I think i have erythromelalgia - The Erythromelalg...

The Erythromelalgia Association

I think i have erythromelalgia

Matty662
Matty662

Hi,

My names Matt 29 years old, I was diagnosed with raynauds about two years ago. I get cold hands feet, tingles and Pins and needles. However I’ve noticed that not only do I get cold I get extremely hot. When the heating comes on, when I exercise and when I’m asleep.

I also suffer from facing flushing which is so embarrassing especially as I have acne scars on my face and the flushing makes the scars look worse.

My sleep is terrible I wake up on average once an hour feeling hot or cold. Not only do my hands and feet and face feel hot but my whole torso as well.

I just spoke to my gp about referring me to rheumatologist but he said there’s no such thing as erthromelalgia Wtf??

Anyone else suffer from raynauds and EM? How do you manage them both? I’m thinking about asking for beta blockers but this will just exacerbate my raynauds. Help please.

1 Reply
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Hi Matty. I'm sorry that you haven't had a reply yet, but here goes! Please see my message to Boudica1 . I have had reynaud's since my teens, and EM for the last 8 years ( I am 62). It took a while to get a diagnosis, and basically I diagnosed myself and presented the info to a rheumatologist I was seeing for arthritis. Although he confirmed it, he told me there was nothing to be done, he just didn't care. So I did research and with the help of the EM warriors doctor's list, pushed for a referral to a specialist in London. I was seen and got a load of tests done, so now I know that my EM is basically benign. I have advice on how to manage it but there is not magic bullet. Personally, I feel much better mentally for having had the proper exams and recognition that I have a painful condition. My GP also has to listen to me now. So, keep finding out, and be politely persistent with doctors. If they don't want to help you or educate themselves don't hesitate to dump them!