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

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

Hi
 

I have all three,but don't think i've hear of that,how some one can help..
Sue

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!!:hug:

T

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

Brian :)

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..

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 :)

Also--
 

there's this from the Washington University Neuromuscular website:

http://neuromuscular.wustl.edu/senso...rythromelalgia

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!

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

Tina..
 

It doesn't sound as if it is Raynauds.

Billye

I am trying the aspirin therapy. He said it should work pretty much immediately but haven't seen relief yet after 3 doses of 650mg. I'm doing research but not a lot of different info--mostly the same stuff.

never taken any of those meds though.

Thanks & God Bless,
T

No this is not what I have --it only come up when I have a great deal of stress and then goes away---it itches really bad.

Thanks & God Bless!

T

All
 

That asprin would have me spitting up blood,but give it a try and good luck
to you,this has been interesting..Mel this is a compliment maybe it's because,
you lost the weight ,which is great initself.I'm proud of me as well,we are hot,without a rash. Hugs to all Sue

I'm starting to have quite an upset stomach--but no relief from the symptoms--he said if it helps we "may" have a diagnosis----I recorded the whole visit on personal recorder as to not miss anything because my memory is scarce as well. but my feelings are not. I'm really scared of taking so aspirin but I'm gonna try it--just to see if he may be on to something. I haven't haven't had the rash in about 2 months--PRAISE GOD!! Every little thing helps!!

Thanks so much & God Bless!!

T:hug:

I don't think so either -- the upper half sounds EM but the other symptoms I have are totally different. I feel like I'm in a whirlwind--each day is different!!
Today I can barely see the words on the screen---but the Optho sd I have perfect vision---even though I have a huge blank spot inmy right eye that I can see and feel----made me feel loke an idiot--said I could only do one of the two ---see it or feel it!!! I do both!!!!!!!!!!! Wanted me to come back for neuro tests---I said not coming back to him for anything cause his "bedside" manner stinks!!! Never heard a word. :ranting:

Anyways let me get off this :deadhorsebeat:

Thanks and God Bless Always!!

T

Tina, this sounds....
 

so very uncomfortable!:eek:

All of it!

I hope you have someone to "follow up" with on sorting this all out?

Please continue to take good care!:hug:

AlkaSeltzer...
 

The aspirin in AlkaSeltzer is easier to tolerate.
It is dissolved and does not hurt the stomach like tablets do.

Also the bicarb in it helps with pH issues, and blocks histamine
attachment to the histamine receptors.

If you use regular aspirin...use the enteric coated kind like
Ecotrin...but still I'd suggest AlkaSeltzer (original formula)

Another thing that causes flushing is serotonin release.
If you are on an SSRI for depression/pain, or have an organic
reason for excess serotonin release, you could have that rash.

Hidden tumors in the GI tract called Carcinoids, release serotonin intermittently (sometimes there is wheezing or diarrhea with it but not always), or a hidden lung tumor will also release serotonin. These things should be ruled out as well.

Tina, check this out....
 

I had seen a post in another forum on chlorine (I think you had written it) which has just reminded me of recent problems people are reporting with all kinds of "odd" chronic (and intermittent) rashes and actual "burns," as well.

This may not apply to you, but just incase... do you use municipal water and, if so, is your water supply treated with "chloramine?":confused:

Please see this: www.chloramine.org

I'd urge anyone with a public water supply to take a moment to look at this site. It is an easy read and lots of pictures, too! It has some important information for those actually exposed thorugh their water supply.

Mrsd: Great information above! I always enjoy reading your many insights!:D

Hope you are feeling better, Tina.

I am seeing a specialist at Emory University--just seems my symptoms have stumped him!! He is researching....and seems very empathetic and made feel very comfortable and that was very interested in what I have going on.

WOW! What a site (sight)! I don't think that is my problem-but I do use county water. My rash is subject to only one area of the forearm and only arises during great periods of stress---definately not psoriasis--the report suggested all sorts of causes but the Granuloma Agulare was most prominant---which is not something that just comes and goes like this does.

More people should check out that site--think of what it may do to your insides!!!!

I will try the AlkaSeltzer---but on my trial, I just want to see if there is improvement before I go spending so much--I'm a single mom--I'm out on short-term disability and my funds are really tight right now--so I just bought the small bottle of coated aspirin to try for week "trial" period.

I'm so confused I'm gonna have to look all this up and write it down to ask my Dr. about the different things I've found out on this website and my own research--ya know sometimes you do have to give them ideas--they are just people too---their brains can't think of everything all at once either.

Thank for the many things to research and for being thoughtful and very welcoming to the site.