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The Hot and the Cold of It: How Temp Changes Can Affect My MS Body

The Hot and the Cold of It: How Temperature Changes Can Affect My MS Body

I’m not going to tell you what you should do about this. It’s not that I’m holding out on you, it’s just that I know you’ve read the official facts and advice doled out in MOMENTUM, MSFOCUS, and MS News Today. You know about the sudden muscle stiffness, spasms and pain caused by frigid winter temperatures. You know to stay in air-conditioning during the summer. You know all about wearing cooling vests, hats and neck wraps if you want to venture out into an August inferno. You’ve read about Uhthoff’s Phenomenon so many times that you can correctly spell it without looking it up in the dictionary.

Temperature changes and MS symptoms – not a new subject

You know everything I do about sweating and freezing. Our relationship has evolved, that’s all. We’ve all become a little more informed, a little more aware about the disease and its treatments. Because of this, maybe our interest in these subjects is running hot and cold, too, just like my relationship with my own body is running hot and cold. It’s not that I don’t care about you anymore. I’ve never felt closer to you all. I feel you as close as if you were my heart beating against my own chest. It’s just that I’m at the point of chronic head-shaking about my own body’s failure to act like a warm-blooded mammal. It’s winter, and my hands and feet are alternating between warm-and-red and cold-and-pale. On the next warm day I might have to sun myself on a rock just to get my circulation going. But there’s more to complicate the formula than that.


As time marches on, my aging body tends to change a bit each year in response to the biting-est cold and the blazing-est heat and humidity. Not to mention the sudden see-sawing of temps during transition months. If you live in a region that experiences all four seasons like I do, you’ve already discovered that the many unpredictable transition days between those seasons can affect your body worse than extreme temps.

Drastic changes in temperature can be worse than the extreme hot or extreme cold

People who live in the expansive land mass of the American Midwest have experienced this first-hand. It can happen in October, November, March, and April. And those who live somewhere within that long, narrow sliver of the Eastern Seaboard know all about chill dampness seasoned with salt air. You smile pityingly at those who suggest you layer your clothing, knowing how that helps regulate your comfort about as well as seeking shade relieves you from the light and heat of a nearby volcanic eruption, or that an extra pair of bearskin gloves will bring back the feeling in your fingers while you move fast afoot on the frozen tundra of Antarctica.

Yes, I too pity the poor fools. But I pity myself most of all, that split-second before I laugh to myself about what a waste of thermal energy it takes to feel, well, anything. I grumble because no matter what I do, I can’t change it. Oh, I can achieve temporary relief. In bed at night when I wake drenched in sweat, I can peel off the top cover and cool myself down enough to fall asleep again. But the routine will repeat itself tomorrow night and the night after that. You know the drill. You crawl into bed nicely chilled and draw up the comforter to chin level, nestling into your pillow and falling blissfully asleep.  What could possibly keep you from snoozing all the way to daybreak? The heat kicking on, for one.

Still in the problem-solving stage with that one? I can’t blame you. I have hot water heat, so dialing down the base temp at night didn’t do jack crap. It takes hours to adjust the base temp down and it didn’t keep me asleep amyway. I also take estradiol and progesterone for postmenopausal hot flashes. Though the medications control those symptoms, they don’t regulate my nighttime, presumably MS-related body temp fluctuations as much as I’d like. (And guys, a lot of you have similar problems if you take testosterone supplements or have adrenal conditions.) These things don’t save me from fitful nights because room temperature, air movement and hormones are only three factors that affect body temp and sleep problems.

Body temperature and sleep

Being more active helps us sleep better and sleep through the night—sometimes. Right now, I’m trying those little tricks I learned years ago in the event that they might get me a few more uninterrupted hours of shut-eye. I got one normal night out of a day of being more physically active. It meant a lot to me, honestly.

Backing off the caffeine earlier in the evening can help, too—sometimes. It’s worth a try.

I aim a pedestal fan at my face and put it on low-medium every night. It helps until I wake, damp and warm, then helps cool me down enough to fall back asleep again.

Taking melatonin several hours before bedtime can help me fall asleep earlier. But it has never helped me stay asleep.

So I’m still pretty much spinning my wheels. Are you? If you are sleeping through the night, night after night, please be generous and share your solution with us. You will have many of us feeling most beholden to you. Sleep is such a precious commodity.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • labsrspecial
    9 months ago

    I gave up the fight about 10 years in — I have had MS for 22yrs I am an active Valium user- I float between 5mg and 10mg- and dang zzzzzzzz a followed!!! Also ALL OF YOU DON’T FORGET PALLATIVE care for pain!!!!

