I'm so sorry this is happening to you, and glad you got an appointment somewhere where you feel you may be able to get help. I was also diagnosed with central pain disorder (aka central sensitization, central pain syndrome, chronic pain syndrome, etc.) first years ago. However, my PCP now thinks I may have CRPS, only it's not as severe as it could be because I've had proper treatment for central sensitization for years at this point. There's a lot of overlap.

It did end up that I had "more going on" though--I was ultimately diagnosed with seronegative spondyloarthropathy (an inflammatory arthritis that doesn't show inflammatory markers in blood tests), POTS, and HSD/hEDS (different doctors don't agree on if I have hypermobility spectrum disorder or hypermobile Ehlers Danlos, but it's treated the same).

First thing is, were you confident in the workup you had before you were diagnosed with central pain? The symptoms you're naming can happen with central pain, but could also be symptoms of other conditions. One could have central pain and/or CRPS while also having other co-occurring conditions. Some are treated similarly, but with the conditions I was diagnosed with, they required different treatment. Part of the reason my pain wasn't improving was because an inflammatory arthritis pretty much has to be treated with medication. Do you think you may be hypermobile? (If you're not sure, you can look up the Beighton test and see where you are.) Symptomatic hypermobility can cause widespread chronic pain like what we see in CRPS, central pain, and fibromyalgia, or they all can occur in the same person.

Second thing that pops into my head is, what kind of treatment have you tried for central pain/central sensitization? There are medications, but I've gotten the most leverage out of working with PTs who are specifically trained in chronic pain and central sensitization--they helped teach me how to decrease the pain signals (because in central pain, the central nervous system/brain begins to perceive more and more stimuli as threats, and so sends out disproportionate pain signals as a warning to prevent us from a "threat"). This is something that I find very few doctors focus on are are aware of, and if they are, they don't always explain it well, and it ends up sounding like they think the pain is in our heads and they want us to meditate it away (which is not what I'm saying).

The other thing I learned with proper PT is proper pacing. Because our central nervous systems are hyper-sensitive, we can't take on exercise the same way as someone without central pain. The pace has to be much gentler--it's like trying to teach a child who was previously bitten by a dog to not be afraid of dogs; you can't jump right in. I was hurt numerous times by PTs who were too aggressive (including at Mayo Clinic). We've also been using Graded Motor Imagery (GMI), which is a treatment that's been used for both central sensitization and CRPS.

These are all things that could help, and in the short term you can take elements of a pain neuroscience approach (interventions you can do on your own to quiet the pain signals), but it sounds like you're also wondering if there may be something else going on. I kind of feel like you might want to make sure central pain is the only thing going on. It's unfortunately very easy for providers to lump everything into the bucket of "central pain" because so many things are symptoms of it. I was diagnosed with central pain at Mayo Rochester, and they missed all the above diagnoses because of the red herring that central pain presented.

I'm wishing you all the best and hoping things go well for you at your appointment.