hey! was wondering what peoples experiences with heat intolerance are..
like how much heat does it take, or what type of activities do you have to avoid?
and how does it effect your symptoms if you get too hot...
what do you do to feel better...?
When im in the shower (or hot tub) for more than 5 minutes it seems that have trouble making my arms, and hands move without being all jerky, and concentrating really hard to do anything for the next few hours., and my arm muscles twitch when at rest involuntarily.
and numbness tingling increases everywhere.. as well as face/ scalp pain /itching
the whole time I shower, or use a hot tub, I HAVE to keep my hands out of the hot water... if I even wash my hands for too long in hot enough water, I get a REALLY bad itching sensation in just my hands... like i want to scratch my skin off!!
also if I stay in the shower longer than 10-15 minutes i get this weird feeling in my chest.. almost like a tightness, or something has been tied tightly around my mid to lower chest area.. and i suddenly loose all energy, can barely stand up..I've never been hit by a bus... but I imagine it feels kinda like that.. its difficult to do anything...and hard to breathe.. it usually lasts no more than an hour..
When I am doing anything physically active, like if I have to park a ways away from a building, (I use a wheelchair 90% of the time when not at home) and I push myself rally fast to get across parking lot in the rain or something, the problems with my arms come back immediately.. it seems anytime I exert enough to start sweating.. problems arise..
anyways.. just curious to heat about other people's heat intolerance!!
The same thing happens to me. I can't even drink really hot beverages anymore and I always let my food cool a bit before eating it. We have a hot tub and keep the temperature set at 97-98 degrees If it's any hotter than that I feel horrible after using it. My kids tease me that we have a warm tub. LOL! I think there are a lot of us who suffer the same symptoms. I'm not looking forward to summer!! Thank goodness my hubby understands and is already looking into A/C for our house. I try to look at the bright side and remind myself I never have to do aerobics again!
This is yet another Thing I've had all my life, and never knew any different.. I never understood how people could use a hot tub! They all have 20 minute timers on them... So I thought maybe it was normal.. Till a few weeks ago I was hot tubbing with some friends.. And it happened to come up.. They were all in the water for several hours.. and asked how anyone could stand the heat for so long... There was this moment where everyone looked at me really weirdly... And I realized .... Hmmmm awkward!!! I HATE it when these things happen :(
The high here on the Gulf coast yesterday was forcasted to be 80. I know that the car saidd it was 83 when I got to the park. My friend and I pushed the children in strollers along the path that was in and out of the shade for 45 minutes. when I left, i was not making coherent sentances. I was week and slow moving: Major cognitive disfunction! When I got home, I was completely and totally wiped out for the better part of an hour. Usually I get the symptoms of heat exhaustion. I was on the verge of heat stroke twice in my college years, and appart form the splitting headache, that is exactly how it feels.
I usually don't do anything but go to my car and then inside again after it is 80 or higher. If it is hot enough to cause sweat, it is too hot for me! I went to the St. Patricks parade and it was 82. All I did was stand around and I was over-heated and really messed up (eyes acting up too) for almost 24 hours!
Firstly pwMS should NEVER USE A HOT TUB!!! (note the caps & 3 exclamations to make sure you get the point) Once apon a time a hot bath was the way the docs tested for MS, if the person suspected of having MS, had a return or worsening of their sx they were dx. Heat is a well known instigator that sets off pseudo flairs but i will never ever forget one of our members ending up in a wheel chair because of a stint in a hot tub, i think it took around 2 years to get her legs back. Those few minutes of 'fun' are just not worth the risks in my opinion!
Heat increases my fatigue, tremors, spasms and decreases my ability to speak, eat, cognition, balance, walking and vision. Heat for me can be either water temp, weather oh and even my internal temp, from what i've learnt, an MSers temp only needs to raise by a couple of degrees for them to be affected so keeping cool should basically become a survival instinct lol
Hmmm, I used a hot tub once in January, once in February, probably 5-10 minutes each time. No adverse effects noted. Dan (myshoeisonfire) and others certainly may want to stay away from hot tubs, but there's no point in a blanket condemnation. In fact, I'm more concerned about affects on my cardiovascular system and the bacteria that can breed in that environment.
