My eldest daughter, 22 y/o, left my room last night after a rare “my mom has CRPS” meltdown. Seems she has noticed all of the patches all over my body, more and more of my physical limitations, my coming in from the grocery store recently crying in pain grasping for meds, pill bottles that clutter my night stand as we talked, etc. She sees me getting worse, and she’s scared. I tried to comfort her. Honestly, there’s a part of me that’s scared too. Nonetheless I tried to fake it.

I’m 10 years into this thing and I am getting so much worse. I say that ..let me rephrase that.. upon opening my eyes from surgery CRPS/causalgia was horrific. The first year was really bad. It has changed and morphed over the years. It’s never been great, but it’s been better. Since it has spread so much now, there is a lot more of me that hurts. The newest most visible is my arms/hands not working well at all. It used to be that I would drop things, or would be weak there, and get the occasional sting, but now they just straight up don’t work well at all and hurt like hell. I have to admit, it’s been a bit depressing for me too.

I’m trying to not let it consume me; I tell her.. really I am. I go back to see my neuro doc this week, then need to schedule again w/ the PM doc. We are trying to figure out how to move forward w/ sympathetic blocks when my back gets so aggravated doing them. The PM wanted to do RFA and I declined. Next option please. So we will see.

Anyway, kind of broke my heart to hear her say "I want my mom to be okay" <big deep sigh> me too.

Sorry to be such a downer… just sharing. I know there’s hope, and I told her that.