Living with Neuropathy - Welcome to the group

Ah yes, I'm sorry, you said you were idiopathic. And you mentioned 2 years...is that how long ago you were diagnosed?

I have had b12 deficiency and unfortunately do not believe it was found early enough for nerve regeneration. I feel Drs sometimes want to keep a window of hope open.

Truth is there is no sure bet with SFN.

Keeping hope alive for slowing progression and comfort each day.

I kinda new I had it before all the testing was done but pushed for the biopsy just recently to get the official diagnosis which was a few months ago. Yeah it's amazing how Doctor's know so little about the disease and no cure for it. I'm staying hopeful though.

Do you take one medication for yours and has your pain stayed the same level this whole time?

Thank you for sharing. Yeah the hardest part I feel like is accepting it.

As far as early stages how can there be nerve regeneration? I understand if you find the root cause then there's a possibility for recovering and correcting the problem.

Is your type of neuropathy idiopathic or did you get any reverse in your symptoms?

Definitely support will be helpful because it's hard to cope with this condition and not having people that can relate to you.

Thanks for much Rachel.

Hi Ashley
I'm also very sorry you have developed peripheral neuropathy, especially at such a young age.
I have almost the exact same symptoms as you do. I've been playing around with various treatments, none of which have worked very well. I'm still experimenting, and will certainly post here if something good comes up.
Have you been seen at a tertiary care center like Mayo or a university? If not, they may have some answers, especially since you're so young.
What has worked for me a little is to wear sheepskin lined shoes like Ugg. It seems to delay the onset of burning, and make it a little less severe.
Also. when I can, I wear flip flops (with sheepskin soles that I insert myself).
Keep trying different things.
Don't be angry at the doctors (I'm one myself). This is a perplexing disease that they freely admit they don't usually have the answers for. Anger does no good, and will likely make you worse. At your age, I bet they'll come up with something eventually.

Hi Ashley
I'm also very sorry you have developed peripheral neuropathy, especially at such a young age.
I have almost the exact same symptoms as you do. I've been playing around with various treatments, none of which have worked very well. I'm still experimenting, and will certainly post here if something good comes up.
Have you been seen at a tertiary care center like Mayo or a university? If not, they may have some answers, especially since you're so young.
What has worked for me a little is to wear sheepskin lined shoes like Ugg. It seems to delay the onset of burning, and make it a little less severe.
Also. when I can, I wear flip flops (with sheepskin soles that I insert myself).
Keep trying different things.
Don't be angry at the doctors (I'm one myself). This is a perplexing disease that they freely admit they don't usually have the answers for. Anger does no good, and will likely make you worse. At your age, I bet they'll come up with something eventually.

Ashley,

As warm as it was outside the other day here in NY, I had no choice for my paining feet but to wear my daughters Ugg boots!

They were the hotness when she so desperately wanted 2 pairs a few years back (age 14).

They are old and beat down but... ya gotta do what ya gotta do. So, I strolled into the hospital wearing Ugg boots for my lidocaine infusion and my nurse said, "Wow, it got that cold out already?!"

I'm 27 years old and I've been dealing with SFN for over a year now. Had the biopsy to confirm and tried various antidepressants. Currently I decided to stop taking medication because I don't want to be on anything. I'm so young and don't understand why this has happened as I'm sure many of you feel. I've always been healthy and don't have diabetes or any known cause. It's so frustrating and every day is a battle to be positive. Some days i'm depressed and others I'm mad. At this point i don't know if I should even see anymore doctors because it's the same drill as in they can't do anything or don't know the cause.

For natural remedies what has worked for relief?
Also have your symptoms of SFN gotten worse?

Acupuncture - don't think it's helped at all.
I've been trying drinking celery juice every day, giving that more time.
Eat lots of fruits and veggies through out the day.

Thank you for your support and tips.

Hi Ashley!! My feet have been so painful lately also. I know what you mean when you find something that works stick with it. Does the lidocaine infusion help you? How often do you have them? Feel better and take care. Lynn

Hi, I'm sorry for yours too. I've taken drugs in the past months but it only helped with my mood my really my pain so I didn't see why I should take it. I just cope with it. Some days are worse than others as far as the burning pain. It's definitely uncomfortable and seems that when I don't wear any socks or shoes it feels alleviated. Not sure if that's common with SFN?

I used to wear socks and wool-lined leather slippers in the house, but over the past 6 months I find myself kicking off both the slippers AND my socks more often than not. I told my Neurologist that our cool ceramic tile floors have started to feel REALLY good against my feet, and he said that is quite common. He told me of one patient who had been known to stand in the snow. Yikes! I hope my feet don't get THAT bad 😮