I too have had my legs collapse after getting out of a hot tub/hot bath/hot spa. One of the MS books that I read said in the old days that was a common "test" to see if someone had MS. However, after a patient became paralyzed as a result of the test the medical community stopped doing the "test".
I had been the focus of jokes because of my inability to "tolerate" a hot tub. I joke that if I had been tested 20 years ago I would be dx'ed with MS. Now with shy lesions that hide from MRI machines I am in Limbo Land.
So I won't "test" myself anymore with the hot tub. And I also noticed that in the therapy pool (which is kept warmer) I have to stay in the deep end where it is cooler.
However .... I do like the idea of sitting in the hot tub the morning of or night before a dr appt ... hmmmm .... probably not a good idea ... really not a good idea ....
Cheers, Jules
No, I had to give up running about 4 years ago when it got to a point where I could only run a block, downhill, and have to rest. I decided it was just to painful (not physically) to only be able to run a block when, like you, I was running 3 miles 3x a week. The problems with running and my legs feeling like dead weight didn't happen all of a sudden for me, but over a few years. I went from running 5 miles to 3 miles to 1.5 miles before I would hit a wall and couldn't get my stamina back. It is so sad as running gave me peace of mind as much as it helped with weight control. I've gained nearly 40 pounds since I stopped running.
I'm not thinking that it is safe to go back because if your legs are going out on you then you are an accident waiting to happen. My orthopedic surgeon who did a surgery on my ankle last year said that with my gait and balance problems I would be asking for real problems if I tried to run again. I've taken his advice and given up on the idea of ever going back to it. What about you? Are you at the point of making a decision about it?
Julie
> Are you still able to run?
Kinda... I can run, but not as fast as I used to, and after about half a mile, my legs stop working. My right leg feels like it's made out of rubber or wood, and I have to throw it forward with my hip. Lately, my left leg has started 'going away' too - which is what happened to me Monday.
I really miss it, because it's such a great core workout. I always stay in better shape if I can run at least once a week. Four years ago, I was running three miles a day, three days a week. I was also 35 pounds thinner! Exercising on the elliptical trainer just doesn't give me the same workout.
Every once in a while I'll have a dream that I'm running, and I'll wake up and want to test it... but I never get very far.
Hi All,
I was wondering, what other conditions can cause heat intolerance? Does it really mean nerve damage, or can it be caused by something else? Is there any relationship between inflammation and heat intolerance?
The only consistent thing about my tests are that I show signs of systemic inflammation. The million dollar question of course is why.
Also, has anyone else experienced changes in their heat intolerance? I went from having no problem lat winter, to having heat cause lots of heightened paresthesias maybe starting in March or so, to now, a hot shower just makes me feel downright sick, flu-like and worn out.
Of course, since my body is rather cranky these days, getting too cold sets off other symptoms. So I'm drawing up blueprints for a perfectly climate controlled bubble in which to live my life. Or I will try to move to California! Better start bleaching my hair and booking the appropriate cosmetic procedures...
Hope ya'll are staying temperate!
Sorry, I have been duly chastized...............heeheeheehee
Is it the child in us that makes us do things that we know are bad? I guess with all the memory loss, I just forgot how bad a deliciously soothing hot bath could be
..............hahahahaha
Forgive me Mama Bear, I shant do it again!!!!!!!!!!!!
I made the big mistake after standing outside all day a couple of weekends ago in the cold of soaking in a hot bath.
Felt great!
However, about an hour later my temperature popped up 2 degrees and I felt like I had been run over by a truck. That put me into a 2 to 3 day fatigue-hangover.
When it comes to heat, I am definitely Bauhaus - less is more!
OperaMBACaloriPhobe
Hi all,
I think the other point we haven't made clear yet is we are talking about overheating your core - so if it's snowing out and you bundle up in several layers and go shovel the driveway you still run the risk of overheating and short-circuiting your CNS.
My water aerobics class does that to me even though the water temp is 82, we work out strenuously and when I get out I do notice a general weakness that takes a while to recover from. I can adjust the intensity level of what I'm doing so its not quite such a taxing workout.
Be smart, Lulu
Jen and Julie - They (you know, THEM?) recommend that you actually cool your body before exercising. A cool shower or wear a cooling vest for a while, before exercising. We each have to find the limits for our own condition. It is best to work up to it - baby steps upward - until we find the level of exercise that seems to overheat us.
During exercise use cooling techniques (garments, wet things that evaporate, chose times when it is cooler outside, pedal away in front of a fan, etc)
If we are feeling weak - DO NOT CHALLENGE IT - AIN'T GONNA WORK. If we get overheated cool down immediately - cool shower, cool fluids.
Do move. Do exercise, but realize that, for some of us, the levels of exercise we used to be able to do are just are out of our reach now.
