Hello. I wonder if I might be able to get answers here for this problem? I’ll post it on the Sjögren’s World Forums too because I have reached the stage of needing answers rather badly.

I am finding it increasingly hard to stand for longer than 10-20 seconds. I have a very neuro presentation of Sjögren’s as some of you may know - and this problem isn’t new but it is worsening - unlike the SFN which seems to have stabilised for now having done a lot of damage to my small nerve fibres everywhere.

So this is how it feels. There is little pain but it’s enough. It’s what I’d call a funny bone pain that kicks in while I’m standing still. It’s in my ankles I think - a muted throb. And the rest I can’t really describe that well - mix of sick making numb tingle and freezing cold sensation. As soon as I relieve my ankles and feet this sensation alleviates so it definitely starts in in and below the knees. The feeling is of standing in freezing cold water or ice. It makes me feel sick and eventually I do just fold or collapse - maybe after a minute.

I had nerve conduction studies a year ago and all was fine so I’m assuming it must relate to the SFN. My neurologist tested my reflexes a few weeks ago and didn’t seem to elicit a response from my Achilles’ tendons and only a slight one from each knee - but maybe enough of one not to be concerned? She said she would phone me regarding future tests to see what’s causing the pins and needles in both arms but she hasn’t yet. I’m in UK where everything moves at a snail’s pace these days.

I do have lumbar arthritis but I don’t suffer much from back ache just now although I have in the past. It’s entirely bilateral and I am presently getting around it only by finding a seat to prop myself on if talking - or unfolding my fisherman’s seat stick to prop myself up. No one really gets it and the assessor for independence related disability benefit (UK) failed me because I can walk. But what I failed to point out is that I’m a liability near moving vehicles because I can’t turn my head to look for cars without losing my balance.

I think if I at least understood what was causing this problem I’d find it easier to put it into words or explain. But I’m proud and can’t begin to explain things to others if I can’t understand them myself. Help with accounting for this problem would be very much appreciated.