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Too Cold To Move!


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Guest tearose

I am so much worse in the cold of winter! Here in the northeast now,we have wind chills below zero.

I feel like it takes so much time and energy to get my core temperature up to function and I get brain freeze.

If I venture out my speech will even get slurred. Then the Raynauds kicks in. I tend to stay inside more now and will until it gets warmer.

Anyone else?

Kinda feel like I'm part bear... hibernation suddenly appeals as a nice option.

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Oh, yes, hibernation sounds like a good idea. I'm definitely feeling the effects. I'm worn out because my body is working so hard to stay warm. I'm not getting enough Vitamin D via the sun, so no energy. It's miserably windy and cold outside. I really have no desire to do anything until Spring.

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Yes, I am freezing. I'm also tapering off my SSRI which affects body temp and is adding to things. I am using lots of blankets and my microwave aromatherapy pack to warm up...and my new super heating pad, which is coming in handy. Spring can't come soon enough!

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I live in Arkansas where it's supposed to be warmer and I think I may turn into a popcicle. I'm feeling your pain. I've been extra thankful for my garage and my fireplace these days. We've even had wind chills below zero. I go outside and my hands turn blue and cyanotic looking. I HATE THAT!! HIBERNATE!!!

Brye

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What I notice most is the pain during cold temperatures. It seems I have such a small range where I can be "comfortable" (although even that changes sometimes). My mom has small fiber neuropathy also and she has that problem with getting way too cold or too hot with the slightest variation in temps. During cold weather, my skin burns a lot more and my body just aches. I also struggle with Raynaud's issues. Sometimes I take heated rice packs and wrap them around my feet or my upper back, or warm baths help too. My mom-in-law just bought me the most wonderful heating pad for Christmas! Also hot drinks are a must during cold weather.

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I've been much worse during the cold weather. Even in No Ga the temp has been down to 11. I can't seem to get warm & I always feel like I'm going to pass out. I have a dr's app't today & I'm going to wear panty hose & socks & a long coat. If I hadn't had the app't for a month I would cancel it.

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Tea I am IDENTICAL to you- if I go out and it's too cold my speech slurs too, and I just get too cold to move. I had a collapse on Dec 18th here in Oxford because I got so cold my lips went blue (at least, I think it was the cold....)

I don't know what to do about it. Other than move to the Bahamas or similar.

We've had record lows here- -20 C in Scotland, and -15 C in Oxford over the last week/couple of weeks. Today was a bit better, but I have literally been holed up in my room in college for most of that time, afraid to go outside and keeping myself as warm as I can.

I have four radiators going at full blast, my feet on a boiling hot water bottle, and lots of layers!

hope you are OK, Tea!

Bug hugs

P

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I do an acupressure hold that brings my body back to warm. It's simple. I just hold the outside edge of the back of the knees, just inside that tendon on the outside edge of the back of the knee. To do this, I either sit and bring my legs up to the sofa level and hold both knees with both hands OR lay down in the fetal position and hold both knees with both hands. It usually takes about 5-10 minutes and I'm warm again!

I don't know why it works but it does for my dysautonomic temperature regulation problems where I get bone cold - hands, feet, nose, cheeks, extremities. Totally cold to touch. It doesn't work for the normal cold that is from the outside temperature where just my hands are cold from holding the steering wheel, or from going out to get the newspaper without a coat, or my feet are cold from walking barefoot to the bathroom, etc. For me, doing this hold works when, for no reason at all, I get bone cold - in the middle of the night, when reading a book, as a precusor to a major dysautonomic event, etc. This bone cold is independent of environmental/room temperature. My temp regulation just shuts down. Holding the back of the knees restores warmth.

Just a thought. I'm so sorry. And life is so hard. I just went to Menards to return a few things and buy some paint. I returned the few things and couldn't make it to the paint department. I had to come home. If only they had the automatic wheelchairs. Ah. So disheartening. A simple, quick trip that is not doable.

If anyone tries the hold, let me know if it brings any relief. It would be interesting to see if it works on others who have temp reg issues.

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Icthus - that is a yoga stretch too - though you don't hold it that long. Even though it's "too cold to move", it's important to keep moving to keep the blood circulating. I can't say enough good things about what yoga/stretching have done for me. A lot of it can be done lying down and does not require much energy.

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I do an acupressure hold that brings my body back to warm. It's simple. I just hold the outside edge of the back of the knees, just inside that tendon on the outside edge of the back of the knee. To do this, I either sit and bring my legs up to the sofa level and hold both knees with both hands OR lay down in the fetal position and hold both knees with both hands. It usually takes about 5-10 minutes and I'm warm again!

