advertisement
Reply
 
Thread Tools Display Modes
Old 09-13-2015, 10:51 AM #1
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 How do you put body burning into remission?

After over 1.5 years of having burning all over my body, it looks like I have found an answer to this question.

I'm currently in a significant hives outbreak. Against my better judgement, I had a hot wrap on my neck during a dentist visit over a week ago. Two days later, hives started to break out on the back of my neck. They have continued to get worse every day. My face is so swollen that it looks like it belongs to someone who weighs 300 lbs and not a thin woman that I am.

I'm still having some sensory symptoms - tingling and roaming patches of warm, but for the most part, my burning has stopped. I have been having bad reactions to the sun and hot temps since the onset of my symptoms. I really should have declined the hot neck wrap, but I wasn't thinking. (My dentist appointment went well, btw. I was really worried because I have symptoms inside my mouth).

It seems that my immune system is too busy creating hives to bother with burning me. What do you think? Has this happened to anyone else?
__________________
  • Gabapentin, Nortriptyline, & Low Dose Naltrexone
  • Methylcobalamin/Methylfolate, & Vitamin D3/K2
  • Phosphatidyl Choline, Phosphatidyl Serine & Probiotics
madisongrrl is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
bluesfan (09-13-2015), DejaVu (09-21-2015), Enna70 (09-13-2015)

advertisement
Old 09-13-2015, 11:19 AM #2
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
Lightbulb

Do you use ACE inhibitors for blood pressure?

These cause a buildup of bradykinin, which is related to histamine, but different in its own way. When lots of bradykinin is released, the swelling comes.

HAE is a condition I was diagnosed with recently when I reacted horribly to lisinopril. My doctor had just had a CME on this (the condition was never diagnosed until the mid '70's. ) So many doctors don't know what it is.

https://www.firazyr.com/hcp/about-he...ema/bradykinin

Search "bradykinin" and you will be amazed. Maybe you have a variant of this, also?

http://www.haea.org/patients/what-is-hae/

Another culprit= mast cell problems.
http://patient.info/doctor/mastocyto...cell-disorders
__________________
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
"Thanks for this!" says:
baba222 (09-16-2015), bluesfan (09-13-2015), zkrp01 (09-14-2015)
Old 09-13-2015, 11:33 AM #3
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'm not taking any ACE inhibitors for blood pressure. I was actually a high level athlete before my symptoms came on - no medications in my life prior to SFN symptoms. Now I have shortness of breath and do tend to get elevated heart rates. I definitely have some mild autonomic stuff going on that hasn't been medically characterized yet. I really need a doctor who can step up and figure some of this stuff out for me.

I went to urgent care on Thursday because it had been a week and my symptoms were getting worse every day. The doctor didn't have much to offer me so it was a waste of $50. I guess I'll go back in if my airway starts to close.

Thank you for the link on mast cells problems. I've been digging into that over the last few days. I also ordered a few supplements, so I'll report back on that.

http://neurotalk.psychcentral.com/sh...47#post1170447
__________________
  • Gabapentin, Nortriptyline, & Low Dose Naltrexone
  • Methylcobalamin/Methylfolate, & Vitamin D3/K2
  • Phosphatidyl Choline, Phosphatidyl Serine & Probiotics
madisongrrl is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
bluesfan (09-13-2015)
Old 09-13-2015, 11:37 AM #4
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
Lightbulb

Airway constriction is a cardinal sign of HAE.

If your swelling does not respond to antihistamines, I'd get evaluated by an immunologist...for the angioedema. The blood work is best done when in a flare.
C3, C4 and C1-inhibitor.
__________________
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
"Thanks for this!" says:
baba222 (09-16-2015), bluesfan (09-13-2015), madisongrrl (09-13-2015)
Old 09-13-2015, 12:01 PM #5
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

Mrs. D, you are like House minus the snark and sarcasm...
__________________
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
"Thanks for this!" says:
Aussie99 (09-20-2015), bluesfan (09-13-2015), Enna70 (09-13-2015), janieg (09-15-2015), Lukesmom (09-13-2015), madisongrrl (09-13-2015), mrsD (09-13-2015), onebeed (09-17-2015), pinkynose (09-13-2015), St George 2013 (09-13-2015)
Old 09-14-2015, 06:31 PM #6
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 still have hives on my neck, down my chest and stomach. My face is starting to finally shrink a little bit. The swelling has been going down since the afternoon.

