tips for coping?

[beema36]

My neurologist says my thermastat in my bodies broken. Therefore along with my autonomic dysfunction my ms causes my body to be confused.

I can walk outside and be instantly hot walk in and immediately I am chilling. Then next thing I know I am hot. At home how I handle it as I eat crushed ice and keep a heated rice bag near to warm up. I feel like a crazy person. When we go out to eat I will usually be very hot when we are seated and then I get very very cold but if I slip on a sweater I am instantly too hot. I notice it irritates my family. My neurologist says I just need to live with it so if any of you do this how do you deal with it? I am not talking about just a little hot or a little cold they are both very intense.
Thanks in advance if anyone has insight into this. Maybe I am the only one.
Beema

[BOK2Bjan]

THIS is something I can relate to for sure.  I don't have to tell anyone around me that I'm having problems with regulating my temperature.  It becomes quite obvious very fast.  I don't get out much anymore because of this and (everything else), but I do go to church.  I always wear sleeveless and even in the winter have the option of having sleeveless once I sit down.  I get so hot when I move around that I sweat like crazy when I sit.  I take a long time to stop and have bags of ice in my purse - paper towels everywhere - battery operated fans - plus paper fans - I look like a total nut case!

Then I'll get comfortable for a nanosecond before having a "chill" with goosebumps - but that doesn't last long.  I long for those brief moments of needing to cover my arms.

You are definitely not alone with this, and I agree with all the suggestions.  I was DX with Raynauds and Erythromelalgia years ago before all the other diseases developed, so the temperature regulating system was knocked out from the start.  I've had to carry ice and towels with me everywhere I go.  It's amazing how horribly it effects your life.  

Pain, Sweating and burning hot insides, GI symptoms, and numb, aching, itching, swelling, body parts everywhere - I think I am an alien from who knows where - and I can't adjust to this planet.

I can see by what I'm responding to on the forum today, that I'm out of control.  I do ask for anyone's prayers out there.  I am truly suffering and so empathize with all of you who also are suffering.  I think often of my "new resurrected body" I'll have once I leave this earth.  God doesn't want us to suffer, and Jesus knows true suffering, so we have an advocate and savior sitting at the right hand of God.  That's is my only coping strategy and pray many will also remember this.

Blessings to you all, Jan

[MissLauraI]

JJ- just wanted to add to what you said here...I sweat a lot more in winter too. It is really weird!

Mary-"I'm afraid my expectations for improved performance may exceed his desire to change."

I LOVE this! What a great statement I am going to share this with my married friends :D

[beema36]

Lulu, I hadn't thought of that. I am sure most days my DH would at least consider trading this model for another.:)

[Lulu54]

I better be sure that DH doesn't see this post.  The next thing he might decide it's not owrth it to get my parts fixed and just trades me in for a new model.  :-)

[beema36]

Yes, Mary I need the name of the shop for a new thermastat although I doubt if they have any for this old of model.:)

I actually rarely sweat but when I do its in the dead of winter when its freezing cold. That's,just weird but then again so am I.LOL

[supermum_ms]

Well i just went through my file of warrantees and unfortunately mine ran out a few years ago, its probably going to cost a fortune but i've put my name down on the brain transplant list anyway, though i hear there's quite a few already ahead of me lol

My temperature gage is broken, in summer i run the aircon and still have to put the electric blanket on lol I'll be freezing cold, teeth chattering cold but still i'll leave hot wet foot prints on the tiled floor, they also feel cold but they can't really be cold if i'm sweating that much. If its cold outside, it only takes a few minutes for me to be shaking more from hypothermia than my tremor lol I actually did use to wear a scalf/shawl around my neck everyday at work and I had hot hand bags in my pockets too.