I don't know why it works but it does for my dysautonomic temperature regulation problems where I get bone cold - hands, feet, nose, cheeks, extremities. Totally cold to touch. It doesn't work for the normal cold that is from the outside temperature where just my hands are cold from holding the steering wheel, or from going out to get the newspaper without a coat, or my feet are cold from walking barefoot to the bathroom, etc. For me, doing this hold works when, for no reason at all, I get bone cold - in the middle of the night, when reading a book, as a precusor to a major dysautonomic event, etc. This bone cold is independent of environmental/room temperature. My temp regulation just shuts down. Holding the back of the knees restores warmth.

Just a thought. I'm so sorry. And life is so hard. I just went to Menards to return a few things and buy some paint. I returned the few things and couldn't make it to the paint department. I had to come home. If only they had the automatic wheelchairs. Ah. So disheartening. A simple, quick trip that is not doable.

If anyone tries the hold, let me know if it brings any relief. It would be interesting to see if it works on others who have temp reg issues.

Icthus, I have been doing this hold for a really long time when I get extremely cold (purple and blue legs, way past even shivering, can barely function, checking my temp shows that I'm somewhat hypothermic....). It works pretty well for me, though I'll flex my calves and other muscles in my legs while I'm doing it. It seems to get the blood flowing and the warmth back in me a bit faster. I am not sure where I picked this up from, except I just had one of those intuition moments (like the one that hit me when I first read a description of POTS). Also, for me, when I have one of the popcycle (as I call them) moments, usually the next day, I'm extra tachy and presyncoptic, and it's almost impossible for me to warm up.

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My toes are red white and blue, very patriotic but not so comfortable. I have started wearing HOTTIES (mini adhesive heating pads that you can wear on your socks and in your shoes). I love them. I even wore them to bed! I bought a big box at Costco. I also feel that core coldness and find things are better when I move around. Being outside for too long is a big no no. Unfortunately I have recess duty sometimes and can't avoid it. So I indulge and bought myself super warm fleece lined boots from Amazon. Sorrels are my favorite and I have two pairs. Yes, they cost a bit, but they are worth it because I want to keep my toes. Lastly, I sleep with one of those microwave heating pads. Sending you all warm wishes........

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My toes are red white and blue, very patriotic but not so comfortable. I have started wearing HOTTIES (mini adhesive heating pads that you can wear on your socks and in your shoes). I love them. I even wore them to bed! I bought a big box at Costco. I also feel that core coldness and find things are better when I move around. Being outside for too long is a big no no. Unfortunately I have recess duty sometimes and can't avoid it. So I indulge and bought myself super warm fleece lined boots from Amazon. Sorrels are my favorite and I have two pairs. Yes, they cost a bit, but they are worth it because I want to keep my toes. Lastly, I sleep with one of those microwave heating pads. Sending you all warm wishes........

I can't believe that I forgot about Hotties (they were Hot Hands for me)!!! Those were the only way I survived 4 years of parade seasons (and sometimes marching band competitions, especially those in late October), marching at least 2 miles for each parade in near or below freezing weather! I must go and invest in a few cases of them, because it looks like I may need them again.

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  • 1 month later...

Yesterday I had a terrible time staying awake. All afternoon and evening, I fought the sleep monster. Couldn't focus on anything, not alert... complete fog, then sleep. Hubby made us a delicious dinner, and I have no idea what we talked about, I was fighting to stay awake. This morning, I still feel foggy. I took my temperature when I woke up... 97.0. No wonder I'm so foggy! I read somewhere that an iron diffiency can contribute to this. Does anyone know anything more about it? I'm not sure how I'm going to stay awake at work today!

Caron

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This is my second winter with dysautonomia. I'm freezing all the time. I'm shorter of breath, more tachy and I shake and tremble even though the heat is on 71. Going outside I can't stand no matter how many layers I have on.

I walk around the house with a heavy bathrobe on top of my clothing. Very attractive. My normal body temp. is now around 96.

Let's just pray for Spring!

Rene

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One of the things that the autonomic nervous system controls is temperature, and I think that's the primary reason a lot of us have lower temps than normal. Also, lack of blood to our extremities makes our hands and feet even colder. So much fun! I've also found that sometimes a really warm bath is all that can get me warm again once I get cold.

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I would like to understand body temperature. As I was in the hospital for three days last month to check for an insulinoma(whole other story), my highest temp was like 97.2, but my lowest was 95.5!!! The nurse even took it again to double check! I understand that anemia can cause low body temps, as someone posted earlier in this thread. But, I am not anemic. I take thyroid meds, but my levels are great.

And, to top this all off, I don't tolerate any heat in the summertime! You would think with lower core temps, summer would feel wonderful. Not me.

So, do we all have lower than normal temps??

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