Anymore, if I have a flare, it's usually because of something I've eaten. Have you considered giving up the nightshade veggies (tomatoes, potatoes, peppers, egg plant, paprika, tobacco, pimento)? Some people can't tolerate them with neuropathy--there are a number of posts about this. Sugar also does it for me so if you can give that up, you'll probably have less pain. Eating isn't as pleasurable as it once was, but I can make the adjustments.

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.

The nightshades are huge. They are in everything now.

Another hidden trigger is citrus fruits. When I stopped oranges and lemons, my arthritis seemed to be much less. I still get flares, but daily pain is often much less. I take Vit C in supplement form to make up for it.

Much like MrsD with her Angry Birds, I lose myself in an online fantasy world game. Killing dragons and such makes the hours fly buy, and before I know it the afternoon has been and gone, all the while my focus on the game has taken my mind off the pain, completely!

Late at night seems to be the most painful time for me. Every night I lay here next to hubby as he snores, and I research neuropathy, gluten, etc. in an effort to educate myself. I read these forums, which helps a lot. Knowing I'm in good company on this journey certainly helps.

For me, acceptance of my Doctor's word is defeatist.

I've accepted whatever is going on with my body because I want to take control of it. I will get to the bottom of what is causing this pain, and I will rid myself of it if that's the last thing I do. No Doctor is going to give up, throw pain meds at me and expect me to lay down and take it. THAT is why I've 'accepted' it. I've excepted there is something wrong, but I will never accept that it's won and there is no hope.

Hope that makes sense, I often struggle to get my message across thanks to medications.

If kicking stuff, screaming at stuff, and swearing helps, then I see nothing wrong with that. Pent up anger is poison to your body, let it out, loudly and often. Just take it out on teddy bears and pillows, not other living beings.

I understand your anger toward people who live pain free. Why were we chosen to endure this torture? I sometimes wish people around me could experience my pain for just an hour or so, long enough for them to understand what I'm going through. I mourn for my life the way it was. It's not fair! It sux!

I disappear into a fantasy world in a game. Others meditate. Others scream and beat up pillows. Whatever you need to do in order to detox from that anger is fine, so long as its working for you.

P.S..... this week's free Facebook Angry Birds is Halloween based with ancient Egyptian themes and zombies coming back from piggies ! It is one of the nicest they have offered so far!

Only here for 7 days days though, but free for FB members.
I've had a "good" morning with it.

[QUOTE=AussieDebbie;1104176]Much like MrsD with her Angry Birds, I lose myself in an online fantasy world game. Killing dragons and such makes the hours fly buy, and before I know it the afternoon has been and gone, all the while my focus on the game has taken my mind off the pain, completely!

Late at night seems to be the most painful time for me. Every night I lay here next to hubby as he snores, and I research neuropathy, gluten, etc. in an effort to educate myself. I read these forums, which helps a lot. Knowing I'm in good company on this journey certainly helps.

For me, acceptance of my Doctor's word is defeatist.

I've accepted whatever is going on with my body because I want to take control of it. I will get to the bottom of what is causing this pain, and I will rid myself of it if that's the last thing I do. No Doctor is going to give up, throw pain meds at me and expect me to lay down and take it. THAT is why I've 'accepted' it. I've excepted there is something wrong, but I will never accept that it's won and there is no hope.

Hope that makes sense, I often struggle to get my message across thanks to medications.

If kicking stuff, screaming at stuff, and swearing helps, then I see nothing wrong with that. Pent up anger is poison to your body, let it out, loudly and often. Just take it out on teddy bears and pillows, not other living beings.

I understand your anger toward people who live pain free. Why were we chosen to endure this torture? I sometimes wish people around me could experience my pain for just an hour or so, long enough for them to understand what I'm going through. I mourn for my life the way it was. It's not fair! It sux!

I disappear into a fantasy world in a game. Others meditate. Others scream and beat up pillows. Whatever you need to do in order to detox from that anger is fine, so long as its working for you.
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!

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!

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!

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....

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 😳.

[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...