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Feeling Beat in the Heat?

THESE ARE MY LONG AWAITED NOTES......

Almost all people living with Multiple Sclerosis have problems with heat sensitivity symptoms. Normally, heat exposure does not cause permanent damage, but it can leave you feeling debilitated and unable to function fully.

We often have options whether we are going to be in the heat   – we choose to go on that vacation to the beach or take the children to the amusement park.  We can also often hide indoors during the worst of the season and avoid the worst of the heat.  But many times there isn’t a choice and we must go to work, mow our lawns, sit through an extra innings Little League game or work in a place that is not air conditioned.  

There are a number of strategies the experts recommend to help control the effects of heat.   The following are from my notes of several recent MS talks on the web, via telephone and in person, in addition to my own observations and common sense.

First, we need to understand that most people with MS are heat sensitive because of the scars in our central nervous system.  Where we have demyelination even in the spots that are repaired by our own system, those areas do not insulate the nervous system as well as the original myelin coating.  Increases in our body temperature can cause an almost immediate change in our reaction to heat.

What is a normal body temperature?  It fluctuates widely, but normal is generally considered within a degree of two either side of 98.6 degrees Fahrenheit.

Heat exposure can cause previous known symptoms to be reactivated or new symptoms to appear.  The good news is these symptoms don’t cause permanent damage, but nonetheless can put you into misery for some time.

We also know that often People with MS have trouble regulating their body temperature and the sweat glands don’t work like they were intended.  We need extra aids to help our body adjust to the heat.

There are internal and external heat sources, many of which can be somewhat controlled or altered.  Internal sources of heat can come from infections (fever), spicy food and hot beverages.  Menopausal hot flashes are an excellent example of an internal heat source that cannot be easily regulated.

Medicines can also cause fluctuations in how our body functions, so be sure to review your drugs and their side effects with your doctor/MS nurse.

#1 IMPORTANT COOLING TIP
Hydrate.  Yes, I know the temptation to withhold liquids because of bladder problems associated with MS, but don’t do it.  We need liquid and lots of it, especially during the dog days of summer.  So drink and then drink some more.

Drink plenty of cool drinks, preferably water.  Limit the amount of caffeine you consume.  Sodas and juices don’t quench thirst as much as water.  Even though that ice cold beer tastes great going down, it can help to elevate your temperature.  

Now is the perfect  time to indulge your inner child and eat frozen treats such as popsicles – they serve a dual purpose and cool and hydrate simultaneously.

KNOW THE WEATHER FORECAST FOR THE DAY

Be strategic about your exposure – do your errands that require you to be outdoors early or late in the day.  Avoid the mid-day heat- specifically between the hours of 10 and 2 when the sun is at its most direct exposure.  Humidity can also play a big role in how your body reacts to the heat.   If it is going to be the record-setting day  perhaps you need to rethink your plans .

COOLING CHOICES

NASA may be an agency of the past now that the shuttle has been grounded, but one legacy left from space exploration is the technology developed to cool astronauts and its transfer to our own use here on Earth.   It was a collaboration between MSAA and NASA in 1994 that led to the acceptance of cooling as an essential part of handling the heat for people with MS.

There are several types of cooling, including active cooling, which involves either batteries or electricity to power the cooling unit.  Evaporative cooling, which allows the body to cool by evaporation can also be extremely effective. You can create your own evaporative systems with a misting bottle and a fan or breeze.  

PREPARE TO BE IN THE HEAT

Pre-cool your body by taking a cool/cold shower or do an ice water plunge with your feet and hands to cool your core temperature before venturing out.  The benefits of precooling your body can last up to two hours in regulating your internal temperature.

CLOTHING CHOICES AND OPTIONS

Dress appropriately with light color clothing.  Select clothing made of cotton or visit the sporting goods section and purchase athletic clothes that have the property to wick moisture away from the body.    Jockey has a line of underwear that claims to cool the body by up to 3 degrees and I am waiting to hear from someone who has actually tried these to report if they work.

