Possible erythromelalgia

I’m new to the group, my name is Jeremy and I’m 19. I recently started getting erythromelalgia symptoms. My feet get very red and hot at night. But I have no pain. I’ve been to the hospital several times and multiple doctors and can’t get any diagnosis. I have super bad anxiety and this is making it 10 times worse. Just looking for advice and wondering if I could have it without any secondary causes or pain? The flares happen every night around 3 am. I had a few cbc’s and a venous Doppler on my legs and feet all tests were normal.

“Erythromelalgia-like syndromes secondary to the administration of many medications have been reported.”

Were you taking any medication to deal with your anxiety?

I started 50 mg of Zoloft last week. At the time I started getting the flare ups I wasn’t on any medication

That makes sense to me. I believe that my EM started after I used Zoloft.

Where do you experience the symptoms?

In the hands mainly, but I also started getting tingly heat in my feet recently. Sometimes my face is hot too. I am not to sure if it is progressing or reaction to the antibiotics I have been taking recently.

I only experience them in my feet. No pain just get to touch and red. It’s blood rushing to them, the veins also bulge out. The same only other thing I can link it to is I have a habit of hyperventilating all day long and I know that can constrict vessels in feet. And then maybe when I stop hyperventilating at bed time the blood returns. My feet are cold at times but they don’t turn white like raynauds.

I also experience cold hands. Sun exposure dilates the veins in my arm; as a result, I also sense a “blood rush” to my hands. My normal hand temperature is 93 degrees according to a FLIR thermal camera. The average temp was 97 degrees with the group I tested.

Hi Jeremy,

It’s possible that it is EM despite the absence of pain. I have been diagnosed with EM a couple of years ago and get intense heat, redness and swelling in my feet but no pain yet during flares (though it might change), around 3am too.
My CBC and venous Doppler were normal as well; I have a mutation in the SCN9A gene but it’s too common in the general population to cause EM on its own. Do you have any form of dysautonomia or collagen-linked illness?

Hi Jeremy,

If you have no pain, how do you know symptoms are occurring? Are symptoms accompanied by a non-pain sensation? If yes, what does that feel like?

I have been to multiple doctors and none seem to be concerned. I’ve had extensive blood work and it was all normal. I was told I’m young and to get on with my life as it wouldn’t kill me. Although them not having an answer for it bothers me the most. I normally know it’s happening because I can feel my feet getting hotter. Normally starts in my big toes first. The other night I poured ice water on my feet to cool them down and two of my toes turned white. Doctors are still not concerned and don’t think it’s raynuads because I live in Texas. It wouldn’t bother me so much if I knew what it was and knew for sure I didn’t have a serious disease causing it. I just feel like I’m a ticking time bomb. I’ve had two doctors say they think it’s anxiety. But I just don’t see how that was causing it unless it’s from my hyperventilating, which I have been doing a lot lately because my anxiety is severe.

and to the question about what sensation I’m feeling it’s more of a tingling and tightness feeling in my feet. Again not severe feelings.

Mike I noticed today while sitting at the pool in the sun my veins dilated and toes got slightly red. My feet are either cold or burning hot there’s no in between except for when I first wake up they are perfect and have the same temperature as the rest of my body

I’m sorry you have experienced this lack of empathy and competence from doctors. I expect they don’t like to admit that they don’t know everything - which we don’t expect anyway. But we do expect them to research it and help us. My experience with doctors isn’t any better; amongst many ridiculous things I was once told to get some common sense because there are worse ailments.

Just because we are not dying doesn’t mean we are not worthy of treatment that helps us getting our lives back.

Whether or not there is an underlying illness you should be cared for. Regular CBCs are a good idea as myeloproliferative conditions can precede EM for years. Have you tried low-dose aspirin yet?

If it is caused by anxiety they should address anxiety as well. But they should definitely suggest typical EM treatments.

I haven’t tried aspirin yet I plan to give it a go, right now elevating them and cool water help when the flares happen. But I couldn’t agree more about the doctors. I lost my insurance, the visits are racking up the bills and not worth going just to be told it’s not an emergency and I should just deal with it. I’m glad I found this group and can talk to other people having the same problems and understand how concerning it is at first.

Ya gotta believe in yourself. You have a picture that documents you have a health issue…it’s not anxiety…However there are few good doctors that know of EM. Even my Rheumy told me to go to a specialist lol Have you shown anyone that picture of your feet. Doctors also like textbook symptoms, you saying you have no pain, eliminates that diagnosis for them. When I worked in an office, I didn’t have pain either , not what I considered pain, but discomfort from my legs not being elevated. I also had plantar fasciitis which complicated things.

The other night while having an attack I poured ice water on my feet and elevated them and a few toes went numb and white. Normally my toes and feet are pale but not white. My feet have always been very sensitive to cold since I was a kid and would go numb.

Finally got a diagnosis this morning, I have primary raynauds even though I live in Texas, my stress is causing the constant episodes. Erythromelalgia is not for sure but is likely. I don’t have any diseases causing it. I want to thank everyone for all the help and hope the best.

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Hi Jeremy,
I have Raynaud’s since I was 19 also. I get red when I “defrost”.
I’m 63 now and last year started to get EM symptoms. I have a neurologist as I have MS and also have some other issues with autoimmunity.
My neurologist told me to research myself. I did. I got tested for Fabry disease, that was negative. I found that myself during research that is an inherited condition. The test came back negative. My rheumatologist is confused. Cardiologist says my Doppler’s are good.
So my neurologist says it’s coming from the autonomic nervous system.
I’m not a doctor but I believe your anxiety is most likely causing your Raynaud’s or at least exacerbating your symptoms. My sister has extreme anxiety too and all kinds of health problems have cropped up in relation to it.
Please get into some relaxation classes, meditation and even hypnosis. Don’t let your anxiety take over. Help yourself with music therapy that you can do at home.
Mild exercise as too much will make your feet hotter.
Good luck and keep in touch with us.

Ann, it seems like anxiety can make a lot of weird things happen. I’ve recently quit taking xanax for it because it does more harm than good and am trying to take care of it naturally. I just think it’s odd that when my feet heat back up it lasts for a while. My toes have only turned white twice but they do get very pale.