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.

Interested in more discussions like this? Go to the Neuropathy Support Group.

sharka | @sharka | Nov 23, 2022
In reply to @brooklyn4870 "I have to work. I don't know where to work. The morgue?" + (show)
@brooklyn4870

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

Jump to this post

I would look into happy , mood lifting supplements, or medicinal marihuana, whatever you can use, after consultation with your doctor. And I will wear all the time , some scarves dipped in cold water, or even keep some in freezer and rotate them. I would use soft towel ones for gym, and some beautiful for going out or work.
Cotton, cashmere, in zip lock bag and freeze them, not damp, just dry scarves and keep changing them.
You can keep some in work fridge or freezer, or in the car in freeze bag or picnic box with ice? Just suggesting, what I would try.
I'm sure you've tried lots of things, and yes, it's annoying, especially we're not that old, as to say, getting old suck, but it really does.
I've got my diagnosis at 54 years of age, but it started earlier.

REPLY
1 reply
casey1329 | @casey1329 | Nov 24, 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.

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I feel bad for you. You sound so down. Don't give up on meeting some one. Maybe join some clubs or activities connected with your church or house of worship. I have friends that volunteer in the churches food pantry and have meet some nice people. One friend of mine has a son with many health challenges in a wheelchair but has managed to get out and about and just recently announced his engagement.
On a another note , don't let the house temp. go below 55 because the pipes might freeze.
I hope in some small way I've helped...good luck.

REPLY
1 reply
brooklyn4870 | @brooklyn4870 | Nov 25, 2022
In reply to @casey1329 "I feel bad for you. You sound so down. Don't give up on meeting some one...." + (show)
@casey1329

I feel bad for you. You sound so down. Don't give up on meeting some one. Maybe join some clubs or activities connected with your church or house of worship. I have friends that volunteer in the churches food pantry and have meet some nice people. One friend of mine has a son with many health challenges in a wheelchair but has managed to get out and about and just recently announced his engagement.
On a another note , don't let the house temp. go below 55 because the pipes might freeze.
I hope in some small way I've helped...good luck.

Jump to this post

Thank you so much.

REPLY
Hayabusa1300 | @milesdaviskindofblue | Nov 26, 2022

Hi Brooklyn . As everyone has said don’t give up little lady God has a plan for us just believe in him . We’ve all been through something traumatic I just turned 52 myself and since 2020 Ive not been able to Walk and in a wheelchair I still fight every day this dang disease ain’t whooping me 🙏🏻 I do pull-ups 3 days a week and use bands to stretch my leg muscles I also have a contraction machine to stimulate my leg , calf, Quads, hamstrings etc
I have pain 24/7 it never shuts off mind of matter . I know all to well about the HEAT I sleep with gel ice packs 3 of them I made little pillowcases for the ones I have so I can wash them . This helps me tremendously I thought I would share this little thing I do any gel pack will work I bought mine at CVS pharmacy through the drive thru as it very difficult me to go places even though I have drive controls in my truck try this method I think you’ll like it . Hang in there I’ll say a prayer for you every day as do with everyone on this board . God Bless Everyone today lord as we need blessings and guidance thank you for not judging
me and helping me through difficult times Amen !!! 🙏🏻
REPLY
1 reply
brooklyn4870 | @brooklyn4870 | Nov 26, 2022
In reply to @milesdaviskindofblue "Hi Brooklyn . As everyone has said don’t give up little lady God has a plan..." + (show)
@milesdaviskindofblue

Hi Brooklyn . As everyone has said don’t give up little lady God has a plan for us just believe in him . We’ve all been through something traumatic I just turned 52 myself and since 2020 Ive not been able to Walk and in a wheelchair I still fight every day this dang disease ain’t whooping me 🙏🏻 I do pull-ups 3 days a week and use bands to stretch my leg muscles I also have a contraction machine to stimulate my leg , calf, Quads, hamstrings etc
I have pain 24/7 it never shuts off mind of matter . I know all to well about the HEAT I sleep with gel ice packs 3 of them I made little pillowcases for the ones I have so I can wash them . This helps me tremendously I thought I would share this little thing I do any gel pack will work I bought mine at CVS pharmacy through the drive thru as it very difficult me to go places even though I have drive controls in my truck try this method I think you’ll like it . Hang in there I’ll say a prayer for you every day as do with everyone on this board . God Bless Everyone today lord as we need blessings and guidance thank you for not judging
me and helping me through difficult times Amen !!! 🙏🏻

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Thank you. I really appreciate it.

