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Dr. Diana, both a doctor (therapeutic optometrist), and a recovered POTS and ME/CFS patient, offers help and hope for POTS, Dysautonomia, Ehlers-Danlos syndrome, Chronic Fatigue, Chronic Lyme, vascular abnormalities, Fibromyalgia, and Multiple Sclerosis. Dr. Diana is now working full time at POTS Care.

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Reply To: confused about dysautonomia

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › EDS/MS/Chiari › confused about dysautonomia › Reply To: confused about dysautonomia

October 18, 2013 at 12:38 am #4528
Soprano1
Participant

Yes, 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! 🙂

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. 🙂

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