Invest in cooling garments.  These can be the simple neck scarves or wrist bands that you presoak in water or the more complex cooling vests. MSAA and MSF both offer cooling garment programs to provide them at no cost if your income eligible.  

There are many commercial options available for these specialized clothing choices – you can find many options by searching the internet which wil turn up numerous options.  Confused by the choices?   Check out activeMSers.org for honest consumer reviews.  

You can also create your own cooling garment by moistening the clothes you are going to wear – a wet t-shirt will create your own evaporative system that will help to control a rise in your body temperature.


TAKE CONTROL OF YOUR ENVIRONMENT

No, we can’t fool Mother Nature, but we can alter it a bit with some planning.

Take frequent breaks if you are doing something active outdoors or indoors – give your body the chance to cool down.  We still need to exercise – we need to keep moving, even if it is summer.  Take cool down breaks and don’t push yourself to the point of being overheated.  Avoid getting to that point of no return.

Carry a chilled gel pack in your pocket.  Nothing says “cool down” any quicker than strategically placed ice packs. You can buy mini-sized reusable ice packs that are designed to fit in children’s lunch boxes.  These are the perfect size to slip discreetly into your cloths and will provide 2-3 hours of cooling effect.

If you are driving some distance before you will be out of the car, consider getting a small portable cooler that plugs into the adaptor plug in your car (formerly known as a cigarette lighter outlet!) . These units can help to keep the gel pack frozen/chilled for longer periods of time.  

Create your own shade by carrying an umbrella.  Think of all the pictures you have seen of exotic places where the women carry an umbrella for shade – maybe it’s time for those of us in the western cultures to adopt this practice.  

Simple activities such as meal preparation can create extra heat, so consider preparing your meal on the grill outside, or drag out that crock pot and cook that meal in one pot that you don’t have to stand over and stir.   Consider making multiple meals at one time in the kitchen – freeze meals for future use, reducing the number of times you have to stand at the stove.


WORD LIMIT EXCEEDED - CONTINUED IN NEXT PART OF THREAD
38 Responses
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Avatar universal
An addition to this thread - I'll add it to the HP as well.....

It's not in our head .... we really are affected cognitively by the heat.  Neurology Now, April/May 2011 has this brief paragraph reporting from the American Academy of Neurology meeting from April:

"Warm weather is known to worsen symtoms in people with multiple sclerosis (MS).  A new study looked specifically at its effect on thinking. The research team did cognitive testing on a small number of people with MS and those without the disease.  Those with MS scored 70 percent better on cooler days than on warmer days.  This difference was not see on people without MS. "  

That is a huge number - 70% improvement in thinking when we are cool is very significant.
Helpful - 0
Avatar universal
A hydration tip - look for coconut WATER  not coconut milk.  It is in the news these days to be a great source of electrolytes and potassium and excellent for hydration.  

It's a natural alternative to gatorade or those other drinks.

In the islands it is  also a well known cure for hangovers, not that anyone here would need that use.  LOL

You can get it at Trader Joe's for sure and probably health food stores and the big grocery stores.

Helpful - 0
Avatar universal
Dennis, you asked where to get those small gel packs - here are a couple suggestions.

At our local Meijers store (combined grocery/hard goods super store) they have small lunch box containers for kids to carry things in annd keep them cool.  These are like tupperware or rubbermaid containers.  They make ones that come with the small freezer pack  in them and cost around $5.  You would get the gel pack and the container!

I was at CVS (a type of chain drugstore) yesterday and checked their ice and hot packs.  They have a variety of reusable cold packs in all sorts of sizes.  They are in the $5-10.00 range.  

I especially like the brand called PEAS.  They are modeled after that tip that all moms know that a bag of frozen peas can be used as an ice pack and it is flexible and molds around the area that needs ice.  They have small PEAS for children and they are colorful and available in fun shapes like a starfish.  They also have medium and large size PEAS.

I hope these shopping tips help.
L
Helpful - 0
429700 tn?1308007823
Lulu, thanks a million for the tips.  I didn't know about the ice water tip for the hands and feet before going out.  I'm going to try it!

