recoveries from year 2 to year 3. I plateaued between year 3-4. I still see small improvements now and then. Hang in there.

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#7

Yes!!!
I spend all my time sweating!! Summers I stay in the house with the air set at 68 degrees. Now in the winter I have it still have it set at 68. We have a home in Florida that my husband loves to go to, but if I go to the pool, I have to take two frozen bottles of water to hold on to. It’s mostly my hands that hurt if they get hot.
My pour husband is now used to being cold. He has to wear a lot of layers.
I don’t work because it would be too hot for me.
I am thankful that I have found the right drugs to handle the pain I used to be in, my hands felt like they were boiling from the inside out.
I am on year five with CIDP, glad u are not in the pain. Fatigue i live with also. Again it doesn’t take long for me to start sweating. Just like you!

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#8

When I overheat I usually take a cold shower going from luke warm to cold. my Showers could last anywhere from 15-30 minutes. Then as I start wiping myself down, I start to feel the heat inside of me building up. Then I have to stand in front of the AC to cool off again. Once I cooled down I’m good.

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#9

Hi Spencer,

I wish it was only heat!!! I take huge amounts of pain meds to get me through the day.

Kim

#10

I had severe leg pains if my legs weren’t supported. Same with my lower back, and butt. I also had pains in both hands, they felt like pins and needles and felt as if they wanted to pop. So much pressure in both hands it was painful. It felt good to have a cold towel on my hands. Both feet also was painful with pins and needles. I feel very blessed to have the pain disappear. I only have slight numbness on my feet.

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#11

Very lucky!!

I guess I can’t complain, at least I can control the pain with drugs. So I always advise to change your drugs until u find something that works for you.

Kim

#12

As a young girl had this, was call after much testing “growing pains” continued off and on to early 20’s then disappeared. Came back in late 20 early thirties Dx as COSTOCHONDRITIS. Disappeared late 50’s Dx GBS after a flu shot. 6 months ago Dx CIDP treating w IVIG. symptoms better. Now last week COSTOCHONDRITIS back. It feels like I am wearing a constricting garment on my chest, and something feels like it’s flapping on the left side of my back. Slight swelling but no discoloration. Last fall was 2 months ago. Anybody heard of this?

#13

Kim I feel your pain. I am always overheating. Also I have a burning sensation on my body that feels like I am being microwaved from the inside out. The only thing that helps that is tramadol every 4-5 hours. As far as overheating… I just do what I can to cool myself down. My poor fiancé is always cold.

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#14

Yes! Always!
Lol I always have a hand fan within arms reach and my dear Hubs knows if I turn red to hand me the nearest magazine so I can fan myself! I sweat like crazy and it’s embarrassing. It’s dead of winter and I am in shorts and a tank top in my house… smh. My NEURO believes this has affected my autonomic system… idk all I know is I am hot and sweaty and damn tired.