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Old 09-13-2015, 10:51 AM #1
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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?
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Old 09-13-2015, 11:19 AM #2
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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
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Old 09-13-2015, 11:33 AM #3
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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
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Old 09-13-2015, 11:37 AM #4
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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.
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Old 09-13-2015, 12:01 PM #5
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Mrs. D, you are like House minus the snark and sarcasm...
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Old 09-14-2015, 06:31 PM #6
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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.
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Old 09-16-2015, 07:52 PM #7
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Quote:
Originally Posted by KnowNothingJon View Post
Mrs. D, you are like House minus the snark and sarcasm...
+1 I really agree here!
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