I too have trouble sweating.  When I start getting red as a beet, I have crossed over to a danger zone!  It is hours before I can get my body temperature back to a normal temperature--even with AC and cold drinks.  I've gotten really, really sick in the heat.

Also, I have to be very careful out in the heat when walking around or going up stairs or inclines.  I love flip flops in the summer, but I find I don't raise my feet high enough without catching a crack and stumbling.  I stumble way more in the summer because I don't have the strength to lift my foot up high enough.  I can't tell you how many accidents I've had stumbling over my own feet--nearlly all in the summer!  

Thanks again, Lulu. I hope you're having a wonderful summer!
Deb
Helpful - 0
1253197 tn?1331209110
Thanks for really helpful and interesting post. You said that it took you hours to write and I can understand why and this is just another example of your dedication and giving out to all of us on the forum. I just want to say an enormous thank you for this and all that you do.

love and hugs

Sarah x
Helpful - 0
1658667 tn?1310091382
Thanks for all of the suggestions Lulu. When I went to my 2nd opinion appt. about MS, I asked the dr., "Can you at least tell me how to take care of my symptoms? For instance, how can I not get so hot"? His only response was, "Well I know some of my MS patients use a cooling vest. You can google it."

I wish I could have paid you instead of him!!!! You gave MUCH better advice!
Helpful - 0
Avatar universal
I was just out in the yard watering tomatoes and roses - stupid to do at mid day when the temps are in the 90's.  I did preshower in cool water, wore light clothes and my neck wrap, but could only make 50 minutes before I retreated to the A/C.    We have to be smarter than I just was when it comes to the heat.  :-)
Helpful - 0
559187 tn?1330782856
Very timely and very helpful.  Thans for taking the time to put this together.  

A friend of mine told me about a clip on battery-operated fan that is only $15.  It's nice to have friends who want to try to help with heat issues.  

Thanks again Lu.

Julie
Helpful - 0
211940 tn?1267881266
I have several heat related problems.

1. In my area our temperatures are staying at or near the 105 degree range, and that's in Kansas.

2. Even if it's hot, I'm freezing, my room temperature can be 84 degrees, but I still sleep with a cover sheet and two blankets folded in half, making 4 covers over me, and I'm still cold.

3. I can see by the postings that others have trouble sweating too.
Helpful - 0
Avatar universal
bump because really hot weather is in the forecast in the coming week.
Helpful - 0
Avatar universal
Ess, I don't sweat anywhere  visible. I do sweat under my breasts even with a bra on, and that is it.

I've not thought about it but will consider MSers as an option.

Helpful - 0
Avatar universal
Actually sweating is VERY easy for me, too easy. I don't think it's abnormal, though. What is abnormal is how hot I get when other people are comfortable. Sometimes it's like one long hot flash, and I'm way beyond that point. In fact, never had that problem.

I've read that some PwMS cannot sweat, or only sweat on one side of their bodies.That is not a good thing. So I guess I'm lucky to be able to get it out since my body temp is out of whack.

As for the 'PwMs' usage, I've seen it a lot on the web. I prefer MSers, just easier. I'm not big on political correctness in usage, such as making sure the person comes before the disability. It's okay to do it, just for me not okay to have to do it. Sounds like something dreamed up by some Sociology prof somewhere, then people fall lockstep into it. Well, I should say 'Don't get me started!' except I've already started, haven't I?  :-)

ess  (Not a PC person)
Helpful - 0
Avatar universal
I wish I could claim authorship of PwMS as my own - it is widely used in MS communities.  I really dislike saying MS patient because it makes it sound like that is al there is to this person.  I hope that makes sense ....


I was also surprised to learn that sweating isn't as easy for PwMS.

Helpful - 0
Avatar universal
Thank you so much for compiling all of this information.
  
I never knew that People with MS (kudos to you for being politically correct - I learned in one of my college courses that you should always try to put people first, before the disability - ie "a person who is blind," rather than saying "a blind person") have trouble regulating their body temperature and the sweat glands don’t work like they were intended.

