Sorry about the long post. I wanted to drop in and say thank you to all those people who responded to my post about leaving the group. I had no idea so many of you read my replies hahaha. It was very supportive and I appreciate that support enormously.
I was very very distressed by the nonsense I was going through with a registrar who insisted that I did not have RA and only had FMS which I vehemently denied having. I was n a place where i just needed to withdraw and regroup. Well here is the story and should be a warning and lesson for us all. I stuck to my guns and said I refused to accept that diagnosis, argued on the phone with the registrar, told her repeatedly I did not have FMS as I did not have any of the symptoms apart from pain in my hands and wrists, which I have had since 2012. She continued on repeating the same thing that I had FMS and started discussing lyrica etc which I had already told her I cannot tolerate and wouldn't take and on and on it went, until I said after about 10 minutes, "well we are getting no where and I have better things to do" In my gut I knew she was wrong and I didn't have FMS. I went home and emailed the rheumy nurse and said that I had spoken to the registrar who insisted that I had FMS but I do not accept that and never will as a diagnosis when I have none of the symptoms. She called me the next morning horrified by what I related to her and said she would talk to head of Rheumatology. I then got a call later that afternoon from him. we talked about the situation and waht had occurred with the registrar, he confirmed that I still have RA, but it is not causing any inflammation at the moment and that I probably have myofascial pain from being in pain for so long and nothing working well, but I do not have FMS. I was brutally honest and he listened when I talked about what sort of affect his registrar had had on me and luckily I am a bloody minded person and stuck to my guns or I would have been labelled with something I do not have and then lost in the system. I talked about the stigma attached to people diagnosed with FMS and while it might be a safe and friendly thing to have within the confines of rheumatology, that other medical professionals treat people with FMS and CFS with, shall we say less than the respect they are due. I told him that if I had been diagnosed with that I would have never told any other medical professional that was my diagnosis and I would not have accepted that diagnosis. We had a very frank and honest discussion and hopefully he will be talking to the registrar who has a lot to learn. I am glad I stuck to my guns, I am glad I am bloody minded and stubborn, or things would have been very very different. So please if you don't think it is right, speak up, talk about it, keep seeking the answer until you feel that it is the correct one. Don't be bullied by medical professionals who are overworked and time poor, you know your body, you know what is and isn't right. Most of all seek support from others and stay strong.