Anyone out there with Erythromelalgia?

@runwthme - I ran across this older report from 2007 that I'm wondering if you have seen or heard about - Mayo Doctors Report New Treatment, Study Findings (PDF): https://erythromelalgia.org/wp-content/uploads/2017/09/FootStep3.07-1-1.pdf

Mayo Clinic Rochester also has a care clinic for Erythromelalgia if that might be an option - Erythromelalgia Clinic in Minnesota: https://www.mayoclinic.org/departments-centers/erythromelalgia-clinic-in-minnesota/overview/ovc-20421220

Thank you so much. Believe it or not, that is the One doctor I have not seen. When I get up the energy to pursue a new dr. That will be the one. In the back of my mine I’ve thought about that trip and picking up something. Again, thank you.

Wow, I can't believe it, I'm so glad I mentioned it. I used to watch this show called, "Monsters Inside Me". It was very good and very interesting and I think pretty legitimate. If you get a chance to see it you can probably find it somewhere because I don't think it's currently running live. But there were a like a million episodes. I watched it over the years and there was a lot of science behind it it seemed.

Since it take so long to get in to see a doctor nowadays with Covid-19 and lower staff, it would seem wise for you to get your primary care doctor to write a referral and ask if she/he can write it for urgent because of the amount of problems you are having. And then I would stay on top of everything and maybe once a week call the Infectious Disease practice to see if they received your referral yet. Often times for me they will say no and then I will ask them if they can check on it for me with my primary insurance. I also look to see who is a preferred provider and then I look at their bios. I look at where they went to school and especially how long they have been in practice. I tried to find the one who has been in practice the longest and has some good reviews. Have that name address and fax number ready so that when you send a message to your primary care doctor asking for the referrals, include the infectious disease provider's name address phone and fax number and that will make it much easier and expedite the process. If for some reason the infectious disease provider you select does not appear on the referral you can still ask for that provider when you speak to the practice.

I wish you all the best, Sunnyflower

Wow, I can't believe it, I'm so glad I mentioned it. I used to watch this show called, "Monsters Inside Me". It was very good and very interesting and I think pretty legitimate. If you get a chance to see it you can probably find it somewhere because I don't think it's currently running live. But there were a like a million episodes. I watched it over the years and there was a lot of science behind it it seemed.

Since it take so long to get in to see a doctor nowadays with Covid-19 and lower staff, it would seem wise for you to get your primary care doctor to write a referral and ask if she/he can write it for urgent because of the amount of problems you are having. And then I would stay on top of everything and maybe once a week call the Infectious Disease practice to see if they received your referral yet. Often times for me they will say no and then I will ask them if they can check on it for me with my primary insurance. I also look to see who is a preferred provider and then I look at their bios. I look at where they went to school and especially how long they have been in practice. I tried to find the one who has been in practice the longest and has some good reviews. Have that name address and fax number ready so that when you send a message to your primary care doctor asking for the referrals, include the infectious disease provider's name address phone and fax number and that will make it much easier and expedite the process. If for some reason the infectious disease provider you select does not appear on the referral you can still ask for that provider when you speak to the practice.

I wish you all the best, Sunnyflower

@sunnyflower
Wow, Sunny, it's impressive to hear from a pro who knows the real score when it comes to working the system. You've definitely been around the block more than once. You should write a book! Best, Hank

I was just directed to this site as I am new to Mayo Connect. I was diagnosed with erythromelalgia in 2018. It started in 2017, it then became dormant the fall of 2018, but surfaced again this past November 2020 and I have had flare since then. I have not resorted to medications other than aspirin, a topical cream and ice pack but may be looking into other medications after I give it another few months to see if it gets under control again. This still all new to me! I am 74. I have read a lot of comments on erythromelalgia and understand my pain and flare is not as bad as many people face but it is still there. Have any of you had your EM go dormant for awhile? I had that happen before but it has returned after 2.5 years and I met with my doctor to discuss. He is a new doctor to me and had not seen my flare up before. He said he could put me on some medications but so far I've been trying to handle like I did before and had it go dormant. I don't know if I'll be so lucky to have that happen again. The only other meds I'm on are Losartan (100mg) and Simvistatin (20mg).

My hands sting and burn in heat, but my feet are th worse. I have been diagnosed since April 2018 with Erythromelalgia, and also Peripheral Neuropathy. I am taking Gabapentin and CBD oil, but nothing but “cold” helps!

I know. I stand in the bathtub in cold water for a few minutes. Only thing that helps .