Hi Ashton!! While I am so very sorry that you are going through this and experiencing the horrific burning too, it is somewhat comforting to know that there are other people out there who are experiencing the same bizarre thing! I HATE it too and can completely empathize!!
Dr. Diana, I really couldn’t agree more! I have been treating my “mast cells” from about every single angle that you can possibly treat them and yet my symptoms are only improving in a minor way. I really can almost feel as if there is something else just burning my entire body. I wonder how many other EDS patients are experiencing this? Do you think it’s a large percentage? I think most of them are just chalking it all up to MCAS because they’re not sure what else to make of it. Thank goodness you are researching it because I feel that literally no one else is actually even attempting to get to the root of the problem!!
It’s good to know that you have tried alpha lipoic acid. I may or may not try to cover up my symptoms with LDN, for the time being, and if I do I will be sure to post about it! 🙂
Meanwhile, I’m incredibly excited for your latest research about the burning to come out! If you can figure this out you I’d owe you my life (because I feel like it’s going to kill me)!
I just wanted to jump in and say that my burning is constant and relentless. There is a chronic baseline of burning that “flares” up with exposure to certain triggers (heat, food,exercise, allergens, etc). When it happens I flush (mostly on my chest but sometimes all over my body), start retching violently and sometimes it’s followed by shaking all over. I’m pretty sure there is some tachycardia in there as well. So I think I would call mine constant but with waves too! That is the same way my “Interstitial Cystitis” behaves. A chronic baseline of burning with flares when I am exposed to certain triggers.
Oh I should also mention that it used to be that it was more of waves and kind of episodic “attacks” in the beginning and as time went on, and it really got more of a hold on me, the burning became more and more constant until it finally got to the point where it just never stops.
I know I have mentioned this to you before but I just wanted to share that info again in case it may be helpful to your research or to anyone else who may be reading and experiencing the same thing. 🙂