Small Fiber Neuropathy

Hi @me1229 -- There is already a discussion with the same name. I'm tagging our moderator @lisalucier to see if we should combine your post with the following discussion where other members with small fiber neuropathy can share their experiences with you.

> Groups > Neuropathy > Small Fiber Neuropathy?
-- https://connect.mayoclinic.org/discussion/small-fiber-neuropathy-3/

It's just my opinion but I no longer drink alcohol because I know it damages nerves from the research I've done and can also cause neuropathy if you drink too much. It may not hurt to have a glass or wine at night but I look at from the perspective of it may not hurt but it certainly won't help the nerve damage that causes the pain. Hoping other members will chime in and share their experience with you.

What happens when you reach your limit of Gabapentin & it still doesn't work? Then it would be hard to get off of it because then you have to taper off. This is a scary situation. I'm afraid of the Lyrica because I have heard horror stories about that.

I haven’t been diagnosed with this but I’m loosing my blonde locks too!

My heart goes out to everyone who has shared the debilitating effects that small fiber neuropathy has bestowed upon them. I have yet to meet one other person who is experiencing hair loss because of it . I know it's the neuropathy because my head tingles and itches. I had gorgeous, thick blonde hair. Over the past three years, all of it has fallen out piece by piece. I mean ALL I can't believe what I'm seeing in the mirror, and I just cannot cope with it. I can't leave the house without a wig anymore, and I can't find one that doesn't look like a bird's nest. The anxiety from this effect alone is unbearable. It was my worst fear, and how it's here. I don't know how to adjust to this. Anyone?

My eyebrows have fallen out and several times mine has broken off and fallen out right in the front. This is awful and everyone looks at you like you are crazy. One Dr told me to make an appointment at the Mayo clinic that AL had failed me. I can't. Nobody will take me. Nobody will control my pain. This is why there is a war on drugs. The people on drugs get drugs. The people miserable stay miserable. They act like I am a junkie when I ask for steroids because I have a history of alcoholism. I have been sober over 6 years and I drank for 2

I’ve tried them all. Lyrica, gabapentin 3600 mg a day. Cymbalta combined with both. Gabapentin and Lyrica together. Nothing, I mean NOTHING works well. I was diagnosed with SFN 3 years ago. It’s obvious, at least in my case, nothing works well.
Sorry to be so negative, but it seems the medical field is oblivious to methods of treatment. There are clinical trials ongoing, and I’m volunteering my body to one. But it doesn’t start till January. Best I can say is don’t give up. You’re not alone. It’s not in your mind. It’s all too real, and it’s truly life altering!!!!!
Hope is the only thing that keeps me going..
HANG ON TO HOPE!!!!!
BOTH HANDS!!!!!

I tried Gabapentin - for three months and did not like how I felt. The doctor's office said give it time your body will get used to that feeling. That was baffling to me. I don't want to MASK my SFN, I want to know why and how can I feel better. This group has helped me to open my eyes and to start researching more on my own. Just understanding and reading other comments helps me be more hopeful. Thank you.

I had very little trouble getting off of Gabapentin, with a daily dosage of 1200 mg. I tapered off over a period of about 14 days. Yes I felt a bit off, but it was tolerable. After that process my doctor prescribed Lyrica which did help, but the side effects were awful, So, I went through the same process again. Lyrica was harder to get out of my system, but if you're motivated enough you can do it. Now, I'm back on Gabapentin with a different dosing program i.e. 400 in the morning and 800 just before bed. This new dosing has helped with sleep. Like someone else said, you really do have to be your own advocate. Best o' luck to you and everyone else.

...but but but...we love our evening cocktails!! Geeze, yet another loss from this disease. I've had to give up so much, its hard to add another to the list. But you're probably right. Arghhhhh

I had a failed back surgery that resulted in a spinal column bleed — 3/4 liter. Hospital for several days while my column drained. Put on gabapentin, 300mg to start. Within an hour I was having heavy black curtains of deep depression. Frightening. I stopped immediately and will never try again.nasty med for me.