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I am more scared now than ever before...

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Just wondering if anyone has small fiber neuropathy? I do and apparantly mine has spread to my autonomic nerves. I am so much worse now than ever. I guess this will keep progressing until the end. Anyone else have this and know if it spreads? It's alsmost like I have severe diabetes but I don't. I am more scared now than ever.

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I'm sorry you're dealing with neuropathy. I think most of us think of this as a problem that's part of our POTS and focus more on the POTS and not neuropathy. I think there is a Neuropathy Association, so you may want to contact them or check to see if they have a forum. Hope you feel better soon.

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Guest tearose

Yes bamagirl, many of us have some kind of neuropathy.

I think when our POTS was a newer dx we were more talkative about it. It has become a daily annoyance for many now....we know it won't kill us and we know it is annoying and we try to just deal with whatever is numb and tingling at that time. I think you will start to notice a pattern if you observe. For example, after I've been driving a car for 30 minutes my facial neuralgia/ neuropathy acts up and my face is numb!

Also, certain things like extreme cold will numb my left arm and fingers....they will tingle and turn blue if I don't change my position or temperature.

I hope this helps to reassure you. If you are in pain or anything feels unusual, please give your friendly pcp a call and run it past them!

healthy wishes, tearose

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Well I have neuropathy but it's Autonomic Neuropathy. It affects the functions of my autonomic nervous system. Basically the same as dysautonomia. I don't have tingling or anything just Gastroparesis and Pots from it.

I hope you get answers to your questions and your in my thoughts.


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