And guess what? My burning has returned! No surprise there. I'll just have to appreciate that I have exchanged 5 days of burning for 5 days of hives. Hopefully the hives go away because now I have both.
__________________
  • Gabapentin, Nortriptyline, & Low Dose Naltrexone
  • Methylcobalamin/Methylfolate, & Vitamin D3/K2
  • Phosphatidyl Choline, Phosphatidyl Serine & Probiotics
madisongrrl is offline   Reply With QuoteReply With Quote
Old 09-15-2015, 03:51 AM #7
Neuroproblem Neuroproblem is offline
Member
 
Join Date: Feb 2015
Posts: 355
8 yr Member
Neuroproblem Neuroproblem is offline
Member
 
Join Date: Feb 2015
Posts: 355
8 yr Member
Default

Quote:
Originally Posted by madisongrrl View Post
I still have hives on my neck, down my chest and stomach. My face is starting to finally shrink a little bit. The swelling has been going down since the afternoon.

And guess what? My burning has returned! No surprise there. I'll just have to appreciate that I have exchanged 5 days of burning for 5 days of hives. Hopefully the hives go away because now I have both.
Have you taken antihistamines for the hives, swelling sounds like angioderma, its related to allergic. Was the warm wrap just warm water on cloth or there something else on it?
Neuroproblem is offline   Reply With QuoteReply With Quote
Old 09-16-2015, 05:18 PM #8
MAT52 MAT52 is offline
Member
 
Join Date: Feb 2015
Location: Scotland, UK
Posts: 529
8 yr Member
MAT52 MAT52 is offline
Member
 
Join Date: Feb 2015
Location: Scotland, UK
Posts: 529
8 yr Member
Default

Quote:
Originally Posted by Neuroproblem View Post
Have you taken antihistamines for the hives, swelling sounds like angioderma, its related to allergic. Was the warm wrap just warm water on cloth or there something else on it?
I had similar issues with my skin, chest tightness and swelling which turned out to be drug reactions both times - to Sulfasalazine and Hydroxichloraquine respectively. I had about four months of awful facial hives, being told by doctors that it was Rosacea or part of my autoimmune stuff. I recall blaming all sorts of other things because I didn't want the drug to be causing this allergic reaction but the moment I stopped talking it things calmed right down - which was pretty conclusive. I do recall blaming things such as having electrolysis on my chin and my autoimmune issues first.

I've had several severe infections/ sepsis this year and have been hospitalised three times and put on IV antibiotics. Each episode led to a period with no or minimal burning pain in my peripheries. My feeling was that my body was so preoccupied with fighting infection and the acute pain that my brain shut out the rest until the infection was cleared from my body. This isn't particularly scientific but it is what I feel happened with me and may make sense of your present observations.
__________________
If you get lemons, make lemonade

Sjögren’s, Hashimoto’s and Systemic Sclerosis with Raynaud’s, Erythromelagia and small fibre polyneuropathy, GI problems top to tail, degenerative disc disease and possible additional autoimmune diseases
MAT52 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
madisongrrl (09-16-2015)
Old 09-16-2015, 07:52 PM #9
baba222 baba222 is offline
Member
 
Join Date: Sep 2014
Location: Down South
Posts: 408
8 yr Member
baba222 baba222 is offline
Member
 
Join Date: Sep 2014
Location: Down South
Posts: 408
8 yr Member
Default

Quote:
Originally Posted by KnowNothingJon View Post
Mrs. D, you are like House minus the snark and sarcasm...
+1 I really agree here!
baba222 is offline   Reply With QuoteReply With Quote
Old 09-16-2015, 08:34 PM #10
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

Well, I haven't had body burning since 2 days ago. I still have the sensory symptoms. I still have vertigo, chest pain and shortness of breath. But this is certainly a record. 1 bad day of body burning in 7 days time. I'll take it.

My face swelling is much, much better today. Now I'm shedding skin like a snake!!! I will enjoy the rest of my evening because I don't know what tomorrow is going to bring.
__________________
  • Gabapentin, Nortriptyline, & Low Dose Naltrexone
  • Methylcobalamin/Methylfolate, & Vitamin D3/K2
  • Phosphatidyl Choline, Phosphatidyl Serine & Probiotics
madisongrrl is offline   Reply With QuoteReply With Quote
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


Similar Threads
Thread Thread Starter Forum Replies Last Post
Burning sensation all over the body Nene General Health Conditions & Rare Disorders 4 07-09-2013 10:11 PM
Burning sensation all over body philonagam General Health Conditions & Rare Disorders 3 11-13-2011 05:58 PM
Burning sensation in body katenyc Peripheral Neuropathy 0 10-10-2009 02:58 PM
please help-Experiencing burning pains-upper body ladyshellie General Health Conditions & Rare Disorders 6 10-05-2009 12:35 PM
body burning symptoms.... mrsD Peripheral Neuropathy 3 01-06-2009 07:57 AM


All times are GMT -5. The time now is 03:44 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.