1. < Neuropathy

Heat Intolerance: Symptom of Neuropathy?

Posted by kyc117 @kyc117, Sep 7, 2020

So I am waiting to get my diagnosis, but does anyone else feel odd after being out in the heat for a period of time? I love gardening this weekend was watering for about 20 minutes in the sun. I just felt weird afterwards, symptoms I can't explain. Sweat will just roll down my face, this never happened with me before.I love to take hot showers and one time I felt somewhat ill afterwards. I just feel I can't be out in the heat anymore.

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sunnyflower | @sunnyflower | Sep 13, 2020
In reply to @margaret10 "Heat and cold intolerance can also be a symptom of adrenal insufficiency or Addison's Disease, which..." + (show)
@margaret10

Heat and cold intolerance can also be a symptom of adrenal insufficiency or Addison's Disease, which I have. An endocrinologist who has experience with Addison's can test your adrenal gland function and prescribe adrenal hormone supplements (hydrocortisone, fludrocort, progesterone, DHEA and electrolytes) to lessen the symptoms. Treatment has helped me by reducing dizziness, brain fog, exhaustion, etc., but it has not eliminated my symptoms. Low cortisol (hydrocortisone) can cause insufficient regulation of immune response, leading to too much inflammation and possibly neuropathy.

Jump to this post

Hi Margaret10, wow, I too have adrenal insufficiency. I am what they call steroid dependent, which caused it from being on steroids for so many years for my lungs and my mixed connective tissue autoimmune disease/s/inflammation. No wonder my thermostat is off!! The answer to adrenal insufficiency is steroids ironicaly. I take my daily 10mg, but have injectable for when I'm in crisis-can't take my oral due to illness or something. I hope and pray you can have some victory in your circumstances. So much going on. I get it. I wish you the comfort and peace of God through Christ which transcends all human understanding (Philippians 4:7), which is the only thing that gets me through!! Warmest regards, Sunnyflower

REPLY
Hank | @jesfactsmon | Sep 14, 2020
In reply to @margaret10 "Hi Hank, My Addison's is a result of the surgical removal of my left adrenal gland..." + (show)
@margaret10

Hi Hank,

My Addison's is a result of the surgical removal of my left adrenal gland that had a tumor (pheochromocytoma) when I was 9 years old. The tumor was caused by a mutation in my SDHB gene which I likely inherited from one of my parents. My remaining adrenal is only able to partially compensate for the missing one, resulting in decreased adrenal hormones. My Addison's was not diagnosed until age 42.

Addison's can be caused by a genetic mutation, tuberculosis, an autoimmune disease (the most common cause), etc., but I am not aware that it is caused by neuropathy. As you know, neuropathy can be caused by hundreds of different disorders. In my case, I believe it's caused by marginal cortisol deficiency resulting in an overactive immune system and resulting inflammation in my feet.

Your brother could, if he hasn't already, see an endocrinologist and ask for tests that measure his adrenal hormone levels, and if they're low, get a prescription for what he's missing. He could also get an anti-nuclear antibody test to find out if it's autoimmune. Best of luck to him.
Margaret

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@margaret10 Thank-you for the info that my brother might be able to have his levels improved by a prescription. I will pass that on to him in case he does not know. He has been under a doctor's care for years so he may already know his options. Like @sunnyflower he takes a steroid dose each morning. It's unpleasant as he usually gets a bit nauseous right after taking it and sometimes throws up, but he seems to do okay other than that. Thanks again, Hank

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sunnyflower | @sunnyflower | Sep 17, 2020
In reply to @rwinney "@sunnyflower What powerful, truthful words you speak. I'm still mourning my loss and I admit it...." + (show)
@rwinney

@sunnyflower What powerful, truthful words you speak. I'm still mourning my loss and I admit it. I want so bad to get to the other side of acceptance and will never stop trying. I do recognize positives however so, I know I'm on the right path. 👍🏻

I definitely look up to you 🌞🌷.Thanks for being a Connect member and bringing such a presence of strength even through your massive struggles. You are a priceless presence.

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Hi Rachel, I can't recall responding to this beautiful message. I looked around and didn't find that I responded. Thanks so much for your kind words! They mean a lot.

I hope and pray I can be worthy of your opinion of me and that I can, with God's help, be supportive and offer hope and comfort to everyone.

