Ugg, this is been going on so long for you. I hope someone finds something soon. I went so long trying things and I'm so happy that we finally got a solution for mine. I can't imagine going back to that burning pain. I still wish there was a way your doctor could check your leg arteries without having to do a big expensive procedure because I'm still convinced you have the same thing as me. I hope you get some relief soon.

Hi myeamans,
Sorry about the burning. It's not fun. I have it too, although I don't notice it until I've been walking for about an hour, so I think I'm one of the lucky ones. However, then it's bad. I'm on Lyrica - tried getting off it once (weaned, very very slowly) and was okay for a while then hit a wall of not being able to move. Tried Neurontin. Nada. Went back to Lyrica. Bliss. (Well, relatively speaking.) Regardless of what the docs say about vitamins, I'd sneak in some more Vitamin D3 (I take about 5,000 units a day - for the first time in about five years my joints don't hurt all the time -- go figure). Actually, my levels were low and if I did the conversion for the Quest results (they were off by a factor of 1.3 I believe) they were even lower than what's now considered optimal levels. You can check this in a number of places on the web. As far as the endoscopy for celiac disease, my cousin, whose daughter has it, was tested for it and even though the endoscopy is considered the gold standard, she had it done three times before they finally "discovered" the villi that had been damaged. Try going without wheat, rye, and barley for about a week and see if you feel any better. Can't hurt.

Sorry I don't have more info for you, but I have to say I agree with much of what's said on these boards: you've got to be your own advocate and your own diagnostician. You know best what your body feels like. Don't let any doctor tell you otherwise!

myeamans.
IMHO, the most important thing to do is find docs that are empathetic to your problems.
A neuro who is a specialist in PN and has the most up-to-date info on meds and treatments. A PCP who understands and will work with you, is open to suggestions from you (and your research), & will coordinate with your neuro on meds and tests.
The second thing to do, is read as much as you can and be as informed as possible about what is happening to you.
We all have burning feet (& zaps, zings, stings, buzzing, squeezing, swelling, etc) at one time or another, .... or constantly - without the right meds. A combination of meds ('cocktail') to relieve your symptoms and pains, usually is the ticket to relief.
The PN specialist/neuro....is your first and moist important step in being able to live a normal life, having this incurable affliction.

I have a question....

Is the burning like the skin is burning? Do you have redness with it? swelling?

Or is the burning a deep in the foot burning?

When I get my burning, it is more like the skin burning, and it can move up my legs to mid-shin area.

Thank you all for the replies. It's nice to know there are so many people out there that understand. I saw the vascular surgeon Wednesday and he did a ultrasound on my legs and he wants to do an arteriogram and angioplasty. That's scheduled for the 18th. He said he's concerned maybe I have blocked arteries and the blood supply is getting cut off. My feet turn really purple and red, the other day at the doc 2 of my toes were really dark, he said it looks like a circulation thing. And yes, they swell too and get really shiny.

The first thing you need to do is check your magnesium intake.

If you do not take any, and do not eat nuts, oatmeal or beans, you could be very low.

You can test this with a soak in lukewarm (tepid)water and epsom salts. This can increase the circulation. If this works a bit for you, you then can take oral tablets, and apply a magnesium cream to open up the blood vessels. Sometimes this is from spasms only, and can be reversed. Do you take Calan, or Cardizem or Norvasc for blood pressure? These drugs can make that red foot thing worse.

If you have smoked cigarettes, you could have peripheral artery disease as well.

The turning colors and burning can be erythromelagia. This condition responds to magnesium therapy.
Dr. Jay Cohen MD had this himself, and writes about it on his website:
http://www.medicationsense.com/erythromelalgia.html

Spasms come and go.... blocked arteries don't change. So if you have times with less issues, then more burning, consider Dr. Cohen's advice.
He has written a book on Magnesium, which discusses it.
http://search.barnesandnoble.com/Mag...I=Jay+Cohen+MD

Here is an excerpt:
http://books.google.com/books?id=oD3...trophy&f=false

Its like pins and needles burning, kind of like frost bite and yes my feet change colors. They get purple and then dark red, sometimes my toes are almost black. I saw a vascular surgeon last week and they are doing a arteriogram on Friday to see if I have blockages that are cutting the blood supply off.

Could it be CRPS, perhaps?

Hi there!

I have problems with burning or freezing feet from neuropathy related to my back issues. I've tried numerous meds, including cymbalta and lyrica, which my body built up a tolerance. If you're unhappy with the cymbalta, get advice from your practitioner on how to wean off of it. I did it cold turkey and the effects are aweful. It felt like my head and eyes were swimming. I have a simple suggestion to try and you may even find it amusing, but it helps. Icy Hot....the menthol cools off my feet immediately. The burning usually bothers me most at night, but it sure does help!

My best to you!

Rhonda

Thanks Rhonda. None of those menthol/eucalyptus things help me, and I think that myeamans said the same, but I've seen a lot of people here swear by them, so you're right!

So the nurse finally calls me today, and says that doc1 agrees with doc2 that I should try Topamax (doc2 had mentioned that as well when I saw him).

I said " I'm already on Amitriptyline, Gabapentin, and Carbamazepine...did he say that I have to start stepping down to eliminate one or more of those first? And what about the calcium channel blocker?"

Nurse: "Oh he didn't say anything about either of those...I'll have to ask and call you back."

ZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZ

I guess I'm gonna go play with the stinkbugs now...they are so incredibly slow and stupid that I wonder how they've prospered as a species.