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.

To be honest, I'd bet on the lumbar arthritis playing a role here...or other spine related nerve compression. Especially since it's bilateral. You don't have to have any back pain (and many don't) with nerve related pain of this nature.

Do you still have this pain even if you lift one leg (just enough to take the weight bearing off)? I don't mean lift it off the floor, just take the weight off.

Since it only occurs while standing still, there must be some sort of compression in this position. You should contact your neuro, or orthopedist that specializes in spine.

I assume that the pain goes away when walking?

Thanks so much for your help on this Anita. Yes I was certain that this related to nerve compression too. My neuro saw me for expedited review two weeks ago and was more focussed on finding my neck MRI to look at the cause of pins and needles running the length of both arms than on my lumbar spine. She said she would phonee last week to let me know what further investigations were warranted but hasn’t. So I went to see my GP about the standing problem and she said she would write to my neuro about this but no word. I see the occupational therapist in the hospital in an hour so maybe he can chase this up.

The pain does alleviate a lot with even one leg lifted but best of all when I prop my bum up on my seat stick and take weight off both. And yes walking relieves it although I’m slow because my feet are numb and my proprioception is affected so I can’t turn my head to look for cars without loosing my balance. I will pester some more for answers.

I had a full CT with contrast last year and lumbar arthritis was the only significant thing that showed up. I had 2/3 very large babies born back to front with terrible labours so my old physio used to attribute this but I’m worried about caulda equina if it continues to go unaddressed. Is this a potential risk do you think and is what we are talking about here Sciatica?