02-27-2012, 03:54 PM   #1
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Heat intolerance anyone?

Of all my symptoms, heat intolerance effects my life the most. Mostly because it makes all of my other symptoms worse. I hate it. I don't have a diagnosis but have had indicators of crohn's in my pill cam and scope, but no conclusive biopsies. I'm having a hard time finding information about heat intolerance. I know it's a symptom of MS, which I may or may not be high risk for.
If I get too hot, my guts practically melt. I get dizzy and my vision blurs like crazy. Usually my hearing goes all echo too. Sometimes I faint, sometimes I make it to the toilet with my head under the bath tub faucet with cool water. I just can't cool down fast enough, it's awful. So, so awful. I don't shower unless I have to. I can't even give myself a sponge bath without feeling just miserable for hours afterwards. This makes me smelly and gross. Sometimes it's a fight over feeling somewhat decent (or at least not making things worse) or stomaching my own stench. Okay, it's not that bad, but it could get that way if I don't figure a way to deal with it. Especially since the desert summer will sneak up on me.

Is there any one else that has this symptom? What is it related to? What can I do about it. The internet says to keep the thermostat a cool temperature and drink plenty of fluids. This doesn't help me and the showering issue. The worst is when I have chills and hot flashes at once. Anyone at all relate?
02-27-2012, 11:39 PM   #2
Miss Underestimated
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Location: Norfolk, Virginia
I get overly hot and sweat a lot, but nothing like you've described. If I need to work when it's hot, I use a few little tricks to help cool off. One is a neck/head scarf with the same powder-gel in it that's in baby diapers - you soak it in water, then tie it around your head or neck.

I also bought several bags of frozen peas. I divided them up, and put them into rectangular plastic bags, and I tie a scarf around the bag, then around my neck or my head. I got the idea from watching someone use a bag of frozen peas on a sprain.

The problem with these things is that they warm up, so they have to be changed out often in order to work.

They do make cooling gear for people who work in heat, but it's too expensive for me. There are vest, hats and scarves with coolant in them for sale commercially.
*Sick since 1987; managed on my own;
*diagnosed 2008 when I underwent emergency surgery;
*various meds and tests 2008-2012,
*Jan 2012-present, Humira. No symptoms, but scopes indicated disease.
*6MP for all of 2013.
*2014 &2015 complete mucosal healing.

**Staying on Humira for maintenance**

The statistics I see so far for my situation seem pretty good. There ARE long term statistics for the Anti-TNF drug treatments now. I'm here to make them longER.
02-27-2012, 11:46 PM   #3
Join Date: Feb 2012
My temp regulation got all screwed up when I started 6MP 6 months ago. I get the dizzy speels/fainting/extreme discomfort/belly starts acting up stuff but I still take showers. I just don't take hot showers. I'm not so sure what to do about it all other than if I go somewhere that's too hot, I get out fast before the symptoms start up. Can't wait to see how I deal with this come summer...

Current Meds
Asacol. 4800mg daily
6MP. 75mg daily
Prilosec. 20mg daily
Vit D3. 5000mg daily
Lo Ogestral
Dear Optimist, Pessimist, and Realist,

While you guys were arguing about the glass of water, I drank it...

The Opportunist
02-29-2012, 03:23 PM   #4
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Location: Philadelphia / Louisville, KY, Pennsylvania
When I was on prendisone, I thought I was going to over heat constantly. I got sweaty doing almost nothing, and I would sweat all night making it harder to get to sleep.
02-29-2012, 04:01 PM   #5
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Location: Naples, Florida
Hmm, dahlfacepoet, your symptoms sound pretty textbook vasovagal attack. Has anyone ever mentioned that?
It's good to be back
02-29-2012, 04:17 PM   #6
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David, no one has mentioned that to me. I often have an awful lightheadedness and burning in my ears. I attribute it to standing too quickly, when it happens, but sometimes this feeling leads to a full on "attack". About a month before my tummy troubles began, I had an episode standing in line at the walgreens. I remember almost losing consciousness and trying to hold on to the counter to stand up, I remember my hearing and eyesight being impaired. I also remember shaking violently. As soon as we got out side, I started feeling better. That was the first time anything like that has happened. But when my tummy troubles started, I forgot about it, and attributed all my other episodes to the heat. Hmmm.
02-29-2012, 04:19 PM   #7
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Join Date: Feb 2006
Location: Naples, Florida
Symptoms of vasovagal response:

