Hey all, I don't pay on here often but I read all the stories. As some of you know it took 15 years for someone to figure out I have SFN... And I'm happy they figured it out!! I'm being treated with meds, I can walk again unaided. It hasn't stopped the small attacks on my body. The burning, the sharp pain, the creepy crawling on the legs, the exhaustion, the battle our bodies fight 24/7.

Now when I visit this doc, who I used to think was the bomb, I don't want to. There is no, "Let's get down to why!". It's all how are your meds, let's change this and that. He once told me it's not going to get better but you will find a happy medium... That's great, but can you tell me how I got this in the first place? Are my children at risk?

He tells me I should level out. Things will slow down and I won't get any worse. Yeah, that's not happening. Do others level out and get better, or is it time for a medication upgrade because your body got used too it?

We are all so different! We live with this pain all the time! Some days it's easier then others. I think about the future and watching my kids grow up, 2 already have. I'm the only one in the family who had managed to get everything. No one else has health issues, minor stuff. Is there a link to my grandfather's rare form of ALS to me? Hey I have autonaumic neuropathy too.

I'm sorry for venting, but I don't have anyone else who understands our struggles, our pain, our constant fight just to be apart of this life.

Many blessings to you all!!

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I ended up with nerve damage from a hip replacement and it's affected my whole leg...lots of arthritis and feet more and more. I feel there is nerve pins and needles in my feet especially when I go to bed and elevate my legs some. If I don't elevate heels, the rub against sheets. I've given up on going to constant doctors. Many are guessing and only encourage us with "things will improve". They don't know FOR SURE about anything. We are all unique bodies. I do MOST alternatives and a friend with ideopathic neuropathy for many years was able to throw away gabapentin as grape seed extract was helping her. She was taking statins for years and her doctor always said "I don't know WHY you have the nerve pain"...her daughter did research on the net and found it was the statins. I've lost so much faith in the medical world. My thoughts at my late date. Good Wishes.

I hear you hbielski, I still don't have an official diagnosis, but its pretty apparent from my symptoms that I also have SFN. Started almost 3 years ago and got worse over a 6 month period. Then it leveled out, maybe got a little better (or I just got used to it).

Recently, I tried tapering off of my Gabapentin. I was able to cut back slowly without much increase in symptoms. For a while I thought I would be able to get off it completely, but I hit a point where the symptoms started to kick back in and I had to increase the dose again to get things to level out. Seems like I found a happy medium that is about 1/3 the dose I was originally at while still keeping symptoms at a tolerable level.

I realize I'm pretty lucky because my problems are a lot less than many people on this forum. Still, It's only been 3 years, and who knows if/when things will suddenly take off again.........

No, this disease is certainly not fun. But if I have been able to take away one good thing, it's that I no longer take anything in life for granted. I really try to live for the day, and enjoy every good day as much as I can