Surprisingly to me, I still use my hot tub, and I was wodering if other MSer's or suspected mser's do? (I know most can't)
I have suffered ill effects following longer hot tub sessions (half an hour), but if I keep the time in to about 15 minutes I rarely feel any numbness or tingling, etc. (although the other day I felt like I was getting an electric shock in my shoulderblade, so I got out immediatly).
I keep it set at 101 F.
On the other hand, I had a terrible time with the ambient heat last summer. I don't have air conditioning in my house, so I put cool water in my hot tub and used it like a kiddie pool. It's just a little two person tub, so it's quick to change the water.
Seems like I can tolerate heat for short periods, but if I stay hot too long it takes its toll. From what I understand most MSer's can't take any heat.
The days of the hot tub are long gone. The last few times I nearly broke my neck getting out. I had to crawl out and crawl into bed. Vision affected, numbness, pins/needles, electric shocks, dizziness, etc... Virtually everything is affected. The water, no matter hot tub, bath, shower, does not have to be really hot either. Even being out on a hot day gets to me. This is especially frustrating because really hot soaks helps give temporary relief from back pain and helps to relax me. Oh well. At least I can still relax and enjoy a glass of good single malt once in awhile!
In the olden days, well before MRI technology was developed, the test for MS involved plunging the person into a hot bath tub. If they suffered ill effects from the heat they were then given a diagnosis. Problem is they also found that this test was leaving permanent damage and fortunately it was discontinued. It was similar to the Salem witch trial test - dunking the women and if they drowned it proved they weren't witches.
We don't know the tipping point of when the heat is too much and will do damage that can't be reversed. I am not prone to playing with fire or hot water in this case.
What you describe happening to you certainly doesn't sound like nothing is happening to you when your use your tub.
Whatever you do, please make sure you have someone around to help you out in case the worst happens to you. Sarahsmom had to be rescued by a stranger last year when she decided to try her luck with a hot tub. I would hate for you to be stranded/stuck.
I do miss those leisurely soaks but know that I am much better off without them.
i still like the steam room but have to take a cold shower or ease into a cool pool.
to this day i still will get missed up vision, find it more uneasy to walk about, etc afterwards some times. there have been times i can't get my lock opened aftewards. i think i see the numbers ok, my mind thinks i'm hitting the numbers but i guess not. i have to wait a little while and keep trying and i get it.
some years ago in california when this first happened i panicked. i felt compeletly retarded and lost. i know what is happening now but i am always a bit shaken when things dont work.
i just now made it back to the gym for one week with mild workouts and few laps in the pool after being away. the periods of "away" from the gym are getting longer and the workouts getting milder -- and that makes me uneasy.
Oh MIke, Mike, Mike. Please gauge your symptoms carefully while in the hot tub and by all means don't wait till you start feeling something before you decide to get out.
I am the Sarahsmom that Lu mentioned in her post above and I was completely shocked when I my last trip in a hot tub almost 2 years ago be one of the most scariest things that ever happened to me. My hot tub, sauna, steam room days are OVER forever. I miss it so much as it was a treat for me after my workouts.
So pleas be careful if you are still going to brave the spa and don't wait till it is too late and you have to have someone rescue you out of the thing.
I love soaking in a bath/hot tub! That's one of my few non food related things that I love to do, and I'm determined to still do it, although I don't have a nice big bathtub now that we've moved. But before, almost every night I would soak. The biggest symptom that would come about when I got hot was my optic neuritis--my vision would get fuzzy in the affected eye, but interestingly enough, after time had passed (30 min maybe?) it would actually go away. I'm not sure if my body got used to the hot temperature, or maybe the water was cooling down, but it was like my nerves figured out how to function again. I don't know.
This topic brings about a question that I've been meaning to ask my doctor but always forget. This Uthoff's phenomenon, of returning symptoms when we get hot, is this a true pseudo-exacerbation (in which case isn't real damage but you get the symptoms) or is this additional nerve damage? I was under the assumption (which may be totally incorrect) that it isn't more damage than when you first got the relapse. For example, under normal circumstances, my optic neuritis has gotten better, but I only get symptoms when I get hot, like take a hot shower. But, as soon as I get cool, the symptoms go away. I thought it was because our nerves "run" optimally at a certain temperature, and when we go significally above that, the current damage that is still there gets the circuits scrambled again. At normal temperature--normal, but at a higher temperature--symptoms. I'm thinking it isn't continual damage but rather a sort of reliving of the current damage that is there, if that makes sense. In other words, I believe it is a pseudo exacerbation in which symptoms come back, but it isn't NEW neurological damage. Of course, I could be completely wrong but that is what I believe, which is why I continue to take hot showers/baths, because I figure it isn't causing me any MORE damage.
If it was causing more damage, then does that mean we MS patients should never excersize? Cause anything that would raise your body temperature would do that. However, depending on the symptoms that "come back" when you get hot, I can see how enjoying a hot tub can be dangerous, in that if you get severely weak or have trouble moving your limbs, you may not be able to get out.
So, I guess what my question is, besides the whole not being able to move/get out of the hot tub (which is bad enough, of course), is getting hot dangerous for us MSers in regards to neurological damage?
