Anyone out there with Erythromelalgia?

I use pentoxifylline 400mg 3x/day in my patients with this and low dose Naltrexone (2-4mg) nightly.

My 21 year old son was diagnosed with Primary EM about 8 months ago. He has red feet, hands, forearms, face, knees and it's spreading and his hands are almost purple if not red. Fortunately, he does not have the pain associated with EM. However, this disease has severely affected his mental state and he says he no longer wants to live. He had no prior conditions, etc. He has taken aspirin, Gabapentin, Atenolol, Aspirin and is currently taking Topiramate but nothing has worked. He has also tried acupuncture. Has anyone taken any other medication or tried anything else that has helped them? I feel like his condition is more than just EM although he has had every blood test and was told there is nothing underlying. There has to be something that works and I'm desperate to find it.

I’m new to mayo connect but I wanted to share a brief overview of my experience. My onset was as an adult not hereditary. I was working in the medical field in an area where I saw patients that experienced this condition. I felt so bad for them! Then when I experienced my episode I knew I needed a specialist who treated this rare disease. Last year my symptoms now include Raynauds during the winter months. It happens indoors because I keep the house temperature on the cooler side but when I go outside it feels like frostbite within minutes. So sad because I love being outside year round. The treatment I use is the cream that has four ingredients added to calm the burning painful sensation. My worst time is at night. Daytime is episodic depending on my activity, stress and what I’m wearing for socks and shoes.

I have EM symptoms and get flared in hands and feet. Any environmental temp above 72-73 I feel bad all over with general ill feeling and headaches. I’m cold when I should be warm and hot when others are comfortable.
I use essential oils mentioned in these posts and use an anxiety drug when in a big flare. By primary doctor recognizes EM and willing to try things. Gabapentin and antidepressants didn’t work and had side effects.
Just trying to live a life

Emphasize with all who suffer this

I too soak daily with warm water about 100 degrees. Seems counterintuitive but I think helps desensitize to the heat of a flare. Also feels good and is relaxing making me think I’m doing something positive without drugs.

The warm water softens my feet and heels if nothing else. I cannot wear closed shoes. As a result, my heels are prone to drying out and cracking. The warm water keeps them soft. I do the soak and apply the lotion in the evening before going to bed.

Thanks. We all try things and these postings help us know what others are trying!

I heard Mayo has an Erythromelalgia clinic. Perhaps it could help answer many of our EM questions.

@chme The best way to find out if there is a clinic is to do a little research. Scroll down this page to the blue section and click on Mayo Clinic and then check out the different areas. Can you do some research this weekend? Let us know what you learn!

@becsbuddy and @chme, There is an Erythromelalgia clinic in Minnesota. Here's the page where you can learn more and make an appointment.

--- Erythromelalgia Clinic in Minnesota: https://www.mayoclinic.org/departments-centers/erythromelalgia-clinic-in-minnesota/overview/ovc-20421220