Anyone else out there have EM?
 

Until I was diagnosed I had never heard of "erthromelalgia" and because it is pretty rare there are few with it. Although I wouldn't wish this on anyone it would mean a lot to me to have someone to talk to that shares my situation and pain.

I also have PN, Raynaud's which my doctor believes are a result of the EM. There are other sites with EM sufferers but I like this site so much just thought I would check with you all.

Thank you.

Dr. Jay Cohen has this disease himself and has helped himself to stabilize with magnesium supplements which he discusses in his book, "The Magnesium Solution." MrsD refers to him often. He also has a website "MedicationSense.com" and is associated with the Erythromelalgia Association (I hope I spelled that right) which is also on the internet. It seems there's a lot of similarities to PN.

I've helped myself tremendously by following MrsD's supplement recommendations and avoiding the night shade vegetables. Joan

I was never officially diagnosed with this but I am sure this is what was happening to my feet and hands long before my idiopathic peripheral neuropathy was diagnosed. Hands would get so hot and unbearable. My neuropathy has my upper front thighs burning like this at times especially at night. Not as painful as hands that are almost as dead as my feet now.

I have been trying to figure out how to make a new thread here but for some reason I am particularly dense tonight. So........i am putting my tip/thought/question/remark here in the hopes that those of you with EM (erythromelalgia) will see it.

I suffer pain and intense burning and swelling in my feet with my EM. All it take is standing too long (15 minutes is too long it seems) or walking 20 minutes. There are many other triggers as most of you who have this already know. (I also have PN and Raynaud's)

My latest prescription from my doctor was for amtriptiline/ketamine cream which I can massage in up to 4 times a day. Jury is still out as whether this helps or not, I'm still experimenting with it but what I just tried the other day was Benedryl gel which I rubbed on my flaming hot burning feet and the relief was almost immediate.

The simplest of things seem to help me. I do take antihistamines which have been a blessing from God and since Benedryl IS an antihistamine I guess the direct approach to the affected area seems to work.

I have tried aspirin and that did not help at all. I have tried clonidine which also did not make any difference. I am also taking neurotin and have tapered down the dosage from 1800mg to 1200mg/daily. I don't seem to notice that this has made my symptoms any worse (thankfully) so my goal is to go off completely and maintain. I hate the side effects but do have to admit I would rather suffer those than give up daily living because of the pain.

I take claritin (am) and hydroxizine hcl 25mg (pm) and now the benedryl. I think this combination has given me the most help. I now go through days without flare-ups instead of just hoping for a few hours of relief.

I have tried so many things that people have so graciously told us about through this wonderful forum and have been grateful for all the input. So I am now inputting back and praying that this might work for someone else.

Thank you all who have helped me through so many very dark, painful and depressed days. I do not know what I would do without you.

I really feel like this is what I have. I have looked at pictures and now that mine is getting worse, this is really more of what I have, since I have nothing else but the burning.

When I read about it, it says not to put feet in cold water, will damage skin, but lately that is the only thing that helps me. I try not to get it too cold.

This is very depressing.

After being up all night reading, I am positive I have this. What made it clear is this week things went from bad to pure hell. I now have my feet in cold water to keep from killing myself.

I believe what set this off was the niacin I took.

If this is what I have, I just went from bad to worse to living nightmare rest of my life. :(

You can test this by requesting cyproheptadine from your doctor.
This antihistamine, blocks some actions of serotonin in the body.

Dr. Cohen uses a stronger antihistamine which has anti-serotonin actions that he buys in Canada. He explains that on his website.

Cyproheptadine requires a prescription in the U.S. and is not 100% effective, but should reduce symptoms to some extent. It would be revealing if you have EM and respond to cyproheptadine.

Well I am going to have to find a doctor, the one I have will not deal with this. I have no idea how to even find a doctor, I guess ask him for a referal but I dunno. Im very lost right now. Zero sleep last night. Now I have my feet in a plastic bag to protect them, but they hurt so bad in the water and out.

Sounds too familiar
 

Thank you, Norah, for your posting. I appreciate your mixed feelings about sharing this diagnosis. After reading this thread and doing some Internet searching, I may now know why my PN seems to have led to swelling, burning, and redness, along with Raynaud's-like symptoms. (One foot will be somewhat purple and the other lobster red; sometimes one foot even has both colors.) I was already dreading the spring and summer weather that everyone else around me is eager for. Now maybe I know why.

Two questions for those of you with experience with EM. How is it diagnosed? And what KIND of specialist would a person look for, to deal with it?

I'm sharing the hopes of others that Stacey is better today. Maybe the reason she hasn't updated us is that she's gone to the ER. And maybe she'll get help there. She was more on my mind last night than my own pain.