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

When someone makes statements about meds that don't work, they should really be careful with those remarks. For some, Lyrica is a godsend. Each person reacts differently to medication. Get a good doctor and experiment with medications. A cocktail of a couple meds works well for me. Lyrica is one of those meds.
So.....please be careful with the advice....Thank you

Hi Mrs. D
I am new to this website and am so excited to have found it and you. This particular comment (and info on Magnesium) really grabbed my attention. I have just been diagnosed with Erythromelalgia. Pls forgive me if I am not commenting in the right place, I am still confused with how to use the website.

It wasn't bad enough that I have fairly fast progressing PN so guess I now have two conditions. The PN isn't nearly as painful as the ERY in that it presents with numbness, tingling, stabbing, etc. but it is the ERY that causes the extremely hot burning feet (deep inside and the skin is involved too), the heat (feels like fire) actually leaves red marks on my skin after the episode has subsided. My doctor diagnosed me with ERY once I told him that heat (temp to weather, warm shoes, furry boots, hot sand, etc) and alcohol (the drinking kind) exascerbated painful episodes which can last from hours to days. This info might be important for others who are struggling with the same symtoms. I obviously try to avoid heat situations (i live in washington state so the weather is cooler here but still no guarantee) and I no longer drink. All this said it still does not gurantee new episodes, they still happen for whatever reason. I am currently working with a doctor in pain medicine at the University of Washington.

He (pain doctor) has provided more information in one visit than I got from all my other visits with my TOP neurologist. I have concluded that neurologists just diagnose and prescrib medicine to help with pain and tell you there is no cure and here are pain med's. They really don't try to work toward finding out why you have this or looking for new ways to manage the pain. I continue to search online for any and all information and again I want to thank you for all the information I have garnered from your webiste. It is invaluable.

I think I said this before......I am new to the site and hope I have responded in the correct way but if I haven't please forgive me.

In case you are wondering I am currently taking Gabapentin for nerve pain (it works better than nothing but lots of side effects. I also take Protriptiline. I was taking Nortriptiline at night but left me quite groggy and loopy the next day so have just started with the Protriptiline. Can't report how well it does or doesn't work yet. I think it's a very old med (my pharmacy had to order).

Thanks again and as others had mentioned until you find this site you think you are the only person in the world with this awful, dibilitating and depressing form of pain. There is simply no way to explain this to family and friends so that they understand, I hardly understand it myself. I have been incredibly depressed bordering on "not wanting to live anymore" as opposed to thinking of suicide (I do believe there is a difference) so thank you for all of you who share your pain, treatments, thoughts and ideas.

Hi. I think I speak for everyone here when I say you're fine commenting here. A lot of us may have different diseases but the burning feet is what brought everyone together and you never know if you might have something that you might think is insignificant but it ends up helping someone else.

The internet (and this forum) have helped me tremendously. As you can see I started this thread in March of last year before I had a diagnosis. Mine ended up being Peripheral Artery Disease but over time things have happened that made me think there could be more to it than just PAD and I got that from reading what people wrote here. You might find little tips that you'd never think of doing that will help. You never know.

I agree with you on several points: 1. Your pain doctor helping you more than the neuro . I've always said, you have to find a doctor that is interested in your case, one that cares enough about it to really find out what is going on. Thankfully I found that doctor as well. And 2. Your comment about family & friends. It always sucked for me because I felt like people looked at me and said "you don't look sick, quit complaining!" And when all tests kept coming back ok, I felt like people would think I was just a hypochondriac. But I finally found a doctor and he said he thought I had some kind of circulation issue and even though it was a long shot he wanted to do a arteriogram just to see if there was any problems and sure enough, he was right. Over time we've found more narrowing blood vessels and "blockages" in my heart, lungs and carotid arteries so now they are looking into more of a small vessel disease.

I take lots of things unfortunately but the one thing that helped my burning feet is nifedipine! It's the best! It is amazing not having the burning feet anymore and I hope I never have to go without it. My cardiologist took me off of it for 1 month last November when I had some heart problems and that was the worst 4 weeks!

Anyway, I am rambling but please write us anytime, especially those times when you are feeling real down and depressed. There are people like you out there that are suffering too. Even if we all don't share the exact same diagnosis, we still understand your pain.

Welcome to NeuroTalk.

Dr. Jay Cohen, MD has written a book on Magnesium.

He used magnesium to fix his erythromelagia!

For some people using it works. It prevents the spasms in the small blood vessels which seem to be the cause.

http://www.medicationsense.com/erythromelalgia.html

Really appreciate your response. I currently take Toprol for blood pressure and "palpatations", do you know if Toprol and nifedipine are similar drugs? I tried to search online for the answer but admittedly I am not up to speed on all the terms and just couldn't figure it out. My hope is that Toprol does something different and I still have a chance that Nifedipine might provide some relief for me. In spite of the pain cocktail that I am on I have to say this week was not very much fun pain wise so guess I have now figured out that even though I take a huge amount of pain med's each day there are still break through periods of pain. Trying very hard to feel better by Easter, I have four grandchildren counting on me to hide their eggs all over heaven's half acre!

Toprol is a beta blocker. It has side effects on the extremities... like cold hands and feet. When blood vessels contract they get cold, they when they open up they feel hot, as the tissues are once again allowed blood flow. So beta blockers are sometimes used for erythromelagia.

Not all calcium channel blockers work for this...and some induce it in fact. Verapamil has been shown to cause it.
http://docs.google.com/viewer?a=v&q=...hsO48sXencPrTg

So it is puzzling why nifedipine is working, for myeamans.
(nifedipine is also a calcium channel blocker).

I would try using magnesium in the form of epsom salts soaks.
If this helps a bit, consider taking oral magnesium daily like Dr. Cohen recommends.

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.

Hi myeamans
Saw your post. I have some of the same symptoms you describe. After much diddling around, my neurologist came up with a cream that is formulated locally. The stuff works. At least, for me. The makekup of this cream is as follows: amit-2,gaba-2,keto-5,lido-5, and lipo,120mg. I don't know if you can have this stuff made up where you are, but it's worth a try. Hope you can find it, and that it does you some good.
Semper Fi