Thanks for this. Well I think my SFN is pretty severe since it affects my entire body. But neurologists have implied that any damage has been done already and my sensitivity to it is heightened by chronic fatigue of Sjögren’s ie I feel the loss of sensation through poor proprioception, tremors and weakness in peripheries .

I think that this makes some sense as have read that controlling involuntary movements takes good muscle control and actually uses up a lot of mental and physical energy. So if fatigue is very severe then we can’t control our body movements or power our limbs properly. I’ve never slept a night through in my life without a strong sleeping pill - which I treat myself to about once a week. And I have systemic disease so this means that cumulatively my body is attacking itself and also failing to regulate itself simultaneously.

What I still dislike is the term functional as used by doctors because all this means I’m anything but!


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Glad you have someone that listened to you and seems to take interest in your case. Sad she won't repeat biopsies to confirm neuropathy...and give you the 'evidence based theory' you've been looking for. It is NOT like the results would waver based upon 'active' state of Sjogren's, as nerve damage would be seen whether active or not. But at least she is considering treatment or some sort, but didn't sound like she gave you any hint of what it would be. And bottom line...she believes your complaints and is taking you seriously, which I think is something you've worried about for some time. I don't like how she attaches the 'fatigue' label to everything...as clearly your symptoms are not just from the fatigue. But let's see how things go...it's definitely a good start with this doctor.

So just go with the flow, see how she wants to treat you and give it a try.