Adele, Seenie here from Admin/ModSupport. I’m not an ES patient, but I experienced something very similar after being undiagnosed with Psoriatic Arthritis for 15 years, despite my complaints. I’m still bitter about suffering through that and being seen as an OCD crazy lady. I’m sure that you and I have a form of PTSD from years of being told that nothing was wrong, and the self-doubt that it causes. I still feel betrayed by the doctors who didn’t accept my word that something was wrong.
We’re very lucky to have Jules here: she’s a great moderator, and in your case a fountain of local knowledge! I hope that being here will help you get over what’s happened and get you headed in the right direction, to a consultant who is experienced and current in dealing with ES.
All the best to you