[QUOTE=H1N1Guy;1104089]I am messing around with my diet lately and I am going to try that. I can often link certain foods to flairs but there are times when flairs seem to occur for no reason. Definitely worth a shot on the nightshades.

Hi H1N1Guy.
I feel the same way you do. I feel like "acceptance is defeat". I dont know if this is the 'right" way to think.. I have been suffern with I-SFN for 3 years now. I take Lyrica 275 mgs/day which is not helping with all the pain. I still have no known cause for this dreaded neuropathy! Do you have a cause?
I tried the "food/diet" thing, I don't see much of a difference. All my flares occur for no apparent reason. And everyday I never know what to expect. How bad are my symptoms gonna be?, what type of symptoms will I be suffern with today..
Do you take any medication for your pain? Hope your doing ok! Hope to hear back from you..Thanks...

[QUOTE=Marie33;1104229]I am 90 percent certain mine is related to the H1N1 vaccine I received in 2009, but doctors are reluctant to agree. Otherwise there has been no cause determined. Do you find that your neuropathy is progressing? I take Gabapentin 3200mg daily and a host of supplements and vitamins. I listed my daily regimen on my thread "Idopathic" Smaill Fiber Neuropathy if you'd like to have a look.

When you say that you have tried the diet and food thing, to what lengths have you gone? For me i've had to make dramatic alterations, to the point where if I don't make it myself I can't really eat it. Zero restaurant or fast food. I really do believe in it.

Have you tried Gabapentin? Lyrica did nothing for me personally.

I did have a pretty good weekend. I am trying to be more positive and, being practical, try to enjoy all the things that I still can do/have in case this progresses to a point where I can no longer enjoy them. Easy to be optimistic when you don't have pain flares:). Though my diet for the entire weekend consisted of practically nothing but raw fruits and vegetables and juices...

Hi AussieDebbie,
How are you doing? I was just wondering. Do you have a dx of Neuropathy? You sound like your having Neuropathic pain. I read in another one of your posts that your B 12 was "low". Does your Doc think that is the cause of your symptoms. What kind of symptoms are you having? And are you taking any medications (besides supplements) for your pain? I suffer with I-SFN (Idiopathic small fiber neuropathy). The Doctors, after 3 years still can not find a cause. I take 275 mgs Lyrica,which is not helping with all the pain. My B12 was low (375) 3 years ago, when my symptoms started ( tingling in my calves and burning under my feet). I thought the "low" B12 level was the cause of my symptoms, so I took 5000 mcg of Methl-B12 a day for many months. My B12 went up to over 1500, but unfortunately it didn't make a difference in my pain. I love how you explain how you deal with your pain. The only thing that works for me, is I have to go somewhere private (at home) and cry it out. Nothing else I do can "distract" me from this dreaded pain. I Hope your doing ok![/QUOTE]

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! :hug:

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 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! :hug:

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! :hug: 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 :rolleyes:. 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. :hug:

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....

Hi Marie

Like you, I have no idea how to use the private message functions, especially since I'm typing from an iPad and have no " right mouse click". Also, I think that although our conversation may not be all that interesting to an onlooker, if they were to get even one bit of education from our discussion that would be great. So I'm happy to chat openly, if you are. Ohhh and as long as chit chat doesn't upset others here.

I'm actually not entirely sure of my iron level. I just remember my Doctor looking at my results on his laptop and his jaw dropped and said "ooohhh" then turned to me and explained that my iron was very low. He said something about it being borderline anaemic, and mentioned the number 15, if that means anything. I do have a sheet with the results here somewhere, when I find them I can be more specific.

Thank you so much for your well wishes that B12 helps me. It takes a very strong character to genuinely wish others well while suffering themselves. Thank you! I know my Jarrows B12 is in the mail, and I admit to feeling excited, they arrive next week.

Two years apart is a good indicator of progression or lack of, I would think. So It sounds as though your Neurologist is probably right. Perhaps it feels progressive to you because your getting used to the Lyrica and Tramadol at the dose you have been on. As that dose becomes less effective the pain will get slowly worse, making it feel like progression.

I'm also scared of increasing my dose for fear of reaching the maximum dosage and want/need more. I tried to stick with only 50mg Tramadol, but when life is not fun 24/7 it's time to up the dose. I now take slow release 100mg at night to sleep better, and a 50mg regular Tramadol in the morning. I function fairly well on that, for now. Hopefully the B12 can replace the Tramadol. Crossing everything, except toes. Crossing toes would be too painful. lol

Its scarey isnt it, when they say its 'mild'. On the one hand you would be grateful that its mild, but it would also make you wonder, if this is mild then what do they call severe!

I haven't heard of Lamictal. Pretty sure Lyrica is an anti-seizure so I'm not sure why they want you to double up. But if you are anything like me you're willing to try anything if it helps. Please let us know how it works for you, if it indeed helps.

Hope you have more good days. :)
Debbie

To private message... click on the person's name in a post, and a menu will open. Choose "send private message" .

Or look the person up in member's list and open the tabs to the farthest right...and it will bring up the PM box too.

There is no right clicking needed.

You can also do "send message" from User CP in the upper left of each page. But then you need to accurately type in the person's name in the address box. The first two suggestions skip that part.

New members cannot PM for a short period, but all others if they have enabled the function in their UserCP can PM.
I see that both of you have enabled this function so it should work for you.;) When you receive a PM you will see it right when you log in....the notifications area will show a number.

Very much appreciated MrsD. Thank you. :)

So true! People don't ask me anymore either and with some, I know to say "doing great!" After all, that is what they want to hear and anything more than that is met with 😳.

Yes, my husband has said that if I dont stop talking about my medical issues, I will lose friends and family. That is, they will stop calling/coming by since no one understands and it gets others done.

This is particularly disappointing since over the years, I have always inquired about others:grouphug: health and helped them through their illnesses.