Thanks to Stacy's experiences, I researched EM, photographed my feet, and called my rheumatologist. To my immense good fortune, she has experience with this disease. I saw her on Tuesday; she looked at the photos, my feet, and my hands, and said, "This really looks like erythromelalgia" (she may have said "erythromyalgia," but the terms seem to be used interchangeably often).

Stacy, I feel SO sorry for you. Are you on "Living with EM"? (I know you posted on an EM board but am not sure it was the same one I'm on.) The research they cite, and the experience of many users, confirm that PN and EM often go together (along with Raynaud's, which I also have). I actually think they started at the same time for me.

My rheumatologist ordered a bunch of bloodwork, which I had today. It includes several things you didn't have. She says neurontin and Pamelor (both of which I take) are recommended for EM symptoms. Also aspirin, which -- so far -- is helping me.

I wish you could see my doctor. (Not sure where you live, but I'm sure it's not near Bethlehem, PA.) Hang in there. I agree with the advice to ask your doc why she is NOT considering this disease. There's a BMJ article that you may have found already--8 September 1990--that's concise and hard-hitting about how under-diagosed EM is.

Are you using Salonpas Deep Relieving Gel? It does help cool the burning in my feet. As Mrs. D. says, it's stronger than Biofreeze. I wrote about it on the EM blog, and people were excited to learn about it. (I gave full credit to the "fabulous super-moderator on our PN board.") And Stacy, I wouldn't have known about EM if it weren't for your ordeal. So -- thanks. I probably won't see my rheumie again till August, but I'll pass on anything else I learn that might be relevant.

Hugs,
Lynn

I am so glad you have a good doctor that knew what it was! That is half the battle. Please let me know the forum you post on, either here or in a private pm. I am not at that one, I am on the yahoo one.

I am not anywhere near PA as I am in MO.

I would love to know what tests she orders so I can maybe follow along your path.

I did not see the article you mention, maybe you can post it? There is also the TEA (the em association) site you can join.

I am very happy for you and hope to follow your progress.

Did you ask her about the magnesium protocol? I am interested in that one.

@ Lynn .... our poster Beatle here deserves the credit for the Salonpas gel... he clued me in. I would have found it eventually since I use Salonpas products, but I was unaware of this new gel. I agree it is really good too. I've just used up my first tube. However, my kitties don't appreciate me using it, they avoid me when I apply it. It bothers their sensitive noses!

Hi Stacy
Pat yourself on the back

That is why it is so important for all of us to post information here.
It's great how you've helped ChaucerFan.

I really pray you get the answers you need.
Hopeful

I want to share an amazing file about EM with you, but I am unsure how to share a PDF file here, if I figure out how I will try and do it. It is the best I have ever found to date on EM with clinical studies, treatments, etc.

Copy then paste the address link, into your post.

I've seen you put links in other posts. What is different with the PDF? Long ago Adobe was difficult to get addys from but now they appear each time you open a PDF from the net.

If you give me your search criteria and a description, I may be able to find it to help you out.

Some internet sites do not have links for separate pages... FDA Orange Book is one. But they are not common.

If your PDF is only a text document on your computer, that would be difficult, I agree. But it might exist on the net anyway and I could find it perhaps if it is not a fee for service type thing.

Thanks in advance, Stacy! You'd probably want to share it with everyone, but in case you can't do that, I'll send you a PM with my own e-mail address and you can send it as an attachment.

Lynn

It was not in a link, so it has to be done as an attachement. It is too long or I would put it here. I will email you..you will really like this, I am printing all 16 pages and taking it to my docor and basically making her answer me why she feels I do not have em.

It lists patient study's treatments everything.

Is this it?

http://onlinelibrary.wiley.com/doi/1...97.00185.x/pdf

No it is 16 pages. I just emailed it to her, if you would like I will email it to you. It is by Mark D.P. Davis MD and Thom Rooke MD