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Temperature intolerance and sensitivity - Autonomic Neuropathy?

Posted by Rachel, Volunteer Mentor @rwinney, May 30, 2020

Does anyone experience sensitivity with extreme temperatures or effects from adjusting between different temps? I do not adapt well to winter weather and can't tolerate being out in it very long without becoming chilled and tense. My feet still turn purple when they get too cold and last year I developed a bad case of Chilblains. We've recently had a heat wave and when being outside, sitting in my yard to feel the sun, I developed a heat rash of itchy, sore blisters. The slightest touch to this area feels like sandpaper rubbing me. I have needed to stay in shade or in air conditioning (which can also chill me). The rash areas are hands, arms and legs. Being in the shade has not been enough, I need to not be exposed to heat. Also, if I'm warm and the slightest breeze blows, I get goose bumps. My body doesn't acclimate to temperature changes in a normal way. I've never discussed this with my Neurologist but, research tells me it's most likely from my SFN (autonomic neuropathy) or perhaps from medications. Any thoughts?

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Rachel, Volunteer Mentor | @rwinney | Jun 3, 2020
In reply to @stobie2019 "I hate to say this, but thank goodness that there is someone else out there who..." + (show)
@stobie2019

I hate to say this, but thank goodness that there is someone else out there who is experiencing the same problem with changes in temperature as I am. I tell people that I am beginning to feel like I'm turning into some kind of a lizard or something! In the winter months I walk around in fleece tops with a sweeter over that, and I'm still cold. I live in western North Carolina so my winters aren't like they are in the northern region. Then it took until June 2nd for me to start wearing short sleeve tops, and now I'm so hot I can't cool off!! I wish I could live in my freezer! The worst part is sweating is supposed to cool you off, but the only place I sweat anymore is a small band on my forehead at my hairline. Go figure. My neurologist is well I don't want to say bad things, lets just say not all that up on SFN and autonomic neuropathy that goes with it. I gave her my complete medical history when my family MD sent me to her, and she either didn't understand the relationship, or didn't know about it, but instead sent me all over doing one test after another, to general surgeons to remove bits and pieces of fat and muscle to test for all kinds of genetic markers and in the end she deemed me as having idiopathic SFN. Then low and behold I have an accident, fracture my sternum, have a pneumothorax and on the CT scan to find all these wonderful things they also find a host of little cysts or tumors or non-descript things that don't belong in both my lungs. So I'm sent off to a Oncology radiologist for further study who also takes a complete medical history. Well as it turns out she informs me that those things in my lungs are a result of long standing Sjogrens Syndrome which I've had along with Lupus as part of mixed connective tissue disease since I was 16yrs old. That also is the reason I now have SFN as an part of the long standing mixed connective tissue disease which hasn't been properly treated since my MD from where I used to live passed away and I couldn't get anyone from here in NC to write me an RX for immune suppressive drugs to halt the progression of my disease. So it marched on. I guess the reason I don't develop blisters out in the sun is that I either cover up or were enough sunscreen to prevent them. I also suffer sever Vit D deficiency which my family MD picked up and has since corrected since I don't get enough from the sun.

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Hello @stobie2019 and welcome! Thanks for joining the discussion. You have had your share, haven't you? I'm sorry for that. Some of the oddities that SFN brings can be a head scratcher. I always find comfort in numbers to be helpful too. Take care and stay cool, or warm, or in my case...which ever way the wind blows!
Be well-
Rachel

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Mentor
Rachel, Volunteer Mentor | @rwinney | Jun 17, 2020

Here's a new one, anybody? The sun on top of my scalp...through mounds of hair... for 5 minutes...
It felt as though someone held an iron to my head. At first, I touselled my hair to cool it down, then quickly moved from this warm object I used to LOVE to feel on my skin.

I share with you all simply because you legitimately understand that I'm not being dramatic in my description but describing actual sensory feelings (well misfires).

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2 replies
Hank | @jesfactsmon | Jun 17, 2020
In reply to @rwinney "Here's a new one, anybody? The sun on top of my scalp...through mounds of hair... for..." + (show)
@rwinney

Here's a new one, anybody? The sun on top of my scalp...through mounds of hair... for 5 minutes...
It felt as though someone held an iron to my head. At first, I touselled my hair to cool it down, then quickly moved from this warm object I used to LOVE to feel on my skin.

I share with you all simply because you legitimately understand that I'm not being dramatic in my description but describing actual sensory feelings (well misfires).

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Why do you have to be such a drama queen? (Couldn't resist, sorry.) So, allodynia, right? I just learned that term recently. Have you had other occurrences of allodynia? Hopefully not another new disturbing thing to add to your already super long list of health issues. Sorry I'm no help, just sympathetic.

