New to EM, Diagnosed, starting journey

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!


Erythromelalgia is often triggered by small fiber neuropathy. Have you had a blood glucose or hemoglobin A1C test to see if you’re prediabetic or diabetic?

My suggestion would be to ask your doctor about prescribing mexiletine, a sodium channel blocker.

Good luck. You’re fortunate to have seen a doctor who diagnosed you that quickly.

I did have that workup and it was fine. I will look into mexiletine if this next step doesn’t work. I appreciate the suggestions and I will continue to look around here. Nice to see there are communities for this sort of thing, always makes it just a bit easier to cope with when there’s support out there.

There are few, if any, chronic health conditions for which being sedentary is not contraindicated. I’m one of the few here who recovered from an erythromelalgia diagnosis and I suspect my adherence to exercise played a significant role. While it can be difficult when symptoms are not (at least partially) controlled by medication, you should try to find some sort of activity you can tolerate. Complete inactivity may be associated with a more severe disease progression.

I don’t doubt it, and I know that’s something I need to get doing, as the longer I go without doing it the harder it’s going to be to get back into it. Appreciate the advice.

Thought I would update. The Duloxetine (30mg) and Magnesium Citrate (150mg) seems to be making a big difference. I no longer get bad flareups at night, and I can put socks and shoes on again for a period. I even mowed the lawn the other day. This has been a big difference from daily flareups and fan on my feet most of the day. The worst I get now is if I’m upright for too long, especially stationary, one of my feet will start to go red, like the blood pools and it will get swollen. Elevation solves it (with a fan is best) within 5-10 minutes though. I had to stand in line waiting for bloodwork in the heat, that got a little dicey but I made it through.

The internist wants me to go on baby aspirin as well, he thinks it will help if my platelets are a little sticky, my red blood cell count (erythrocytes) is a little high. I have reservations about going on aspirin daily though given that I’m only 38 and am already on the duloxetine. I’ve read that the risk increase of internal bleeding could outweigh the benefits. As such I haven’t started the aspirin yet. Anyone have any thoughts on that?

Also the internist is getting me tested for some genetic stuff, I’m thinking related to the myeloproliferative disorders? I have a callback appointment with him in 6 weeks.

So some improvement, I’m even sleeping with blankets on my feet again. Just hoping the next step gets me doing more and perhaps even driving again.

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The benefits of aspirin therapy for erythromelalgia are immediately seen and only effective for symptoms related to myeloproliferative disorders. As it is an inexpensive and relatively low risk OTC option, aspirin is often the first treatment tried for erythromelalgia. If aspirin doesn’t provide clear benefit, it’s not necessary to continue taking it.

Everyone is different but for me diet is the main factor to control flairup, i cut out greasy fried foods, oily foods, white sugar, sugar is a hard one to cut out but if you can stop greasy foods u think you might see a big difference.