Hey Spike, welcome to this forum made up of people that understand what you are going through, and can totally relate. I have to say of all the welcome posts I've ever read.....
Yours was hands down the one I can identify with the most! Although yours originated in your foot and mine my arm, the part where you began talking about Full body RSD, including internal organs, and the burning feeling in your organs, and cold sweats on your chest. DITTO. I was in the hospital this week for 2 days because my insides felt like they were under a broiler. (They kept me because my blood pressure was through the roof, and my oxygen saturation was way too low.) I just got a new, excellent, PM Dr. but can't start the treatment plan until I have a clear EKG, (they would not give me an EKG that I have a prescription for while at the hospital because it was not ordered by their staff. I get it. I get it) ugh, but if they could understand how hard it is to leave my house.......ANYWAY, I've been experiencing "serious brain fog", last week my new PM Dr. asked if I had any concerns. The first one was that I am forgetting who I am and who my husband and children are. I often times forget how to talk. My short term memory is nonexistent. I forget names of things. The past few weeks I will just drop off mid sentence and go TOTALLY blank, or have a random word race a million miles through my brain (sometimes a short "sentence") repeatedly flip over and over. Even if I do have break through times when I feel like I can express that I'm afraid, or I need something it sounds (unexpecyedly) like Charlie Brown's teacher......wawawawa. LOL. My sister who is a nurse says I look comatose during these times, but they last HOURS and HOURS. Hands down this has been more torture than the excruciating pain of Full body RSD, including another newish symptom of pain in my eye sockets, which I am losing my vision over because my entire head was the latest spread. I don't know what I was hoping for, but I was just told last Friday the RSD was in my brain and eyes and that NOTHING could be done to stop the progression of the spreading of it in my brain and optic nerves. It's beyond scary. One thing I have done during ONE episode of the perfect description, "empty brain" thing, when it was happening to me at some point I was able to think.....I need to pee. (TMI), BUT actually being a goof ball by nature I SANG out with gusto, I NEED TO PEE! Trust me....I was just as shocked as everyone when it sounded COMPLETELY clear. My husband and children giggled, and encouraged me to keep SINGING my needs. I gotta admit. It was seriously FUNNY, but hey my needs were met with huge smiles Hahahaha. I'll warn you......SINGING that you have to pee is an experience I hope I haven't scared you away from our great support group with my very untraditional advice. LOL. Take care, and I'll try to remember I've written this post, to look for a response. Haha. Welcome again

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You are beyond amazing Stillsmiling, I loved that you sang out that you needed to pee.

But I cannot understand how you do it, because until I took the LDN my mood was dark, murky grim.

BINGO! Thank you so very very much for posting this. My only question is, are you my long lost sister? Reading this is like reading a script from my own life. LOLOL... Believe it or not, I can't sing AT ALL, but if I sing (though it sounds really bad) my words sometimes come out of my brain easier. Here, Let me try it.. it is 5:00 a.m. And... "I've Got to Peeeee!" GRIN.. So nice to meet you! I hope you have a wonderful weekend.

BioBased, thank you. That is very sweet. I definitely have my moments of feeling TERRIBLE mentally/emotionally. I think it's totally normal. We are dealing with something awful, but despite it all, there are still so many things in life that are AMAZING! BIG HUGE HUGS headed your way!

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Hahaha now that is HILARIOUS!! Great to meet you

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