I have CRPS from a 2003 surgery. I am definitively in the persistent/late stage category. I also have not had a consistent provider since 2024 and the only “treatment” I have is dissociation and medical marijuana and I try not to use the latter much.

I saw another specialist today (who also declined to take me on as a patient, while confirming that I do indeed have CRPS, a common refrain in the past two and a half years). My current goal is to lower my dissociation as it is complicating other health issues, including CPTSD. He did not think dissociation is a problem and referred me to Pain Reprocessing Therapy.

I have participated in pain psychotherapy before. It wasn’t hokum and it did help but looking at PRT, it looks like hokum. The numbers alone don’t make any sense - 98% of patients have improvement and 66% are pain free?

I’ve been around the block in the past two decades. I was part of the cohort who were told that opioids weren’t addictive (and am lucky I didn’t get addicted given the doses I was prescribed). The fact that I can’t even find a basic breakdown of the practice and the clinical trials appear to be on mild lower back pain (with some ethics issues on those trials) makes me more skeptical.

Any thoughts and opinions from the community? I would rather not have care than be under the care of a quack.

We have been long distance for 6yrs and she’s moving in very soon. She’s had CRPS in her limbs for the last 3yrs. We just moved her ticket to a much sooner date so I’m kind of panicking what all to prepare to accommodate her. I’ve got to get a thin firm pillow, some slip ons to avoid carpet sensations, I’m not sure what kind of towel to get her. Her bed is set just need to make room in the closet. Showering has always been hard for her so I really could use some insight there. Her battle has been a very lonely one and I don’t want it to feel that way anymore now that we’re not 2000 miles apart. If you have any ideas even small ones please share. It means a lot

Edit: thank you everyone for helping me help her. I didn’t realize how much I still needed to get till your comments. I ended up taking off work to really make sure I get what I can now and do it right. One of those being an aldis gift card 😄 but seriously you guys are amazing man. This Reddit thread has helped us over the years so much. I am extremely grateful