That said, if my south-facing office gets up to 76-78 degrees as it often can on a sunny day, I become very lethargic with plenty of brain fog. And I can exhaust myself very quickly doing simple yard work if it's 70 or more. The parasthesia sets in, but not so much anymore as I've learned my limits.
First thing I've done with the last two houses I bought, I had a heat pump installed, and the AC in the car is used often. I like to wear short sleeves and shorts even at lower temperatures, which puzzled folks (including me) until I was diagnosed. I am thankful that we don't have the humidity of the East or South; I find myself wiped out quite quickly visiting those areas.
I don't handle cold extremes well, either, but that's a different thread ...
Heat intolerance, or anhidrosis as it is scientifically known, is a classic symptom of MS where a rise in temperature whether it’s internally or externally, may temporarily increase symptoms.
What causes in Heat Intolerance in MS?
The destruction of myelin, the protective sheath which surrounds and protects nerve fibres causes the formation of plaques on the nerves which slow nerve impulses. A build up of heat slows down nerve transmission causing symptoms to worsen.
Many people with MS experience a temporary worsening of their symptoms when the weather is very hot or humid or they’re running a fever, sunbathe, get overheated from exercise, or take very hot showers or baths.
These temporary changes can result from a very slight rise in core body temperature, even as little as one-quarter to one-half of a degree, because an elevated temperature further impairs the ability of a demyelinated nerve to conduct electrical impulses.
What are the symptoms of Heat Intolerance?
Some people notice that their vision becomes blurred when they get overheated; this is known as Uhthoff's Symptom.
Others report an increase in symptoms such as fatigue, general tremor, intention tremor, decrease in cognitive function and memory problems.
For many years, the ‘Hot Bath’ test was used to diagnose MS. A person suspected of having MS was immersed in a hot tub of water, and the appearance of neurological symptoms or worsening of symptoms was taken as evidence that the person had MS.
It must be emphasised heat coupled with increased humidity 'generally' produces only temporary worsening of symptoms and does not cause more actual tissue damage. The symptoms are 'generally' rapidly reversed when the source of increased is dealt with and it is most important to remember that heat does not cause an actual exacerbation. "
If anyone is interested in reading more, then google away and you'll find anything from anacdotal patient stories to the latest medical research, there is a huge choice of reading material available.
I just learned that my heat intolerance has a name all its own. Uhthoff's phenomenon. I used to love to sunbathe but about12 years ago noticed that if I was outside in the heat for even 15 minutes, I would have to go inside and lie down. I'm a registered nurse and I filed that symptom away in my mind. Also started noticing that long about dinnertime, 5ish, I felt particularly fatigued, for no particularly good reason, I thought. I worked in a busy emergency department and found when I got a serious case in that required prompt treatment, I might get hor and feel a little dizzy. When I get overheated, my legs get very heavy and I feel very stumbly. I also describe my head as feeling 'squishy' like when I turn my head it seems to take my eyes a few seconds to catch up. Possibly nystagmus and a definite nausea-inducing feeling. Alcohol ingestion also increases the internal heat.
When I'm in the heat my vertigo tends to want to kick in and I get tremors. And after I'm done being outside I tend to crash and sleep for hours. I have an issue with heat to the point I black out. I've had it since I was a little kid and no one can explain it. I tend to avoid it or I take frequent breaks. I've tried everything from making sure I'm eating or have sugar on hand to flooding my body with water.
I live in the northeast where it is cool or cold most of the year, which is great for me. I have recently gone to south FL several times. It was extremely hot and humid there. I tried to stay inside in AC most of the time. I came home in really bad shape after each of those trips. I had great difficulty walking for several weeks when I got home. The humidity bothers me more than the heat. We do get hot summers here so I keep my house well AC and use my pool for cool excersise. Hot drinks and showers luckily don't affect me at all.
I get dizzy and confused in the heat. After a hot shower, I feel weak, and will have to lay down for a while. I also get very itchy in the heat, and I had NO IDEA it was related to my ms. Thanks for mentioning it. I am always grateful to learn new things.
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