Author Topic: Unable to regulate body temperatiure properly?  (Read 6093 times)

Lesleybird

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Unable to regulate body temperatiure properly?
« on: July 04, 2010, 03:40:52 AM »
  Hi, For the last few days I have been feeling fairly fatigued and I lay on the couch and have goose bumps on my legs and arms and am sweating at the same time. I put the cover off and on every couple of minutes. My hands, feet and nose are also ice cold. I cannot figure out why I am sweating all over and have goose bumps and feel cold and hot at the same time. Don't know if I have a fever or not because I cannot find the thermometer.  This is not like when a person runs a fever and is cold and the fever breaks and I sweat type of thing..... This is where I gave goose bumps and feel chilled and am sweating all over my body at the same time.  I am thinking this is some type of autonomic nervous system disfunction.  Anyone else have this? What is going on? I have Sjogren's, Raynaurds, autoimmune hypothroidism, and fibromyalgia.
                                                                                                                                                                                                         Lesley

Suzie

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Re: Unable to regulate body temperatiure properly?
« Reply #1 on: July 04, 2010, 06:20:54 AM »
I also suffer with this. I'm usually roasting hot, but often I feel hot at my core, but feel cold at the surface and have goosebumps on my skin. My husband says my skin feels normal temp to him at these times.

Now the weather's really heating up, my temperature thing's gotten even worse. Most nights it's 28 C in the house. Ordinarily I'd have been faint with the heat. But I turn the air-con off, feeling cold. Then I'm hot again, so on it goes. Then I'm half hot and half cold...

I've been terribly fatigued constantly for 2 years. And I suffer with dizziness. My bed often feels like a boat on the high seas.
I can't face braving yet another doc to get checked out for Autonomic Dysfunction. I know, I should. I will. Too tired, too jaded, too ugh

Joe S.

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Re: Unable to regulate body temperatiure properly?
« Reply #2 on: July 04, 2010, 08:12:52 AM »
My recent visit to a rheumy provided me with a Dx of Autonomic Neuropathy, and a slug of additional doctor appointments. Reviewing the Mayo site reassured me that I had been doing all that I can to help myself manage this issue.
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Carolina

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Re: Unable to regulate body temperatiure properly?
« Reply #3 on: July 04, 2010, 08:37:06 AM »
You describe me exactly, Leslie,

It is so weird.  Way worse than post menopausal hot flashes ever were.

Usually my feet are ice cold, and then I can be sort of main body hot, but superficial cold with goosebumps.

It is the AN.  My husband tries to give me the entire neurological biochemical explanation, but it won't help change anything.

At least he now understands that it's not 'all in my mind' or 'she's just exaggerating for attention'.

I don't spend ANY time outside now that's it's so terribly hot and humid.   Just to and from the car.  I change the thermostat in the house many times a day.   Some times I can't get cool enough in the car, and other times I have to shut all the vents that are blowing on me.   Only to discover that my husband's vent is coming in my direction (it's a new car, and he didn't realize that when it didn't blow on him, it blew right on me!).

We went star watching at a marvelous observatory in the mountains before we left Texas.  It was gorgeous and I was dressed warmly enough, but my hands and my face became agonizingly cold.   The bones in my face were aching, and I had to leave half way through.

Also I have terrible DDD (degenerative disk disease) in my cervical spine (neck) and all that craning backwards created a terrible headache.

But you know, I don't feel sorry for myself when I have to leave, I'm quite relieved and just drink cocoa and think my thoughts!

I think part of that is being 68 and having really had am amazingly full life, getting everything I've ever truly wanted, so I'm willing to let things go now.   That's rather peaceful, actually.

Having my husband finally understand and accept that this is happening, really happening to me and that I just will do what I can and no more, has really eased my stress, as well.

I don't think there is any solution to the poor temperature regulation, unfortunately.

Anyone have any ideas?

Kisses

Carolina

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inga

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Re: Unable to regulate body temperatiure properly?
« Reply #4 on: July 04, 2010, 09:35:31 AM »
I have AN and yes, it sounds familiar.  A neuro who has access to an autonomic lab is needed.

sewandsew

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Re: Unable to regulate body temperatiure properly?
« Reply #5 on: July 04, 2010, 11:34:12 AM »
Body temperature inadequacies is just part of the Sjs game, isn't it?  If your feet are always cold, try Smartwool socks.  Honest, they are great but a bit pricey.  Might be on sale now being the opposite season.  You can find them at some sport stores.

