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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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Mentor
Jim, Volunteer Mentor | @jimhd | May 30, 2020

@rwinney I had a strange day today. It got up to 90 today, which is pretty hot for central Oregon. As usual I was working outside, weeding and mowing, and I had to stop every 5 minutes or so to drink water. After an hour I had to go into the house and lie down for 30 minutes. I felt close to passing out, probably from the heat. This is new for me, and your making a connection with AN makes me wonder if that could explain my reaction to heat.

I also noticed that I wasn't sweating much, even though I was really hot.

I started taking Prednisone yesterday and wonder if there's a connection. The neurologist is having me try it long term at a low dose to slow the progression of neuropathy. I reported several new symptoms and increases in symptoms since my last appointment with him. I think he was concerned about the rapid progression.

I guess the learning curve is unending.

Jim

REPLY
4 replies
Kathy84 | @adamek3638 | May 30, 2020

Autonomic neuropathy is related to autonomic nerves like heart rate and digestion. Temperature is typical for small fibers neuropathy. Test Igg vs Fgfr3 antibody

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1 reply
Kathy84 | @adamek3638 | May 30, 2020
In reply to @jimhd "@rwinney I had a strange day today. It got up to 90 today, which is pretty..." + (show)
@jimhd

@rwinney I had a strange day today. It got up to 90 today, which is pretty hot for central Oregon. As usual I was working outside, weeding and mowing, and I had to stop every 5 minutes or so to drink water. After an hour I had to go into the house and lie down for 30 minutes. I felt close to passing out, probably from the heat. This is new for me, and your making a connection with AN makes me wonder if that could explain my reaction to heat.

I also noticed that I wasn't sweating much, even though I was really hot.

I started taking Prednisone yesterday and wonder if there's a connection. The neurologist is having me try it long term at a low dose to slow the progression of neuropathy. I reported several new symptoms and increases in symptoms since my last appointment with him. I think he was concerned about the rapid progression.

I guess the learning curve is unending.

Jim

Jump to this post

Sweating is small fibers neuropathy. With passing - you should check your pulse and heart rate. if it's vasovagal syncope - then yes its autonomic neuropathy.

REPLY
1 reply
Kathy84 | @adamek3638 | May 30, 2020
In reply to @jimhd "@rwinney I had a strange day today. It got up to 90 today, which is pretty..." + (show)
@jimhd

@rwinney I had a strange day today. It got up to 90 today, which is pretty hot for central Oregon. As usual I was working outside, weeding and mowing, and I had to stop every 5 minutes or so to drink water. After an hour I had to go into the house and lie down for 30 minutes. I felt close to passing out, probably from the heat. This is new for me, and your making a connection with AN makes me wonder if that could explain my reaction to heat.

I also noticed that I wasn't sweating much, even though I was really hot.

I started taking Prednisone yesterday and wonder if there's a connection. The neurologist is having me try it long term at a low dose to slow the progression of neuropathy. I reported several new symptoms and increases in symptoms since my last appointment with him. I think he was concerned about the rapid progression.

I guess the learning curve is unending.

Jim

Jump to this post

Regarding prednisone I developed prednisone withdrawal syndrome, adrenal insufficiency, pituitary insufficiency and post steroid Cushing syndrome with all tve worst side effects. Hope your dr told you about them

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | May 30, 2020

Hi Rachel @rwinney, Have you ever used Google Scholar in your searching for medical and research information? I did a search using "Temperature intolerance and sensitivity + Autonomic Neuropathy" and then selected Since 2020 in the left column and came up with quite a bit of information. Didn't read through any of the articles but may later.

https://scholar.google.com/scholar?as_ylo=2020&q=Temperature+intolerance+and+sensitivity+%2B+Autonomic+Neuropathy&hl=en&as_sdt=0,24
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1 reply
Mentor
Rachel, Volunteer Mentor | @rwinney | May 30, 2020
In reply to @johnbishop "Hi Rachel @rwinney, Have you ever used Google Scholar in your searching for medical and research..." + (show)
@johnbishop

Hi Rachel @rwinney, Have you ever used Google Scholar in your searching for medical and research information? I did a search using "Temperature intolerance and sensitivity + Autonomic Neuropathy" and then selected Since 2020 in the left column and came up with quite a bit of information. Didn't read through any of the articles but may later.

https://scholar.google.com/scholar?as_ylo=2020&q=Temperature+intolerance+and+sensitivity+%2B+Autonomic+Neuropathy&hl=en&as_sdt=0,24

Jump to this post

@johnbishop No, I haven't gotten that elite (believe it or not 😉) with my research but, will check it out. Thanks for the jump start with the link. Autonomic does encompass the sweat factor so I circle back around to it for more clarity or further definition to omit it as the culprit. Hope you have a pleasant day John. Enjoy those birds!
Rachel

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1 reply
Mentor
Rachel, Volunteer Mentor | @rwinney | May 30, 2020
In reply to @jimhd "@rwinney I had a strange day today. It got up to 90 today, which is pretty..." + (show)
@jimhd

@rwinney I had a strange day today. It got up to 90 today, which is pretty hot for central Oregon. As usual I was working outside, weeding and mowing, and I had to stop every 5 minutes or so to drink water. After an hour I had to go into the house and lie down for 30 minutes. I felt close to passing out, probably from the heat. This is new for me, and your making a connection with AN makes me wonder if that could explain my reaction to heat.

I also noticed that I wasn't sweating much, even though I was really hot.

I started taking Prednisone yesterday and wonder if there's a connection. The neurologist is having me try it long term at a low dose to slow the progression of neuropathy. I reported several new symptoms and increases in symptoms since my last appointment with him. I think he was concerned about the rapid progression.

I guess the learning curve is unending.

Jim

Jump to this post

@jimhd Thanks for your input Jim and good luck with narrowing down your source.

REPLY
Mentor
Rachel, Volunteer Mentor | @rwinney | May 30, 2020
In reply to @adamek3638 "Sweating is small fibers neuropathy. With passing - you should check your pulse and heart rate...." + (show)
@adamek3638

Sweating is small fibers neuropathy. With passing - you should check your pulse and heart rate. if it's vasovagal syncope - then yes its autonomic neuropathy.

Jump to this post

@adamek3638 Thanks for your input Kathy. I agree that SFN controls sensory transmissions and I think is the sole cause for my temperature sensitivity. It has always seemed that autonomic is it's own very different animal. I'm trying to connect with other SFN folks that may share these symptoms but, we are all so different. When I was B12 deficient I had racing heart, rapid breathing and felt close to passing out. Since regulating B12, I do not feel that way. Found this chart to refresh myself and others who may find it useful. Enjoy your day!
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1 reply
stefspad | @stefspad | May 30, 2020
In reply to @rwinney "@adamek3638 Thanks for your input Kathy. I agree that SFN controls sensory transmissions and I think..." + (show)
@rwinney

@adamek3638 Thanks for your input Kathy. I agree that SFN controls sensory transmissions and I think is the sole cause for my temperature sensitivity. It has always seemed that autonomic is it's own very different animal. I'm trying to connect with other SFN folks that may share these symptoms but, we are all so different. When I was B12 deficient I had racing heart, rapid breathing and felt close to passing out. Since regulating B12, I do not feel that way. Found this chart to refresh myself and others who may find it useful. Enjoy your day!

Jump to this post

@rwinney Please tell us more about “regulating B12.” Thanks, Steph

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