Originally Posted by featherme
[size="4"]I was diagnosed with SFN and left on my own. I have done research and found some interesting stuff. It starts in the feet and moves to the legs. If it is not stopped it then goes to the hands and the arms. I had a biopsy of the ankle and thigh as you did. I thought that was all there was to SFN. I hate the pain of the cold which I have more than the pain of the heat. It doesn't matter what the temperature is as to whether I have the cold pain. I wear gloves and sweaters in the house that has a constant temp of 72 degrees.
Today I discovered that small fiber neuropathy goes beyond the hot and cold arms, hands, legs, and feet. Fatigue, poor balance, digestive difficulties, and problems urinating are also part of it. I have been on a gluten free diet for a few years and within the last year have cheated on the diet once or twice a week. I began having a sick stomach and cramps. It didn't matter if I ate or I didn't eat - I was nauseous and crampy. My PCP asked about my diet and I admitted to cheating. He told me to stop. I did and the symptoms decreased in severity. I read an article today connecting gluten problems to SFN. I have been solely on the gluten free diet, a lactose free diet, and now a low residue diet. Things are improving but I still don't feel like eating and eat very little.
I don't know what doctor to see. I was dx by a doctor in NYC - not a convenient place to go. The local doctors seem ignorant of SFN. I am upset over the fact that my case has progressed as far as it has even though I saw a physiatrist for six years. I haven't found much in my research regarding treatment other than if caught early it can be stopped or at least slowed down. Obviously I am beyond that. Fatigue is a real problem when it hits. I overdo on good days as I'm stubborn and like to garden and live. I pay a price but it beats depression and being stuck in the house.
Balance is a problem. In two recent falls I've injured my left knee - looks like a torn miniscus with arthroscopy coming up. I've been on crutches for four years as I have foot drop and three surgeries to my right foot have left me unable to walk without them.
It seems to be rare or at least nothing neurologists bother to look for. I hope you find the right doctor for you so you can slow down the progression and find relief. I think we have to almost know more than the doctors to get them going in the right direction. I look forward to my next appt. with my PCP and the new info I will be bringing. I expect he will then take that info and find me the right doc to see. Google SFN . /SIZE]
It's two years later. I have no cold or hot pain - just numbness that extends up both calves as well as my feet. I have complex regional pain syndrome and recently had a spinal cord stimulator implanted. It helps. it has taken some time to get it adjusted and it still is not optimal. I understand it takes time for the leads to become part of me and that adjustments to the stimulator will continue until they do. It has taken time to recover from the surgery which ended up being an hour or so longer than planned due to the removal of spurs to make room for the implant! A 23 hr. hospital stay turned into five days. It's been ten weeks postop and I am not back to where I would like to be - patience and rest with mild exercise and I mean mild are the orders for me for who knows how long. It's okay because when I do accomplish this I will be in better shape than I;ve been in years.
I have seen a marvelous pain management doc who has helped a bit. There is more for him to do. He is excellent at what he does. The CRPS makes life difficult along with all my allergies but he works some magic and it has helped.
SFN is not too easy to find people who have experienced it. Hope things have improved for you.