Shiver Time

[avais1]

Hi all, I hope all is well with you. I was wondering if you all would take a crack at a couple of questions I have.

1) Last night, I had a brief (thank goodness) POTS attack. But the strange part was this: Before I had the attack, I'd say for a good hour before, I was FREEZING. I was in my pajamas, under a heavy quilt, sheets, and another blanket, and plastered against my fiance for warmth. Even with that, my hands, arms and feet were like ice - literally. My fiance couldn't believe it. No matter what I did, I COULD NOT get warm. Question: Does this happen to very many of you?

2) Before the attack, my joints and muscles were aching. Excruciatingly. My finger joints, my wrists, my elbows, groin, knees, ankles, feet, you name it. If it had a hinge, it throbbed with pain. Questions: Does this happen to any of you?

Believe it or not, the POTS attack was what ended all of that stuff (although it brought me the nice panic/nausea and profuse sweating that comes with it - you know, our favorite ). The coup de gras: of course, I was lying down and trying to go to sleep, so I kissed that off for the rest of the night (sorry, a small vent creeped in ).

What do you all think?

[steph37822]

oops

[briarrose]

ok this is frustrating because I typed out a very long reply to this and lost it.

Yes I experience this type of cold but it doesn't have to be the beginning of a "POTS flare up." I use to be just naturally cold.

I go through 1 electric blanket a year but it really does work to warm you up. Hot broth or tea are good to try.

I can't remember everything I said, oh well going to bed.

[violahen]

Yes, yes, yes...it all happens to me.

I don't necessarily have an "attack" post-freezing...but I do get those symptoms....

When I do feel that way I try to take a shower to warm up....the other day I took 6 showers during thte course of the day just to try to get warm....just be sure you don't get into a steamy room/shower/bath if you are feeling sycope in near!

I know how uncomfortable and frustrating it is...I'm

sure it must be related to low blood volume.

Good luck.

Kristen

[Guest tearose]

avais, I am sorry you are having these symptoms. I loathe being cold!!!

In general, I get many of the aches, numbness and feelings in cold weather as you discuss.

I try everything from heating pads, layers, snuggle with husband...to get and keep warm.

I only remember getting the pots symptoms after feeling the shivers if I am coming down with a cold or virus. It is as though my body was working so very hard to get me warm that my whole immune system shut down and I was left with being sick. But still I wonder which came first? Did the virus/cold come first and then I couldn't manage the air temperature? Or was I having such trouble with the freezing air that my body was weak and soaked up some virus? Who knows? I think our bodies struggle more than the "average bear" to stay healthy, warm, etc...

Just last month I was shivering like you and desperate to find a way to get warm. I purchased two of the 3M gel packs that can be used frozen or put in the microwave for 1-2 minutes. I dressed in layers, heated the gel packs and stuck them inbetween my shirt layers. I found if my back and chest are warm I am able to begin to maintain some body heat again. As odd as it sounds when shivering, I too went to the water for relief. I was so desperate that I boiled a few kettles of water and drew a bath and soaked in hot water in a warm bath room with the space heater going to finally get my core heated up!

I think we dysautonomics have extremely weird body thermostats and have to take some weird measures to adjust. I hope you find what works.

I'm thinking about those cosysole products others have suggested. Have you looked into those?

Sending you "warm" wishes, tearose

[calypso]

Yes, and yes.

My body temperature is totally wacked since I've had POTS -- I can be freezing cold but my skin feels like it's boiling hot -- I almost feel feverish. I also can't warm up at night, especially when it's time for bed, but by morning I wake up and am boiling hot.

This is the exact opposite of what my body did pre-POTS. I used to fall asleep and be not warm, but OK, then I'd wake up freezing my tail off. I was always a cold person because I had low BP. Now I have borderline high BP and I am always warm. I would rather be cold again!

And about the joint pain: I get these weird aches in my feet and hands, and in my ankles. Like my bones are aching. They don't necessarily precede an attack, but they just come and go. But I tend to get them when I am feeling anxious.

Amy

[ramakentesh]

I often get those 'attacks' that someone here suggested are called 'autonomic storms.'

First i get very tired and sleepy, and then i get freezing cold - so cold that my whole body is trembling violently - my skin goes pale and my veins dissappear, and im FREEZING! The i start to get restless or anxious, and then my heart begins to beat hard for a while.

Its basically in this pattern: tired, achy, freezing, trembling, out-of-it/anxious, dizzy, surging feeling in head and heart palps, then strange feeling that lasts for days afterwards/increased orthostatic intolerance.

I take betablockers every time i feel it coming on - which usually only is after i have had some alcohol or stress, and it goes away.It freaks out the people i live with because i tremble so much that peopl think im having a fit.

When i first got pots, and for a while before, i constantly had cold hands and feet - all the time - annoyingly... Now its gone away as have many of my symptoms after two years of slight symptoms, and one and a half of terrible symptoms - hand tremors, vitreous floaters, dizzy and tired after meals, weak, pale, heart racing, dizziness, spaced out and out of it, etc...

[avais1]

Hey Tearose, you win the prize!

My fiance had the same symptoms the next night, so I guess it may really have been a virus. I never know if I am really sick, or if my autonomic system has just gone on the fritz !.

At any rate, thank you all for your responses, and tips on keeping warm. I'm off to the hot water right now!

Take care to all.

[briarrose]

Hey ramakentesh that was a very good description of what I go through! But it's not really anxious it's definitely uncomfortable/restless all over feeling that leaves you uncomfortable and unable to treat.

[kristinp29]

Hi,

Yes, I've had the same symptoms...though not at the same time like you did. I'm sorry you had such a bad episode.

My body temp can get totally crazy. I don't usually have problems with getting freezing cold anymore--except my hands and feet--but in the summer, I get way overheated. I dread the summer.

Anyway...it looks like everyone's already given a lot of good advice. I'm late again on this topic!! When will I ever be on time!!??

Love,

Kristin

[persephone]

Yes and yes! I'm nearly always freezing cold when it happens. Although saying that, if I sit infront of a warm fire for ages, I get TOO hot and then that brings on attacks too.

I get the feeling POTS is one of those conditions where you have to try and strike a happy medium-- i.e- between hot and cold, between doing nothing and doing too much, between accepting prognoses and challenging them, that kind of thing?

Anyway, yes, you're not alone. I am sitting typing this with ICY cold feet (well, not WITH my feet, you understand; I was trying to say that I HAVE freezing cold feet ) I'm sure you know what I mean. I'm babbling now so I'm going to shut up!