Hi Marie,

It's been approx 2 years since my pain started, but only a year since I first went to see my Doctor about it. Started with a heated feeling under the feet which came and went. Being perimenopausal at the time I simply thought it was a hormonal thing, so ignored it for a long time, until it really started to attack, burning, electric shocks, stinging.

This year I've had blood tests, MRI, nerve conduction studies, etc. but both my Doctor and Neurologist are at a loss. All my tests come back normal.

Although my B12 was very low, my Doctor didn't think that was the cause. My Iron was also very low, on the cusp of Anemia, so he put me on iron supplements and told me to take a B12 a few times per week.

So, at this time I have still not been diagnosed, and its looking unlikely, so I've been trying to self diagnose.

At the moment I suspect Pernicious Anemia. It fits. So rather than get into a debate with my Doctor ( who laughs as though its cute whenever I offer a suggestion ) I'm simply going to run with Pernicious Anemia and self treat. It will either work or not, but at this point I have nothing to lose.

Currently taking 150mg Lyrica twice per day, and 100mgs Tramadol slow release. Also have some regular Tramadol to help with extra pain flares. All of this works quite well, but I'm not keen to take these drugs forever. Hopefully B12 will help me lower the pain medications, or even stop them all together.

I'm so sorry that B12 didn't work for you. But I've heard it can take ages! I'm going to try it for at least 6 months. I've read that even if lack of B12 is the underlying cause of neuropathy, if its not caught in time the nerve damage can be permanent. In that case it's still important to continue taking B12 for life to avoid further damage. So for me this will be for life whether it helps or not.

Thank you for asking how I'm doing. It's rare these days, because people around me are afraid I'll bore them with details. We are meant to say "good thanks" , not tell the truth. Lol

It's therapeutic to talk about it. Thank you so much!

I would also very much like to hear how you are doing. It's good that you know it's small fiber. My Neurologist didn't want to put me through the test to find out, she saw no reason.

Anyway as you can clearly see I can talk under water. Thanks again for your concern, lets stay in touch please.

Hi Debbie,
Thanks for responding. Its nice talking to you too! I know how you feel about talking to people about how you feel. Unless they feel the kind of pain we have , they will never understand it! It sounds like your having small fiber pain and symptoms. I dont understand why your Neurologist wont do a skin biopsy. Its simple and painless. It will help rule out or dx sfn. ("Tell you Doctor there is nothing cute about this pain"). lol
What is your iron level? Mine was tested for hair loss and buzzing, ringing in my ears. My blood lab level was 29, Neurologists wants me to take Iron pills, wants it up to 50. ( I believe the ringing and buzzing is from the sfn). But I will try Iron pills for 3 mos to see if it helps. (?).
I was taking Lyrica 150 2 x day , and 50 mgs at night. I was at 350 mgs , but it was not helping at a "high" dose. So I decided to cut back on the Lyrica. I'm down to 275 mgs a day. I think it was helping a little, because my pain is more intense. So now I'm back up to 300 mgs, like you. I will stay at this dose for now. I also take Tramadol, only 50 mgs, I know I should go higher , but I don't want to get "addicted" to it. Plus Tramadol gives me SE's.
I hope the B12 and Iron pills work for you! I hope that's all you need and you get better!
I saw my Neuro-Muscular Neurologist yesterday. She says there's not much she can do for my "condition". She says my Neuropathy is "mild" according to my 2 skin biopsies ( I had two, two years apart). The pain feels anything but mild. I asked her if my neuropathy was progressing. She said just because my symptoms seem more intense and constant , doesn't mean there is progression, So that's good I suppose . I Hope shes right!
I think it would be nice to keep in touch. We can private message each other if you like , I'm not sure how to go about it. lol
Hope your doing OK, and hope to hear back from you soon.

PS: Pain Management wants me to try Lamictal (seizure med for pain), in combo with the Lyrica. I'm wondern if anyone else tried it, and if it helped with their Neuropathic pain? Anyone....