Hi Gracie,

As far as I understand it -- no, rosacea is not erythromelalgia.

You know, I don't mind going red -- face, neck, hands, legs, feet, soles of feet. It's the burning that gets to me.

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Originally posted by GracieTiger:
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blueskies - does this sound like what you experience??
http://en.wikipedia.org/wiki/Erythromelalgia
is your flushing/redness limited to your face, or are your limbs also affected?

Hi Gracie,

If you read down that wiki site it will give you a link to The Erythromelalgia (I hate trying to spell that bloody word, lol) Association. Have a look at the "What is Erythromelalgia" and read that. It's only a page and sounds a lot like what I experience.

There is also a page that shows pictures of the body when they are effected. I forget what the page is called but you could find it easily. Actually I think the page is called 'Diagnosis' and the facial flushing picture looks a lot like I get and what you describe. And yes, the soles of my feet and my legs and hands do get like that.

Hope you don't have it. It's a bummer of a thing to have but it won't kill you. I've finally worked that out. I was very frightened when it first started 6 years ago and fear used to make me worse I think (I think fear emotions can set the burning off as well as the types of foods and medicines they mention) but my specialist kept on telling me it wouldn't kill me and finally that sunk it. I hate the burning but swimming, a warmish shower and going to an airconditioned environment can stop the burning.

I hardly ever wear shoes. In winter I rarely wear socks or stockings as it can set off the burning but we don't have the cold, cold winters in Australia that many of the states of the U.S. have.

I have been known to be walking down the street with barefeet, shoes in hand, in the middle of our winter.

I mainly wear these french sneakers (not sure if Americans call them 'sneakers', they are 'old fashioned tennis shoes') in winter without socks that are made from a very light canvas and are low cut and they don't cover a lot of the top of my foot. And I can easily slip my feet in and out of them. In summer I go barefoot most of the time (and carry sandals or my 'sneakers'). That's okay. I'm a 52 year old hippy. LOL.

Also, if the burning is really bothering you, do NOT use ice or cold showers or baths to ease it. I was in the habit of sitting with the soles of my feet on an icepack and when I told my pots doc I did so he told me not to as this sort of cooling cause cause permanent nerve damage.

If I was you I'd print out the pages of info from this site and take it to your doc -- also get someone to take photos of you when you are flushing and take those to your doc, too. There are some meds that are supposed to help it. Anti-histamines help me a bit. I take Zyrtec and Periactin (Aussie name but you can search for it's generic name) and they both help.

So too can aspirin and the nsaids. Unfortunatley I'm anaphylactic to asprin and can't use it or the nsaids to help with the inflamed look and feel.

http://www.planetdrugsdirect.com/Drugs/Voltaren-Emulgel/101036/

Finally I have something that might help someone else-instead of ALWAYS looking for help! Yes!!!

No, I don't work for these guys. This is just something I stumbled into in Honduras years ago.

I recently moved back to Fl from living on the Bay Islands off the coast of HOnduras for 8 years. There they have this ansaid topical med called VOLTAREN that is WONDERFUL for neuorpathic pain. I also get burning in hands, feet, neck, face at times. I just figured it was adrenal surge and I have RSD in one of the hands from a broken wrist pinned badly in Honduras.

But at times my hands burn so badly they actually turn red!!! It hurts like a sunburn--but 10 times worse. This stuff fixes it--with NO side effects. It's an ansaid that's often prescribed by mouth--but like many it causes GI burn. Not so in the transdermal cream! And it's also non RX!

Takes about 15 minutes for it to work--it's not just a liniment it has real ansaid meds in it that have to go transdermal and work. But it works for several hours. Even smells clean and nice.

I get burning tummy troubles from years of taking ansaids by mouth. But not now.

Not since they gave me this stuff. It's AWESOME! A motrin type drug that you can apply transdermal by rubbing on this gel. No RX needed. And it's now recently been approved for use in the USA as well. It's not cheap but one tube lasts for ever! I use it on stiff neck, swollen glands, even used it on a bee sting once. It works on anything inflamed that hurts with the drug going ONLY were you put it. MY Neuro didn't have much good to say for me--but he said he also used this Voltaren on a neck fusion that caused him constant pain.

Gosh I just hope I've written this right and you will try this stuff and it will help you like it has everyone I've given it to.

XOXOXOXOXOX
Sandy

thank you guys so much. blueskies, thank you for sharing your experiences. i do hate turning red, so very much, but i agree that the burning is even worse. i am not sure i fit the category of Erythromelalgia, as only my cheeks and nose turn bright red.
i do, however, feel incredibly jealous that you can walk barefoot in the winter! i do horribly in cold weather, and would love to find somewhere where i could do without it. plus, i would also prefer to go barefoot all the time

sandysims- thank you for your reference. i am going to see my doc tomorrow, so i will share this info with him!!! i'm glad that you found something that has helped you so much.



more on the facial flushing, for anyone reading. today marks the first day, in over a year, that i spent the morning in colder temps, and didn't flush when it warmed up. no flushing AT ALL. this is incredibly strange to me, because like i said, every single time i have been exposed to cold and then move to the warm, i get an incredible flush. so, i am cherishing this one day vacation from it. odd though that today is also the first day that my lymph nodes seem a bit smaller than usual. of course, i want to jump for joy and hope i am getting all better, but i know better than that. it's just nice to have ONE day of relief, finally.

Gracie

They always thought mine was from the inflammatory arthritis. I think is is all related. So what about your ANA. Mine was negative and then I got a positive IGG, which is supposed to be bad news, and none of the docs seems to do anything about it. Have u had your sed rate checked? It can be unreliable, and as a kid, I used to get it checked all the time. If u are running a low fever and likely have some type of inflammation, get a rheumatologist who is aggressive. I love mine, but it took me years to learn to ask around and go for the best. She doesn't mess around. Put me on the big guns, and I am doing pretty darn well. Need a surgery, but since I got POTS the arthritis means little to me, BUT mine is under control and I see my rheumy every other month and she fits me in for joint injections when needed or puts me on a medrol dosepak or a round of prenisone (which also helps the POTS). She wonderful and takes me very seriously, even though my dx changed re: type of inflammatory arthritis so many times. It's juvenile, and I don't care. When my joints remind me I have arthritis (which used to be pretty bad), I just of can't deal with it on top of the POTS. So my rheumy knows to keep on top of things, and "we work" well. Gotta find one who takes u very seriously.