New to EM

General
1

Hi everyone. I was diagnosed with EM a few months ago. I’m not even sure if that’s exactly what it is. The Dr was just going off of what another Dr thought. I’m wondering if it Could be chilblains instead… Or possibly both.

It all started about 6 months ago, my,toes would start super itching after I took a shower. Then came the redness, and very intense pain. My toes would feel broken, they were swollen and bruised. One Dr thought it was Rheumatoid Arthritis but another didnt agree. They hurt in the cold and feel swollen, burn, and itchy when hot. The winter is the hardest, showers cause flare ups. But I have problems in the summer too, my toes feel tingly and like they are going to explode from pressure.

Do any of you have any advice? I can’t find anything that helps.

2

Hey Erin,

Thanks for sharing your story and concerns. I am also new to EM. I don't want to provide a ton of advice because I don't know enough about EM or other conditions to compare it too.

Usually, Raynauds is associated with the pain from the cold weather, and EM is associated to pain caused by the heat. Here is a pretty good article that explains both of them https://www.ahni.com/Specialties/Foot+and+Ankle/Articles/Common+Disorders/Erythromelalgia.html

For me, I am very sensitive to the heat, and I find comfort with the cold weather. I am sure it must be very difficult for you to find the medium and comfortable temperature. I hope you continue talking to different doctors and trying different treatments. Personally, I am on my second round of treatment. Everyone reacts differently to medications and complementary therapies. It is challenging and frustrating, but I encourage you to continue to try new things until you find something that helps even if it is minimal.

Thanks for sharing and you are in my prayers!

3

I was finally able to get an appointment with a new dr, we just moved. He think I may not have EM at all. Dr thinks I have MS so now I’m going to a neurologist to get tested for that.

4

Hey Erin,

I hope your new doctor has some better insight. Best wishes on all your test and outcomes. I/we are here if you need any support.



Erin R said:

I was finally able to get an appointment with a new dr, we just moved. He think I may not have EM at all. Dr thinks I have MS so now I'm going to a neurologist to get tested for that.