When first being diagnosed, I wanted to get ahold of as much information as I could
possibly find because there is POWER in EDUCATION!
Very first page to visit is rsds.org:
Second most helpful page of resources:
https://rarediseases.org/rare-diseases/reflex-sympathetic-dystrophy-syndrome/
Third Most helpful page:
I’m always looking to find others like myself as connecting with others that share your illness and understand is more important & healing than I ever would of known.
https://www.practicalpainmanagement.com/pain/living-managing-chronic-pain-patient-story
One thing that I have found helpful to carry is this card. I have been to the ER so many times where they look at me sideways because I look normal at first glance.
https://rsds.org/wp-content/uploads/2020/03/RSDSA-I-HAVE-CRPS-Cards-3-11-2020.pdf
Clinical Trials Link:
https://www.clinicaltrials.gov/study/NCT05523934?cond=complex%20regional%20pain%20syndrome&rank=2