Just wondering what others’ experience is as I am a newbie to this disease.
Hello Leo,
Welcome to the group I am still very new to this it has only started happening to me within the past few months…hands and feet and genitals strange thing is I had a mild flare of it in my younger years and totally dissapeared. However now its come back and seems to be worse then it was much worse…but I have no clue what to do from here I am seeing a rhemy in two months but it seems so hard to live normally with all this happening… How are you feeling about it so far? Are you actually diagnosed? There are certain medications which could help so I have heard so stay positive, and we need to find out if its primary or secondary.
I had my first weird flare of it when I was 22 I am now 30 and its back to cause havoc…I have a feeling it maybe secondary to something but I still need to get diagnosed I will keep tpu updated 
Please stay in contact and let me know how your doing.
Hi! No, i am not diagnosed, but will visit a doc soon. My symptoms are very red toes when hot, bulging veins, redness toes when waking up etc, but no pain at all, so i am not sure if its EM i have. Maybe its venous insufficeny?
But in ur case, so you had mild EM-symptoms from 22-30 years? Also 8 years of no pain if i understand u correctly?
Hey again Leo,
Well when i was 22 I had red genitals scrotum and penis for about a year and my palms were also red and sensative. To this day I have no idea what it was but it was sooo distressing…but now ita back to wreck havoc on my life again…however, my hands and feet are now affected along with my genitals, I am undiagnosed. But I am seeing docs to try and figure it out my feet are also red in the mornings and more so in the evenings hands are pretty constant unless its really cold. Genitals just remain red and burn… So its all very confusing and hard to deal with at the moment for me. I also have tounge ulcers that reoccur so we are lookong into a possible autoimmune problem. As this seema to happen after extream emotional stress for me which indicates a flare in the problem… But its really getting me down I am only 30 and have already dealt with this from when I was 22… Its so hard to not let it take over.
Oh and the so called pain isnt really pain in the hands its throbbing tenderness and heat. And feela tender when you clench your fist for instance.
Hope your ok though buddy
I’ve noticed mine is worse with environment, not the passage of time. Hotter environments cause it to be worse. Really it seems like every person has varying symptoms and causes. THe redness and burning seems to be the ones we all share, but I’ve seen people that have extreme pain, which I didn’t have til I moved to Texas (and had for over a decade before that), ankle/leg swelling, reddening of parts other than extremities (like face, chest and torso). Unfortunately, it seems like EM is kind of a “catch all” sort of disorder.
Erythromelalgia does not have the awareness needed for “catch all” status. Doctors aren’t diagnosing patients with erythromelalgia as a wastebasket diagnosis. Most doctors have never heard of erythromelalgia. As many users arrive here self-diagnosed, it’s possible there are significant numbers in the community who do not, in reality, have erythromelalgia. That should not skew the fact erythromelalgia has basic, verifiable, outward signs and symptoms.
That is a fair assessment, especially because Erythromelalgia cannot be diagnosed - not really at least. Only something that is causing it can be diagnosed. Mine is considered Primary, but because it cannot be diagnosed on any test I can only assume thats what this is. It sucks, but just a viruses effect people in different ways so can disorder and diseases. As I said, there are certain things we all share that makes us believe this is what we have, but there are varying symptoms and degrees of those symptoms from person to person. For some people it just gets worse as time goes by, some it gets worse with change of environment. Some have it for years with no pain, then suddenly have pain. That is why it is “catch all” not because its overly (and wrongly diagnosed), but because it does not have a clear set of symptoms and sort of catches a lot of different symptoms for different people.
Most definitely worsened.
from 2-6 maybe, i had burning genitals. (not knowing what it was… ) if you can imagine, my mother would slather vaseline all over my crotch then made me wear underwear she sewed herself, made of extra thick, thicker than flannel, to ensure the vaseline didn’t leak onto my pants. so… sealed me all up with a burning crotch!
from 8-13 my face regularly flaired
then id say a remission… but possibly not, i always felt i had hot feet or cold feet but it didnt make me miserable just annoying
then at 41 major stress… and BAM, knees, face, ears, nose, hands, genitals, feet… everyday… minus 3 hours in the morning where im usually suffering from raynauds.
my stress has lessened significantly but the BURN endures
A “catch all” in medical terms has a distinct meaning. Also known as a wastebasket diagnosis, it’s a vague or fake medical or psychiatric diagnosis that cannot be proven to exist by any clinical test. A lack of abnormalities on physical examination and the absence of objective diagnostic tests are key features. Fibromyalgia and chronic fatigue syndrome are common wastebasket diagnoses. Erythromelalgia doesn’t fit the “catch all” or wastebasket standard because patients present with plainly visible erythema and elevated tissue temperature. The lack of objective diagnostic tests for erythromelalgia does typically make it a diagnosis of exclusion.
Wow cherry,
Mine is so similar, however it first started when I was 22 just my palms and genitals, then went into remission, now at 30 after a big bout of stress and anxiety “pow” worse then even! Hands feet genitals. But strangly I experiwnced numbness in my genital and fingers. Which I hear is an unusal symptom.
Hope this shit goes lol.
Mine is still the same since january. No pain, but the toes get very red if my bodytemperature increases/warm weather.
Have contacted a doc, but he doesnt take it serious. I am actually thinking of surgery to remove the EM, its so annyoing.
How do you mean surgery leo? Dont do anything drastic yet as it really can cause permenant damage if you start cutting away nerves
Hi!
I mean like this one, Stereotactic surgery of erythromelalgia - PubMed
As u can see all of them got fantastic results, but as u said it can also go the other way.
My symptoms isnt that bad, but my redness/enlarged veins etc is so annoying, would do anything for any meds or so that would help.
Hey leo, have you tried any medication yet?
Hi! No, not yet. But i dont see how it could help? I thought the medications were only for EM-people with pain? How can the medications stop the redness/enlarged veins?
No, not always leo. Symptoms are not just pain. I want to try beta blockers, certain ones can vcreate vasodiolation look them up for EM. My doctors are really crap at diagnosing it so its taking me years to get anywhere with it. I would rather try beta blockera then anticonvulsants
Sorry leo, I mean vasocontriction
Hmm, interesting. How is ur case then? Do u have pain or just discomfort?
More so discomfort, like a throbbing feeling when the limbs are hanging down. Just feels like pressure. However that is also classed as a type of pain. That is from the vasodiolation of the arteries. It seems erythromelalgia is form of constant vasodiolation from possibly disruptive nerves keeping your arteries open. So beta blockers or anticonvulsants which both can affevt the neuro transmitters and nerves that affevt vasodiolation. So you have try these options first to see what can possibly work for you. I know Carter on this page has been symptom free for a while using a sodium or calcium vlocker I cannot remember which one. So don’t give up yet. Try things and try not to get stressed coz stress can make it worse.
Sometimes its caused by secondary issues like MS, blood disorders and immune problems so make sure your doctors chexks these areas. Also take note of any other symptoms alomg with these a doctor can help determin if its another cause.
I just wanna sort my genital area out, I can live with the hands and feet problem. I have seen veriations of the genital area helped with carvidilol on numerous studies online it seems it is a verient of rosacea which is all linked to the same thing. I hope this helps Leo. Don’t do anything drastic yet.
It sounds pretty much like EM to me. Venous insufficiency goes hand in hand with EM.