Last week I was reading the 'ask the doctor' page in my national daily paper and there was a question about Reynaud's which the Doctor had replied to.
I sent off an email to the paper asking if the Doctor had ever come across EM which is at the other end of the spectrum to Reynaud's. I just gave a short description of EM and said how debilitating it was for sufferers and thought no more of it.
I was really surprised when my question appeared this week and despite saying that she had never come across EM the Doctor had obviously done her homework in her reply.
I can only hope that other Doctors read the column as the more that know about it the better for we sufferers.
At the very least, those experiencing the symptoms may have that Eureka moment and go forearmed to their GP's.
Any chance you could post the column for us to share with our Doctors. I'd really like to see it myself.
Dr. Rosemary Leonard of the Daily Express abridged my email to her. This is how it appeared.
"Have you ever come across erythromelalgia, also known as Mitchell's disease? I am a sufferer who has only had a tentative diagnosis. How do I find a specialist for this distressing complaint?"
Her reply =
" I have never come across this condition but it does sound distressing. The blood vessels in the peripheral parts of the body, usually the hands and feet, become intermittently blocked and then the skin becomes inflamed, red and hot. Unlike Reynauds's syndrome which is triggered by cold, Mitchell's disease can be triggered by over-tiredness, heat or stress. In some cases it can run in families. Attacks are caused by a problem in the way messages are transmitted in the nerve roots of the spine. The estimated number of sufferers is 1.3 per 100,000 people and because it is so rare finding a specialist is going to be difficult. However doctors in specialist pain clinics should be able to prescribe medication that should relieve some of your symptoms. Your GP should know your nearest pain clinin and be able to refer you."
In my original email I mentioned the other symptoms of pain, swelling, burning and tingling which I experience.
I realise that there are constraints on column inches which is why she was restricted from an in depth article but it might help someone who sees it.
Thanks for sharing that piece with us,I wish my doctors would take the time to educate themselves about this disease. I guess it’s up to us to educate them.
Thanks for posting this for us, we could all do with doctors being educated more about EM. really glad she took to time to research it a bit and hopefully now that might help her to diagnose somebody who might have had to go years before getting lucky enough to get correct diagnosis.
I would have thought the stress and tiredness factors she cites stem from having the condition rather than be the cause of it. Most of us will have forgotten what sleep is and we are all most certainly under great stress from the symptoms. I shall have to google stress and fatigue as causes of EM just to see.
It's interesting to me that you say that, since I have more of the double diagnosis of Raynauds (and presumed EM). For me, I think anything can bring it on, but I don't notice that it's related to my body temperature. I feel like mine might be more stress and/or tired related. Most of the time, at least lately, I get most of my attacks when I'm studying in the evening, which could be times when I'm both stressed and tired!
Take, for instance, right now as I type this. I am quite chilly: I have 2 pairs of socks on, a blanket, sweatshirt. My feet hurt they're so cold, and my right hand (which I use to move my mouse) is freezing while my left hand is very warm, red and uncomfortably swollen. No explanation for that except "weird"! Haha. It sucks because one hand I want to hide away to warm, while the other I'd like to take off, but I need both to do work (and type) and have to deal with different types of pain! I've never been a normal presentation of anything, but, for me, it was almost reassuring to me that she said that in the article. Nothing else fits the symptoms when I have them, but it's not always triggered by heat. I'd be interested to see what you find, or what others may have to say about it! :)
Thanks for sharing the article!
Thanks for sharing that piece with us,I wish my doctors would take the time to educate themselves about this disease. I guess it's up to us to educate them.
It makes me sad to hear this, and yet it's unfortunately true. Saying is easier than doing, but I'd encourage you to talk to your doctor/provider about how you feel about it. If you have a good relationship with them, you should be open about it with them and let them know what you want/need from them. If you don't have a good relationship, try and use it as a way to develop a better relationship (if that's what you'd like). Maybe something like "I'd like to work with you more, but I'd like it if you learned more about this to help me better understand". In a perfect world, providers would go and look something up and come back and talk to you about it, and it sounds like that's not the case with you, and I am sorry for that. And I'm sure all of us know this, but always be your own advocate. You know what's going on, you feel the pain, you need someone to help you with it. And if that's not being done by your provider, find a new one. You don't have to tell your provider that you're trying someone new; you can if you'd like. Or maybe they tell you they can't help. But if we want any kind of help, we unfortunately will have to do some hard work to find someone to do it.
As something "encouraging" (depending on how you look at it), it might help you to know that patients have to educate their docs on a lot of stuff, if not directly, than indirectly in the way the present with symptoms. Nothing ever follows the books, and doctors have to keep studying and learning. Some take what you come in with, say they don't know, and do something about it. Others leave it at "I don't know". But even with common things, it's not always what you'd expect. So it's not just us "zebras" that they have issues with. Sometimes they struggle with the "horses" too! [ from the saying, if you hear hoofbeats, it's more likely to be a horse than a zebra]
Wishing you good luck in the search for the right provider! There are good ones out there, you just have to find them :)
After seeing so many discussions on here about doctors not knowing what EM is, I am so surprised that the nurse practitioner at my rheumy's office was so quick with an answer when I described to her what happens to my hands. I quickly went home and googled it and had a eureka moment - - the description was exactly what happens to my hands -- I always wondered why they are worse when they are lowered and why if I raise them( not too easy to do with your hands) they get better, but wow even that was in the description. And wanting to submerse my hands or feet in cool water to cool them off is exactly what I feel. I am impressed that my Nurse Practitioner was so well informed of EM as to recognize the symptoms so quickly. But she didn't offer any treatment as of yet, and at the moment I wasn't asking for any-- just wanted to know what in the world was going on. Just wanted to mention that some are learning about EM somewhere -- my NP is young so maybe they are learning about it in school now??