Hey all! I have CRPS in my right knee and about 8 inches up & another 8 inches down my leg. It is now spreading to my foot and up towards my hip. My knee cap has also started popping out of place if I put weight on it at all now. I used to be able to at least limp on it for about 5 mins or so but now I can’t even stand on it without it popping out. And getting it back in is excruciating. I also have been having spasms ramp up like they’ve never been before. It feels like my bones are in a vice and about to break or that my knee cap is just going to pop up and out of my skin.
While I am in pain management & do have a significant dose of pain medications, I feel like my body has gotten used to them & they aren’t as effective any longer. So not only do I feel my meds aren’t as effective, I also have these new issues going on and I’m terrified to talk about it with my drs.
I am so scared and anxious to even say a word to my doctor about it, though. I’m scared that they’ll think I’m drug seeking or that they’ll change me to something worse than what I have now. I’m worried about seeming ungrateful for the meds I have now. They really want me to do a spinal cord stimulator but I’m super hesitant about it. I really am just at the end of my rope.
I am in bed 24/7 unless I have a doctors appointment or a super special occasion like wedding or funeral. And even then I’ve missed plenty of those over the years because I just can’t get my pain controlled enough.
Since I’ve had CRPS, many other things have been snowballing on top of it medically speaking. I have so many other issues that I never had before. I’m to the point that the next time I’m hospitalized I want to ask them to just keep me comfortable but decline any other treatment and let myself pass. If I had access to physician assisted death, I’d be signing up immediately.
Basically I just need advice on how to bring it up to my doctor that I need more or different meds than I have now. I need something to make my life livable. I want to be able to explain to him that I have 0 quality of life and things are so bad that I’m ready for life to end so that my pain ends. I just don’t know how to have an open and candid conversation in the medical climate that we are in surrounding pain control.
I am open to any tips or recommendations on helpful ways to approach a conversation with my doctor and also any advice on what has worked for you.
Thank you all 🩵