AnonymousJune 10, 2008 at 6:13 pm
Hi, do many of you have temperature intolerance for heat? People have talked about problems with cold, but I have not seen heat discussed. I am having a really hard time this spring, I feel so weak and wiped out whenever it is warm. I am a Southerner (Louisiana, hot and humid) by origin and really have always tolerated heat pretty well. If fact, 80 degrees is my favorite temperature and I used to be kidded all the time about how how I like everything warm since moving “north”. Now, I feel like a wilted noodle whenever it gets hot and sweat a lot and pant and get really still. I was somewhat sensitive last year, but really was not moving as much as now, so this seems a lot worse this year (16 months into GBS).
Does anyone have (GBS/CIDP) suggestions to help be able to tolerate heat better and not feel so wiped out by it? Thanks.
AnonymousJune 10, 2008 at 8:03 pm
I have no suggestion except to say that before I had CIDP I wore short at work about 20% of the time. It didn’t bother me wearing long pants. Now since CIDP I were shorts in the summer about 80% of the time. I get hot so easily.
I remember telling people before I don’t want the fan on me and they remembered that but since I got sick I need the fan so bad. People thought I was getting hot flashes. But it was that it was the CIDP affecting me. Me it is more like I am hot on the inside. Like the inside is burning up and the outside is not bad.
AnonymousJune 10, 2008 at 8:07 pm
I was sensetive to both hot and cold. Showers had to be just the right temp and then I could not stay in them because the pulse of the water drove my nerves into vibrating. I could not do the dishes in hot water like before….I had to add cold water or let it sit till I could tolerate the water temp. If I left it in the sink to cool for too long I could not stand to reach into the cold water to pull the plug. Weather wise I wanted to go outside with out a coat and just wear a sweatshirt…..wore that sweatshirt and long pants all year long. I knew my both was not regulating. Heat in the Summer did not feel hot. I was that little old lady in a sweater all Summer. I would look around and I was comfortable in my long pants and sweat shirt and they were in tank tops and shorts and I had tennis shoes on they had sandles. My feet were not even sweating. I did not sweat until this Spring when we hit a few 80 degree days and OFF come that sweatshirt with a big celebration. Now I throw off the covers at night and shed the layers. It will be 3 years in November. So they mean you get better SLOWLY! I never realized how slow they meant. The nervesand mylin sheath near the spine are the ones that control body temp and they heal faster than the nerves or mylin sheath in the feet and hands. Hope this helps and just listen to your body and make the adjustments to how you feel. Heat makes it harder for me to breath too. Does not matter if it is humid or not but humid is harder usually. Take it easy during those times of the day!
June 10, 2008 at 10:39 pm
heat is bad for me as well. I was so glad when we moved and I got to experience winter for the first time! I loved the snow and cold and felt much better…threatened my family that I would go lay naked in it and make snow angels LOL!
During the summer, I sleep with ice packs and eat lots of otter pops. So far this year, it is still cold here in Idaho (snow in a couple of places even!! and I am thinking of a road trip so I can enjoy just a little bit more of winter!). Last year at this time we were on our way and when we got here, it was very hot and I was dreading the season again this year.
I have a friend with diabetic neuropathy and she told me heat affects her the same way it does me. Now, I dont mind a hot soak in the tub (leaves me VERY relaxed) or a hot shower…but I know if I stay in too long I get electric pin point shocks in my legs and feet.
I plan my errands and day around the weather. Morning or evening is best because here the heat peaks mid to late afternoon. Then again, it stays light out until after 10 pm in the summer so I have more time to get things done while it’s not so hot out.
Also, when I was first sick, my “normal” body temp was low to mid 96 degrees. So if It was cold, I was really cold. If it was hot I was really hot. Now, it is about 97-98 and I can tell how hot and cold it is. It was bad not to be able to tell how hot things were when I was cooking because I grabbed the grill hood bare handed and didnt realize it till I got a bad burn! Or would have the water on all the way hot and not be able to tell how hot it really was…wondered if something was wrong with the water heater. I would end up bright pink after a shower or dishes. I remember getting in the shower one morning and feeling the hot water and got all excited LOL! Who gets excited over a burn?
AnonymousJune 10, 2008 at 11:50 pm
Something weird is going on this summer. Last year I could not stand the heat and humidity. This So far this summer I really don’t feel the heat. I can tell the difference between being in the shade or in direct sun light, but it isn’t as extreme as last year. The overall CIDP symptoms gone downhill since last year. I’m not sure what is going on with the heat. Of course the summer is still young. It has only gotten into the low 90 with the heat index around 99. I have no idea what will happen when it really gets hot.
