Welcome Hope,

I am glad you found us and are finding some helpful info. So sorry for what you are going through. Bummer on the infusion! Thanks for sharing that.

Everyone is different and people's response to meds changes over time so definitely talk with your doctors if your current regimen is not working. It just takes management unfortunately.

I am on nortriptyline, Vit D and a supplement called PeaPure from the Netherlands that is a fatty acid that is supposed to affect mast cells and inflammation. Don't know if it's related but my inflammatory markers are pretty much zero. I find relief with acupuncture. Certainly this is not an option for all and I am lucky to have a great practitioner. I can really tell when I skip going.
Seeing a pain therapist made a huge difference. Dealing with loss and anxiety related to this illness has given me a more positive outlook. Feeling less panicked and scared has brought my stress level down which can only be a good thing. This therapist did hypnosis and EMDR for pain and trauma from injury. Very helpful! Going to a pool regularly is a godsend for me as well.

I am now looking for a doctor who will try low dose naltrexone and just picked up a new topical with ketoprofen, ketamine and gabapentin. My pharmacist was very excited about this particular combo. For some reason my neuro does not want to try naltrexone, thinking it was a controlled substance. However, pharmacy says it is not, anyone can prescribe and it is inexpensive.

Don't give up on new options, there are a lot of things to try. For general info I recommend a video by Dr. Pradeep Chopra called CRPS Diagnosis and Management" from 2014 on YouTube. Sorry I don't have a link. Plenty of good info in there on treatments and a non-doomsday approach.

I hope you find relief soon and am sending Healing Love,
Littlepaw