Temperature intolerance and sensitivity - Autonomic Neuropathy?

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.

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).

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.

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.

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

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).

@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

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