NeuroTalk Support Groups - Introducing myself

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- - Introducing myself (https://www.neurotalk.org/peripheral-neuropathy/195030-introducing.html)

Introducing myself

Hi from Australia

I'm Debbie and I'm yet to be diagnosed. I suffer from nerve pain in my feet and recently a little in my hands, that's been going on for a few years now and is often particularly bad at night. It took me this long to see a Doctor about it because it started so innocently as a warm feeling in my feet. As I am peri-menopausal I assumed this was some sort of hot flash in my feet, and my mother often laughed with me about it. Anyway, a few months ago the pain progressed to the point of keeping me awake at night, so I went to my Doctor.

So far blood tests have come back with little to help. I am not Diabetic (big whew on that one, as I'm overweight so was pretty much convinced it was that), no thyroid troubles, etc. However, my B12 levels were on the low side and Iron was very low.

Have done a ton of reading which lead me to ordering some Nerve support vitamins online (we don't seem to have Benfotiamine in Australia, can't find it anywhere). Those tablets arrived last week so I'm yet to notice if they are working.

I'm on 300g Lyrica per day and have Tramadol available for the really bad nights. I promised my Doctor not to take them every day, only when I really really need to. Now, I wish I hadn't made that promise, for they really help! The Lyrica seems to have been helpful, but sometimes, like last night, I could swear they are doing nothing! Then I take a Tramadol and it's like magic. Wish I could live on Tramadol! :)

Seeing a Neurologist in a few weeks to run nerve tests. Will let you all know how that works out. I'm scared, hoping the early tests reveal something before I am subjected to more painful testing.

Anyway, I'm just introducing myself today and trying not to create an epic here! I'm a part time chess coach, teach chess in primary schools. I live with my partner who is being wonderful about this (I only recently told him I was living with pain, hid it from him for 2yrs), and our adorable, mischievous, Akita puppy. I love my life in every other respect but the pain. Without the pain I'm living quite privileged. With the pain, my life is almost not worth living.

I see these forums as an opportunity to talk about my pain, but also to assist others if I can. Knowing I'm not alone is huge for me! I don't know of anyone in Australia with this, so I seek friends here who are going through this challenging journey too. Hopefully we can support each other.

Thank you for reading, if you have managed to get this far!! :)

Cheers for now

Debbie

Hi!

Just a note, what were your test results for diabetes??? My doctor said I did not have it but I decided to get my own meter since my fasting result was like a 95, close to that magical cut off number of 99. While I agree I am NOT diabetic, I am prediabetic and my numbers 1 hour after a meal were well over 150. Anything over 150 and nerve damage can occur.

Docors wont say anything until you hit some magical number that says you are already diabetic.

I was WELL on my way to becoming diabetic, period.

Anyway, I would suggest you make sure your numbers 1 hr after eating are not going above 150.

Maybe you can find befotiamine on the internet??? It is the most important supplement that I take for burning.

good luck

iherb.com ships to Australia.

Their selection is reasonably priced, and I use Doctor's Best brand.

Hi AussieDebbie....my name is Debi too :)

Hey there...I've only been on here for a week or 2 but have had so much help from these wonderful people.

I had the nerve conduction thing done and it was negative for large fiber neuropathy. All my blood work was fine but I am type 2 diabetic. I'm not insulin dependent...just pills. I've been my own health advocate and like you have read and read stuff. To make a long story short, after chemo I started having the numbness, tingling, electrical currents and so on with my feet and just a little in my hands. Went to a neuro dr that I was not too pleased with. Then to a foot dr who was nice but didn't really help. He gave me info on Bako skin biopsy and I called a week later asking if he would do the test on me.....thank goodness I did....finally a diagnosis....advanced small fiber neuropathy.

He said my feet are devoid of fibers and my only option at this time is to see a pain mgmt. dr. That is where I'm at now. I was also only taking my pain meds as needed even though my PCP said for me to take them regularly. (and so did the nice people here)

This past weekend I started having minor swelling on the outside of my left foot. Talked to Mrs D about it on here and she suggested I have it seen about. Felt sure it didn't have anything to do with the neuropathy but was wrong. Went to our ER Alternative last night and he xray'd my foot.....not broke. Just the progression of the neuropathy and he told me to keep it elevated and stay off of it. I was pretty upset since this was a new symptom of the neuopathy. But I am now taking my pain meds every 4 hours and at least I'm not a crying my eyes out from the pain.

Well as you can see I'm chatty. But talking here has been very good for me and I so appreciate everyone.

Debi

Broken-foot type pain DID go away

Quote:

Originally Posted by St George 2013 (Post 1019565)

Hi, GeorgiaDebi. I may have posted about this to you already--sorry for the duplication if I did! But one of the early signs of my idiopathic PN was pain in my left metatarsals so severe that the orthopedist thought I had stress fractures. Did a full body bone scan--no fractures. Meanwhile he had me put into a "cam boot" which I used for almost two months to keep weight off that foot, and it did relieve the pain. And the pain was still gone when the boot came off (in June) and hasn't returned. The PN is still with me, but it seems to have moved past that particular phase, to my GREAT relief. So I hope that happens for you too.

Lynn in Pennsylvania

I don't have much faith in diabetes tests either. I've been tested multiple times, including glucose tolerance, and while I test negative for diabetes, prediabetes, etc., my body & PN behave as if I were diabetic (symptoms flare), so I eat like one, and it helps. The worst that can happen is losing some weight; the best that can happen is improvement of symptoms.

Doc