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Old 06-10-2008, 09:43 PM #1
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Post Anyone heard on Erythromelalgia?

Hi!

I posted all of my symptoms the other day--I have had many blood test including autoimmune--which showed only slightly low feritin serum level.
Had MRI's, skin biopsy--could not rule out or pinpoint one thing except granuloma agular(sp?) NOT!!!!it comes and goes and does not even resemble!

Went to specialist at Emory University in Atlanta today--he said--he is not sure what I have.....but he believes that is a rare disease (maybe genetic)
called Erythromelalgia. Said along with all of the other meds I'm taking he wants me to take 2 regular aspirin 3 times per day and call in 1 week and let him know how I feel. He said he will be doing some research on it and all of my symptoms as well.

Has anyone had this? It is so painful.

Thanks,
Tinalou

Last edited by TinaLou; 06-10-2008 at 10:54 PM.
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Old 06-10-2008, 10:30 PM #2
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Default Yes my dear...

It is painful. Both my feet up to about my mid calves and both hands almost to the elbow turn bright red and are painful. But since I have Rheumatoid Arthritis and Sjogren's Syndrome, we are thinking it is probablly Raynauds. Were you checked for that? It happens when I'm too cold and when I'm too hot and yes it hurts.

Billye
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Old 06-10-2008, 10:43 PM #3
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Default Hi

I have all three,but don't think i've hear of that,how some one can help..
Sue
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Old 06-10-2008, 10:49 PM #4
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Default

Quote:
Originally Posted by Silverlady View Post
It is painful. Both my feet up to about my mid calves and both hands almost to the elbow turn bright red and are painful. But since I have Rheumatoid Arthritis and Sjogren's Syndrome, we are thinking it is probablly Raynauds. Were you checked for that? It happens when I'm too cold and when I'm too hot and yes it hurts.

Billye
No I have not been checked for that I don't think _ I've had so many tests--how do they test for that?
I really only have the really hot burning in my face,ears, chest, back of my neck and arms--now with cigarette-like burn feelings in various places from my mid-torso up---mostly on my upper back and neck with some on arms and hands. I do feel burning in my hands when i am driving or when ny hand rests on something--but it is more like the feeling you get from raking without gloves--like your gonna get blisters---not the hot/heat/burning feeling everywhere else.
My feet are just really red swollen and VERY painful--the pain is now going up my legs---there is only a burning sensation if there is any compression like tight shoes or socks that have bunched up or something like that.

From what I've read it is mostly in the hands and feet---but mine is mostly my upper body . I just don't get it.

Please read all of my symptoms from my other post---as they are too much to write again. I need all the advice I can get.


Thank you and God Bless!!

T
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Old 06-10-2008, 10:59 PM #5
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Default

Someone was asking about Erythromelalgia a while back.
http://images.google.com.au/imgres?i...icial%26sa%3DN

Brian
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TinaLou (06-11-2008)
Old 06-10-2008, 11:06 PM #6
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Hmm did he say Funtional Peripheral Artterial Disease,that 's rare sorry
this is a bad night. Hi Brian, Sue Can't go on got the yuckys..
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Old 06-11-2008, 01:24 AM #7
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Hi Sue, i hope your feeling better soon
.................................................. .................................................. ..

Tina, you may like to read these url's.
http://www.merck.com/mmpe/sec07/ch080/ch080c.html
http://dermnetnz.org/vascular/erythromelalgia.html

good luck
Brian
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Old 06-11-2008, 06:13 AM #8
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Default Also--

there's this from the Washington University Neuromuscular website:

http://neuromuscular.wustl.edu/senso...rythromelalgia
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Old 06-11-2008, 06:48 AM #9
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Lightbulb calcium channel blockers

have been shown to cause this in some people
(since they are vasodilators)

Diltiazem (Cardizem)
Verapamil (Calan)
Nifedipine (Procardia)
Amlodipine (Norvasc)

These drugs are used for blood pressure.

Also histamine release from foods, can cause flushing, but it is typically more global than just the feet. (this is similar to Niacin flush)
This histamine flush or Niacin flush can be blocked by aspirin and bicarb.
If you can take aspirin, try an AlkaSeltzer....it works!
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Old 06-11-2008, 08:45 AM #10
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Default

Tina:

You said Granuloma Agular. Did you mean Granuloma Anulare?? I had this. It's a discoloring in certain portions of the body. Not painful though, just not pleasant to have.

I have had this from age 18, for 5 years (all over my bustline). then it went to the back of my neck. All the places that you sweat, I had these lesions (don't know what else to call them).

My most latest was 4 years ago. Not on my body anymore, Just one big one on my hand. The dermatologist froze it off, it left a shadow, and I just used Vitamin E and it's all gone.

I don't believe you have this, right??

Melody
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