Hi there Neurotalk people. I haven't been here for ages - sorry. I live in Scotland and have histologically confirmed Sjögren's and a diffuse SFN along with many other neuro symptoms - none of which have been confirmed but are all just presumed.

I have been on on the maximum dose of Cellcept, an immunesuppressant, for a few months - started this drug 9 months ago now. Haven't a clue if it's helping or not but my rheumatologist and neurologist seem to think I might be worse off if I didn't take it so I plough on. The SFN affects my arms and legs and face (foul taste, numbness, swallowing issues apparently unrelated to dryness) and it gives me aspect of secondary Raynauds and a bad taste and dysmotility and generally appears to be my worst symptom. I have it quite badly in my gums and lips, nose and my finger tips just now. Plus a horrible rancid taste which my oral consultant believes is also neurological. This and my GI problems and severe fatigue are my worse symptoms.

The finger tips and feet look enough like Raynauds to have been misdiagnosed as this. But my doctor did a nailfold capilliary test and it was normal so he's decided that it is actually the SFN causing minor colour changes in my fingers and toes. I notice that, when the pain slightly eases, I get slight burn like marks on my finger pads and sometimes tiny semolina blisters on the tips. Also the tenderness goes under the distal part of each finger nail and I have small dark pink halos on each nail. I have asked if this could be a fungal thing but am told not. Now I'm assuming that it has something to do with the SFN in my finger tips? Can anyone relate - it's so hard to type or do much with my hands when they are like this.

I would be really grateful if someone could explain -are these diseased tiny nerves causing the small blood vessels in my distal peripheral to also shut off? My vascular doctor did explain, for the benefit of two medical students, the mechanism involved and mentioned a bridge between tiny nerve fibres and tiny blood vessels - but I didn't really grasp it fully. So I'd be grateful if anyone here can explain how Raynauds secondary to SFN works?