I'll have to keep all of this in mind for sure!
Thanks!
Kelly
Helpful - 0
198419 tn?1360242356
The tip that works bigtime for me is the icy snack/drink, like italian ice, etc. Something that lasts awhile, unlike ice cream that melts too quick, and you don't get cooled down, just a belly ache.

I find if you are going to brave the heat, slowly build up some tolerance 1st. Don't just go out in it if you are not usually in it. That's a general rule for anyone, but for me, I can tolerate it more if I've been in it,then get into some shade, then go back in it, etc. And, then know when to get out and stay out until another day.

Don't be afraid to sweat a little if know your know your limits.
-shell
Helpful - 0
Avatar universal
I would love to hear from some of you who might be trying these tips and let me know if they have helped.  

Keep in mind the only way we can truly beat the heat is becoming a recluse and staying indoors in air conditioning.  That just is not a good option for a variety of reasons.  But these tips should at least allow us to venture out for short stretches and function better.

I can HP this, Mary, and then you can edit the document there.  That gives you lots of time to think through your additions - I look forward to hearing them.


Helpful - 0
1045086 tn?1332126422
For sure Lu!!  This flows as smooth and natural as a cool spring fed stream.  I know it required a huge effort on your part to create this resource just so we can come around periodically for a quick dip into info we need.  Thank you, thank you, thank you.

Yes, HP it
but could you drag your feet a little?
I have a few small additions you can edit (but I'm behind the clock yet again).
Besides, we can keep bringing it to the top here for a while, right?

Mary
Helpful - 0
198419 tn?1360242356
Well done, Lu!

HP it baby!
Helpful - 0
Avatar universal
Great info Lu, thank you so much!!!  This will be a wonderful Health Page!!

It was 110 here yesterday with the heat index, and I'm melting!!!  I can't believe it's only July with August still left to survive.

I will follow some of your tips and hope I can manage to cool down some.  It's hard to do at work, and sometimes I can feel myself starting to "short" out" from being overheated.

Thanks again, Lu!!!

Helpful - 0
987762 tn?1671273328
COMMUNITY LEADER
Sorry Lulu, i'd written my tips but cut and pasted over the top of my note to you. LOL posted before i noticed, whooops heres the bit i missed...

Well done Lulu, once again you've turned your notes into a really helpful informative read, so is it going to be a health page? (hint hint) I dont know if you realise how much we get out of and appreciate all the time and effort you put into doing this for us. So from me to you THANK YOU!
Helpful - 0
Avatar universal
Dennis, I just saw them yesterday in OFFICE DEPOT with all their school supplies.  I'm thinking they were either one or two dollars.  I had not seen these small ones before.  They were about the size of an index card and not very thick.  I'm thinking  I will go buy some tomorrow.  

One part I left out of the write up was the different types of coolants available.  There are phase change gel packs that change into a cooling pack at about 57 degrees F -they are quicker to freeze but don't stay frozen as long. Their temp is much more comfortable on our skin and you don't risk damage from direct contact on your skin.

Then there are gel ice packs that freeze at 32 degrees F - they take longer to freeze and last longer before thawing.  


There are also other types of gel packs  - google gel pack or phase change gel pack and be amazed at the differences.  I was.
Helpful - 0
382218 tn?1341181487
Yes, never seen the small gel packs, on a really hot day they might be useful in a bra.  Seriously!
Helpful - 0
645800 tn?1466860955
Lulu,

  where do you find those gel pack for kids lunches? I never seen anything but the larger one in stores

Dennis
Helpful - 0
Avatar universal
Thanks for the kind words because I did put some serious effort into pulling this together.  This was the compilation of three or four different talks.  There was  a ton of information to share, I was just looking for the solid block of uninterupted time to put it all together in some format that might make sense.  

In addition to DV's tip about getting A.C as a medical expense, be sure to check with your local utility company if there is a subsidy for the electric cost to run it, since it is a medical necessity.  I believe California offers this but don't know about other states.

-L


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