Hi. This is my first post. I have been to several doctors but none have an explanation for the sudden onset of my bright red, itching, burning hands. I had the first episode a year ago last fall immediately following a flu vaccination. It went away in a day or two, and then last summer it returned and has been with me in varying degrees since. It was less bothersome over the winter, but is flaring up again now that it's getting warmer. Also, my cheeks get fire red and hot sometimes as well. Do you folks think it's erythromelalagia? This is my self diagnoses for this distressing condition. My doctors just look at me like I have two heads and I'm talking in a foreign language.
Here's me and the doctors.
4-health.jpg (44 KB)I first began having symptoms a few weeks after I had a flu shot, but I don't think the two were correlated. Of course, that is merely my opinion. I could be wrong.
Carter - in my case the onset was immediate after the shot. I assume the first episode of red hot itching hands was an allergic reaction, but why it came back 8 months later and has been hanging around ever since is what has me pondering a connection. I admit, coincidences do happen.
That is a lot different than my experience, but not unlike the stories of some others I've read here. Some do describe a very gradual onset with long periods between flares.
My hands started first before everything else. And it was right after carpal tunnel surgery on my right wrist. My hand would turn red & then burn. I told my surgeon & he said it must be because I was using it too much too soon. Then it went away & I didn’t have it again for almost a year. Then one day at work both my hands turned red & were burning. And in a couple of months after that my feet started up. So, if my feet hadn’t started up then I would say it was the carpal tunnel surgery…just doesn’t make sense. That’s how it started with me.
The thing I find so odd is that in yours and my case it came on so abruptly. Miss Patti, I was wondering if yours was preceded by any mysterious skin symptoms in other places that look like reddened areas of lots capillaries? I have one spot on the crook of my elbow that they have actually reached the surface with little bumps that are filled with blood. My face is often fiery red too, and an area one breast. I have showed them to doctors and they nod and shrug.
Miss Patti said:
My hands started first before everything else. And it was right after carpal tunnel surgery on my right wrist. My hand would turn red & then burn. I told my surgeon & he said it must be because I was using it too much too soon. Then it went away & I didn't have it again for almost a year. Then one day at work both my hands turned red & were burning. And in a couple of months after that my feet started up. So, if my feet hadn't started up then I would say it was the carpal tunnel surgery...just doesn't make sense. That's how it started with me.
Yes. I do have red raised spots that I think are called hemangiomas. I had a couple of large ones taken off a breast & I have another couple of bigger ones on my stomach. Also, little tiny ones on insides of my arms. And, yes, they started before I had EM. My dermatologists know about EM but they have reached their limit about how to help. I want to try some more drugs but they don’t feel comfortable prescribing them so now my primary dr has taken over. He hadn’t heard about it until meeting me but he’s really brilliant & reads everything I give to him. Nothing has given me relief yet but he’s open to prescribing what I’d like to try. So I’m happy about that. And within the last 2 years it has gone to my face, head, ears, neck & chest. My face, especially my cheeks will turn bright red & burn badly…it’s usually always in the evening. I put ice packs on to get it to calm down. It’s interesting that ours came on suddenly. I haven’t found any rhyme nor reason for any of it. I just try to keep comfortable. I hope you are getting some relief!
The picture is the one on my arm. Whenever they draw blood they always say, "Oh you've already had some drawn." Do your hemangiomas look like this, or are they more like lesions or growths, Miss Patti?
Fluffycat, No, they don’t look like that. They’re like lesions. See my picture. I don’t know what’s going on with your arm. Have you seen a dermatologist? My picture is so big! I don’t know how to get it smaller. It really makes them look big & ugly!
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'Tis a mystery. Even my hands don't seem to follow the pattern. They get red, they get hot, and sometimes they itch. sometimes they sting. but I wouldn't describe it as PAIN per se. My face gets red and fiery hot but doesn't itch or sting. I guess all that makes me lucky. :)
All of my EM never follows a pattern. Like today…I woke up with my right foot burning. I sat down in my recliner with the fan on my feet & because it’s this time of year it started to cool down within an hour. So I thought I would do a couple of things in my home & then my left foot started burning & turning red. I’ve been in my recliner with the fan on & my left foot still won’t cool down. I think now it’s because it started in the late afternoon & now it’s early evening & my neck & left side of my face is burning. It always gets worse in the evening. But, still not as bad as in the winter because my heat is not on. And, yes, you are lucky you don’t have itching & pain! It’s a mystery!
Hi! Just chiming in here about a possible connection of EM and flu shot, of which I have no personal experience. I’m just thinking that with so many health related disorders you are be symptom free one day and then the next you’ve got something you’ve never experienced before. So then you think back and try to connect the two, which may or may not be correct. There is a lot of coincidence in life. I see this post is several months old, so I hope you’ve gotten answers and are also getting relief from your symptoms.
I had my first flare up when I was 30. Five years ago, I was working at a moving company. I was an extremely active person and also participated in “extreme sports” and many other intense physical activities my whole life. I would mistreat my body by falling hard a lot. Not to mention my diet was horrible. I consumed fast food daily, smoked and drank all the time. Also slamming my hands and feet on ramps and coping(metal pipes) while skating. I was over worked as well moving furniture and I would do it in very cold and hot temperatures.
For me it feels like I just destroyed my hands and didn’t take care of myself which led to this. My mother suffered from constant migraines which I have read is a similar mutation of the same gene.
I’ve never had a flu shot myself.