Need Help figuring out if i have erythromelalgia! (With Pictures) Text Below








Hello,

so i am trying to figure out if i have EM, i will post pictures too see what your opinions are. This whole time ive been thinking its digestive problems but as im getting very heat intolerant im thinking it could be something else.

Symptoms

Bulging Veins in arms and Legs (Inflammed veins in Arms)

Red Hands and Feet (Red Finger tips and Nuckles, red toe tips)

Tingling and prickle feeling in arms,hands, feet

Heat Intolerance

Food Intolerances

Symptoms get worse when

Hot Weather

Hot body Temperature

Having a hot shower

Eating refined foods (grains)

Stress

Physical Activity

Im only 20 years old and it has effected where i am able to work and what i am able to do on a daily basis. I cannot eat out with my friends because foods also triggers a flare up reaction. I find the symptoms get worse at night and when i wake up they dont go away until an hour after ive been awake. I get very hot and irritable and stressed out. The main thing that i notice is my arm veins bulge out and it feels really uncomfortable and i get a "shot like" trigger that makes my whole body hot and other vein areas in my legs begin to become inflamed and then i notice my hands will get very red. I Cant be outside in the hot weather anymore because of this. And when i eat food that i feel i am sensitive too they bulge out even more. Heat is the main trigger, but stress is also another factor. I was thinking that i had digestive problems and am currently getting tested for IBS and Chrons but my Doctor doesnt know anything! I need your guyses expertise to hopefully figure this out

1 Like

My email is deon_skov@hotmail.com if you can help me, thanks! Or reply :)

Nice post Deon. Of course we're not doctors here, but hopefully the members can give you some tips and things to think about. the best thing to do would be to read the Discussions on the site and print a few of them out and bring them to your doc to discuss!

My EM started with tingling/pins and needles, bulging veins and swollen red feet.! I only feet heat/ burning where the flare is and not throughout my body. Mine is also triggered by the same triggers as yours.! There are some great articles you could read and show your doctor, I also recommend showing them photos whilst in and out of flares so they can compare. Good luck.

Hi Deon,

Your photos look how i was when my EM was starting- especially the inner feet /ankle area. Your symptom triggers are the same for most of us on this site. Sometimes you need no trigger at all. Flares can last months ,weeks, days or minutes I agree with Scott, take these photos and any information you can to GP or specialist. I know have chronic widespread EM which has totally disabled me. Some EM can progress slowly or stay stable. Unfortunately mine spread like wildfire in a matter of months. Will send you my email. I truly know how distressing this is for you - we all do Deon.

Stay strong, stay positive. Some of us have found some ways/meds that can help give little albeit fleeting relief.

Check out Dr Cohen website and TEA association. If you would like any research let me know.

God bless

mads x

I am glad that you already received replies but I want to add my *5 cents* - the hardest thing at the beginning may be to find a doc. to give you the right diagnosis. I have noticed that dermatologists come in contact with EM sufferers and know about this disorder. I guess people go to dermatologists because for some it just starts with red feet or hands and it looks like some kind of a strange rash. Good luck.



Domina said:

I am glad that you already received replies but I want to add my *5 cents* - the hardest thing at the beginning may be to find a doc. to give you the right diagnosis. I have noticed that dermatologists come in contact with EM sufferers and know about this disorder. I guess people go to dermatologists because for some it just starts with red feet or hands and it looks like some kind of a strange rash. Good luck.

I can't see my reply so am trying again(not good with tech!) I strongly advise you to see an experienced dermatologist as soon as is possible for a referral. I suffer multiple conditions and have multiple specialists involved in my care,but it went unexplained for six years until instant diagnosis by a wonderful dermatologist. You don't want to be following wrong advice if your condition turns out to be something else! I hope you find out and things improve for you. With all good wishes.

thanks everyone. taking all your responses into consideration

From what I see, you don't have EM. If you do, It is extremely mild. Try cutting out any food that has ANY preservatives in them for one week and see if that makes a difference. Look on the labels because there are preservatives in almost everything. Mono Sodium Glutamate is the most common one in Chinese food. Hope this helps You. Brian L.

