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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 | Sep 10, 2020

@kyc117 and others - Here is the previous discussion on heat intolerance. Maybe it has useful info to add.

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lioness | @lioness | Sep 10, 2020
In reply to @lorirenee1 "@rwinney Hi, Rachel! With neuropathy, nothing amazes me! After all, we have nerves throughout our bodies,..." + (show)
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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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@lorirenee1 I wasn't aware of cold feet and neuropathy I have cold feet all the time have socks on still cold .I,ll remember to tell Dr about this never thought of it before .Thanks

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njh | @njh | Jun 17, 2021
In reply to @rwinney "@stefspad Without knowing I was deficient, I was slowly increasing in exhaustion, heat sensitivity, heavy breathing..." + (show)
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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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I also have Small Fiber Neuropathy and have had severe B12 Deficiency in 2000 of 71 (normal is 200-900 but my Neurologist at University of Michigan told me he likes for it to be over 500). When my B12 was 71, I couldn’t stand without holding onto something. I would sway back and forth. I was so weak I had difficulty pushing a grocery cart. I started out with B12 injections to get my level up to 200, and then had monthly injections for years. When I saw my Neurologist at U of MI in 2011, he wanted me to stop the B12 injections and switch to 1,000 mcg over the counter oral B12. I used Cyclocobalamin B12 tablets at first until I read that the Methylcobalamin B12 tablets are more easily absorbed. I use Nature’s Truth Brand 1,000 mcg Sublingual Tablets - one daily. They are available online. My B12 level is 2,000 now which my Neurologist is okay with - excess B12 is flushed from your body by the kidneys. I have permanent nerve damage in my arms and legs from when my B12 was only 71. I am the one that asked to be tested for B12 deficiency because my Mom had Pernicious Anemia with B12 deficiency in her mid 30’s and had B12 monthly injections for it for life, so I was aware of the symptoms for it. The nerve damage is from probably have very low levels for too
long. In 2,000 a B12 level of 200 was considered a normal level (now they know it needs to be at least 500 to help prevent nerve damage).

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lewin | @lewin | Sep 11, 2022
In reply to @adamek3638 "Autonomic neuropathy is related to autonomic nerves like heart rate and digestion. Temperature is typical for..." + (show)
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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

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Kathy why do you say check Igg levels? Don't know if you are still here.

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Rachel, Volunteer Mentor | @rwinney | Sep 12, 2022

@lacy2 Hi Valerie, thank you for your reply. How annoying when we have odd symptoms that we just can't figure out. Sorry you're experiencing temperature sensitivities and burning. It's no fun at all!

Yes, Dr. Google is dangerous. Do you have an appointment yet with your PCP? That's the best place to start and then possibly a neurologist. Do you have a neurologist? I would get in to see someone as soon as you are able.

I'm not a medical professional, but in my opinion, you may be experiencing central sensitization syndrome (CSS) which may indicate some form of neuropathy. Also, have you begun any new medications that perhaps are causing side effects? Do you take pain medications?

Regarding pointers, I think the best thing you can do is to roll with it by finding distractions to take your mind off of what you're feeling and to try and not let it dictate. Keeping calm and deep breathing through flares may help calm your central and peripheral sensory nervous systems down. Work towards figuring out why it's happening and how it can be treated. Do you have other medical conditions that may be contributing?

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Rachel, Volunteer Mentor | @rwinney | Sep 15, 2022

@lacy2 Hello there. That burning must be driving you nuts! How about contacting your neurologist, like you mentioned? Perhaps they can see you sooner than dermatology in January.

I would like to introduce you to my fellow mentor, Chris @artscaping. She is well versed in neuropathy and some skin conditions. I'm hoping she may weigh in with thoughts or suggestions for you as you wait to see doctors.

Did you end up going to the emergent care? It's not a bad idea if you are hoping to get started with some answers. Maybe I missed this, but are you not on nerve medication for your neuropathy?

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meg40 | @meg40 | Nov 19, 2024

Homeostasis is controlled by the autonomic nervous system, so any changes, such as temperature change, especially if sudden, often trigger my symptoms because the ANS is not functioning properly to normalize the body from external factors. I always try to dress in layers and keep a cool towel with me to regulate my temperature manually. Hope that may be useful for you too.

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