Goddess - no, not everyone will be very sensitive to heat. But because one of the basic problems in MS is demyelination, and demyelinated nerves malfunction,when the body's core temp rises, we should all be cautious. Some researchers are saying that with MS, we no longer regulate our body temps normally. I'll have to do more reading on that.
I will not be the one to give you guidelines about challenging this. I do know that not all MSers have heat issues, but I do not know if the ones that don't should temp fate and wallow in a hot tub.
quix
Okay Mom, FINE!!!
*takes Mom off her Christmas Card list*
: )
I'd really like to know what percentage of MSrs have that severe a reaction to heat. Does anyone know? As Meregodess says, some can't stand cold. I don't seem to have either problem, which makes me wonder about me and MS.
ess
I never thought realized that the heat buildup during exercise can have a similar effect, but you are right. I used to be a runner but had to give it up about 5 years ago because my legs started feeling like lead weights when I would go out for a run. It kind of crept up on me then one day I realized I couldn't do it anymore. Are you still able to run? When I first gave it up I was pretty pissed off. I would see other runners and criticize their stride and foot placement. Later when I stopped being pissed off, I was would quickly and respectfully get out of their way so they don't have to run around me. Now, I just watch a runner and think "I used to be able to do that".
If you are still able to go out once-in-awhile to run, good for you and keep doing it as long as your legs will let you.
Julie
DON'T DO IT!!! I think that if you do try the hot tub, and I don't recommend it now after my own experience, at least don't do it if you are by yourself. It was so embarrassing to have to ask a total stranger to help me out - very embarrassing, but thankfully she was there when this happened.
I don't know what to say about the banana and mayo sandwiches...I'm the type who will try almost anything at least once. Hmmm...Sounds really interesting....But not hot tubs for me.
Take care and thanks for sharing this with us.
Yup.
These days, any kind of heat will do it to me. Too hot of a shower, the bed's too warm, even exercise gets me worn out and shaky. I stay away from the hot tub and sauna - I know better!
I have to be REALLY careful not to get the shower too hot, or I'll be useless for a couple of hours. Today I decided to exercise outside, because I felt good this morning. That'll teach me.
I was running, albeit slowly, and about half a mile in, my leg went away. Rather, I couldn't feel my leg - it was still there. It was still doing what I told it to do, but it was definitely not working properly. I slowed down and walked the rest of the mile, then went inside to recover.
After a few minutes, I was feeling better, but my legs still didn't work right. Rather than taking this as a warning, I went back outside and tried to run a little more! I quickly realized this wasn't going to work. All the will in the world wasn't going to make my legs move any quicker than they already were. So I walked the rest of my thirty-minute workout, went back inside, and got ready for work.
Phew! Guess I should have taken it easy. Neither leg was working right - the right knee kept folding, and the left leg was all over the place. It's a wonder I got safely to work.
I don't know if exercising outside is completely out, or if I just need to wait until it's freezing outside. I hate exercising when it's really cold, because my ears freeze!
Having only been diagnosed with rrms since last december, I don't KNOW if heat has been a problem for me, but everyone keeps telling me to avoid it. Everything I read says to avoid it. So....
I did. I did not spend my summer vacation laying on my pink floaty, soaking up cancer causing rays, sleeping, falling in the water and luckily waking up.....(well sometimes falling in the mud because due to the drought here, the lake levels are getting like REALLY low....)
I didn't spend my "girls" week at the beach with my friends, going to the beach everyday, running into Charleston every night, driving my drunk friends home, running over alligators in the road......
I didn't work in the yard, planting flowers etc. except at first light and last light. (Here in the south it stays hot for about 120 days AND nights, you have to "pick" your level of cool, and even then I would break out in a sweat and panic...
I MISS IT SO BAD!!! I love heat. Warm is my FRIEND. Uh, WAS my friend? I haven't really "tested" the heat theory, because I've been good, but I'm telling ya. Sometimes my body aches so badly that giant whirlpool tub in my bathroom just begs for me to climb in. "Just for a bit" it says, "I won't hurt you my lovely. I merely want to caress you with my warmth, and my jets....."
Seriously. Can I really NOT jump in the hot tub? I don't want to "try" it like some here apparently have, but I really haven't seen evidence that heat bothers me. COLD bothers me. I HATE cold. Gawd, I get cold when its 98 degrees here.
Does what everyone is saying here basically letting me know that what the docs have told me is true, and I shouldn't even try it? I mean not even for a LITTLE bit? I used to lay in there for an hour at a time, needing a fan because I'd get so warm my face would sweat. And my house is AIR CONDITIONED!! But I loved it so.
There's so much it seems that I loved and lost because of this silly disease. You'd think the LEAST it could do is let me lose the WEIGHT I've seemed to gain as well.....
Oh well, at least I can still eat banana and mayonnaise sandwiches with salt and pepper, right? right? (Maybe while in the hot tub with MEDIUM hot water for just a LITTLE while?)
