Temperature intolerance and sensitivity - Autonomic Neuropathy?

Posted by rwinney @rwinney, May 30 12:49am

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?

@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

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

Liked by rwinney

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@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

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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.

Liked by rwinney

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@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

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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

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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

Liked by lioness

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or look for dysautonomia

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@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

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@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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@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.

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@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.

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@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!

15908452337507610531355210042638

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@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!

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

Liked by rwinney

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@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

Hi @jimhd as a result of a ruptured AVM I also have neuropathy. I get overheated frequently and believe it is from my damaged nerves. They cannot sense body temperature as well. I often do tasks and take breaks in between. I do not stay outdoors longer than 15 minutes at a time when it gets hot. I live in Florida so I spend more time outdoors in the winters. The cooler temperatures are easier on me but I enjoy Florida’s climate all year long. I hope this helps. Unlike you, I do not have a progression and therefore do not take any medications because for my condition I refuse. I rather not deal with any additional health issues from potential side effects. The medications simply do not offer a cure. I find many of the medical staff has no answers so I rely on myself to research and learn by trial and error. Who would know my body better than me?

Liked by rwinney

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@rwinney

@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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Depends if you talk about underarms sweat on skin sweat. Skin sweat is related to sweat glands in the skin and small fibers neuropathy

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@avmcbellar

Hi @jimhd as a result of a ruptured AVM I also have neuropathy. I get overheated frequently and believe it is from my damaged nerves. They cannot sense body temperature as well. I often do tasks and take breaks in between. I do not stay outdoors longer than 15 minutes at a time when it gets hot. I live in Florida so I spend more time outdoors in the winters. The cooler temperatures are easier on me but I enjoy Florida’s climate all year long. I hope this helps. Unlike you, I do not have a progression and therefore do not take any medications because for my condition I refuse. I rather not deal with any additional health issues from potential side effects. The medications simply do not offer a cure. I find many of the medical staff has no answers so I rely on myself to research and learn by trial and error. Who would know my body better than me?

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Thats true. Doctors know drugs not our bodies and get offended when we say how we feel

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@stefspad

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

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@stefspad Without knowing I was deficient, I was slowly increasing in exhaustion, heat sensitivity, heavy breathing and heart palpitations. I would get out of breath walking up stairs and have to stop midway to catch my breath while my heart was racing. Any simple activity such as basic yard work, making beds, making lunch was exhausting me to the point where I'd essentially collapse on the floor or couch as if I'd run a marathon. Bending over to pull weeds in the heat made me red faced and I'd get intense pressure in my head and migraines increased.

Once deficiency was discovered via methylmelonic blood testing (while going through SFN workup), I began B12 injections every 2 weeks then was rechecked every 60-90 days until my numbers were back to normal. After 6 months or so I stopped injections and switched to oral B12 supplements. My B12 got down to 219. Normal range falls between 200-900. Each lab can vary on numbers and 219 was enough to do damage. My Neurologist claimed this to be my underlying cause of Small Fiber Neuropathy.

I caution anyone to please be aware of signs in your body, listen and report to your Dr. immediately. Also, in my opinion B12 should be monitored regularly in everyone regardless of not having symptoms as it can permanently destroy nerves and leave you disabled.

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@avmcbellar

Hi @jimhd as a result of a ruptured AVM I also have neuropathy. I get overheated frequently and believe it is from my damaged nerves. They cannot sense body temperature as well. I often do tasks and take breaks in between. I do not stay outdoors longer than 15 minutes at a time when it gets hot. I live in Florida so I spend more time outdoors in the winters. The cooler temperatures are easier on me but I enjoy Florida’s climate all year long. I hope this helps. Unlike you, I do not have a progression and therefore do not take any medications because for my condition I refuse. I rather not deal with any additional health issues from potential side effects. The medications simply do not offer a cure. I find many of the medical staff has no answers so I rely on myself to research and learn by trial and error. Who would know my body better than me?

Jump to this post

@avmcbellar More power to you for not using medications! Very admirable. I cant imagine how immobilized I'd be without pain relief from medication. I hope to one day find others ways that can handle and treat my pain. #MayoClinic
Keep up the good work!

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