The reason the nifedipine was what they used is because when I had the aertiogram and he injected nitroglycerin in my arteries, they dilated and opened up and the blood started flowing again. He said nifedipine was the best thing for dilating blood vessels. I can feel and see when it starts working. My feet will turn red or my cheeks will, I'll flush when I'm getting a little extra kick from the blood flow. He originally had me on it 3 times a day and the side effects were bad so he tried 2 other CCB's that didn't work as well and then swicthed me back to the nifedipine extended release instead. So, now periodically I can feel the heat in certain areas, it's just a little warmth, no biggie and my feet are so much better! And I can tell you that month last year when my I had heart failure and they took me off of the nifedipine, it was horrible. Everything came back again, the day I was able to start it back, my feet got better.

I don't know if anyone here has what I have, but all I'm saying is take a chance. Even if its a long shot, you never know. I'm 35 years old, the vascular doctor looked at me and said no way do I have any kind of vascular problems but he was stumped and didn't know what else to do. He was shocked when he got in there and saw I did.

I was searching this topic again today and found this interesting article:

http://www.articlesbase.com/diseases...on-440044.html

I wonder if you were tested for mercury levels?
(there are papers on the net about children and mercury who develop this)

Also notice that myeloproliferative disorders may start out with erythromelagia.

I really hope it all works out and like I said before our cases could be completely different but I still believe that you have the same thing I do. It's a long shot and I know you have doctors telling you no way its that but the way you've described what happens to you is the exact same way I felt. I can't explain it, I don't know why it's happening, its crazy but I do know how you're feeling and it sucks. I hated the burning feet, I was so miserable and I hated the way people made me feel when I would say I was going back to the doctor to get another test. I also hated the doctors that would roll their eyes when I said "I saw this on the internet". But you know yourself better than anyone else and you know there's something wrong.

I really, really hope you can get an answer and get some relief. And I wish there was a easy way you could get the arteries in your legs looked at so you would know for sure. But unfortunetly you'd have to have an arteriogram and a vascular doctor that thought it was worth looking at. Maybe one day I'll win the lottery and I can open this big research center and hire the best doctors and offer free testing to anyone that needs it! People could come to the center and just stay there until they got an answer and started treatment. What do you think? Sounds good huh? lol

Thank you again for all of your concern and advice. You are a really, really nice person! You too, mrsD! I will definitely report back on the injection, yea or nay. If it does help, maybe it's information someone else might find useful. I'm just hoping that it will improve my leg function as that's what's deteriorating at an alarming rate.

mrs D
I can't say that the Toprol is working for me then. Still have hot painful feet and I've been on it for about 8 wks. The last ten days has not been very pleasant. Just got the book on magnesium and am anxious to start reading. Also just started Epsom Salts today and am hoping it helps even a little.

Something (new) that I will NOT to do again. Last night because of low back pain I used my heating pad for a short time and it sent a heat "wave" directly to my feet. Quite painful most of the night. Now I can't even use my heating pad!

Today I had yet another MRI which lasted about 1-1/2 hrs. The vibration was more than my nerves could handle and I was in horrible pain by the time I got out. This had not happened before......I seem to be learning everything by trial and error.

mrsD, (question from a different thread) I took your advice and started taking Lysine for my Herpes to try and get myself off the Acyclovir, what dosage would you recommend? Not only am I now wondering if the Acyclovir could be contributing to my PN but now I am also wondering if a hip replacement done 8 years ago could be the culprit. Is it possible I am allergic to the metals? I have lots of new thoughts to take back to the doctor. All my symptoms began AFTER the hip replacement.

This is like looking for a needle in a haystack for sure! I know the doctors all tell me that we may never know the cause of my condition but I will never give up looking.

Thank again for sharing your thoughts with me, I really appreciate having someone that understands what I am going through. I simply can't explain my pain or frustration to someone who hasn't been there because they just do not get it.

Could it be CRPS, perhaps?

There is always an idiosyncratic possibility with any drug.
To do the lysine you would need about 3 grams a day. You can do that in divided doses if you want...the pills are large. You can also break them. Lysine is not typically expensive either.

Heat is a no-no for nerve pain PNers get. People with RSD tend to prefer it. You can also try an ice pack on your lower back instead. Do this for about 20min twice a day and see if you are better. Ice/cold turns off viral activity in the nerves.

Also you can try Lidoderm patches on your lower back. These may work too. They tend to reduce ganglion activity.

We did have a poster here who developed Sjogren's syndrome following joint replacement. We always wondered if that were a trigger for her.

Some people may react to the joint replacement with an inflammatory response...these cytokines may spill over into other areas and cause inflammation too. You could try an antioxidant like grapeseed extract--200-300mg a day for a month or two and see if that helps. Eating an anti-inflammatory diet may help too.

Here is an example:
http://www.drweil.com/drw/u/ART02012...lammatory-diet

Cutting out all sugars can really help too. This lowers insulin requirements, and when insulin is high, it pushes inflammatory cytokine production in the body. By lowering sugar and fast carbs like pasta/bread/rice/potatoes, you lower insulin activity and hence inflammation goes down.

Got my injections (one on each side) yesterday afternoon. Not feeling any better or any worse yet, but they claim that it takes up to 10 days, so I'll check back in. I'm supposed to go for another round in 2 weeks.

mrsD

Magnesium is a miracle drug for me !!!! I am so glad you suggested i try it.....started taking it last friday 4/29 and there was an immediate noticable change in my symptoms. the first thing i noticed was that i had gotten back some of the feeling in my feet and the second thing that is such a blessing is that I AM NO LONGER DEPRESSED!

previous to this treatment my feet were 80% numb and my depression severe. i hadn't found anything that i could take to make coping with the pain bearable. beyond the neuropathy i also have Erythromelalgia and i can report that my feet still turn red but they are not painful.

this is just nothing short of a miracle as far as i'm concerned. the hot burning pain had been unbearable and it was to the point of leaving burn marks on my skin after the flare ups had subsided.

today i was out shopping(some i have not been able to do for a long time), my feet got red but they didn't hurt, i came home and soaked in Epson salt and the redness subsided within minutes.

I cannot tell you how much your advice about Magnesium means to me. I hope everyone out there who suffers with neuropathy and/or erythromelalgia will consider trying Magnesium. it's relatively cheap and easy to take and the worst thing that could happen is that it doesn't work for you. i am so glad i did not dismiss mrsD's suggestion.

personally i think my system was so depleted that the minute it hit my system it started working, i felt different almost immediately. two days is all it took...........as i said, it's a miracle and i will be forever grateful mrsD.

i will see the pain doctor for a followup mid-june, i wonder how he will react to my doctoring myself. he ordered a lot of blood tests and a complete MRI so it will be interesting to see if anything turns up for him. i think he will be shocked at my improvement.

i am taking a powder magnesium which is the citrate form. instructions on container say 800mg/daily, i started with 1/2 dose for four days then today i took the 800mg. i will continue with this dose and not increase unless my doctor thinks that i should.

thank you all for contributing to this forum, i cannot tell you how much i have learned.

That is wonderful. Keep it up. As long as you have normal kidney functions, the magnesium is okay.

The RDA is about 400mg elemental a day. Once you replace what has been lost in your body, you may be able to lower the dose to the RDA level.

Start looking at foods too.. eventually you may be able to eat enough foods to provide your needs.

Please consider making a copy of this post on our sticky--
Neuropathy Does Improve:

http://neurotalk.psychcentral.com/thread43699.html

I am happy to hear that you are better. I've seen this happen to people in real life, and it is always a great feeling!

And do continue to keep us up to date on your progress.