advertisement
Reply
 
Thread Tools Display Modes
Old 06-17-2015, 10:02 PM #11
madisongrrl's Avatar
madisongrrl madisongrrl is offline
Member
 
Join Date: Jul 2014
Location: Midwest
Posts: 584
8 yr Member
madisongrrl madisongrrl is offline
Member
madisongrrl's Avatar
 
Join Date: Jul 2014
Location: Midwest
Posts: 584
8 yr Member
Default

Quote:
Originally Posted by janieg View Post
It's so bizarre how different our problems are. I went to the dentist today and got a hair cut. Both places had their A/C going, and the one thermostat I saw was reporting a temp of 72.

I was miserable. I had near non-stop tingles/rushes and couldn't into my hot car fast enough.
Oh yes, totally bizarre. I will say that when this awful disease came full on last year, any cool breeze bothered me too. It was like a cold, acid hypersensitivity that would wash over all my skin when the air conditioner would blow on me at work. I fully suspect that the reason I don't get that feeling much anymore is due to the 2-fold increase in gabapentin dosage. However, during those cold winter weeks we had in Wisconsin (15F and less), my feet would burn if I got in the car to drive somewhere.
madisongrrl is offline   Reply With QuoteReply With Quote

advertisement
Old 06-17-2015, 10:05 PM #12
madisongrrl's Avatar
madisongrrl madisongrrl is offline
Member
 
Join Date: Jul 2014
Location: Midwest
Posts: 584
8 yr Member
madisongrrl madisongrrl is offline
Member
madisongrrl's Avatar
 
Join Date: Jul 2014
Location: Midwest
Posts: 584
8 yr Member
Default

I should add that I also get a rash on the sides of my face and neck that appears almost every single day but is NOT from the sun. This started a few months before my major symptom onset and has been occurring ever since. Perhaps others get this as well?
madisongrrl is offline   Reply With QuoteReply With Quote
Old 06-17-2015, 11:44 PM #13
KnowNothingJon KnowNothingJon is offline
Member
 
Join Date: May 2014
Location: Buffalo, NY
Posts: 543
10 yr Member
KnowNothingJon KnowNothingJon is offline
Member
 
Join Date: May 2014
Location: Buffalo, NY
Posts: 543
10 yr Member
Default

I have had a fan on me at work every day for years, even through our arctic winter this year. I have always run warm, but now it is amplified.

If I were in Spinal Tap I'd claim it goes to 11.
__________________
I urge you to please notice when you are happy, and exclaim or murmur or think at some point, "If this isn't nice, I don't know what is." - Kurt Vonnegut
"It's an art to live with pain, mix the light into grey"- Eddie Vedder
Just because I cannot see it, doesn't mean I can't believe it! - Jack Skellington
KnowNothingJon is offline   Reply With QuoteReply With Quote
Old 06-18-2015, 07:27 AM #14
Healthgirl Healthgirl is offline
Member
 
Join Date: Dec 2014
Posts: 791
8 yr Member
Healthgirl Healthgirl is offline
Member
 
Join Date: Dec 2014
Posts: 791
8 yr Member
Default

Quote:
Originally Posted by canagirl View Post
Does the sun hurt you? When I'm out in the sun I feel ok (sometimes increased burning) but when I come in I definitely have increased burning. Do you have this too? Sorry, burning has been really bad the last few days. legs and face inparticular, they won't stop they are on fire 24/7 right now. Normally, the burning comes for a bit in my face then stops then starts etc. ( but this happens all over my body).
Yes definitely increased burning from the sun. I feel it so intensely all over my body when I'm out and when I come in. This rash thing is totally new though. I have been in the sun since May every sunny day and this just started.
Mostly my burning symptoms have turned into a hot tight disturbing feeling. I cannot take a hot bath or it sets it off. I put my air conditioner on in the bedroom at 66 and it helps tremendously.
Healthgirl is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
canagirl (06-18-2015)
Old 06-18-2015, 07:32 AM #15
mrsD's Avatar
mrsD mrsD is offline
Wisest Elder Ever
 
Join Date: Aug 2006
Location: Great Lakes
Posts: 33,508
15 yr Member
mrsD mrsD is offline
Wisest Elder Ever
mrsD's Avatar
 
Join Date: Aug 2006
Location: Great Lakes
Posts: 33,508
15 yr Member
Question

Do you only get this on exposed skin (exposed to UV?)

Anywhere else besides the thighs?
__________________
All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei

************************************

.
Weezie looking at petunias 8.25.2017


****************************
These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
mrsD is offline   Reply With QuoteReply With Quote
Old 06-18-2015, 07:44 AM #16
Healthgirl Healthgirl is offline
Member
 
Join Date: Dec 2014
Posts: 791
8 yr Member
Healthgirl Healthgirl is offline
Member
 
Join Date: Dec 2014
Posts: 791
8 yr Member
Default

Quote:
Originally Posted by madisongrrl View Post
Oh yes, totally bizarre. I will say that when this awful disease came full on last year, any cool breeze bothered me too. It was like a cold, acid hypersensitivity that would wash over all my skin when the air conditioner would blow on me at work. I fully suspect that the reason I don't get that feeling much anymore is due to the 2-fold increase in gabapentin dosage. However, during those cold winter weeks we had in Wisconsin (15F and less), my feet would burn if I got in the car to drive somewhere.
Winter was hellish for me too. The cold hurt so bad that every part of me was shooting pains down to my bones. Oh God, it was so bad. I can't actually be in temperatures of below 60 or my autonomic stuff goes haywire. My breathing becomes extremely shallow and so many parts go numb. I have had to leave my sons spring baseball games to get in the car because I felt like I was going to die. Fast shallow panting breaths, stiffening of muscles, shaking- can barely even talk. As soon as I got in the car and got to a normal temp, it would calm down.

It seems that I need to be in temps of steady 65 (with blanket or sweater) and up to 75 degrees to be ok.
I never had a problem with cold in my life!

I am trying not to be terrified of next winter and to take this a day at a time. Other things have improved, so I don't know where I am with this. Worrying about the fall/winter will only make me insane.
Healthgirl is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
canagirl (06-18-2015)
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off



All times are GMT -5. The time now is 02:51 PM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.