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Old 07-15-2010, 03:34 AM
garrysgirl garrysgirl is offline
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Question about heat

I've been reading so much about heat causing problems for people with MS but I'm a little confused. Does heat make the disease of MS progress more quickly, or does it just make the symptoms of a flare worse? I have arthritis and fibro and prior to the MS diagnosis was looking forward to getting a hot tub. My neuro said to try it before I invest in one. I mean I could deal with the tingling being worse if it helped my other problems, but I don't want to cut years off my life. I also sleep with an electric blanket year round and use a heating pad on my neck which is where my biggest lesion was found. This heat does not bother me - it feels good, so what's the deal. Also if heat is so bad for us why would my neuro doc say I could try it?
Old 07-15-2010, 06:19 AM
Mamie Mamie is offline
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I don't think heat makes the disease progress, but it does lead to a symptomatic state in many of us. Actually, many neuro /immune conditions are negatively affected by heat/humidity.

A hot tub may wind up leaving you incredibly weak or bring on other more dramatic symptoms, so I think it is just prudent and common sense advice from your Doc to simply "try it before you buy it."

MS is such a personal condition, and some people are not as affected by heat as others. You may find you enjoy and benefit from a hot tub with no problem.

I live in the Midwest and this summer ( with combined heat and humidity) has brought weeks of sustained heat indexes of 100-110 etc. It has just been brutal on me. Brutal.

But hopefully, you may have no problems and can enjoy the relief of a hot tub.

Old 07-15-2010, 08:27 AM
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Justsayyes Justsayyes is online now
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My problems with heat sensitivity always give me temporary symptoms. I don't think heat has caused any permanent progression.

I have a hot tub, I can often use it for up to 30 minutes, then I start to feel a bit weak, vision can blur. I always take a cool shower after and that helps.

I often use a hot water bottle on my shoulder/neck without a problem.

Being outside for any length of time in this summer's heat can make me feel awful for several hours, but everyone seems to be affected to some degree, not just MSers. Unless it's just that people love to complain about the weather!
Old 07-15-2010, 08:44 AM
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DianeD DianeD is offline
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I'm melting, I'm melting

Heat (for me) is very troublesome. I cannot deal with it and I feel like that 'bad witch' in the Wizard of Oz!

Heat makes me tired and shaky (not to mention grumpy). Its hard to function here in the South when it is in the 90's and humid.

I'm a troll I guess; just hanging out in the inside world (the one with a/c !
You cannot dream yourself into a character; you must hammer and forge yourself one.
Old 07-15-2010, 08:59 AM
Jennyfoo Jennyfoo is offline
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Hey there! I've got an inflammatory arthritis dx and suspected MS, no dx yet. I too was looking forward to getting a hot tub or exercise spa, but I won't be getting one unless these MS symptoms were brought on by using Humira and go away once I've been off it longer. I still take hot showers for my arthritis, but I have to sit on my shower stool and recover from the heat before I get out of the shower. The hot showers make me dizzy, disoriented, weak, and often I have a hard time walking afterward. It goes away after I cool off.

Now, heat for a more extended period of time; yowza! I get so sick: same symptoms as before, will feel like I'm slogging through waist deep mud to walk too. It'll bring on more tingles, numbness, twitches, etc too. The AC in the room we had dinner for a family reunion wasn't working on Wed. It was 95 out, and just as hot inside. It was miserable, and I also got a horrible headache. It took more than 24 hours to completely recover from that, and I still have numbness in my left foot and leg that I didn't have before that night.

Last Sep I used the hotub while on vacation and I thought I stayed in too long, but then realized I'd been in there a lot shorter time than my hubby or others. I got really weak and my hubby had to help pull me out. Lol! Now, in hindsight, it could be due to MS.

I agree with the neuro. Try before you buy. Know someone who has one? You could try soaking a few times to see how or even if it affects you.
Old 07-15-2010, 09:06 AM
Sir-Voor Sir-Voor is online now
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The heat had no effect of progress

The heat had no effect of progress, at worse only causes what is called a pseudo-exacerbation.
Like computer nerve signals slow with heat, and can make system normally not noticeable be noticeable.
Once the body cools down things go back to normal.

FYI it is the body core temperature that causes pseudo-exacerbations, a fever can also cause a pseudo-exacerbation.

I recommend Googling pseudo-exacerbation, and donít do like I did before I knew about them and take a hot shower and stressful hot day.
Old 07-15-2010, 09:23 AM
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SNOOPY SNOOPY is online now
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Originally Posted by Sir-Voor View Post
The heat had no effect of progress, at worse only causes what is called a pseudo-exacerbation.
Heat has caused exacerbations for me, they were NOT Pseudo-exacerbations but the real deal. Four of my five exacerbations have been in the summer.

garrysgirl, not everyone with MS is heat sensitive. When I was diagnosed my neuro told me to stay out of hot tubs.
1985 dx'd RRMS. 5/09/2013:Secondary Progressive without Progression. Never used DMDs. Low EDSS.
Old 07-15-2010, 10:05 AM
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JoanFrances JoanFrances is offline
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Hello garrysgirl

one of the things that MS robbed me of is a nice hot bath. I used to love to lounge in the tub with bubbles all about me, and at time even bring a nice glass of wine with me.

Drinking any of those beverages went out the window when I started taking my meds. Not that not being able to enjoy a drink affect the quality of life, but being able to bath does.