I think my brains perception of hot or cold is way off reality, i've had this odd immune response thing to cold since i was a child, i get chillblains which sounds like its nothing much but for me it means my immune system is in over reactive/over protective mode. Its trying to protect me from the cold but in reality its causing parts of my body to swell and twist as my knuckles develope their 'temporary' hard lumpy growths. Currently i have 2 different size hands, guess which one hurts lol  

Over the years i've found that half the battle is to not let it start, to try to not feel hot or cold because once i feel it its already too late in the game. I wear layers in the cold, gloves and hat, in summer its layers that are loose, cotton and flowing, its a bugger keeping my self in warm or cool environments and sometimes i am but my body doesn't realise it. hmmm that reminds me, i seem to sweat when i'm cold and dont sweat when i am hot, now correct me if i'm wrong but isn't that the wrong way around? lol

i'm in winter here and i'm looking forward to the warmer climate, though when it comes i'll be looking forward to the climate getting colder, lol can never win

Cheers.........JJ

[twopack]

Beema, let me know if you want the name of the shop that tinkered with the truck's busted thermostat.  Maybe they can find a replacement for you if you supply your original make, model and year of manufacture.

As for your family not understanding what this is like for you?  Try not to be too hard on them.  They are busy enjoying life in bodies that seldom go off auto pilot and you wouldn't really want to rob them of a moment of that.  

Besides, it isn't easy for any of us to imagine life lived differently than what we've got at the moment.  I have a hard time imagining anything better than my limited new normal anymore.  Our best chance to be understood comes on this forum.  

Otherwise what I said to Alex applies here in duplicate and triplicate.  Our expectation their understanding will improve may exceed their desire to learn from our explanations.

Mary

[twopack]

Thanks Alex!  Next time they try the extreme thermostat trick I'm going to tell them I discussed this with my HVACologist specialist and you confirmed I am right about this.  I will enjoy this particular "I told you so" statement and feel sure they will finally understand and change their ways.

Wait a minute.....
I'm just now remembering that hubby's truck overheated and took a long rest on the side of the road last week.  This couldn't have anything to do with the fact that he sometimes likes to cruise along with the A/C running and the windows down would it?

I'm afraid my expectations for improved performance may exceed his desire to change.

Mary

[beema36]

Thanks . You know this is silly I know because even though my neurologist told me this happens with ms there was a part of me that wondered if it was all in my head. As I tried to explain it to friends and family they just didn't get it. Now at least I know I am not alone. I sure do hate it though but now I know its just another ugly part of the monster ms.

[cainer]

hi  yes its no fun!  i drink cold water-to bring it down but keep something handy to stay warm- its misreable - but thats how i deal with it- i keep water around all the time!

[RedFlame]

Beema,  

I have the same problem, just so you know that many of us deal with it.  I will get a sudden chill in the Summer and a sudden hot in the Winter.  

You will adjust to all these things and be ok with it.  It's just part and parcel of a disease in the central nervous system.  In the winter here in Michigan, I never put a coat on.  I walk outside when it's 20 degrees and it feels good.  

I re-read my first response and wanted to clarify the "..it's hard to continue to live...." statement.  What I meant was that it is difficult initially but then you accept it and move on.

It's going to be OK.

hugs,
Red

[beema36]

Thanks all for the good tips and information. I know I can always count on you all.:)
Beema

[HVAC]

I have my own thermostat and it does all kinds of weird stuff. Our house is kept at 78-80 in summer but I need blankets, then I get hot, then I need blankets. I can't handle the different sections of the grocery store, like frozen foods. I wear an ice vest but can't touch ice or anything cold with my bare hands or it hurts. I carry a light jacket with me if I go out so I have more options.

Mary

With my HVAC knowledge. Shoving the a/c way down does not work. You only need to go down a couple of degrees to feel cooler. People think a/c's and refrigerators make cold air they actually remove warm air. Feel the bottom of your frige that is the hot air removed from the frige itself. Same for the hot air coming out of your outside unit of your a/c. The only thing the thermostat really controls is how much the compressor runs or you can turn on the circulating fan separately.. The compressor is like a heart run it at full throttle all the time you shorten the life span. Especially in a car since the a/c is more complicated since it is tied into a stopping and starting car.

At the same time raising the temperature too high say during the day when no one is home takes longer to cool back down because before it feels cool the humidity has to be removed.

Alex

[MissLauraI]

Beema-
This is one of my most irritating symptoms. It is as if my thermostat is broken too. I get chills when I eat (which is a really weird thing because I thought digestion creates heat). But then sometimes when I eat I will just be sitting there and break out in a sweat...go figure!

I get freezing feet so I put in socks and then I break out in a sweat. I get cold and put on a sweater, and then almost immediately take it off because I am too hot.

When driving, I am always switching the air to different temps...no problem when i drive alone...but makes my husband crazy!

