Hi everyone, as the title says I’m new to EM. This year I had a couple of times where it felt like I had an ingrown nail or something on random toes, would go away after a couple days. Then late April I had the first smaller flare up, concerned me. My toes that flared never went back to normal and after a week I had my first doctor visit. Two virtual doctor visits tried treating for skin problems then infection, to no avail. I finally caved and went to my usual GP (first two were virtual as I was trying to avoid a doctors office because of Covid concerns), and he immediately diagnosed EM after I went through the short history. The treatments for the other weren’t working and I was beginning to have painful flareups. I had never heard of EM but once he started explaining the symptoms it became pretty clear. I was lucky that he had seen it before like 20 years ago, so I didn’t have to go through the arduous process of finding a doctor who knows wth it is.
He first set me on Amlodipine, which I’ve been on until last night (2.5 at first then up to 5), I don’t think it has helped, unless it has prevented it from getting much worse I guess. I saw a Rheumatologist, and tested for a bunch of autoimmune stuff (14 vials of blood in one sitting didn’t feel very good, it was an experience), which came back fine. So I’m back to my GP, we’re going to try Cymbalta next, I’m going off the amlodipine, and we’re going to add in the magnesium supplement also. My next referral is to an Internist/Hematologist who helps my MIL with some of her issues and is a good doctor. If that goes nowhere I know of a Neurologist who’s really good that I might try.
I don’t have any other major health conditions that I’m aware of, all of my tests have come back fine so far, and I don’t have any history outside of some eczema once in a while.
My symptoms are still mostly in my toes, my flareups usually happen when I’m tired (before bed or during sleep), and after trial and error using a fan seems to be the most effective in treating my flareups. My circulation has become worse in the last couple months (as I’ve stayed off my feet for the most part), and sitting or standing in place are by far the worst things for my feet. I’ve started getting hot hands here and there also, again, usually later in my day.
I don’t really have any questions at this point, I’ve been going through a lot of reading on here, my heart goes out to all of you who have been fighting this for a while. It sucks. I’m a lazy guy ultimately, but I’ve always been very capable, a handyman (not by choice but there’s always a to do list), and never really had to rely on anyone else for anything. Since this started I’ve basically had my feet elevated 23 hours a day to avoid flareups, and it’s a completely new thing for me. I can handle not being outside (I prefer it actually) or not doing labour (again, preferred lol), but it’s a difficult transition from being the one who’s relied on to the one being taken care of so abruptly.
Hopefully some of these treatments yield better results for me so I can help out again.
Anyways that’s basically a wall-of-text hello, I will be around the forums and will update my progress. Take care all!