Brian , I want to reply to that - my EM was a lot less visible when it started - 2 little slightly red patches on the inside of my left hand - it's now 4 months later and only a few areas of my body left that are not effected.

Domina, I certainly did not mean that you didn't have EM. I should have written that more carefully. I was trying to be helpful by suggesting that if the redness was caused by a reaction to preservatives in the food, they might go away if all preservatives were removed from the diet. Sorry for the mistake on my part. I was trying to be helpful. Brian

Domina said:

Brian , I want to reply to that - my EM was a lot less visible when it started - 2 little slightly red patches on the inside of my left hand - it's now 4 months later and only a few areas of my body left that are not effected.

Hello Brian - I knew what you meant . I just wanted to let the person (Deon) - who send the fotos and was not sure whether he had EM or not - know that the beginning of EM may really look quite harmless and that he shouldn't wait trying to get a diagnosis. No harm done - hope you have a nice day and stay cool :-)

looks like mine when i started three years ago, i was twenty as well. the worst starting pain i had was the throbs at night when trying to sleep, so painful, just would put ice cubes all over my feet every chance i could, but dont use ice!!

Hi Deon. I'm not a doctor, but when I looked at your pictures, it looks exactly what I started getting two year ago, especially the bulging veins in my arms and legs. I was 39, very healthy and fit, loved to run and exercise and suddenly my veins would swell and bulge, just like your pictures. Then, I'd get red blotches on feet and they would itch and burn off and on. I went to tons of doctors without any help--finally went to Mayo Clinic where they said I might have EM, but it was hard to tell since I wasn't having a flare up at those exact days. Anyhow, I tired an ointment they prescribed with little success. After another year without any luck, I went to a whole health Dr. who is a naturapath. He found that he'd treated this before with some supplements, Magnesium and Phosphatidylcholine, a dietary supplement that I asked my neurologist about, and she said it was fine. I took several of these based on what this doctor said, and it seemed to help my symptoms. I hope you get some relief. I know it was a very difficult time for me, but I've been feeling good for about a year and half with not many flare ups, while a few years ago it was every day.

THanks Alynn. I heard about those supplements too but they have not helped. Magnesium maybe has helped a little bit but barely

alynn said:

Hi Deon. I'm not a doctor, but when I looked at your pictures, it looks exactly what I started getting two year ago, especially the bulging veins in my arms and legs. I was 39, very healthy and fit, loved to run and exercise and suddenly my veins would swell and bulge, just like your pictures. Then, I'd get red blotches on feet and they would itch and burn off and on. I went to tons of doctors without any help--finally went to Mayo Clinic where they said I might have EM, but it was hard to tell since I wasn't having a flare up at those exact days. Anyhow, I tired an ointment they prescribed with little success. After another year without any luck, I went to a whole health Dr. who is a naturapath. He found that he'd treated this before with some supplements, Magnesium and Phosphatidylcholine, a dietary supplement that I asked my neurologist about, and she said it was fine. I took several of these based on what this doctor said, and it seemed to help my symptoms. I hope you get some relief. I know it was a very difficult time for me, but I've been feeling good for about a year and half with not many flare ups, while a few years ago it was every day.

FWIW, that looks very much like EM to me. Mine is like that, but the redness/flaring is worse (and slowly getting worse as time goes by). I also have digestive issues, interestingly. My EM started in my toes, then a couple of years later the veins in my hands started bulging... a few months after that, I started having EM flares in my fingers. I see the pink color at the cuticle (right before your nail begins) - mine look just like that, and it was something my rheumatologist was very interested in, as the swollen capillaries can be observed under magnification and may help in the diagnostic process.

My symptoms began at age 25, so I know the frustration and loneliness of suddenly losing most of your social life. Just a heads-up - I have a harder time in winter than summer... going from cold to flare is simply more extreme than going from medium to flare.