Non-Length Dependent Small Fiber Neuropathy

Thank you for understanding and sharing your story. I think that it is safe they are checking your FGFR3 results again. This is my 6th neurologists! The other one, did not care at all.

How efficient is the pain pumps?

I have been on LDN for 5 months. Up until 2 weeks ago, it was removing 95% of my symptoms. So I think you should try it. I don t know why it stopped working for me. But I am getting worst every day! And I am really losing hope!

You are lucky to have found a PT who was able to help you. I have seen so many these past 2 years and have gotten zero relief at all. I live in NY, I am not sure who to go to anymore. I have spent so much money and hope on useless people!

Is there a way to talk more privately here or everything is done though that chat?

You can direct message someone on this by clicking/tapping on the person icon at the top right corner of
the screen. I’m on my phone right now and can’t remember if it looks different on a computer.

You should see an option for “messages,” and you can send some a direct message that will only go to the user’s inbox and they’ll receive an email notification. But it won’t be posted publicly.

@emo and @stella55, The Help Center (link on the right side of the top menu across the Connect page) has step by step instructions for how to send a private message as well as other tasks on Connect. Here's the link to the Help Center: https://connect.mayoclinic.org/help-center/.

I am sorry but it is not working ... Do you think you could private message me?

When I click on their name, it doesn't show me that I can send private message ...

Do you see the Send private message link under their profile description?

I just sent you a DM, so hopefully you'll see it in your email, if you were trying to DM me.

HI! Skin crawling - Y-E-S!!! I experience it worse right at sundown (so crazy because it even knows of the time changes at spring & fall equinox!). I do experience it throughout the day as well when I’ve exerted a lot of energy, long periods of repetitive activity (example: driving! My hands being in constant grip of the steering wheel. Talking on the phone - holding it for long periods of time.) I also notice the lasting effect when the smallest fleck lands on the hairs on my arms or skin! It’s like a shockwave effect.

I do not have RA exclusively - but do have Mixed Connective Tissue Disease, which is a combo syndrome which includes symptoms of RA, without the antibody positive part.

I haven’t noticed “stress” to be a major factor, as I’ve always been a high-stress individual. However, I do notice that when I’m rushing, in a hurry or in panic-mode for one reason or another, my nerves seem to go haywire like they’re short circuiting or something.

Hope this helps! Peace & calm sent your way, my friend!

Do you take any supplements with B6?

That’s a great question/point. Excessive amounts of B6 can cause symptoms of neuropathy, yet it’s in a bunch of supplements.

It happened to me because I have POTS, which requires additional electrolytes. My electrolyte supplement had a ridiculous amount of B6, unknown to me. I thought I was having a flare up of my neuropathy and thankfully my dietician figured it out and after a trial of changing out the electrolyte supplement, I went back to my baseline and my B6 numbers went down.