I felt so horrible when I read your post. I know little about your disorder other then it's related to pressure points in your spine. I try and look up other people 's conditions, so I can be informed when talking. I'm Renee and also have a rare pain disorder that effects the whole body. I totally understand about the pain. Unfortunately mine is more like phantom pain. I feel it like a knife ripping me or burning me. Except there isn't anything there. I got a spinal implant that controls the pain in my arms and hands. But stress and weather mess with it bad. It's now in my spine. So my doctor put me on medical marijuana , just to ease the pain. I would recommend it for anyone in pain! It gives you a little lift and ease. It's legal I live in Philadelphia. I've used capsules and vape and I am not ashamed to get some relief and neither should you!!! Talk anytime you want, I'll always listen. Best of luck!!