Anyone out there with Erythromelalgia?

I don't know how to jump into this discussion. I never heard of Erythromelalgia before today, as referenced in a Neuropathy discussion. I searched high & low for why my feet had turned bright purple/red over the last 18 months & burn like they are on fire. I know I have PN, but my Vascular doc, PCP, Podiatrist, Pain Doc all had no idea about the skin changes. I know there is nothing any of them can do for me, but it helps to be able to, at least, do some research on my own. It's so frustrating & depressing to have a gaggle of doctors just shrug their shoulders and send my on my way. I think I found a name for this misery today, for whatever that's worth.

Heidi, I did find EM.org years ago when I first diagnosed myself with EM. I have been dealing since 2017. Okay, if you are going to contact one of the MD's on the list who supposedly treat EM be sure to ask when you make the appointment if he/she indeed treats EM. I visited a doctor on that site in PA around 2019, and she did not know one thing about EM. I even mentioned to the staff why I wanted an appointment and asked the receptionist to check with either the doctor or her nurse if she had an interest in EM. The receptionist came back to the phone and said, "I guess she does. She is smart and treats anything." That is the best I could get out of her. Anyway, I booked the appointment and waited 5 months to see her. When I showed up with photos during my flareups she wasn't familiar with EM and said she doesn't know why she would show up on the EM site as being proficient in treating EM.
Next - Heidi and others - go to you tube and goggle bob's protocol for EM. It is a desensitation program. Check that out and you will find valuable advice from other sufferers.
Good luck on your search for the life we all had before EM. I'm 6 years in now. Check out you tube!!!

I have had this for just over two years. My neurologist has tried different medications , done an EMG, x-rays, skin biopsy and other tests with no answers yet. I have found that for me a lotion called Silver Shield has helped lessen the burning of my skin. Anyone else tried this lotion ?

My son told me to look into a Homeopathic Dr. they ran some tests and then told me to try this cream. I was skeptical , but tried it and it does lessen the burning sone for me. Not a cure all but does offer me some relief . Let me know if it helps you any.

Good luck👍

Yes we did order it on Amazon . It is Silver Shield made by Natures Subshine. If you need anything else feel free to contact me again . I keep hoping that a cure will be found for all of us.

@erythromelalgiaca I see that you posted the same message twice, thinking that 1 person didn’t receive it. You can send the same message to several people as long as you put the @ symbol in front of each name. Try it!
You’ve been having a difficult time getting the help you need. Have you called GARD, genetic and rare diseases, or NORD, national organization for rare diseases?
https://rarediseases.org/
https://rarediseases.info.nih.gov/
They both have resources to help you and do have the names of doctors. Their phone numbers are on the website. (I have a bad feeling that I may have put the same links above. Sorry!)
Let me know what you find out!

I am guessing the anesthesiologist might suggest lidocaine infusion. They have published a few papers on the use of lidocaine in extreme cases where people can't function at all without their feet and sometimes entire body feeling like it is on fire all the time. However, it did work for those I read about.
Thank you all for your input.
P.S. I do find that every evening I soak my feet in warm water for 20 minutes. They get very red while doing it, but once out of the water I moisturize them and settle in my recliner to watch some t.v. Since I cannot tolerate a closed shoe or sneaker, I live in sandals year round and my feet take a beating. I live in NJ. Winters get cold, but my feet LOVE it. It is my happiest and most functional time of the year!!! My dog loves it too because he gets daily 3 mile walks in winter. Can't say the same for warmer weather. Oh, and get this one - One doctor I visited suggested I just move to Alaska!! I couldn't believe he said that.
Thanks to everyone for their input!!

This has a lot of useful information that everyone has shared just curious was anyone given sulfamethoxazole trimethoprim prior to getting the EM symptoms? I had a hysterectomy and got a bad infection and was given this medicine and right after taking it I started getting the burning feeling in my feet and then swelling and redness followed by a purple tint it has since started moving to my hands I have been in and out of Dr's the past 6 months and most of them just brush me off. I recently seen a neurologist at Mayo he said he believes I have EM and wants me to see a dermatologist but that is a 2 month wait I cam across a video from Mayo Clinic dermatologist Mark Davis posted in Jan of 23 saying Mayo sees a lot of these cases and have many doctors to treat it yet I am told only 1 doctor at mayo can so I have to wait 2 months to see them very frustrating so I am looking for alternative doctors anywhere to go to or anything that will help me get back to somewhat of a normal life. I have no other illnesses and have hot had any health problems in the past this all started right after my hysterectomy and when I was given the medicine for the infection so even though I show all the signs I don't know if I really have this or a long term side effect from something they did or gave me

I have EM, not primary but assumed to be connected to my Peripheral Neuropathy.
I've never been to Mayo. I'm on gabapentin and B12 shots since it was discovered I was deficit.
It has helped but I still have flares. My face, ears and hands are the worst, I have Raynauds too.
I have be careful with showers, my diet.. like caffeine and sugar, wearing closed shoes, being in the sun, general temperature and humidity.
One medicine my neurologist said treats EM is Amitriptyline. Maybe that's been mentioned. I carry a handheld fan with me if I leave the house. Keep popsicles/frozen fruit cup, reusable ice packs and a pitcher of cold water to keep me cool. Always trying to prevent the flair, or at least downgrade it.
Cbd salves have helped with pain.
I feel for you, it's terrible. Anywhere I live there is a window AC permanently parked in my bedroom. Sleeping the worst, my body so finicky. I find a small wrapped ice pack under my neck helps. But I sleep at morgue temperatures so I keep an electric throw at my feet cause I can't wear socks to bed. Then that can wake me up, but it's always a toss up with EM.