Originally Posted by Jaimy
I have both large and small fiber neuropathy, but I'm more concerned about the small fiber (as I have had many autonomic symptoms).
I'm wondering what I should expect as far as progression of the disorder and symptoms (pain, etc.) ? the doctors are very mum about it or say they have no idea.
I started with painful pricking sensations on my skin, then the feeling of bugs crawling on my body, then I started to have burning across my back that only got really bad for a couple of days at a time. It went through these stages pretty quickly, now I occasionally still get the bugs crawling feeling, but it seems to have settled right now on just having numbness in my hands/arms, feet/legs (which is quite wonderful in respect to the alternative!).
I'm wondering from those who have been through this for a while, did you notice any particular stages of progression? (ie. numbness, then burning)
what should I expect next? burning hands and feet?
And I'm also curious about the autonomic progression-
I seem to have these sudden "flare-ups", where I'll have an issue with my stomach really badly for about a month (severe nausea, reflux), then it will settle down and I end up with more mild symptoms- ie. chronic reflux/indigestion, same with my blood pressure and heart- I had one flare-up that made my heart rate and blood pressure go nuts for several weeks, now it's settled down with some minor left-over symptoms, (orthostatic hypotension, a raynauds-type symptom).
would love to hear from someone who has similar symptoms who may be further along than myself.
I think the docs are mum on the progression possibilities, because they just don't know. This is such a varied illness, affecting everyone at different speeds, symptoms, etc. I have had it several years now, and like you have flares (mine are flu like) after which new areas are numb or hurt worse.... I have attacks of pain in various areas, or flare ups of the autonomic affects, or major fatigue, and so on.... all taking turns in making my life a guessing game (what will it be today!)
Sorry that you are struggling with this all too. My particular progression might be and probably is different than yours. But calves, biceps, then down to fingers/toes (half foot numb)... face, back, scalp.... autonomic has been restricted breathing (sensation if not fact), bradycardia, arrhythmia, dizziness. After 1 yr IVIG (cancelled after that by insurance), I was free of the flulike (autoimmune?) flare ups, but am trying to recover from my first one in 6 months right now. Haven't noted any progression post-flare, but am falling daily (
new numbness in legs, perhaps), and heart misbehaving more.
Hope you are able to get pain relief, and to find something that can help cut back on flare ups. It 's hard... good luck!