I have just seen a rheumatologist who doesn’t think I have EM because I don’t have Raynauds. Also my feet weren’t red at the time although they were burning a bit. She hasn’t written me off completely, she is going to try heating them and using a thermal imaging camera, also I’m having more blood tests to rule out a blood disorder, but she is expecting them to be clear. I do have flat feet since i was 12! And wore orthotics successfully for 5 years until the EM started up and I couldn’t bear the pressure of them digging into my feet. She was trying to suggest that orthotics would solve my problem until I pointed out that I’ve already seen a podiatrist who suggested it was EM! So fed up of going round in circles, but my question is how many of you have EM but not Raynauds, as I need some ammunition for the next time I see her!
I happen to have Raynauds but I would be surprised if those of us with it are in the majority. You certainly don’t need to have it to have EM as I am sure lots of people are going to tell you. There must be statistics somewhere and I Will try to dig them out.
According to the 2008 member survey conducted by The Erythromelalgia Association, "Raynauds is the most frequently reported #comorbidity#, appearing in 42% of those who named another condition, (or 20% of all survey respondents)
I have Reynaud ’ s too but it came about a year after my EM started. It’s not uncommon but plenty of people don’t have both. I hope you get some answers soon 