AnonymousJune 11, 2008 at 1:25 am
I think that the common theme is changes and difficulties in temperature! I know that I used to be the person who never got cold, no matter what; now I am always freezing!
Since I was dx, I have never again felt warm. In some ways, it is quite amusing since I was raised in Ottawa, Canada – v. cold!!!!, and now live in Wellington, NZ which is a much more moderate climate.
…my solution – wear lots of merino wool layers….but I agree with the hot showers and potentially very pink skin problem!
AnonymousJune 11, 2008 at 3:59 am
I am a CIDPer. I love the cold, but the heat is dreadful for me — the way it was explained to me is that heat makes the nerve impulses run faster, thereby increasing sensory problems. Happily, being in London, we don’t have a great deal of heat. However, we don’t have air conditioning either, so when it is hot there is no way of getting out of it.
Best wishes in the battle,
AnonymousJune 11, 2008 at 6:50 am
First off since getting CIDP I’ve had a body temperature ranging from 100.5 to 101.5 every day. And now I also cannot tolerate temperature changes, I typically have so many layers on because I’m always shedding and putting on depending on what’s going on at the moment. I get cold very easily and typically am comfortable in sweatshirts in an air conditioned place. However the temperatures have been in the high 90s here lately and my few attempts to go outside have resulted in:
[*]immediate difficulty taking a full breath
[*]rapid muscle weakness to the point of collapse
[*]rapid heart rate
[*]shooting nerve pains, tingling etc…
[*]and then after my husband dragged me back inside we took my temperature and it was 103.2 – WOW – and yet it only took an hour in air conditioning to go back to 101.2
all that in less than five minutes
so I would definately have to say that while I feel horrible when it’s cold it doesn’t have that kind of devastating effect on me and I won’t be going outside if the temp is over 80 anymore. Of course it would be NICE if we didn’t lose power all the time in these frequent storms!!! 😡
AnonymousJune 11, 2008 at 12:46 pm
Heat absolutely kicks my butt, and very quickly. Difficult cuz my hubby is always really cold and sets the heat in the truck at 75, even in the summer. I literally feel like i will die, can’t breathe, face goes limp, choke, and even drool on myself, slump over, etc.
Have to have cool air circulating at all times. Taking showers was impossible for quite some time. Then i realized that taking a luke-warm shower with fan on and door open works pretty well. Still have to make it quick though.
Being pregnant this summer, i figure the next couple of months will be torture. Talked hubby into buying another air conditioner and one of those above ground pools, so i can survive the heat and humidity.
AnonymousJune 11, 2008 at 1:04 pm
[QUOTE=Jim C]Something weird is going on this summer. Last year I could not stand the heat and humidity. This So far this summer I really don’t feel the heat. I can tell the difference between being in the shade or in direct sun light, but it isn’t as extreme as last year. The overall CIDP symptoms gone downhill since last year. I’m not sure what is going on with the heat. Of course the summer is still young. It has only gotten into the low 90 with the heat index around 99. I have no idea what will happen when it really gets hot.
[B][U]Forget all of the above[/U][/B]. I went out to work/putter around in the yard this morning. The temp was only 86 F but the humidity was high. It cleaned my clock. Funny what a difference a day will make.
AnonymousJune 11, 2008 at 1:50 pm
I don’t tolerate the heat like I used to either. Something that helps me a bit are cool ties. I am including the link so if you are interested you can make them yourself. [url]http://www.water-sorb.com/polymer_cool_neck_bands.php[/url] The link describes what they are and how to make them. I have a couple and exchange them on hot days.
June 11, 2008 at 5:43 pm
Hi With Hope,
Kevin had some difficulty when the heat initially hit. I sent him to school with his tee shirt damp and a wet baseball hat. He was tired, weak, and his feet hurt him. I was paranoid he needed treatments sooner. After about a week, the weather and stress at school cooled down. Besides the heat, Kevin seems to have increased pain in his feet and tiredness when he is stressed, in addition to the heat. Now that school is out, he has not complained about pain or tiredness. No aleve either, with the acception of this week because of treatments.
We go on Kevin’s Make a Wish trip to Ca. soon, so the heat will be interesting.