Geez, how did i miss that discussion a few months ago? I know why, I just didn't think it would happen to me. That's it!
Quiz, my doctor asked the same question about whether the symptoms are gone or not. I have recovered on the most part but my legs are still numb and a little more than usual tingling. Hopefully I'll be back to normal in a few days.
Thanks you guys for helping me know I'm not the only one who had to learn the hard way not to do the hot tub. I'm sure another newbie will be bringing up this same subject in a few more months and I'll be sure to let 'em know what happened to me.
Julie
YOU DID WHAT???!!!
Do I have to take you out behind the barn and whup you, girl? You know better than that! Haven't the last two summers in Alabama tught you anything? I am beside myself and BOTH of us are upset.
STOP DOING THAT! YA WANNA GO BLIND OR SOMETHING??
Well, I'll forgive you if you promise to remember this simple rule:
Hot things are HOT.
'Kay?
Mooma Q
I SO didn't know we were content sensitive! We should of talked about over indulgence of ice cream! Maybe they'd ship us some new amazing new flavor or something!
Ok, I'll confess. When my Dr asked the question "are you sensitive to heat?" I said, "no." Just like I did so many of his questions, right before a friend of mine would chirp up and said, "yes you are, or yes you do."
This was one of the things in the back of my mind that I added to the dozen other things in the back of my mind as to why I "didn't" have MS.
Well, while lying out in the sun to PROVE it early on, I came inside, feeling just fine and like usual on the weekends inbetween things I popped in on the forum. All of a sudden, the whole left side of my back started just a pumping like a base woofer on a hi-fi stereo! It wasn't so much painful, as it was scary because it came on out of no-where. All's I could say to myself was holy ****! I only wish I could of seen it better. It did simmer, but that is my story. Other than that, I just get wiped out and lethargic for awhile.
Who else?
-Shell
Ohh, too funny! You know how our ads on MedHelp are "content-sensitive?" That means they cull key words from the psots we do and focus the adds to those words. Now the ads on this discussion are tyring to sell us whirlpools, hottubs, and saunas.
That's just MEAN!
Q
Julie, I'm so glad you mentioned this. I don't believe we have ever talked about it before (......snicker....snicker)
WHAT WERE YOU THINKING???????????!!
This is the ultimate in what we call "HEAT INTOLERANCE."
For any of you with the diagnosis or who seriously believe that you might have MS, this kind of experiment can be dangerous - in that all the function that you lose while overheated might not completely return. The warning extends to hot showers and baths and to getting yourself into hot situations (eg. hiking in the desert) that you can't get away from to cool down.
Boy, I bet this made a believer out of you! Several people here have had similar experiences and they can be very frightening. Did your strength completely return? How long did it take?
Well, we seem to need to have this reminder about every 2 months.
Before I was diagnosed and after I started with the weakness and spasticity of my R leg I was walking to try to get fit - during the summers, which aren't that intense up here. One day I went out later in the morning than usual and walked farther than usual. As I neared home suddenly my right leg became too weak to keep going. I was frightened and sank down on the curb crying. A neighbor had to help me home. I had no clue of what had just happened. And it wasn't that hot! but clearly too hot for me to be exercising in it.
The recommendation for people with MS is to cool off PRIOR to exercise, wear a cooling garment during exercise and not get to the point that your demyelinated nerves act up. The heat can cause a conduction block and the nerve signals stop arriving at their destination. This means the signal for muscles to move and contract does not arrive - the muscle goes limp. Also the signal from sensory nerves does not arrive at the brain or is squirrelly when it does get there. We get new or worsening paresthesias.
I learned from an early hot shower that a problem that I had not noticed before showed up. My right foot got tingly. When I asked my neuro if this could predict oncoming problems, he answered,
"NO MORE HOT SHOWERS!!!!!!!!!!!!!!!!!!!!!!!"
All right already!
Anyone like to share their experience?
Quix
Well would you looky there, just above, I'm seeing ad add for nothing other than "saunas!" Says it's a blow-out sale for over 60% off! Isn't that some coincidink!
Oh My Gosh!
When I read the title, I though for sure the post was from Doni, knowing how I just hollared at her!
S'sMom! Not going to do this again right???????
I know they look so irresistable! But don't do it!!!!!!!!!!!
(((hugs)))
shell
Hi Sarahsmom!!!
You and I both learned a lesson Sat. It's been a long time since I had a good hot bath and been having lots of pain in my feet and legs so I chanced it.
Like you, it was a major no no!!!!!!!!!!!! Just now getting back to normal, well my normal, anyway.
I guess nice hot baths, steam rooms, whirlpools, saunas, hot tubs and the like will just have to be enjoyed in our dreams, huh?
Learned my lesson too, but may chance it again on the day of my neuro appt....heeheehee
doni