  • Donna Steigleder moderator
    9 months ago

    @labsrspecial
    Good reminder about Palliative Care for Pain. For those of you who have never heard of Palliative Care, it’s a program for those who have chronic health conditions that need long term comfort management. Initially established as an alternative to hospice, it now has its own recognized followers. The treatment program helps those in the program learn ways to manage pain with other options to narcotics since the use of drugs long term may be contraindicated. It’s a wonderful program and well worth checking out. Another great program to consider would be a pain clinic but which does more medication management. Donna Steigleder

  • Kim Dolce moderator author
    9 months ago

    Thanks for that very valuable information about palliative care for pain, Donna! –Kim, author and moderator

  • swampdoctor dave
    9 months ago

    Once again you have hit the nail on the head Kim. Being able to sleep the night through is such a blessing. I used to be able to do that until about two years ago. Now I feel lucky if I can get four hours of sleep.

    Your hallway buddy,

    Dave

  • slaughteringMS
    9 months ago

    My husband is a good sport about my rotation with different bedspreads, blankets, and plush down comforters, and my need to sleep flat on my back with my left arm in a certain position in hopes of falling asleep before that nasty neuropathic pain makes me want to saw my arm off at the shoulder. So, ashamed as I am to admit this, I almost always take Aleve PM when I go to bed. I reason that sleep is an even more precious commodity for those of us who have MS. We really can’t afford to lose hours of sleep. So, whatever it takes–finding better ways of managing daytime fatigue so that it’ll somehow all culminate at night, warm baths, avoiding caffeine altogether–this is an imperative for us. Thank you for your article! It makes me feel better to know that I’m far from alone with my temperature sensitivity at both ends of the spectrum and difficulty with sleeping.

  • Donna Steigleder moderator
    9 months ago

    @slaughteringms Don’t ever feel ashamed to admit you need a sleep aid. It’s a common problem with MS not to be able to sleep, and many people have to have help. My husband has a regular sleep cocktail he takes every night of Benedryl, valium, and Melatonin to help him fall asleep. Without it, he can’t get there. With all the twitching and spasms, and whatnots, who can sleep? Temperature sensitivity is also a big issue for many. You’re not alone. Donna Steigleder

  • suesue55
    3 years ago

    I too have Hot/Cold issues but the heat is the worst, I can handle the cold! Living in North Louisiana you never know what kind of weather your gonna have, so if I plan to work outside (which I love to do) it has to be early morning and only for a short time. Like most of your comments THE HEAT DOES A NUMBER ON ME ALSO. Difficulty walking, keeping my balance, etc.
    And the night time is a laugh…I sleep out from under the covers with a fan blowing on me and my wonderfully understanding & supportive, helpful husband sleeps under as much cover as he can pile on.(year round)
    Before I knew about this hot/cold issue we went to the beach, walked into the water and it felt like it was boiling!!!
    I’m sure I’m like all other MSrs I HATE THIS CHALLENGE BUT IT AIN’T GOING TO GET ME! I’ve stuggled since 1984 so positive thinking does help.

  • pippa
    3 years ago

    I live in Israel so heat is an issue for me.
    It really helps to read other people’s symptoms because I feel I am going crazy with all the weird things that happen to me.
    Sometimes, even often, I feel alone and very misunderstood.
    My family are not supportive and are just not interested.
    I have tried going to a support group but seeing everyone in wheelchairs with helpers standing by….. just didn’t do it for me I felt like an outsider.
    So, I take each day as it comes. Yesterday I was full of joy and energy today…WHAM I am non functioning….. Very frustrating not being able to plan… but others have written this before me.

  • Nikinoodles
    3 years ago

    Hot and cold both present different issues for me. I got cold thisEaster and had shakes and shivers ( even though it was at least 70 in the house) which lead to massive pain in the right side of my body. I tried prescription pain mess and laying down but as tough as I am (used to be) tears just poured down my face. I was embarrassed with family from out of town, tired just getting off 3rd shift, and in so so so much pain. After medicine and blanket’s didn’t help I remembered my parents sauna, yes they have a cheap sauna that has been more less forgotten. After encouragement to go to the Er which I refused because what would they do anyways I asked my parents to use the sauna. 30 minutes and 115 degrees later I finally was barely out of pain. I wanted to stay in but caught myself falling asleep. I crawled into bed and before I could fall asleep the pain was coming back. It took 2 socks of hot rice constantly being reheated and brought back into me for me to finally fall asleep.
    Heat wears me out and makes me sleep but cold hurts, the odd thing is what’s hot to me can be cold to others and visa versa. I tell locals my internal thermostat is goofed up. How can I occasionally be cold at 79 degrees but occasionally be cooking inside at 71 degrees?