REPLY
brooklyn4870 | @brooklyn4870 | Nov 26, 2022
In reply to @sharka "I would look into happy , mood lifting supplements, or medicinal marihuana, whatever you can use,..." + (show)
@sharka

I would look into happy , mood lifting supplements, or medicinal marihuana, whatever you can use, after consultation with your doctor. And I will wear all the time , some scarves dipped in cold water, or even keep some in freezer and rotate them. I would use soft towel ones for gym, and some beautiful for going out or work.
Cotton, cashmere, in zip lock bag and freeze them, not damp, just dry scarves and keep changing them.
You can keep some in work fridge or freezer, or in the car in freeze bag or picnic box with ice? Just suggesting, what I would try.
I'm sure you've tried lots of things, and yes, it's annoying, especially we're not that old, as to say, getting old suck, but it really does.
I've got my diagnosis at 54 years of age, but it started earlier.

Jump to this post

I would love to know what it gave it to us. So very odd.

REPLY
1 reply
brooklyn4870 | @brooklyn4870 | Nov 26, 2022
In reply to @brooklyn4870 "I would love to know what it gave it to us. So very odd." + (show)
@brooklyn4870

I would love to know what it gave it to us. So very odd.

Jump to this post

Thank you all so much. You helped me. I been watching the group for awhile but, I never wrote. You know that feeling in your stomach when you have to try to explain it to people and they don't get it? I bring a fan in my purse...everywhere I go. I think I had to just do the holiday. My first one alone. But I made a turkey with all the trimmings. It was wonderful!! You know when you cook something so well, you're proud? I was. And I was happy I cooked so well. I haven't cooked since February. I just buy whatever. Anyway, I feel better. I just didn't know what to expect for being alone the holidays.

I go a few places sometimes. I loved this Italian restaurant, I went once a week. But, now that it's winter...even though it's still hot....I went recently several times. Now they don't have the ac running because it's not summer. So, that sucked. Believe it or not it is easier to live somewhere hot, even though I'm not crazy about extreme heat. Because in the summer, everywhere has good ac running. Because I thought about this years ago. I thought of moving somewhere cold. It's worse. If it's cold....then the heat is on everywhere. Like the grocery store, and restaurants. So, no way. Living somewhere where the heat was on.....no way. I went to Vail last year...OMG it was like 7 degrees. I LOVED IT. I was out in a tee shirt. I hope to write more. Well, look at that. I wrote a positive message. Maybe being able to talk to people helped too. You guys were my therapy...and still are. Send me the bill.

Have a good night you all. Attached is a pic of my Winnie. I love animals. I've had collies over 25 years. This is Winnie at a few months old. Thank you all. Please don't leave me. I get lonely. And just to talk to people who understand what a "small fiber neuropathy" is. No one believes it is even a thing...lol...people just look at me like...what? Enjoy this puppy picture of Winne.
REPLY
1 reply
dablues | @dablues | Nov 28, 2022
In reply to @johnbishop "Hello @kyc117, You will notice I changed your discussion title a little so that members that..." + (show)
@johnbishop

Hello @kyc117, You will notice I changed your discussion title a little so that members that have noticed the same symptoms can share their experience with you. I've always been sensitive to heat and sweating even before my neuropathy but I do notice that the Winter time bothers me the most with the cold temperatures affecting my legs. While we wait for other members to share their experience with heat intolerance and neuropathy, I did find an interesting article that discusses the topic.

"For example, some sensory nerve damage can cause patients to lose their senses of pain and temperature changes. This numbness can place patients at risk of contracting sunburn without being able to feel it. Other autonomic nerve symptoms may include heat intolerance and increased sweating.May 6, 2020"
-- How Neuropathy Patients Can Manage the Return of Warm Weather: https://fapnewstoday.com/2020/05/06/neuropathy-warm-weather-hot/

You posted earlier that you had an EMG test and are waiting for results. Can you provide an update when you have a diagnosis?

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The first time I had a EMG test it came back normal, but the next time it came back I had Neuropathy. Didn't make sense. My symptoms started after I took the double dose Shingrix Vaccine in November 2019 and been messed up off and on since then. I had all kinds of xrays, scans, mri's EEG, EMG, and couldn't find anything, then they found neuropathy the second time around. Doesn't make sense, never did. I had only 1 doctor state it was vaccine related. So how do you "undo" a vaccine related injury?

REPLY
2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Nov 28, 2022
In reply to @dablues "The first time I had a EMG test it came back normal, but the next time..." + (show)
@dablues

The first time I had a EMG test it came back normal, but the next time it came back I had Neuropathy. Didn't make sense. My symptoms started after I took the double dose Shingrix Vaccine in November 2019 and been messed up off and on since then. I had all kinds of xrays, scans, mri's EEG, EMG, and couldn't find anything, then they found neuropathy the second time around. Doesn't make sense, never did. I had only 1 doctor state it was vaccine related. So how do you "undo" a vaccine related injury?

Jump to this post

If there was an undo option, there would definitely be a lot of happy campers in the world. The best you can do is find something that provides relief for the symptoms, hopefully something that doesn't require drugs (in my humble opinion).

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