By the grace of God go I, literally! Be well, Sunnyflower. @jesthefactsmon

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brooklyn4870 | @brooklyn4870 | Nov 22, 2022

Has anyone had this? I got this in 2014. It changed my life. I don't work, I don't go to the gym anymore, I don't date. I pretty much gave up my whole life. I went to all kind of doctors. Mayo in Phoenix, dermatologist, endo, everybody! My neurologist here said it was a small fiber neuropathy. I found a specialist here in Jacksonville and made an appointment. I was on a waiting list almost a year. I seen Dr. Cheshire, neurologist with Mayo Jacksonville. I had a bunch of nerve tests done. He confirmed it was small fiber neuropathy. But, I lost my life. I keep my house at 68 degrees. I have had this since 2014. I miss my life. No cure. Anyone else have this. I just burn up anywhere I go. I don't travel anymore, I don't date. I don't go anywhere. I'm lost. I don't know anyone that has this. There is no cure. I don't know how I am supposed to live like this anymore. I'm 52 years old. Anyone? In the winter I don't use the heat. I let the house get down to fifty something. I don't cook in the summer. My family...well, it was a bother to them so I have no support. No one. I would love a significant other, but I guess I will die alone. Who am I going to meet that is going to sit in the house with me? No one. I'm sad. I have no idea what caused this.

REPLY
3 replies
sharka | @sharka | Nov 23, 2022
In reply to @brooklyn4870 "Has anyone had this? I got this in 2014. It changed my life. I don't work,..." + (show)
@brooklyn4870

Has anyone had this? I got this in 2014. It changed my life. I don't work, I don't go to the gym anymore, I don't date. I pretty much gave up my whole life. I went to all kind of doctors. Mayo in Phoenix, dermatologist, endo, everybody! My neurologist here said it was a small fiber neuropathy. I found a specialist here in Jacksonville and made an appointment. I was on a waiting list almost a year. I seen Dr. Cheshire, neurologist with Mayo Jacksonville. I had a bunch of nerve tests done. He confirmed it was small fiber neuropathy. But, I lost my life. I keep my house at 68 degrees. I have had this since 2014. I miss my life. No cure. Anyone else have this. I just burn up anywhere I go. I don't travel anymore, I don't date. I don't go anywhere. I'm lost. I don't know anyone that has this. There is no cure. I don't know how I am supposed to live like this anymore. I'm 52 years old. Anyone? In the winter I don't use the heat. I let the house get down to fifty something. I don't cook in the summer. My family...well, it was a bother to them so I have no support. No one. I would love a significant other, but I guess I will die alone. Who am I going to meet that is going to sit in the house with me? No one. I'm sad. I have no idea what caused this.

Jump to this post

Hello there!
You're definitely not alone in this crazy temperature intolerance world.
I was diagnosed five years ago with sfn, but my drs saying I probably had it for much longer.
That's when my hot flashes started, but even worse is the chills 😫!
I'm shivering one minute, and as soon as I put cardi on, I'm steaming hot. And when I'm on fire, I'm all red, so everyone can see it, but I don't care anymore.
It's so annoying. I've got this for five years now. I've just learnt to live with that, because we have to! I just keep changing my clothes a few times a day, or just have layers which I'm piling on or off!
In winter my hubby just use blanket when watching TV, and at least we save on heating bills.
Was hard to sleep with this flatuating temperature, but now for the past month I'm using medical marihuana oil, 10mg cbd and 10mg thc in one milligram, which I gradually got from 0.5 ml to 1 ml and now sleeping like a baby, and that's make my life much better.
My dear, you're not alone in this !!!
Try to enjoy every day, because this sfn can become eventually worse, but not necessarily, everyone is different! 😉 😊

REPLY
2 replies
Moderator
Amanda Roe | @amandajro | Nov 23, 2022
In reply to @brooklyn4870 "Has anyone had this? I got this in 2014. It changed my life. I don't work,..." + (show)
@brooklyn4870

Has anyone had this? I got this in 2014. It changed my life. I don't work, I don't go to the gym anymore, I don't date. I pretty much gave up my whole life. I went to all kind of doctors. Mayo in Phoenix, dermatologist, endo, everybody! My neurologist here said it was a small fiber neuropathy. I found a specialist here in Jacksonville and made an appointment. I was on a waiting list almost a year. I seen Dr. Cheshire, neurologist with Mayo Jacksonville. I had a bunch of nerve tests done. He confirmed it was small fiber neuropathy. But, I lost my life. I keep my house at 68 degrees. I have had this since 2014. I miss my life. No cure. Anyone else have this. I just burn up anywhere I go. I don't travel anymore, I don't date. I don't go anywhere. I'm lost. I don't know anyone that has this. There is no cure. I don't know how I am supposed to live like this anymore. I'm 52 years old. Anyone? In the winter I don't use the heat. I let the house get down to fifty something. I don't cook in the summer. My family...well, it was a bother to them so I have no support. No one. I would love a significant other, but I guess I will die alone. Who am I going to meet that is going to sit in the house with me? No one. I'm sad. I have no idea what caused this.