I am not reignited to sponge baths as I am afraid to get in and out of the tub. I detest taking a lukewarm bath to boot.

Heat in general affects me terribly, but so does the extreme cold we can get in the winter. So I think it may be the extreme changes of heat or the lack of it is what causes my sx to get worse.
Old 07-15-2010, 10:29 AM
dee-dee dee-dee is offline
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We live in Az. The heat is awful. I don't know if it is the heat that is making things harder for months. I can hardly walk for about 3 weeks now. It's hard to lift my legs to walk. Any ideas?
Old 07-15-2010, 11:43 AM
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Toomnyhats Toomnyhats is offline
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MS & Houston heat

For me, the heat/getting hot robs me of my strength & energy. If I don't stop & get cooled, my legs get weak & feel like they won't hold me up. I can no longer do yard work, even in early morning/evening hours. I believe the heat was the cause of a recent flare -- understand though, I was mowing 2 yards (mower is not self-propelled) at least once a week in addition to caring for vegetable & flower gardens. I thought I was taking it slow & getting cooled sufficiently when I started feeling hot but evidentally not. :-(
I believe as long as I stick to early morning/evening hours I can still do flower & vegetable gardening (which can be done in smaller bites) but we've hired the yard work out.
I've never been a hot shower person but a warm shower doesn't bother me. Haven't tried a bath since dx so don't know how my body would handle that.

dx 10/2008
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Old 07-15-2010, 11:52 AM
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agate agate is online now
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dee-dee, WELCOME to the board!

I've read up on heat and MS for quite a while, and the notion is that for most people--SNOOPY may be an exception--the worsening of MS symptoms during heat is a "pseudo-exacerbation" and is a passing thing.

I'm not convinced that prolonged and frequent exposure to heat that you can't escape from doesn't do harm, though.

It seems to be OK to be exposed to some heat as long as you can get out of it as soon as you start feeling symptoms coming on.

For instance, when I lived in Chicago, if I entered a room that was very hot and felt myself going weak and my vision was blurring, if I flung open a window and made sure cool air was reaching me soon, I could make the symptoms go away.

If the outside air was hot, of course, opening the window wouldn't help. The answer then was to turn on the AC or fan immediately and make sure I stayed near it for a while.

But if you're in heat you can't get away from, you're in for worse trouble, in my experience.

garrysgirl, about the hot baths--I have arthritis too and hot water often helps with pain and stiffness. I get into a hot bath but try not to stay in it for very long. Just long enough to ease the pain and stiffness.

SPMS diagnosed 1980. Avonex 2002-2005. Copaxone 6/4/07-5/15/10.
Old 07-15-2010, 12:19 PM
rdmc rdmc is offline
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Heat makes me weak, and quickly it becomes a "sit down or you'll fall down" type of situation. Also, I start to feel a little panicky...maybe because I know what will happen if I don't get out of the heat. Once I cool off, I'm usually okay after awhile.

Try googling Uhthoff's phenomenon and you'll get more info on heat and MS.
Old 07-15-2010, 05:18 PM
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Pnut Pnut is offline
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Originally Posted by dee-dee View Post
We live in Az. The heat is awful. I don't know if it is the heat that is making things harder for months. I can hardly walk for about 3 weeks now. It's hard to lift my legs to walk. Any ideas?

Any weather extreme can be bad for ms. I LOVE heat, I crave it. This is why I moved to AZ...heat and barely no humidity. Many drs aren't aware of cold being a problem with ms mainly because the ones that can't take the cold are a small percentage. My neuro was very surprised when I told her I was moving because I needed the heat. She jokingly suggested that maybe she'd given me a wrong dx.


The way you feel now is the way I felt all winter long and some of the summer in MI. I know the ideal thing to do would be to move to a cooler climate, but the only suggestion I have is to stay inside. Look into cooling vests.

How long have you been in AZ?
No weapon formed against ME shall prosper
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Old 07-15-2010, 07:05 PM

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The answer is that no one really knows.

IF you want to research the heat problem for people with MS, it's called Uhtoff's Phenomenon. It just means your symptoms get worse when in a hot bath.

Like Snoopy, my first exacerbation happened during exercise and intense heat, so I'm not sure if it can cause them but it seems possible.

During my first exacerbation, before I knew it was MS, I would take a bath every night and go in the Jacuzzi on weekends for stiffness. Since DX, I have stopped that, although I'm sure I could still do it - Just to be on the safe side. I have started exercising again - there's a definite benefit, so I will do it very carefully.

Your doctor is right. You might try a dip and see how you feel, but it's probably not going to give you an exacerbation, but may give you a pseudo exacerbation.
Old 07-15-2010, 10:17 PM
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JoanFrances JoanFrances is offline
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Nice to meet you dee-dee

Originally Posted by dee-dee View Post
We live in Az. The heat is awful. I don't know if it is the heat that is making things harder for months. I can hardly walk for about 3 weeks now. It's hard to lift my legs to walk. Any ideas?

Dee-Dee, I have had the same problem for over a month, since the heat and humidity has been high where I live.

I went to my doctor last week, he increased my baclofen for the increased spasms, and put me on neurontin for my legs. I got my very first full nights sleep in over a year. Check with you doctor and see if you can offer you some relief

Good luck, let us know how you make out

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