Anyone out there with Erythromelalgia?

@jlander I will try those with a diffuser but before I do I will check if they are safe for pets. The aroma from some oils can be toxic to our animal friends. I will also try putting a few drops of essential oils in a roller bottle using a carrier oil. It would be similar to your rubbing oils for direct skin contact. I have a few recipes I can try. Thank you for the information. Toni

I am new to disease and pretty desperate. I understand there is no cure - only management, and saw a video by dr. Davis who mentioned topical treatment - I am in the Houston area and it is pretty desolate here, despite our large medical center. I am not a good candidate for the Gabanpentins and Lyricas of the world but probably could tolerate them in topical form. Can anybody suggest anything ?

Hello @revisl, Welcome to Mayo Clinic Connect. I don't have any experience with Erythromelalgia but I found a few articles you might find helpful until other members can offer some suggestions for you.

The newsletter for members of The Erythromelalgia Association FootSteps online:
-- Mayo pain relief gel now creamy: https://erythromelalgia.org/wp-content/uploads/2017/09/TEA_Footsteps_Jun2014_FNL_web-3.pdf

Current pain management strategies for patients with erythromelalgia: a critical review:
-- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6121769/

Have you tried any topicals or found anything that provides some relief for you?

Hi, I have found that taking an aspirin, once or twice a day, and using an over-the-counter cream called Topricin, which I purchase at Walgreens, helps me. When my feet are really burning, I put them on an ice pack for a minute or two at a time, alternating off and on pack so as not to get too uncomfortably cold. I also have used the oil, Frankincense & Myrrh.

Hi @johnbishop, I have nightly bouts of very hot, dry and burning/tingling feet and ankles, aggravated when my feet are in a wam environment (e.g. under the covers with a mattress heater on). Also, I've been EMG/NCS diagnosed with axonal motor sensory nephropathy. At first I suspected erythromelalgia, but my neurologist (and many other patients on Facebook PN groups) indicate that these symptoms can also be the result of small fiber peripheral nephropathy itself. Has that been your experience?

@terryzrust, I have not experienced burning feet and ankles with my neuropathy but there are members who share those symptoms and have posted here:

Small Fiber Neuropathy burning?: https://connect.mayoclinic.org/discussion/small-fiber-neuropathy-burning/

This is an older discussion but if you sort the posts by Newest to Oldest at the top right side of the discussion just below the description you can see that members have posted in 2020.
- Burning Feet syndrome: https://connect.mayoclinic.org/discussion/burning-feet-syndrome/?commentsorderby=DESC#chv4-comment-stream-header

Revis-
Thanks for the posting.
The 2 ideas below help some sufferers:
Transcutaneous electrical nerve stimulation
Transcutaneous electrical nerve stimulation is the use of electric current produced by a device to stimulate the nerves for therapeutic purposes. TENS, by definition, covers the complete range of transcutaneously applied currents used for nerve excitation although the term is often used with a more restrictive intent, namely to describe the kind of pulses produced by portable stimulators used to reduce pain.
Capsaicin works by decreasing a certain natural substance in your body (substance P) that helps pass pain signals to the brain. How to use Capsaicin Cream- Use this medication on the skin only.
I also found that extract from lions mane mushrooms decreased my pain and tingling in my left leg. I took the nutrient for 90 days and also lost Reyes Syndrome of cold hands and feet as a bonus. It works for me
Best wishes on your journey.
Dave

Hi, I'm wondering if anyone with erythromelalgia has had the Covid vaccine and if its ok to get with this condition. Considering the J&J version since only have to get it once. This is for my mom who is 80.

Hello @kwb and welcome to Mayo Clinic Connect. I see you are seeking some feedback for your mother who has erythromelalgia.

Members such as @revisl @jlander @drolker have recently participated in this discussion and may have information they can share if they have had a COVID vaccine.

Is your mom expressing interest in the vaccine?

@kwb - Good morning and welcome to Connect. It must be very difficult to see your mom in pain. So far, with few exceptions, everyone has been encouraged to have the vaccines offered as protection for COVID-19. The possible side effects far outweigh the side effects of the vaccine. But of course, you, your mom, and your mom's doctor will have to decide this. Erythromelalgia is a rare neurological disease and your mom and others with this are more susceptible to other illnesses and diseases.