Jump to this post

Hello @brooklyn4870 and welcome to Mayo Clinic Connect. I can tell this has not only been life-changing but also really trying on you personally and with your family as well making it all extra difficult.

I am so happy to see another member, @sharka, has joined you to share her experience and to let you know you are not alone.

To that note, you will notice that I have moved your post into an existing discussion on this same topic where other members have been sharing as well.

Aside from controlling the temperature you are exposed to, have you tried anything else along the way that worked, or didn't' work?

REPLY
1 reply
brooklyn4870 | @brooklyn4870 | Nov 23, 2022
In reply to @amandajro "Hello @brooklyn4870 and welcome to Mayo Clinic Connect. I can tell this has not only been..." + (show)
@amandajro

Hello @brooklyn4870 and welcome to Mayo Clinic Connect. I can tell this has not only been life-changing but also really trying on you personally and with your family as well making it all extra difficult.

I am so happy to see another member, @sharka, has joined you to share her experience and to let you know you are not alone.

To that note, you will notice that I have moved your post into an existing discussion on this same topic where other members have been sharing as well.

Aside from controlling the temperature you are exposed to, have you tried anything else along the way that worked, or didn't' work?

Jump to this post

Thank you so much. I tried everything. The doctor just said there are new discoveries everyday. So, nothing for me to try. Mostly, worse than the heat intolerance. No one has receive it well. No one even talks to me anymore in my family. They thought I was just being a b*tch. I don't want to live 30 more years with this. Very odd, I got kidney cancer in 2020. Beat it. Beat it, to stay alive to live in a bubble. I wish I would have just died.

REPLY
brooklyn4870 | @brooklyn4870 | Nov 23, 2022

I have it. In 2014 I became severely heat intolerant. I just live in my house. I don't have a life. I burn up if there is no air moving in a room. I have trouble going to restaurants, no movies, no stores. No life at all and no hope of one.

REPLY
1 reply
brooklyn4870 | @brooklyn4870 | Nov 23, 2022
In reply to @sharka "Hello there! You're definitely not alone in this crazy temperature intolerance world. I was diagnosed five..." + (show)
@sharka

Hello there!
You're definitely not alone in this crazy temperature intolerance world.
I was diagnosed five years ago with sfn, but my drs saying I probably had it for much longer.
That's when my hot flashes started, but even worse is the chills 😫!
I'm shivering one minute, and as soon as I put cardi on, I'm steaming hot. And when I'm on fire, I'm all red, so everyone can see it, but I don't care anymore.
It's so annoying. I've got this for five years now. I've just learnt to live with that, because we have to! I just keep changing my clothes a few times a day, or just have layers which I'm piling on or off!
In winter my hubby just use blanket when watching TV, and at least we save on heating bills.
Was hard to sleep with this flatuating temperature, but now for the past month I'm using medical marihuana oil, 10mg cbd and 10mg thc in one milligram, which I gradually got from 0.5 ml to 1 ml and now sleeping like a baby, and that's make my life much better.
My dear, you're not alone in this !!!
Try to enjoy every day, because this sfn can become eventually worse, but not necessarily, everyone is different! 😉 😊

Jump to this post

Thank you so much.

REPLY
brooklyn4870 | @brooklyn4870 | Nov 23, 2022
In reply to @sharka "Hello there! You're definitely not alone in this crazy temperature intolerance world. I was diagnosed five..." + (show)
@sharka

Hello there!
You're definitely not alone in this crazy temperature intolerance world.
I was diagnosed five years ago with sfn, but my drs saying I probably had it for much longer.
That's when my hot flashes started, but even worse is the chills 😫!
I'm shivering one minute, and as soon as I put cardi on, I'm steaming hot. And when I'm on fire, I'm all red, so everyone can see it, but I don't care anymore.
It's so annoying. I've got this for five years now. I've just learnt to live with that, because we have to! I just keep changing my clothes a few times a day, or just have layers which I'm piling on or off!
In winter my hubby just use blanket when watching TV, and at least we save on heating bills.
Was hard to sleep with this flatuating temperature, but now for the past month I'm using medical marihuana oil, 10mg cbd and 10mg thc in one milligram, which I gradually got from 0.5 ml to 1 ml and now sleeping like a baby, and that's make my life much better.
My dear, you're not alone in this !!!
Try to enjoy every day, because this sfn can become eventually worse, but not necessarily, everyone is different! 😉 😊

Jump to this post

I have to work. I don't know where to work. The morgue?

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