I didn't start my own thread as I figured my question pertained to this topic.
That question most certainly does fit into this thread.
The Uthoffs is a pseudo-exacerbation - it is the display of problems that already exist, as I understand it.
Our body is constantly working at making repairs to our damaged myelin. But each time that repair is done, the pathway is degraded a bit more. The repair jobs are never as good as the original myelin. When we overheat, that repaired pathway is not as efficient and our symptoms reappear, usually temporarily. The overheating changes the velocity of the signal that the nerves can transmit.
I think the question was more about permanent damage. We understand that getting heated up is going to temporarily exacerbate our sx's, but are we actually causing permanent damage to our bodies by suffering these mini exacerbations??
You wrote that there may be a tipping point where we can't reverse the damage. So lets say I take a bath. My sx's of blurry vision and tingling get worse and I feel weak when getting out of the bath. I always was under the impression that the worsening of sx's will always go back to static when I cool off. That is what happens usually. The bath relaxes my spastic and painful muscles so I suffer the consequenses.
Are you saying that there is a possibility that at some point the worsening of sx's from the heat will NOT return to static when I cool back off??
P.S. I never take a bath unless DH is home to care for me :-)
Heat has never been my friend. I've been in a hot tub and sauna once for just a little bit and hated it. I've never been a hot shower/bath person, but in the last few years I've had to keep the temp at what you would use for a baby...warm but not hot. Otherwise i start seeing spots floating in my vision and I get "twitchy".
I think one of the reasons I was diagnosed this past week is I happened to see my doctor as I was showing Uhtoffs. Admittedly, I was a bit of a mess LOL
"They knew of the fatigue and the intolerance to heat. In fact, a Dr. Uhthoff is famous for discovering that he could reproduce blindness in a person with MS who had optic neuritis by placing the person in a tub of hot water. This was a major diagnostic test used for MS until about three decades ago. The “Uhthoff Phenomenon" is often now referred to as the reproduction of ANY MS symptom on exposure to heat. The heat can be increased environmental heat, a fever, a hot shower or bath, or exercise."
There is an excellent summary of heat intolerance over at
The author makes the distinction between heat related problems vs FEVER related problems.
I'm coming up empty handed with anything to back up the "permanent" part of my statements - I'll keep looking because I do know I have read it somewhere that the hot water bath test was doing damage.
I'm having to rethink this whole thing about heat - hopefully Quix will pop through and give her take on this as well. In the meantime here are two good sources for more info -
http://www.msrc.co.uk/index.cfm/fuseaction/show/pageid/1708 - has good information about heat and MS
from - http://www.fortnet.org/NCMSN/0805.html
"BEATING THE HEAT
MS Lifelines Newsletter, July Issue
According to some studies, most people with MS are overly sensitive to heat. Even mild overheating may cause a temporary worsening of existing symptoms or the reappearance of symptoms experienced in the past. The most common symptoms related to heat included blurred vision, muscle weakness, and fatigue. MSLifeLines Ambassador Sarah experiences fatigue, weakness, and sometimes loss of balance when she becomes overheated. “Since I know the heat is causing the symptoms, I know how to handle, it,” she says. “I try to stay in air conditioning, drink a lot of water, or use an ice pack to cool off,” says Sarah. Maureen, who lives in Little Rock, AR, says “the humidity is very high where I live. I often limp and feel tired.”
These temporary symptoms may be caused by a slight rise in the body’s core temperature (as little as 0.25 degrees F), because damaged nerves function less efficiently at higher temperatures. In fact, heat tends to make everyone’s nerves work less effectively. This is why applying heat to an injury can help relieve the pain. Raising the temperature of the injured area reduces the ability of these nerve fibers to send their messages. When a person has MS, the movement of nerve impulses is already impaired. Therefore, the heat’s effect on the central nervous system may be more pronounced in someone with MS compared to someone without MS.
There are three things to keep in mind with regard to heat and its effects on people with MS:
* Symptoms caused by heat may be temporary and may not necessarily signal an attack or exacerbation
* Heat exposure does not cause further nerve damage
* Symptoms caused by heat tend to go away once you cool down (usually in half an hour)
But while heat symptoms shouldn’t worry you, it is important to take extra care when they occur. Be sure to talk with your doctor if these symptoms persist longer than an hour.
Three ways to keep your cool. When it comes to coping with the heat, there are three general approaches MS specialists recommend:
* Adapting your lifestyle to avoid very hot situations.
* Maintaining hydration so the body can regulate temperature.
* Using external mechanisms for cooling.
Adapting your lifestyle – This can be as simple as avoiding outdoor activities during the hottest hours of the day. Try and schedule your outdoor activities before 10 am or after 4 pm. And stay out of the direct sun. "I try to go on runs in the morning," Patrick says, "because the heat effects my vision and balance." If you must be in the sun, bring an umbrella to provide your own portable shade, and wear a wide-brimmed, well ventilated hat. Swimming is a great activity for keeping cool if you have to be outside. And it might be a good replacement for other activities you enjoy - such as walking and biking - that you just don't tolerate as well in the heat.