Well, since you obviously cannot wear wet tee shirts to work!!! Ha Ha!! Maybe you could find a decorative all cotton scarf and dampen it and wear it around your neck. How about wrist bands or a headband dampened when at home. Maybe you could even use a decorative scarf as a headband and keep your forehead and neck cool.
When we eat on the patio, I use a mister attached to the hose and put it near the table with a fan. It helps with the bugs too. Well, hope you find a way to stay cool this summer!! hope you are feeling well!!!
AnonymousJune 12, 2008 at 5:03 am
Gosh, heat makes me wilt and then some! Right now with all the crazy weather changes, by the hour, I’ve had a horrible time staying warm 😮 My core temp has been hovering at 96.6 and I feel lousy! So, time for a hot shower/bath and then I feel so much better. It’s like my body just can’t raise my temp but if I help it out, it will stay around 97.8* for several hours.
You can’t convince me that these crazy nerve diseases do not affect any part of the body they want to 😮
AnonymousJune 13, 2008 at 7:07 pm
Thanks all of you for your replies and suggestions. It helps to know that others have problems tolerating heat. Sometimes it feels like there is no end to the odd manifestations that come with this illness and it seems so odd when something changes completely in your life compared to before this stuff happened. I have done better in the last couple days with fans and drinking lots of cold GatorAde. Thanks for the other suggestions. I am sure that all will be needed by the time it gets really hot.
Thanks for your kindness to share your stories and suggestions.
WithHope for cure of these diseases
AnonymousJuly 24, 2008 at 7:09 pm
This is my first post because this is a major problem for me. I had an extremely bad case of GBS in 2003 ( they say it was the worst case they had seen – I was in many hospitals including MGH in Boston). I was in the hospital from 6/9/2003 until 11/18/2003. I was totally paralyzed head to foot, even had to have my contacts removed because I could not blink – my eyelids were taped closed at night. I was on a respirator, feeding tube, given the last rights twice when I got pneumonia. The second time I got pneumonia, I was given no chance as I was already so weak. I’m stubborn and knew my husband would not survive without me ( and there were many prayers said for me). My records from MGH, alone, were 286 pages and I still don’t know who my Doctor was. When I finally came home, I was wheelchair bound and told I would never walk again. I now use a cane and fall frequently but I am walking. After all this background, I will finally address the heat issue. My body temperature is 96.8 and I need to take my blood pressure twice a day to make sure it is high enough (or take a pill to make it go up). I do not feel hot or cold objects very much though I’m conscious of these temperatures more than in years past. What I noticed affects me more than outside temperature is humidity. Snow storms, rain or summer heat with humidity are not tolerated by my body (feet and hands especially). Those days mean crawling to the bathroom, no covers touching my body & many pain killers. I live on an island (Martha’s Vineyard) which is probably the area where humidity affects daily life the most. My husband is a native “born on grandma’s kitchen table” so even with the extensive pain I go thru, we’ll live here until he dies or I can somehow con him off the island. My family is very long lived so I hope someday to live in a drier area of the country. I was wondering if GBS/CIDP survivors find the dry southwest more livable or not ? Any suggestions where is the least painful place to call home?
AnonymousJuly 24, 2008 at 8:14 pm
Welcome Johnnie1946:) You know, for the heck of it, the other night, I googled “temporate, safe for woman alone, good economy” and it kept bringing me back up into the northern sections of the US. Interesting. I love the Carolinas, but I would be absolutely miserable in the summers. People have told me-“when it’s so hot, you just slow down with everything you do”. My normal temp. is low like yours, and when I get overheated, I HURT, plain and simple. Live in Michigan, close to Lake Michigan, so sometimes the Lake gives nice breezes, like you have, and sometimes the humidity and dewpoints get so high and I turn my ac on, would rather be cold and wear sweats-I have always said, that there is nothing I can do to cool off(other than the obvious cool showers and drinks,etc) when it gets hot, so I like the cold. I have much less pain and weakness rubbery feeling when I am cold. I am not real fond of the lake effect blizzards we get in the winter, but hey, I guess it’s a trade off. I don’t have the finances to have two places to live, so my vote is no to your question of the southwest.
Welcome again. I personally envy you living on Marth’s Vineyard,:)
AnonymousJuly 25, 2008 at 7:15 am
I’m not sure about that Johnnie – since getting CIDP my normal body temp has been around 101. I can’t take the heat, I can’t take the cold – I need a very small range of temperatures to function optimally. So where can you find a place where it’s about 75-80 all year around with little to no rain? I’ve spent time in both humid and dry areas since getting sick and I am much worse in humidity.
