Anyone out there with Erythromelalgia?

Becky, this is so helpful! I will follow your advice and read all I can on EM.
About four months ago I was taking a bath and suddenly my hands turned bright red and the burning was awful. I had been taking a B12 vitamin and realized the dose was tons over the RDR. I thought maybe I was having a reaction from the cobalt which is in B12. I quit taking it immediately, but that did not stop the redness and burning.
I had bloodwork done that was normal. My feet are now turning red also when I bathe, even in warm water. So far I only have symptoms when I do dishes, bathe, etc.
Thank you again for your help!

I want to tell you that I spent last evening reading links you suggested. I also did a search here as you suggested.

I have not been diagnosed with EM. I live in a small town and doctors are not familiar. So I have been debating about seeing a specialist, but not sure what kind.

One thing I read is that the sooner EM was diagnosed, the better. I am not sure why that is. I am 75, and reading about those of you ' youngins' dealing with this breaks my heart.

Again, Becky, thanks for your help!

A good neurologist can diagnose EM.

The burning tingling pain started in my feet mildly in 2017. I was misdiagnosed with neuropathy. But as my symptoms increased, and my life became very limited, I started searching and asking for many tests. I went to a Neurologist and was tested for neuropathy and the test came out negative for neuropathy. From there I searched for blood vessel disorders, And the major blood vessels were normal. I tested for many things, heavy metals and arsenic, blood vessels, neuropathy, and others. I finally found a neurologist who diagnosed me with ERYTHROMELALGIA. I have tried gabapentin, Lyrica, oxcarbazepine, carbamazepine, amitriptyline, Duloxetine, And many supplements. All of these either did not work, Or else the side effects were intolerable. I find that store brand Bengay, ice packs, and elevation are about the only things that have done any thing for temporary relief. Next, I am going to try berberine, it is an over-the-counter supplement that has been researched quite a bit and found to help with neurological inflammation. I find that the “Now” Brand of supplements work the best for any supplement, I know this because I had my vitamins tested With a blood test, and that is the brand that works the best. I take ALA but I have not had any relief for the Neuro pain by taking ALA by Mouth, But I take it anyway. I also tried steroid injections near my spine, with no relief. I have found that Triamcinolone 0.1% cream Twice a day just on the very bottoms of my feet helps some. This is a steroid cream but must be used with caution, but because it’s on the bottoms of my feet where the skin is tougher I do not have to worry about thinning of the skin there. I cannot go food shopping because of the pain, I cannot stand long enough to cook because of the pain, My life has become very limited. I spend a great deal of time on the couch elevating my feet, And I limit the ice packs to 10 minutes at a time to avoid skin ulcers by icing too much. By afternoon my feet are dark red with purple areas because of the vascular part of Erythromelalgia, And the nerve pain is so bad, I just wish it was visible so the doctors could see it. I have learned that it is the micro and small blood vessels that are affected, so that is why the test for veins and arteries comes back normal because they only test for the large veins and arteries. And it is my understanding that the Neuro part is the small fiber nerves, So things like a spinal nerve stimulator device do not work. Has anyone else discovered anything that has worked for them? I live in Florida, so the hot days are so much worse for me, because anything heat related makes my feet worse. It is better for me that it is cold out and my floors are cold.

I live in Florida too. When I read your post, I cried. I just got out of a 4 day hospital stay due to a horrible flare and my partner of 22 years said "maybe you need to go outside and get some sunshine & vitamin D". I was stunned and heartbroken by his cluelessness. He evidently thinks I'm just lazy. No one understands this. I have neuropathy as well.

