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Soprano1Participant
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! ๐
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. ๐
Soprano1ParticipantYes, I do remember you saying that and I feel like I’m being eaten alive too!! It’s a very strange feeling because while the antihistamines do a decent job of suppressing some of the burning feeling, I still always have the “being eaten alive” feeling no matter what I take or do! I always just thought it was from the other chemical mediators from the mast cells that the antihistamines weren’t hitting (because I was so deep into mast cell land- thinking, that I didn’t know what else to think). It’s constant, very weird, annoying and kind-of maddening. I appear to be getting increasingly mentally impaired, in that I keep repeating myself to people because I can’t keep track of or remember a lot of the things I say and do and I’m a total space cadet, since all of this happened, so it doesn’t help matters when I tell people that I feel like I’m burning to death and being eaten alive!! Lol!! It’s very easy for people to just jump to the conclusion that you’re completely out of your mind with all of these crazy symptoms going on.
I know I keep saying MCAS but I don’t really know what else to call it so I just keep saying MCAS, lol. Maybe I’ll just call it BEAD (Being Eaten Alive Disorder). It’s like we have a zombie virus!!
You know things are pretty bad when being a lab rat sounds wonderful!! I would give anything in the world to be a lab rat (I’m my own lab rat but I’m failing miserably at it)! That is amazing that your son and daughter’s livedo reticularis cleared up! And incredibly encouraging. You must be doing something right, that’s for sure! ๐
The other rash stuck around for about a week and then went away. It was only very slightly itchy (but that could have been because my skin is always itchy anyway….it was hard to tell) , which is good because I got nervous that it would turn out to be shingles.
Please keep up the amazing work because when you save us all from the connective tissue – eating zombie disorder there has to be a movie about it!! I have some contacts in the media field. It can totally happen. ๐
Soprano1ParticipantI haven’t been using the benadryl but it’s definitely something I might start trying. Either that or I may just go up on my hydroxyzine dosage. But it seems that no matter how many mast cell stabilizers and antihistamines that I take can’t ever seem to get my symptoms under control. ๐
I only eat a few foods and I try really hard to pay attention and environmentally it just seems to be everything. I got triggered 5 months ago by a virus and heavy medications and I have just been going down hill so rapidly. I don’t know what to do anymore ๐
Soprano1ParticipantThank you so much for the info!! Wow, I most definitely have dysautonomia!! It seems that Chiari symotoms are there as well but are little less pronounced than the dysautonomia symptoms. And I just googled livedo reticularis and that definitely seems to look exactly like what is going on with me arms. I’m not sure if I have ever been tested for an Antiphospholipid problem because my doctors seem to just run a boatload of blood tests on me and they never tell me what they were testing for!! Like Dr. Diana recommends, I have to start asking for the raw data so that at very least I can find out what the heck I have even been tested for.
I do have a positive ANA and a speckled pattern immune system though….
Thank you again for the great resources! ๐
Soprano1ParticipantThank you! Yes, I have been diagnosed with EDS type 3. I have had MRIs in the past but they were lying flat and no one has ever looked for Chiari. I was referred to the Chiari Institute by my geneticist but I’ve been so sick that I haven’t been able to follow through that. Also, I have never been into the idea of surgery, so I’m not even sure if I’m going to go to the Chiari Institute. Yes!! I definitely want to try Diamox!! I just want to be sure that I do it correctly. The dysautonomia and/or Chiari symptoms are kind-of secondary to the symptoms of burning to death and reacting “allergically” to everything but it would certainly be nice to get improvements wherever I can!
What are the differences between Chiari symptoms and dysautonomia symptoms? Since they mimmic each-other are there any differences or are they pretty much the same?
Soprano1Participantweird rash thing
Soprano1ParticipantI forgot to mention retching. I’m constantly retching and shaking violently, almost like convulsing. It’s really scary, annoying and inconvenient. I feel like people think I’m acting or looking for attention when it happens because it’s often a very dramatic spectacle but I just can’t control it :(. Also my forearms arms have this weird bright purply pattern on them that seems to be worsening. Is that a vascular thing? Dysautonomia thing? MCAS-esque-associated thing? Or nothing to be worried about?
Also, anyone know what’s up with that other rash thing? Anything to be worried about do you suppose? The doctor didn’t know what is was and didn’t act very concerned (but after the experiences I’ve had with doctors throughout this whole nightmare of a journey so far, that doesn’t provide me with any comfort).
Thanks!
~Katie
Soprano1ParticipantThank you!! I have just been doing way too much research and ultimately confusing myself, I think lol. I hope my confusion doesn’t confuse other readers as well. I’m already taking double dose zyrtec/zantac, hydroxyzine, gastrocrom, quercetin, luteolin and I use a nebulizer 6Xs a day with gastrocrom half of the time and albuterol the other half. Ketotifen freaked my body out a little bit for some reason, in that it made my symptoms worse. I think I started with way too much (4 a day) too quickly so I may give that another try soon.
I was just wondering about the Diamox because I know that everything is connected and related so I was thinking that helping one problem could possible help alleviate another. Like a domino effect. I’m just suffering so horribly with these darn MCAS symptoms that I’m desperately searching for new ways to alleviate my suffering and try to hit the symptoms from every single angle possible.
October 12, 2013 at 4:29 pm in reply to: Cromolyn Sodium Oral for GI Problems, Food Allergies? #4506Soprano1ParticipantYes, It helps the severe burning in my entire GI tract that I get as an “allergic” reaction to literally any food. However, my burning is sooooooooo severe that it only mitigates it a little bit, but it definitely helps me. My symptoms are so out of control that I am only able to eat organic rice and quinoa and drink water, pear juice and rice milk. Everything I eat or drink literally feels like acid tearing my entire GI tract to shreds and making me flush and burn all over like crazy. It’s horrible but Gastrocrom helps knock those symptoms down for me by about 40% or so. However, it does appear to give me give me some strange joint and muscle pain sometimes. Especially in my hips. Weird.
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