Wow the website has changed.
So I went to the doctor and told her I have EM. She said I have to be extremely sick, my bloodwork has to be off the charts in order to have EM. My platelets have to be off too. Has anyone ever heard of that?

Your doctor is wrong. There is no way to sugar coat it. I’d get a new doctor.

But just to elaborate, some people get EM as a consequence of Essential Thrombocythemia (excess platelet production), but most people with EM do not have Essential Thrombocythemia.

Thanks carter…do you have any idea where she got that info? Maybe that is for Primary EM…I just realized, maybe that’s where she’s coming from. I ordered a pamphlet from the EM society but they never sent it to me, even though I paid $1. I can’t change doctors.

Thanks I just saw the part about Essential Thrombocythemia.

She saw my feet turn red in her office. Mine also turn red from hanging so I have to keep them in my chair normally. But she said it looked like Raynaud’s. People with Raynaud’s don’t have constantly burning soles and toes. I know in the Winter, it hurts esp my fingers.

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Yeah, I thought it prudent to add that. Some people get EM as a result of myeloproliferative disorders like Essential Thrombocythemia and Polycythemia Vera, but there are many more who don’t. Primary Erythromelalgia isn’t related to a myeloproliferative cause at all and Secondary Erythromelalgia is poorly understood. A myeloproliferative trigger is one of the few known causes for Secondary Erythromelalgia. It’s not the only cause.

There are similarities between Raynaud’s and EM.

So now I have to convince her to send me to someone else, by convincing her that I don’t have to have essential Thrombocythemia or Polycythemia Vera. How to do that, I have no idea.

It is possible your doctor is right. Has she tried putting you on a vasodilator? That’s the typical treatment for Raynaud’s. I knew a guy with the condition and he took Cialis (the erectile dysfunction drug) for it.

I believe I did have Raynaud’s in my 20’s…that was 40 years ago. I think now I have EM and maybe I have both, I am not sure. But I cannot wear shoes…the pain to stand is excruciating and the soles of my feet burn so bad esp at night that I have a hard time going to sleep. They already tested me for peripheral neuropathy and it is negative. My toes turn red also and the soles of my feet are hot to the touch. I believe I have a mild case, not like some pictures I’ve seen. I would consider this a crippling pain yet Raynaud’s is not that bad, although in the winter my fingers if cold, are in pretty bad pain but once they are warm, they are back to normal. The soles of my feet want to stand on ice all the time. I just don’t think that classifies as a Raynaud’s symptom. Also I have a nurse practictioner…that is all we have here in a rural area.

I think it is possible that some cases of Raynaud’s could be confused with erythromelalgia, primarily because the reactive return of blood flow to the affected area in Raynaud’s can mimic the symptoms of EM. The area will turn red and hot.

Are your feet often cold?

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My feet sweat alot, trying to cool themselves off. I cannot stand to wear socks. And once I sit down, I cannot stand for the soles of my feet to touch anything.
Also my symptoms never matched Raynaud’s. I never got blue fingers. And I don’t hear anything about foot dependency with Raynaud’s only EM. I have to lift my feet up in my chair. So whatever causes burning soles and toes, inability to wear shoes and socks, wanting to soak your feet in ice water, unable to stand on my feet, well that’s what it is.

My feet do look like this 4th picture down: http://www.erythromelalgia.org/whatisem.aspx

I’m just trying to play devil’s advocate here… When your feet are NOT flaring, what are they like? Do they feel and appear normal? Are they ever cold to touch? Do they ever appear purple? Do your feet ever go from being ice cold to hot relatively rapidly?

My doctor read the same thing on the website Medscape. Although it is a really good website, the article on Em doesn’t really take into account the recent research.

I have EM and my bloodwork is beautiful. Your Dr. Is wrong.


Have you had your B12 level checked? Since you are in your 60s, your stomach acid may be low (it diminishes as we age) and this interferes with proper absorption of B12. My EM was caused by a B12 deficiency due to pernicious anemia.

When you get it tested, it should be in the upper half of the normal range or you may be becoming deficient.

After years of my doctors different ones blaming all sorts of things causing my EM I think I have at long last found the cause of it. I have had rheumatoid arthritis for quite a few years, but now it seems I have rheumatoid vasculitis, which means my blood vessels are inflamed. The first thing they had to try before they were allowed to use the proper thing was methylprednisolone infusion to see if it worked. It did, but only lasted 3 weeks. Now I have started having Rituximab, which was originally just a cancer drug but is now being used for vasculitis. The only thing is it takes between 2 and 12 weeks to kick in. I had my first one a week last Tuesday and the next is next Tuesday. After that it will be 3 months and then every 12 months. Of course until kick in time is reached I don’t know if it has helped, but I have great hope for it.