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1 reply
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Rachel, Volunteer Mentor | @rwinney | Jun 17, 2020
In reply to @jesfactsmon "Why do you have to be such a drama queen? (Couldn't resist, sorry.) So, allodynia, right?..." + (show)
@jesfactsmon

Why do you have to be such a drama queen? (Couldn't resist, sorry.) So, allodynia, right? I just learned that term recently. Have you had other occurrences of allodynia? Hopefully not another new disturbing thing to add to your already super long list of health issues. Sorry I'm no help, just sympathetic.

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Yep, allodynia is correct and I have occurrences. My scalp is in a flare from having my hair cut and colored a week ago. I'm more of a delicate 🌷 than I ever imagined I'd be from neuropathy. I've learned that washing my hair every other day and letting it air dry, helps. Less friction the better. Also, as I've recently been learning...stay away from direct sunlight on your head! Crazzzyyyyy.

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1 reply
lioness | @lioness | Jun 17, 2020
In reply to @rwinney "Yep, allodynia is correct and I have occurrences. My scalp is in a flare from having..." + (show)
@rwinney

Yep, allodynia is correct and I have occurrences. My scalp is in a flare from having my hair cut and colored a week ago. I'm more of a delicate 🌷 than I ever imagined I'd be from neuropathy. I've learned that washing my hair every other day and letting it air dry, helps. Less friction the better. Also, as I've recently been learning...stay away from direct sunlight on your head! Crazzzyyyyy.

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@rwinney Did you ever look at the chemicals in hair color Maybe this is adding to your discomfort

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1 reply
Mentor
Rachel, Volunteer Mentor | @rwinney | Jun 17, 2020
In reply to @lioness "@rwinney Did you ever look at the chemicals in hair color Maybe this is adding to..." + (show)
@lioness

@rwinney Did you ever look at the chemicals in hair color Maybe this is adding to your discomfort

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Oh without a doubt that is an agitator!

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lioness | @lioness | Jun 17, 2020

@rwinney When I had to quit working I let my hair go and it went completely gray after my husband died but since I was still working I dyed it by after my fracture I couldn't work anymore so let it go

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lorirenee1 | @lorirenee1 | Jun 17, 2020
In reply to @rwinney "Here's a new one, anybody? The sun on top of my scalp...through mounds of hair... for..." + (show)
@rwinney

Here's a new one, anybody? The sun on top of my scalp...through mounds of hair... for 5 minutes...
It felt as though someone held an iron to my head. At first, I touselled my hair to cool it down, then quickly moved from this warm object I used to LOVE to feel on my skin.

I share with you all simply because you legitimately understand that I'm not being dramatic in my description but describing actual sensory feelings (well misfires).

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@rwinney Hi, Rachel! With neuropathy, nothing amazes me! After all, we have nerves throughout our bodies, and depending on what kind they are, they let out various signals. That is why my feet can ache, burn, be freezing cold, feel soaking wet when they are not, etc. And various odd things can happen all at the same time, depending on what type of nerves are involved. Just a bunch of different types of nerves with various messed up sensations. With autonomic neuropathy, I think you really can get a hodge podge of oddities. Sadly though, they can be bothersome, to horrid. Could you ever have imagined cutting and coloring your hair to be so crazy? I think we all could write a book on this. I hope, at least, your hair looks darling. Oh the agony! Oh the ecstasy! Love you, Lori

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2 replies
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Rachel, Volunteer Mentor | @rwinney | Jun 17, 2020
In reply to @lorirenee1 "@rwinney Hi, Rachel! With neuropathy, nothing amazes me! After all, we have nerves throughout our bodies,..." + (show)
@lorirenee1

@rwinney Hi, Rachel! With neuropathy, nothing amazes me! After all, we have nerves throughout our bodies, and depending on what kind they are, they let out various signals. That is why my feet can ache, burn, be freezing cold, feel soaking wet when they are not, etc. And various odd things can happen all at the same time, depending on what type of nerves are involved. Just a bunch of different types of nerves with various messed up sensations. With autonomic neuropathy, I think you really can get a hodge podge of oddities. Sadly though, they can be bothersome, to horrid. Could you ever have imagined cutting and coloring your hair to be so crazy? I think we all could write a book on this. I hope, at least, your hair looks darling. Oh the agony! Oh the ecstasy! Love you, Lori

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@lorirenee1 YOU get it Lori, YOU get it! 😃

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1 reply
Mentor
Rachel, Volunteer Mentor | @rwinney | Jun 17, 2020
In reply to @rwinney "@lorirenee1 YOU get it Lori, YOU get it! 😃" + (show)
@rwinney

@lorirenee1 YOU get it Lori, YOU get it! 😃

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Any further progress for you or still tweaking that stimulator?

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