Perhaps the most obvious change you can make during the hottest hours of the day is allowing yourself an air-conditioned "siesta". "I try to schedule a nap on hot days," Sarah says. Have a leisurely lunch. Or go to the movies! In the summertime most theaters are air conditioned to a satisfying chill. "Lots of museum visits are on the agenda during the hot months," Joe admits. You can also read a book like "One Particular Harbor: The Inspiring True Adventures of One Woman with Multiple Sclerosis by Janet Lee James.
Maintaining hydration - It is extremely important to drink fluids when it's hot because the body loses fluid through perspiration and evaporation. Carry a bottle of water with you all the time and drink from it regularly. "I strap a water bottle to my belt so I always have it," Joe says. Some doctors advise people to drink fluids with some sodium in them, such as a sports drink. These drinks provide more of what your body needs to cope with heat. "I always keep a bottle of water within my reach," Patrick says. "And eating popsicles works for me. I go through case of popsicles every summer," he admits.
Many patients make the mistake of cutting back on fluids before they go out, to accommodated their bladder But it's much better to deal with bladder issues directly by planning trips to the bathroom or using medications as directed by your doctor, rather than by cutting fluids. Decreasing fluids not only reduces the body's tolerance of heat, it increases the risk of bladder infections, too. Be sure to ask your doctor about maintaining hydration and managing bladder issues, as there may be specific recommendations just for you.
Using external mechanisms for cooling - Even if you reduce your exposure to heat and maintain hydration, there will be times when the heat is unavailable. What then? Many people wear a hat or bandanna soaked in cold water or containing ice chips. "I'll place a cold compress on my neck," Maureen offers Others get relief by maintaining spritzing themselves with a water spray bottle, sucking on ice chips, or putting a wet towel around their neck when they have to be outside in the midday sun. "I freeze fruit so I'll have something that's cold and healthy to eat, Sara says. "And I treat myself to ice cream cones, milk shakes, and smoothies," she adds. If you'd like to learn how to make your own smoothies and shakes, try Summer Smoothies: Over 130 Cool and Refreshing Recipes by Donna Pliner Rodnitzy.
In addition, there are products you can buy that are designed to help everyone stay cool, which are sometimes used by people with MS. These include:
The CoolSport Vest (310-618-1590 or www.coolsport.net) which works with a unique coolant.
Steelevest (1-888-STEELEV or www.steelevest.com), which uses ice packs to cool you.
Personal Cooling System from The Sharper Image (1-800-344-4444 and www.sharperimage.com), a battery-powered device, which is worn around the neck, uses a tiny, quiet motor fan to create evaporative cooling.
While effective for general cooling, it is important to note that these devices are not specifically designed for people with MS, and their mention here does not constitute an endorsement by Serono and Pfizer. Before using any of these products, it's a good idea to consult your doctor.
There is also evidence that "pre-cooling" the body may be an effective way to deal with summer heat and humidity. Some medical researchers studying the most effective cooling methods for people with MS now recommend immersing the legs up to the thighs in tepid or lukewarm water, and then adding cold water until the tub reaches the temperature of a cold swimming pool. This results in something they describe as a "heat sink", as blood circulates through these pre-cooled parts of the body. Patients report having up to four hours of cooling effect after just 20-30 minutes of soaking in this bath.
Ask your doctor for specific suggestions to deal with heat. You may even want to discuss the ideas in this newsletter with your doctor. Together you can decide what will work best for you. You don't have to suffer and you don't have to be a hermit just because you have MS.
* Chances are that once you reach the point of thirst, you're already dehydrated.
* Watch out for humidity. The evaporation of sweat helps to cool the body, but humidity limits the amount of evaporation. "
Thanks for all of the research, Lulu. I was thinking that Uthoff's phenomenon wasn't causing more nerve damage, but just exaggerating the damage that is already there, but I didn't have any "proof". It makes sense, but I know at least for me, symptoms that occur when I'm hot go away when I am cool. It is interesting too, that after a certain amount of time at an elevated body temperature, my nervous system seems to compensate, because those symptoms (usually optic neuritis) go away. I did the Bike MS last year (not the whole thing, but a portion of it, 55 miles!) so I was on a bike for 5 hours. I definitely didn't have optic neuritis the whole time. Of course, my husband had to help me off my bike at the end, but I think that was just regular muscle fatigue!
Hope everybody is enjoying a great Memorial day weekend!
I have to admit..if given the chance to get in a hot tub, I probably would. I've only been in a hot tub a few times and I loved it. The first time was before my body went wacky on me. The second time..there was issues. I couldn't lift my legs to get out of the tub. If it wasn't for my husband being there, I would have been stuck.
Will that detour me from going into another one..probably not. I'll just make sure I have a hot tub buddy.
To bad they don't use that as a diagnosis tool..maybe I could get a diagnosis ;)
Thanks for all your research Lu. I was having trouble getting much info.
I did try to get in an actual Hot Tub over the weekend at a hotel and there was no way I could stay in it. I could tell after just a few seconds.
I will still take my baths where I can control the temp and have hubby help me if needed.
If you find any new info, please let us know. It is very curious.
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