Since I can’t control my environment, and my husband is not likely to move away from Virginia where his family is, I try to prepare for contingencies. Last weekend, for example, I had an outdoor picnic/birthday party and the temps were in the 90s. I took my old beat-up safari vest and put freezer packs in the pockets. It wasn’t the most attractive outfit I’ve worn but it allowed me to sit outside and listen to the music for several hours. I’ve got heat packs for the winter but rarely spend enough time outside in the snow to need them. The funny thing is several of the “normal” people asked me where I got all the freezer packs (from the IVIg shipments) and were sitting there sweating like mad wishing they had them. 😀
AnonymousJuly 28, 2008 at 11:31 pm
this is my daughters second summer since her diagnosis of GBS. last year the heat would wipe her out really quick. it was horrible, we scheduled our life around the heat. she is much better this year, however in northwest ohio it hasn’t been as humid, which i think helps.
AnonymousJuly 29, 2008 at 9:58 pm
Another odd thing about the heat is that it gives me a coughing “fit” where I cough with going outside and do not stop until about 15-30 minutes after getting back into cooler air and feeling cooled down. Does anyone else have this? It seems really odd. It has been happening since the weather started warming up in May.
Just another oddity. I am so tired of coughing.
WithHope for cure of these diseases.
AnonymousJuly 30, 2008 at 11:46 am
[FONT=Palatino Linotype]I’m just going to add to this as I had a bad form of Neuropathy, the heat just about completley does me in also. Due to the numbness in myfingers & hands I can’t distinguish whether something is too hot. I have burned my fingers one time after another.[/FONT]
AnonymousJuly 30, 2008 at 2:13 pm
The hot summer kills me and the coldest of winter hurts me! I am both heat an cold intolerant! The heat when it’s get’s in the 90’s drives my nerve damage up. Rain coming gets me all numb and tingly more than usual. I can tell when snow is heading! Outdoor temperature changes that are sudden. I get numb and tingly. I sweat really bad in the summer!
I learned a trick though that helps me with tolerating the heat some. I walk around in the summer time with a cold rag laying on my neck. It really does help! Even at bedtime when I have problems with heat and the AC is on! I take that cold wet rag and lay it on my neck! Try it! You may see a difference!
AnonymousAugust 2, 2008 at 11:41 pm
Before GBS in 2002, I was more sensitive to cold, and tended to keep the indoor temperature in our home fairly warm.
Since GBS, I get hot very easily and keep the temperature quite cool in the house, even during the winter. I have drawers full of sweaters that I almost never wear- they are too warm.
However, when I do get cold, it takes a long time for me to get warm.
The autonomic nerves are what regulate body temperature, and GBS can damage these nerves. Since I have several other kinds of residual damage from GBS, I guess this is just one more.
AnonymousAugust 3, 2008 at 3:41 am
[QUOTE=WithHope]Another odd thing about the heat is that it gives me a coughing “fit” where I cough with going outside and do not stop until about 15-30 minutes after getting back into cooler air and feeling cooled down. Does anyone else have this? It seems really odd. It has been happening since the weather started warming up in May.
Just another oddity. I am so tired of coughing.
WithHope for cure of these diseases.[/QUOTE]
Hot air in our lungs triggers phrenic spasm
and/or damage to one or more of the nerves that control the reflex…
Check the list of nerves involved and see if you have known damage to any of them.
AnonymousAugust 3, 2008 at 8:34 am
Oh count me in on all of the above. I am find and then someone opens a door and the change in the tempature throws me into coughing and choking. Just that fall or rise in tempature or humidity. I have walked into a doctors office and been standing there in the a/c thinking this is nice and comfortable and I got “brain freeze” I could feel the cold air just going up into my sinus and POW the pain! I can open the freezer or frozen food display con trigger this but I just have learned to stant to the side as I open the doors. But it is weird to be this sensitive. Expecially for me that oved the heat and loved being outdoors. Also loved the Winter sports and now I hate to even open the door in the Winter. I never wore shoes and now can not be without socks day or night. BUT FINALLY this Summer, I am starting to sweat again and feel the heat like I did before. I am able to finish my meal at a resturant, rather than take part of the meal home because I am freezing. It was hard to find just that in the middle comfort zone for me! But I did it. Thanks are getting better slowly! I am measuring my improvement by Summer and Winter now and can not wait till the snow flies! OK maybe not rushing that just yet! I have not lost my mind completely! But I am looking forward to next Summer because I had such a great one this year! Even in old age the years are getting better and better! 😎 Just hang in there and don’t think you need to explain to people why you are wearing a hooded sweat shirt in the middle of Summer! Just go with a light color don’t worry your shoes don’t match your purse! Unless you have a purse that looks like a sneaker!
