Well saw neuro today who stated I definately have small fibre neuropathy, but there are no more investigations he will do so there is nothing more he can do I just have to try the pregabalin and hope it helps.
I told him about my concerns re joint pain swelling, dry eyes etc but he wasn't interested he said he didn't know more than the rheumatologist so if they say I don't have sjogrens then I don't.
So it's a cause of tough luck get on with it

I feel so alone, no one seems to be hearing me.
I have had to cut my hours at work
Change my car for an auto
I can't do lots of everyday things without difficulty/pain
I have 1 pair of shoes that don't cause me agony to walk
Yet I just get told sorry can't help you arghhhhhh I am soooo frustrated it's untrue.