Hi again,
Thanks for all of the info. I will read over it a few more times and take notes to bring to my next appointment.
I think I had the urodynamics done - is that where they fill up your bladder until you cant take it , and the. They empty it out and measure how much urine you can hold and if there is any residual ? All done through a cystoscope? It was horrible. Even with the smallest amount of liquid it was painful
I tried amytriptaline but didn't notice much of a difference. However, it helped me sleep and I didn't get side effects. However, around the same time, I started with the tingling I. My arms.
I too, have burning everywhere. Its more prominent in certain areas like my thighs, bladder/pelvis,upper back, and feet. My hands were numb every time I wok up from sleep for months. That's when I was diagnosed with mod-severe big lateral carpel tunnel.
My bladder will be completely normal for months and then suddenly I have the burning, urge cry and frequent trips again . Nothing has helped this.
I should mention that I take lyrica also. I have never been able to take a lot because of the side effects.
Everything has come to a standstill as far as testing goes, and it frustrates me to say the least,because I have to suffer while things get worse. It seems that no doctor has heard of the pattern of symptoms I present. When it all began, my gp just kept thinking it was a uti,and anxiety. Everyone has disregarded the burning thighs and tailbone area pressure and burning. I did have an mri of the area and it was fine

So regarding autonomic functions, not long ago I was having rapid thumping heart beats for months. We did an ecg and everything looked fine! Diagnosis stress....there are times when I feel like I can't breath, but that actually may be anxiety. Who knows.
I would be up for doing the gastro testing. Like you, I thought it was heartburn or an ulcer, but antacids didn't help.

Aren't we lucky that our entire bodies are affected .. how do you deal? I hope the meds help you somewhat.

I would like to chat more, so any other info you think of will be so very much appreciated. I am lost, and suffering .