AnonymousAugust 10, 2008 at 3:06 pm
Heat has taken control more and more as the years pass. Diagnosed 2000. Today if I am in the humidity, even starting my car, I turn into a great big wet mop and lose my energy like zippo. Nobody seems to understand. Glad you guys are here. I.m quite sure it has something to do with our hypothalamus. My Neuro told me that when recovered
(HA,HA) from GBS, our bodies react like Chronic fatigue syndrome. The hypothalamus, heat, cold, control, in our bodies is very weak, so therefore we experience these dreadful residuals. Some times it.s hard to avoid but I try m best. Utilty bills out the ying yang. xoxoxoxo Roxie:D
AnonymousAugust 13, 2008 at 4:56 pm
I haven’t been reading much on this forum lately, because of the [B][COLOR=”Red”]HEAT![/COLOR][/B] We had quite a spell of +100 degree days. I had to hibernate and couldn’t think well at all. I am now dealing (or not) with warm temps in my office. The maintenance guys think I am totally wacked out (sort of am anyway 😮 ).
One note on the coughing. I have been through several medication changes in the past couple of months. One was adding an ACE Inhibitor for blood pressure. I narrowed it down to this medication today when I found a forum and everyone complained about the horrible hacking cough. I do think the heat does make it worse.
Anyone around me has heard me say that I want to move north where the temperatures are cooler. I grew up in Michigan and feel I am more tolerant to the cold extreme rather than this heat in Oklahoma. Any suggestions on where to move????
August 14, 2008 at 1:57 am
Jan, your offer to move is tempting! Jobs galore, cold, friendly people…now if only we could afford the move and needing a sponsor. If only immigration to the us was as interesting and intense :).
We love Idaho. Our hottest has been 100 or so, but usually in the 90s. And it reaches its peak in late afternoon around 3ish. Then starts cooling off again…gets into the 60’s at night. We will start enjoying a cooling trend within a month as fall sneaks in. I look forward to it! Winter is my favorite time of year! I cna walk around in a tshirt or light sweater and enjoy shivering LOL!. Sometimes I get too cold and will wear thermals under my clothes and no jacket. BUt summer means I am never cold enough and snuggle with ice packs all the time even with the a/c on. There are days that I will suddenly feel as if I will combust! I can take my temp and it will be over 100 even though inside the house it is only 72. Then it will drop to 96 and I am okay. Maybe my being miserable with residuals the past 3 weeks has been due to heat and I didnt even put two and two together? Hmmm.
Idaho is friendly, inexpensive, not crowded, and very laid back and a slowed down lifestyle. No one seems worried about impressing anyone like back in california. Which was way too fast paced and over stimulating for me! I long to live in a farming situation and grow lots of crops and have some sustainable ‘pets’ like alpacas and goats and chickens. That would be the life!
August 14, 2008 at 2:01 am
[QUOTE=Judi Z]Gosh, heat makes me wilt and then some! Right now with all the crazy weather changes, by the hour, I’ve had a horrible time staying warm 😮 My core temp has been hovering at 96.6 and I feel lousy! So, time for a hot shower/bath and then I feel so much better. It’s like my body just can’t raise my temp but if I help it out, it will stay around 97.8* for several hours.
You can’t convince me that these crazy nerve diseases do not affect any part of the body they want to :eek:[/QUOTE]
My temp used to be only a high 95 low 96…it is finally up to only 97 most of the time. Those couple degrees makes a huge difference in how cold and hot are perceived thats for sure! I actually get bad headaches if I am in the heat too long and feel as if I am melting. I also still cant tell for sure how hot water is when I am showering or washing dishes. But, it is much better than it used to be…I still get burns when cooking and sometimes dont even remember it happening (I had a bad one on my arm from the oven and swear I dont recall it even happening, dont remember any pain or burning or anything!)
AnonymousAugust 14, 2008 at 3:25 am
I get that Irritable Bowel Syndrome alot when the heat gets bad. I also think the Global warming too may effect humans especially those with autoimmune disorders. Here we are loosing animals because of the climate change, so it’s got to effect the human race as well.
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