Has anyone been diagnosed with Erythromelalgia?

[MrsAristotle]

Hi guys, I have been suffering with weird burning feet when hot the edges are red, and my hands now are also troublesome, pain, burning, swollen and hot. I am so fed up with all this. Anyway out of desperation as I dont usually google symptoms I put in swollen hands, and came up with a site for Erythromelalgia.

About Erythromelalgia

EM is a rare disorder that can occur at any age and affects both genders.
Most cases of EM are idiopathic (cause unknown). Sometimes EM is secondary to other medical conditions including autoimmune, neurologic or blood disorders. Lupus, polycythemia vera and multiple sclerosis are examples.
EM also can mimic other illnesses such as Complex Regional Pain Syndrome.
Infrequently EM may develop following an injury or surgical procedure.
Some people have the inherited or primary form of EM and usually have other family members with the disease. Recently, an EM gene was identified as were several mutations to this gene. Apparently each affected family carries a different mutation.
Both the blood vessels and the nervous system are usually involved in EM.
The name erythromelalgia describes the clinical features: erythros (redness), melos (extremity), and algia (pain). There are other ways to spell EM including erythermalgia, which emphasizes heat (thermos).
Remissions are possible, but infrequent. With the help of the members of The Erythromelalgia Association (TEA), their doctors, and future research, control of EM symptoms is entirely feasible.

Symptoms
If you have been diagnosed with EM, symptoms may include hands or feet that are very red to purple in color, are perhaps swollen, hot to the touch, and have burning pain.

Location
For some, EM symptoms may appear in the face, ears, knees or other parts of the body. The intensity of the symptoms varies from person to person. Some notice a continual burning pain while others are troubled with "flare-ups" or episodes lasting from minutes to days in length.

Triggers
Warm temperatures seem to be the most frequent trigger for EM episodes. Flare-ups are provoked by heat and exercise, and symptoms are relieved by cooling and elevating the affected extremities. Some TEA members have found that foods, spices like MSG, beverages (particularly alcohol) and some drugs can make EM symptoms worse

.................................................. ..........

I am going to mention this on Friday to my GP as I fit the symptoms quite well, and was also thought to have Lupus at the start although my 3rd bloods were negative.

The other thing I note there is a link with multiple sclerosis too.

As this is so rare, some of you could have been suffering these symptoms without any diagnoses, so I thought it was important to share this.

My hands hurt quite a lot at the moment and are swollen and hot. This all kicked off as soon as the central heating went back on.

[doni54]

Well, like you needed anything new to happen, huh?  I'm so sorry that you are having to deal with this and thank you for posting about this condition.  There might be others here who are suffering from this also.

Luckily I don't have this going on.  I have a similar problem when I get too warm, mine is itching, both my feet and hands will drive me crazy (short drive...haha).  

I am glad that you will be seeing your dr so that you can let him know this is going on.  Let us know what he says.

Take care and I hope this symptom will ease off for you soon.

doni

[MrsAristotle]

yes burning feet and hands are the pits arnt they. The problems with these symptoms is that many things can cause them which makes it very hard to diagnose the cause.

I will let you know how i get on with the GP tomorrow, probably a waste of space as usual. x

[doni54]

I am curious to know what your GP will say about this symptom.  It still may be another MS symptom.  It is so hard to know what symptom fits what, isn't it?

Have a good dr appt and let us know how it goes.  

doni

[Quixotic1]

wow, now that is a disorder I had not heard of.  I also found the TEA site and learned a whole lot.  I, too, saw the association with MS.  Interesting.

http://www.erythromelalgia.org/tea/skins/cms/viewpage.php?pname=What%20is%20Erythromelalgia?

They have a picture on this page of a person who has BOTH Erythromelalgia and Raynaud's (the two not uncommonly occur together) who has both things happening at the same time!!  I recommend that people look at these pictures.  They are very enlightening.

Not long ago we had a poster here who asked about Raynaud's syndrome and, if I remember correctly, she had hot, burning redness of her hands occuring immediately on getting into the shower.  We need to find out who that was and try to get in touch with her about Erythromelalgia.  Was it you?

Quix

[Quixotic1]

I found her.  It was Tot Teacher (Alisa) from Nov, 6th.

q

[MrsAristotle]

well saw the GP, she was concerned at the state of my swelling hands, and believes it could be Erythromelalgia and is writing to my neuro for advise.  My feet burn and go red if I stand on them for very long.

QUIX. My daughter who has been diagnosed with M.E. and has similar symptoms to me gets Raynaurds disease.  I am going to send her this link, as she also suffers red and burning feet too.

I spoke to several people on another forum and there are 3 of them diagnosed with Erythromelalgia and all 3 have MS.

2 are from the states and 1 from UK.  It is rare though as I have posted on several forums and so far have found little about this disease. Very interesting isnt it.

[doni54]

I'm glad that your dr is going to get you the answer you need.  It does sound like you are suffering from Erythromelalgia.  Gosh, how smart of you to find that on your own!!!

And, something Quix hadn't heard of?  That's a first, huh?

I will pray that you will get your answers quickly and that the flare ups don't happen often.

Hugs
doni

[tot_teacher]

Hey -

It's me Tot Teacher (Alisa).  I find it interesting that there is actually a name for that reaction to warm ... it wasn't making sense for Raynaud's to me because it doesn't seem to react to cold.  I have downloaded the TEA site info and added it to my reference notes.

Thanks, that's one hurdle crossed ... only a hundred to go!

- Alisa

[hkotroy]

Hi my name is Helen and I believe I have EM not diag. by Dr. yet. Face and hand, arms, legs, feet and ears get red and burn and feels hot to the touch. Geting worse. Any advice to help with this problem. Currently on neurotin and cymbalta don t see any improvement.

[Weesy68]

I also was diagnosed with Erythromelalgia.  However, unless you've had it your whole life, it is secondary to another condition.  Mine just so happens to be Lyme Disease.  Don't overlook Lyme disease if you have erythromelalgia.  I live in a state considered to have low to moderate risk and had plenty of doctors say we don't have Lyme.  Do not let that sway you from looking for a Lyme Literate Medical Doctor (LLMD) and being treated should you have Lyme disease.  Lyme disease is debilitating and many many people do not notice a tick bite or a rash.  It can start out with the erythro and then you find as months go on that more things are starting to occur.  I recommend watching "Under Our Skin," a movie that was released on DVD just this month.  It is very informative on Lyme disease and the current political controversy in Lyme disease.  Many physicians have been kept in the dark about what is going on with Lyme disease.