  • lhalvor
    3 years ago

    How appropriate at 2 am.

  • 3 years ago

    Macs Root powder helps women AND men make the hormones their body needs. Only grown on the Peruvian mountains, they have used it for hundred of years. I put it my smoothies now. Since I started I haven’t had the night sweats since. My problem is I was apparently nearly comatose every single time I woke up I was soaked and freezing cold, I never woke up hot. If anyone is taking hormones or just having to deal with that issue, I suggest you Google it and read for yourself and try it. There’s nothing better than something natural. I see those hormone therapy commercials and I just shake my head and feel sad for all of the women taking all of these different things and don’t even know there’s something out there that will actually probably help. I would love for someone to try it and hear of the sheer Joy of having relief for any hormonal issues! I get mine at Sprouts but I’m sure any organic or Whole Foods store carries it

  • 3 years ago

    *Maca* Root

  • BeckyAnn
    3 years ago

    I am so sick of this happening to me too…..I live in Arkansas and humidity zaps me daily.
    I too have hot flashes but no meds for that right now….
    I wake up in the night in pain…I work all day in pain and get to look forward to going to bed in pain just to wake up again 2 hours later in pain…I take Valiums to help to stay calm but all the MS medications they have put me on doesn’t help with my syptoms or I have allergic reactions to them…
    I understand about trying to not grumble about things I can’t change but honestly this sucks….

  • Azjackie
    3 years ago

    I am so happy to hear it’s not just me. I know that sounds mean, I’m sorry, but I was beginning to believe MS was driving me clinically insane. I even had a neurologist suggest I see a psychiatrist about my heat and barometric thoughts. No one believed me…

    Now I have a neurologist who researches the effects of temperature and barometric pressure at Arizona’s best neurological hospital. He was integral in phase III studies of Gilenya as the first oral RRMS treatment. I just love that guy.

    I am perimenopausal (?) with sweats at night. I find bringing down my core temperature works best. A damp cloth on my abdomen sometimes with the ceiling fan. If that’s not enough I add an ice pack and room fan after drinking a full bottle of water that I had in the freezer for about 20 minutes.

    Again thank you all.

  • potter
    3 years ago

    Same problem I wake up two or three hours after falling asleep burning up. I throw the top cover off and head to the bathroom. By the time I get back I am cooled down enough to get to sleep. I haven’t had this problem for a long time, I am blaming the weather it’s been unseasonably hot then cold. Kansas has the largest change in temperature in one day than any other state on a daily basis. I went through menopause 15 years ago and didn’t have hot flashes. I guess it’s my turn. Potter

  • JanG6036
    3 years ago

    I too have sleep issues due to that stupid internal thermostat and for me its the heat that is the worst. I wake up drenched even with a fan pointed in my face and have to take all the covers off so I an cool down ( this is even in winter ) I leave a window open in my room but I live with my father and he has the heater on too so it doesn’t help me and when I’m drenched the TN nerve pain starts up and I’m in pain for an hour or more.
    I live in the Deserts of California and the summer is brutal for me

    I have found an easy way for me to stay mostly cool at night when I sleep and that is taking a hot shower before bed and go to bed with wet hair it helps me and I sleep a little better but with being up ever 3 hours for pain meds its hard and if I miss to many of them I’m hurting bad for 2 days

    Anyone have any Idea’s to help out would be nice and loved

  • Kim Dolce moderator author
    3 years ago

    Hi JanG1360, I’m so sorry about your pain and sleep troubles. You gave us a good tip about showering and going to bed with wet hair to “maintain your cool!” I’m sure that will help some people who are also suffering with nighttime overheating. Thanks so much for your comments! –Kim

  • skcullers
    3 years ago

    AMEN! As I age have the same problems. Living with 4 seasonal changes is a true challenge. Here in southern Oregon it’s been up and down for months. One day nice and then rainy and cold with occasional snow. A therapist once told me we autoimmuners are very sensitive even to barometric changes. I poo pooed it at the time but now a firm believer! Just wish things would calm down here. Has been a very rough 4 months.

  • JanG6036
    3 years ago

    hot then cold and maybe rain but lots of wind here makes for a mean and hurting girl here

  • Kim Dolce moderator author
    3 years ago

    Hi skcullers, the barometer is definitely my enemy! I once insisted on this connection to my former neurologist–but he was the one that poo-pooed it, lol. Sorry you’ve had a rough four months; I hope things improve as soon as we are firmly in the middle of the upcoming season. Thanks so much for commenting! 🙂 –Kim

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