Symptoms such as lightheadedness, nausea, the feeling of being extremely hot (accompanied by sweating), ringing in the ears (tinnitus), uncomfortable feeling in the heart, fuzzy thoughts, a slight inability to speak/form words (sometimes combined with mild stuttering), weakness and visual disturbances such as lights seeming too bright, fuzzy or tunnel vision, and sometimes a feeling of nervousness can occur as well
It might be something to bring up with your doctor.
03-01-2012, 01:22 AM   #8
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Also sounds like a panic disorder especially since you said it started to go away after you got out of line.

Panic attacks don't always mean you're worrying about something and they are often triggered by heat or sweating in general (and lines, odors, well, just about anything). This isn't something that's all in your head either as panic/anxiety disorder is an actual condition (I have it myself). I'd want to speak with a psychologist on top of getting checked out for other health conditions. It can be managed if it is a panic disorder. Check out the symptoms here: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001922/
Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 75mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel (endometriosis), Tylenol 3 (Osteoarthritis), Zantac 150mg 2/day (acid reflux), Klonopin 1mg (Panic Disorder), Imitrex 25mg (migraines), Zofran 8mg (nausea)
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 19 years and counting.
03-01-2012, 01:36 AM   #9
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I have the oposite problem- I am allergic to the cold. Big red hives and welts- very attractive! Had an EMT walk up and asked me if I needed help at my kids cross country meet one time!!

Good Luck!!

Diagnosed= 1992 and again Feb 2012 Confirmed with
CT enterography May 2015 !!

Waiting for the ok from my Ins company to restart Remicade. Will also start Imuron to get into remission!
I know it's out there somewhere and I WILL find it!

04-10-2012, 06:09 PM   #10
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Location: Colchester, United Kingdom
i relate to this well, not to the extent of yours and im sorry to hear that it is affecting you so much *hugs*

I get it at night, the sweats are awful, sometimes hot sometimes cold, but il wake up and my hair will look like iv just washed it and stick to my neck, my pjs will be wet and sometimes my sheets, its very difficult. its a horrible feeling. Iv been told my skin burns too, my boyfriend sometimes has to sleep right on the other side of the bed because im so hot and my skin gives off so much heat that he cant touch me because makes him too hot! but when my skin is that hot, i dont feel any change in temp and its only when i touch my skin i realise how hot i am.

Iv never talked to my doc about it... im not sure why, maybe i should. i just thought it was me, but now reading this i realise im not alone. and neither are you!

i know iv not given you any advice but i like to know that im not the only one feeling something xxxxx

CD diagnosed '08 however GI recon iv had it since birth.
Prednisolone 40mg daily
Mercaptopurine 30mg daily
Tramadol (as much as i can somedays)
04-10-2012, 06:23 PM   #11
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Thyroid problems also can cause heat tolerance issues.
04-10-2012, 06:37 PM   #12
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OH YEAH! I live in Southern California and I dread spring/summer...I am always hot and nauseated when the weather warms up. I basically live in A/C all summer long...sucks! I even use a UV protection umbrella when I go outside, and I get dehydrated really easily. I usually drink 1 bottle of electolyte drinks (unsweetened) for each bottle of water I drink, really helps otherwise I end up in ER.


Current Meds: Cimzia, Methotrexate, Prevacid, Sertraline, Nortryptaline, Prednisone, Atenelol
09-22-2012, 11:34 PM   #13
Join Date: Sep 2012
Location: Sydney, New South Wales, Australia
I have similar symptoms that i suffer from now. My face and skin seems overly sensitive to heat and sun. I often develop a facial rash after a shower and my skin feels itchy and hot. I find the best remedy for this is sniffing ground black pepper ( I know it sounds silly) but it works. It makes me sneeze and cools my skin..!! Definitely not a cure but assists with stopping the heat reaction after a hot or warm shower.

The other problem i have at the moment ( last had the problem about 20 years ago) is very hot and burning facial skin. The burning is so severe I end up acne style scars on my face with no presence of acne at all. Currently on Doxycycline tablets in the meantime until i see my Gastro, though I have head Doxycycline is related to the development of Crohns, Not sure what to do and very confused??

Also my hearing is getting worse as well as my eyesight..

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