The burning tingling pain started in my feet mildly in 2017. I was misdiagnosed with neuropathy. But as my symptoms increased, and my life became very limited, I started searching and asking for many tests. I went to a Neurologist and was tested for neuropathy and the test came out negative for neuropathy. From there I searched for blood vessel disorders, And the major blood vessels were normal. I tested for many things, heavy metals and arsenic, blood vessels, neuropathy, and others. I finally found a neurologist who diagnosed me with ERYTHROMELALGIA. I have tried gabapentin, Lyrica, oxcarbazepine, carbamazepine, amitriptyline, Duloxetine, And many supplements. All of these either did not work, Or else the side effects were intolerable. I find that store brand Bengay, ice packs, and elevation are about the only things that have done any thing for temporary relief. Next, I am going to try berberine, it is an over-the-counter supplement that has been researched quite a bit and found to help with neurological inflammation. I find that the “Now” Brand of supplements work the best for any supplement, I know this because I had my vitamins tested With a blood test, and that is the brand that works the best. I take ALA but I have not had any relief for the Neuro pain by taking ALA by Mouth, But I take it anyway. I also tried steroid injections near my spine, with no relief. I have found that Triamcinolone 0.1% cream Twice a day just on the very bottoms of my feet helps some. This is a steroid cream but must be used with caution, but because it’s on the bottoms of my feet where the skin is tougher I do not have to worry about thinning of the skin there. I cannot go food shopping because of the pain, I cannot stand long enough to cook because of the pain, My life has become very limited. I spend a great deal of time on the couch elevating my feet, And I limit the ice packs to 10 minutes at a time to avoid skin ulcers by icing too much. By afternoon my feet are dark red with purple areas because of the vascular part of Erythromelalgia, And the nerve pain is so bad, I just wish it was visible so the doctors could see it. I have learned that it is the micro and small blood vessels that are affected, so that is why the test for veins and arteries comes back normal because they only test for the large veins and arteries. And it is my understanding that the Neuro part is the small fiber nerves, So things like a spinal nerve stimulator device do not work. Has anyone else discovered anything that has worked for them? I live in Florida, so the hot days are so much worse for me, because anything heat related makes my feet worse. It is better for me that it is cold out and my floors are cold.

It is good to talk to other people on here who have the same pain and the same symptoms and deal with unbearable circumstances because of it. People just don’t Understand erythromelalgia And how intense the pain is and how debilitating and life-changing it is. But I’m finding it a blessing to find out people like me who also suffer, somehow it helps to know that someone understands your pain. Like I said, I wish it was visible for everyone to see it. I don’t want to spend my day on the couch icing and elevating. I want to be out in nature and birdwatching, not laying on the couch. I get some good books on CD from the library, well my sister goes and gets them for me, I cannot even walk into the library, and I listen to the books on tape while I’m on the couch and it helps to distract me from the pain. Lately I am into Amish books, which somehow gives me some sense of peace. Or some books are murder mysteries which keep me intent on the book so that I am not thinking of the pain so much and thinking of my list of things to do that keeps piling up. I try to pick one thing to do every day, just cleaning one toilet, or mopping one floor, or vacuuming part of a carpet room. And then I think of my accomplishment ever, at least I did something for the day. And my cat is so entertaining, and I have to take care of her, and this also helps me to stay focused. my sister takes me to church and We only stay for 45 minutes because I cannot stand it any longer than that, but I wonder how much longer I can just do that much. With me, it is not flareups because the pain starts as soon as I get out of bed. The pain is whenever my feet are lower than my heart, and other words whenever I am standing or sitting the ramps up And gets worse as the day goes on. Mine is every day from the time I get up till what time I go to bed.

I live in Florida too. When I read your post, I cried. I just got out of a 4 day hospital stay due to a horrible flare and my partner of 22 years said "maybe you need to go outside and get some sunshine & vitamin D". I was stunned and heartbroken by his cluelessness. He evidently thinks I'm just lazy. No one understands this. I have neuropathy as well.

@nancyc777 Welcome to MayoClinic Connect! I’m glad you’re here. You’ve certainly tried everything and documented it well. Are your doctors at a comprehensive medical center or university hospital? The reason I ask, is because I don’t feel that you are getting adequate care. Maybe you are, but it seems like nothing is working for you.
Would your doctors be open to referring you to Mayo Clinic, Jacksonville? Would you be open to going to Jacksonville? Here is the link: https://mayoclinic.in/1mtmR63

Were they able to do anything different for you while you were in the hospital? How did they treat Your flare up? Are you taking any medicines or treatments that work? Yes, it is frustrating when other people just don’t understand. Maybe if you showed your partner some of the other peoples posts here, then your partner would understand better, because they would see that there are many other people just like you who have horrible symptoms and who deal with devastating pain.