Hi all. After trawling through the MS sites around the web, I've noticed that heat intolerance is often listed in the symptoms list, but rarely does it give any examples of how it manifests itself. I've seen a couple examples elsewhere of people getting weak or their eyesight going berserk, but wondered if anyone else here has issues with heat. Personally, I get extremely nauseous, dizzy, turn a very flattering shade of green, and will pass out if I don't get cooled down fast enough. What's your story?
Also, now that we've had a long summer to ponder it, do you have any great tips for staying cool without resorting to being a hermit crab in the house?
I have had heat intolerance for many years, prior to any of the neurological symptoms that i am now experiencing.
I become extremely fatigued, bdizzy, nauseous, develop a severe headache and become flush all over, especially my face..
on several occasions I passed out from being in the heat
2 years ago, when i was working as a school nurse, i had to be outside for a graduation ceremony, someone broke a leg, i was outside in the heat way too long...i almost needed an ambulance to take me to the er... i had a real rough time...so i avoid being outside in warm weather... my family call me the werewolf!
Recently, if i am even near a window and can feel the sun's rays or even use a hot hairdryer or the the shower is too hot for me... i become very weak, my skin feels like it is on fire... weird feeling.
I now have central air conditioning and it has been a GOD-send.... truly.
If i do have a reaction, i cool down with cool compresses, sometimes a cool shower...
never anything too cold... i take it easy with the cold fluids when this occurs too..
i have mad myself ill from gulping it down too quickly... so small sips and then rest for awhile... sometimes it can take me a day or 2 to recoup.
So this is my story of heat intolerance.
I'm pretty much homebound and I notice that I get weak (physically weak - muscles don't work) when the temp inside the house rises above 74 degrees. After a hot shower I get spaghetti legs and can barely raise my arms. Once after a shower I had tingling in my right foot and ankle (a symptoms I'd never had befroe) and it lasted about 10 minutes. Indeed, it was the next new symptom I got. The only relapse I ever had was immediately after a long hot shower (a No-No in MS) and while I was drying myself off my right arm became mostly paralyzed.
It's the weakness and irritability and sense of desparation that I notice most. Yes, God Bless Air Conditioning!
I didn't answer your questions. They recommend avoiding the hot outside whenever possible. Do things early or late in the day. Get evaporative hats, neckbands and cooling vests to have with you when you travel. They have portable mister/fans than you can take with you. The heat is actually detrimental in MS. If you are hot, get wet and in front of a fan to evaporate cooler. Take a cool shower. Drink cold drinks and cold food. But the cooling garments especially head, neck and chest are very helpful.
Demyelinated nerves conduct their signals even more slowly in warmth. Over heating seriously, enough to raise your body temperature a couple degrees, which includes getting a fever with illlnesses, can precipitate a full-blown exacerbation - or a short one that resolves that same day after cooling off called a pseudo-exacerbation.
I, myself, lean toward hermit-crabbing. I'm fatigued enough without quadrupling it!
I read somewhere recently that 20% of MS patients do not suffer from heat intolerance. True to my habit of always falling into the "weird" group, it do not have it. I've watched for it with a great deal of trepidation, because i LOVE summer.
After my heart attack, my cardiologist said I couldn't exert myself if the temperature was above 90 or below 40, so I don't get exposed to extremes too often. (my husband has thermometers everywhere so he can police that) But, I don't have any trouble with hot showers or baths. Man, I hope I don't develop that problem!
Thanks, all for your comments. It sound like we're in the same boat. I'm lucky enough to live in WA, where it is blessedly overcast and rainy most of the time, and summer temperatures are usually in the 70s or maybe 80s. I don't have an air conditioner, although if I did have one, I may have avoided that trip to the ER last July. Quix, do you know if you have to have a firm diagnosis to get the A/C deduction? I could really use one, but I have no dx. :(
risnerrose: I'm not sure about the body thermostat - if anything, I swing the other way, always freezing, until I hit that happy 75 to 80 degree mark, and then all goes berserk. The funny thing is, I exercise and get all hot and sweaty just fine. It's when the ambient temperature is warm that things kick in - weird. Maybe someone else has that problem and can comment.
ps...hot showers do me in as well...one of my first attacks was in the shower - I thought the oil furnace was pumping out carbon monoxide, but it was just me and the heat doing it.
Hey!!! I'm in Washougal! I'm hoping we are past our last heat wave!! We had temps in the mid 90's earlier this week!!! Ickk! I think you do have to have at least a presumptiove diagnosis and a physician's note of severe heat intolerance and danger to helath. BUT, it's now Fall and you have 9 months or so to get this diagnosis.
AS to what it takes to make you hot, we're all different. Not everyone has heat sensitivity.
I moved to WA from the desert. This is heaven! Quix
Ha! Another Washingtonian! I'm up near Seattle, so the temps are a bit cooler, plus I'm near the water, so even if the cities are 85, I'm usually in the 70s, thank goodness! :) I married a guy from Florida...he wanted to live there. hahahahahaha. So thankful I didn't do that!! Even now when we visit the in-laws, I have to be really careful on the timing so I'm not stuck in the house! I've had too many nauseous trips to Disney World, standing in line in the sun!
I have been suffering with heat intolerance since I turned 40, which was 7 years ago and it has gotten progressively worse. At first, I would only have a reaction to 90 plus degree weather and now it happens in 75 plus degree weather. My symptoms are instant diarrea, difficulty breathing, rapid heart beat and feel like I'm going to pass out. I'm very drained for the rest of the day after an episode. I've been told it could be my hormones, but the doctors gave me a blood test to check my hormones and thyroid and everything came back normal. I haven't been checked for MS, so I'm going to do that when I get some health insurance. It's good to know that I'm not alone in my suffering. Sure wish there was a cure for this problem!
Have you ever found anything out Bosnow? I have the same symptoms.. above 75 degrees if I do anyting, walking horses out to paddocks and I get overheated and nausous, immediate urgent diharrea, incredible headaces.. also happens if I am working out too long and my heart rate spikes.. Ihave had tons of endocryn tests.. nothing found.. help?
I suffer from those same symptoms, and my doctor diagnosed me with "heat induced migraines" about 6 years ago. If I know I'm going to be out in the heat (which I try to avoid), I take one or two advil ahead of time, and that has been a tremendous help. I've not been diagnosed with MS, but with my heat sensitivity increasing, my doctor today mentioned the possible diagnosis to me.
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