Suzie

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Re: Unable to regulate body temperatiure properly?
« Reply #6 on: July 04, 2010, 11:50:00 AM »
oh lord, I just can't face seeing another doc and going through the hoopla again.

I am pretty good at holding myself together in a dignified manner despite wanting to cry each time they tell me it's psychological. Don't want to prove them right by exhibiting signs of emotional instability, no matter how warranted by the intense frustration of dealing with my symptoms and getting no help. Wont give them the satisfaction!

Is there a treatment for Autonomic Neuropathy?

Is my current, "My head feels like a snow-globe" feeling due to it? If I tip my head to any degree,or forget to move as though I'm balancing a stack of books on my head, I feel dizzy and sick.

Oh guys, I feel so terrible. How can I live like this? I'm only 35, with kids, and it just gets worse and worse and worse and worse and.....

Carolina

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Re: Unable to regulate body temperatiure properly?
« Reply #7 on: July 04, 2010, 02:40:12 PM »
Sending kisses to Suzie!!!!

Kisses

Carolina
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navydad

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Re: Unable to regulate body temperatiure properly?
« Reply #8 on: July 04, 2010, 04:25:38 PM »
its a terrible lot to live in thats for sure,, especially those of us that are sereonegative, like so many of us on this board,, neg blood markers but biopsy proven neuropathy,, dry eyes dry mouth,, and not all of it caused by meds,, Like the neuropathy topic,, i just seem to drop more and more in the way of using my muscles and watching them just wilt away from the pain

Sheltiemom

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Re: Unable to regulate body temperatiure properly?
« Reply #9 on: July 04, 2010, 05:05:59 PM »
Suzie,

Your problems have the earmarks of autonomic, and the dizziness (not the temperature thing - that is another facet of autonomic dysfunction) might be from something called orthostatic hypotension - the fancy medical name for what happens when you get up from a lying/sitting position and your blood pressure drops dramatically.

This is why, although you might not want to, you need to be checked out by a neuro who does ANS testing.  At the very least, they will take your BP lying down on the exam room table and immediately after you've been told to stand up and see if there's been a significant drop.  At most, you'll be given the tilt table test and other testing.

I know - it's too much to deal with for you, but the BP thing does need to be Dx'd.

Take care and feel a bit better.

Best wishes,

Sheltiemom 

Sheltiemom

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Re: Unable to regulate body temperatiure properly?
« Reply #10 on: July 04, 2010, 05:11:42 PM »
Lesleybird,

Sure sounds like autonomic, etc.  It's lousy, but when the inner "thermostat" is broken, these things can happen.  I'm sorry you have it. Do you have a good neuro?  He/she might have some suggestions for you.

Best wishes,

Sheltiemom

Blue Kat

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Re: Unable to regulate body temperatiure properly?
« Reply #11 on: July 04, 2010, 08:55:42 PM »
Count me in as another one going back and forth between hot and cold sometimes for the last couple of years.  Since I'm 47 I just assumed maybe I'm peri-menopausal, but maybe it is Sjogren's...?

Suzie

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Re: Unable to regulate body temperatiure properly?
« Reply #12 on: July 05, 2010, 12:40:41 AM »
Sheltiemom - I'm going, I'm going! Thanks for prodding me so sweetly.

But I'm wondering - I'm dizzy even when I've been sitting, like now, for half an hour. Or lying in bed for an hour and still spinning. Inner ear or something? Yep, back to the GP I'll go, in a few days when my DH is around to drive his dazed and unsteady wife.

My ob/gyn thinks I'm nuts when I ask her if I could be peri-menopausal at 35. Hormones test ok.

Carolina

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Re: Unable to regulate body temperatiure properly?
« Reply #13 on: July 05, 2010, 10:46:30 AM »
Hmmmm Dizzy WHILE sitting?

That's a new one for me.   Maybe Menieres?  Or however it's spelled?

Let me check google.

Well for it to be Meniere's, you should probably have ringing in your ears.

I mean that seems pretty standard by the definition.  but anything is possible.

Do get it checked out.   Yeah, I know what a pain that is.

Keep us posted.

Kisses

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Suzie

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Re: Unable to regulate body temperatiure properly?
« Reply #14 on: July 05, 2010, 02:46:39 PM »
Hi Carolina,

Nope, no ringing in my ears. The top of my head hurts - I keep needing to lie down. It actually feels like a much, much, milder version of the spinal headache I got after my spinal tap last year.

Whoa, dizzy sitting here. I hope it's a virus and not some kind of spinal fluid trickle causing this. Ugh. queasy.

Thanks, Carolina, you sweetie.

Suzie