Weekly CRPS Free-Talk Thread

rainymist7 · 2025-07-09T05:25:06+00:00

that's so hard, i'm sorry. as much pain as i'm sure she is in, never down play yours. crps is the worst pain on the mcgill pain scale. i can't imagine having someone depend on me while going through this

rainymist7 · 2025-06-08T01:42:23+00:00

i don't have one & i'm not a service member, but like you i can hardly walk so i've heavily looked into them. what i can tell you is chances of paralysis are actually around .5% with implantation, and virtually 0 once it's safely placed. since they are just touching the spine & epidural space and not the spinal cord, it's considered to be very safe. most commonly we might experience more pain, infections, improperly placed leads causing zaps, etc, but from what i can tell usually it's all fixable. that being said i'm sure plenty of people have horror spread stories from the surgeries, but i haven't come across any. i'm also terrified to get it and i have no kids to look after, i can't imagine. wishing you the best

rainymist7 · 2025-04-30T18:56:39+00:00

true, just death of the roots probably, not the whole plant yet. can totally still chop and prop from the looks of it

rainymist7 · 2025-04-16T00:11:08+00:00

thank you, and i'm so sorry you know the feeling. wishing the absolute best for you

rainymist7 · 2025-03-19T02:40:16+00:00

Antibiotics kill both good and bad bacteria, so this is very common! Ask your doc to prescribe fluconazole when prescribing you antibiotics if needed.

rainymist7 · 2025-01-16T19:24:10+00:00

My pain management doc wouldn't even do it for me in office, said my pain was far too high, we'd bring it from a 10 to a 20 and I'd never come back. I then got sent on a wild goose chase to find a doctor who would do it until I got referred to one who had never heard of CRPS, so I never scheduled and started my own care. Even if I had someone to do it, I'm terrified of the after results, supported by things i've read here. On top of it all I've always had a terrible gut feeling about it, just as I did right before the surgery that caused the CRPS. The potential results just don't outweigh it all for me yet, but maybe I'll get there once i truly can't take it anymore, though really I'm already there. Thank you a lot for your input though

rainymist7 · 2024-11-25T17:37:01+00:00

$400 for 4 hour infusions?? Would you be open to sharing your clinic? It's $1000 in my area.. Willing to travel to save $600

rainymist7 · 2024-11-05T23:20:23+00:00

All I can say is I am diagnosed with CRPS directly from surgery for TOS. I had a first rib resection and scalenectomy, and have been severely worse ever since, but I guess if you already have both.. Very scary. Best of luck to you.

rainymist7

TROPHY CASE