My feet and legs never sweat and my face and chest will drip sweat even with minimal activity. I have no idea why this happens as I am not dx with MS or anything else (although I have many MS symptoms).

I am never "just comfortable".

How I deal with it is dressing in layers and keeping cool packs and ice on hand. Also drinking cold or hot drinks seems to help make an immediate change.

Keeping an environment as cool as possible makes it a little easier because it seems easier to warm up than to cool down. The exception to this is in the winter sometimes I get so cold, the only way I can warm up is take a drive in the car with the heater cranked up or take a hot bath...but then that causes other problems once I get too hot :(

It is a CRAZY symptom and I am so sorry you suffer from it.

I will be happy to hear if anyone else has solutions.

[Lulu54]

Good tips already, and here is one more - invest in a nice pashmina, those wide scarves that can be draped over your shoulders.  Keep one in your car, in your bag, at home.  They are no as heavy as a sweater and can be adjusted easily for more or less air flow on your arms, back or your neck, etc.  

[beema36]

Thanks Mary. This really helps. I will try some of your suggestions. What really helps is knowing someone else has experienced this although I wouldn't wish it on anyone.
Would be nice if my family and friends understood but seems no matter how much information I get to pass on they just can't get it.:(
This is one of the hottest summers I have seen so its really testing me. Whats really confusing is how I can actually chill in the heat. I know that can be a sign of heat exhaustion but my neurologist says its,also how this malfunctioning thermastat works. Hard to keep up.
Beema

[twopack]

I don't handle heat well at all but I have also noticed I am increasingly temperature sensitive (my personal name for it).  I don't adjust well to even minor changes in temperature.  My preferred household thermostat settings are around 66 degrees in the winter and 74 in the summer.

There is a real difference between skin temperature, our perception of skin temperature (can be quite off from the reality for PwMS) and core body temperature.  I think it is how those things work together (or don't) that gets me (and maybe you too Beema) swinging from one extreme to the other.

Things like digesting a meal, exercising, exposing skin to a breeze, and munching on ice work to alter the internal signals that, in turn, raise or lower core body temperature.  Sometimes I think the change happens too slow or too fast so by the time my inner thermostat realizes I'm cool enough I'm already on the way to tipping over into being too cold (and then I swing back in the opposite direction again).

My kids and husband set me up to understand this.  They all seem to believe that when they enter a cold room (or car, or anything else) they will get warm faster if they jack the thermostat up as high as it will go.  Then they forget about it until we all realize we are drenched in perspiration and set cool down maneuvers in motion.  They REFUSE to believe they will warm up JUST AS FAST by setting the thermostat to the desired end temperature right from the start.

So that's my theory.  Fortunately, my husband is very good about allowing me to control the home thermostat now that it's just the two of us here.  I have realized this summer that I do best keeping my arms and legs covered with a loose, light weight material when I'm in an A/C environment (which I arrange as often as possible).  

It seems a 3/4 to full-sleeve cotton shirt prevents the cool A/C air from blowing directly over uncovered skin and lowering my core temp too far.  Of course once I start moving around much, that solution fails unless I can balance it out with the ice munchies.  

A sweater this time of year sets up that too hot >> too cold >> too hot cycle.  I do often carry a cotton cardigan or jacket if I'm going to be in and out of unknown temperature zones this time of year.  People may think I'm crazy but I've gotten to the point it's easier to accept that than alternating shivers and sweats.    

It's a struggle but, as you can see, you're NOT alone.

Mary

[beema36]

Red,
Thanks for your reply. Do you have this problem? So far I haven't met anyone else who does.
Beema

[RedFlame]

Hi Beema,  sorry to hear that you are experiencing this now.  It is frustrating.  

The sympathetic part of the autonomic system regulates your bodies reaction to heat and cold.  Your skin will 'chill' even if it is hot because the nerve fibers that send messages to your brain are also the ones that send the "I'm hot" message.  So, with MS that message is really garbled.  

There are some good essays written on this and I don't remember where I found the above info.  It may be in our health pages.

When it's hot you need to keep your core temp. cool.  Some of us here have cooling vests for the Summer.  Heat can do damage to our nervous system.

As far as living with it---It's hard to continue to live with more and more symptoms.  

Hopefully there will be others more knowledgeable about this who will answer.

Red