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Originally Posted by Sven
HI MAT...
I can say that yes this is a confounding disease...I too see no patterns as to why I get a blast of pain. I try and look to the past and think of what I did that caused the flare and I am at a loss each time. I even look for patterns when I am feeling good and still find no real answers.
I am going on a year of this brutal experience and mine seems to be a more constant as of late...it used to come and go abit...but now its constant pain and what varies is the degree.
I've tried elimination diets...vitamins and supps...excercise...massage...and nothing really helps or hurts...it just is.
Personally I think my PN is mediated through dysfunction of the AI system... but no way to prove it and if you can't prove what is happening then the docs will provide no real remedies or disease modifying treatments.
So we wait until science catches up to us.
I have a skin biopsy tomorrow while you have a lip biopsy...hopefully we and the docs get more insight as to what the heck has gone wrong.
Feel better...cheers.
Sven
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Thanks Sven. I'm sorry you are suffering this terrible affliction too and also don't know the cause. I suppose I am lucky that at least I had a few years of inflammatory arthritis to signal to my doctors that it probably does relate to a rheumatic/ inflammatory process.
My bloods still clearly show inflammation despite the absence of visibly swollen or painful joints so this indicates that my SFN is part of an inflammatory process. Also, after nearly five years of absent autoantibodies (my rheumatoid factor was a weak positive for the first year of RA diagnosis), my ANA has suddenly become a clear positive.
I had a lumbar puncture which showed paired oligloclonal bands early last year - also showing a systemic process is occurring. So I may very slowly be getting somewhere at last but even if today's lip biopsy reveals the same sort of thing (and my punch biopsies last year did not) it's often still a case of two steps forward and another one back - especially where getting more disease modifying treatment is concerned.
I'm now writing this with very swollen, stiff knuckles - fingers jutting out with electric jolts when I type. My daily battle to loosen my knuckles is beginning and actually I celebrate this somewhat because it suggests some form of inflammatory arthritis, which in turn suggests rheumatic disease such as Lupus or Sjogren's. I'd give anything to get back out of limboland and get doctors to acknowledge the SFN as a sign of active disease - as I'm sure you would too. But celebrating swollen, stiff knuckles - how sad is that?!
Best of luck with your punch biopsies today.