Quote:
Originally Posted by JimJamJones
Hello everyone 
So ive recently decided after lots and lots of 'perfectly healthy' tests, and thoughts of lyme and whatever else might be causing this, that i am back to the diagnosis of idiopathic non length dependent small fiber neuropathy.
What started in my fingertips and fingers in 2013 as burning skin pain from light touch has since moved into my left leg as mild cold paresthesia feelings in the toes up to the thigh and prickling underneath my foot when i walk - my right leg however, is not involved at all.
I used to think alcohol was a stressor for me but i now realise that it was just the poor sleep caused after alcohol consumption which causes the flares. Aside from a lack of sleep however (and also exercise) i cant find any other causes of symptom flaring for me e.g food intolerance, vitamin deficit.
So, now i am looking to the future and i want to ask those who have had sfn for longer than me how things panned out for you. Have your symptoms continued to get worse consistently? or did they plateau at some point, or maybe even improve?
The reason being is that ive just turned 31, and although my condition is reasonable now i understand that this is a slowly progressive condition with more pain the longer you have it. With the average western male life span being around 75 what state should i expect to be in 10/20/30/40 years from now, assuming im still around then?? 
Thanks,
Jim |
I have sfn pain in every single part of my body including my face and teeth. And even now with mine having progressed so fast I have days where the pains hardly bothering me. The point in me telling you this is so you know that even if the pain progresses to a state of virtual destruction of small fibre nerves then for some reason the pain of that is not always consistently there. I often have days where I am absolutely fine pain wise. No never 100% but not crippled by pain. Trying to figure out what may flare things up would be helpful. I still don't really know but alcohol and syrup are problems for me and the sfn in my face gets real bad if I inhale toxic fumes from paint, bleaches, toxic cleaning products. Sometimes you won't ever know what flares it as it will change anyway between days. It won't be there burning and hurting like gell every waking moment even if it gets real bad basically.
Two years ago I had a biopsy of my skin and at that point I had significant loss of density so by now I'm sure there must be total degradation in places.(Mines come on fast and is not the same as yours in presentation - so not to worry you) .
Don't let the doctors fob you off is the best advice I can give you. Do your research before you see the consultants.Within reason of course as I understand so many of us have idiopathic. I still am no further in terms of cause myself