Looking for advice - new to EM - Can anyone help

Hi everyone; what a privilege it is to share this with people who are struggling like me with EM; I am so new to this and would welcome your advice. Briefly, this is my synopsis:

Feet became bad in November 2019. Got worse and tried many different treatments and seeking all manner of doctors and professionals to alleviate pain but still no success. Find it painful to walk and feet are red. Recently diagnosed with EM. Affects my hands too and pain spreads up my legs Am trying hard each day but finding it really tough. Am a teacher and I have a family.

Currently taking 100mg Pregabalin (but have recently reduced it) and 40mg Propanalol each days and Mirvaso cream once a day. Main symptoms are: Feet red but a stinging / intense pins n needles pain in both feet - even without shoes. Finding wearing any kind of shoes painful / chill blains in hands / tinnitus in ears. What sort of balance do I need for exercise? Any advice on medications / shoes / socks? Thanks


Great that you have had the courage to reach out. Welcome to the group. Make good use of the excellent search engine on this site, see the little magnifying glass at the top and type in your interest.
If possible swimming seems to be helpful as cool as well as non weight bearing. Hope you find a heated pool !
I wear sandals a lot with as little socks as possible. In New Zealand it is not socially acceptable to wear sandals and socks and my children and grandchildren would probably not let me.
Bottom line, people have been finding mexiletine very helpful. You would need to discuss this with your doctor. My doctor made me have an ECG first.
It strikes me that in lockdown you are in a strong position to try mexiletine. I imagine the pregabalin gives you a bit of brain fog.
God bless !

There’s a lot to get your head around. Before considering mexiletine, your doctor will probably want to see if you have primary or secondary Erythromelalgia. Primary being a genetic problem, secondary being the result of some other condition. The dermnetnz website Erythromelalgia search is useful.

Hi Paul,

Seems you already have your diagnosis so its a step in the right direction, sometimes it can take years to obtain one as it’s a rare condition.

“What sort of balance do I need for exercise? Any advice on medications / shoes / socks?”
Many members report that swimming is a great exercise for EM as there tends to be minimal flaring. As far as medications go, there’s no one size fits all but you’re at least trying 2 of the medications that have shown benefit in some people.

I am attaching a research paper that goes over the many treatment options for EM.
jpr-154462-current-management-strategies-of-pain-in-patients-with-eryth-082918.pdf (394.3 KB)

Just in case you need a second opinion from another doctor who has seen EM, site member MNP mentions: " seeing many specialists in and around the UK, finally seeing the right doctor at King’s College Hospital London (Dr Robert Hadden)"

Also the erythromelalgia association has a physician directory, these are doctors who have at least seen the condition before, seems there’s many options in London.

You have to control your environment. Use fans and cold water.

Hi! I have had erythromelalgia since my earliest memories. I don’t take any medicine directly prescribed for EM, but I’m taking so many Rxs that I’m sure some are helping.

Because I have knee joint problems, swimming isn’t my favorite exercise any more. I use a recumbent bike every day.

When I flare (red hot toes look like swollen, stuffed sausages but my foot is cold or my fingers are swollen, red, and painful) I have to give myself a Time Out. Cooling my red hot toes and/or fingers is #1. For me that means lying down with hands/feet elevated, using a fan blowing on the painful parts and something like Sarna (a lotion with cooling menthol) to bring down the swelling and the pain. It is tempting to bathe the hot extremities in cold water but you need to protect your skin which means using a plastic bag to cover your feet/hands while you keep them in.

Over the more than 65 years that I’ve been dealing with EM, I have found no pain relief from otc drugs and minimal help from opioids. That sounds as hellish as it has been but don’t lose hope. I have had many times when my feet/hands have been hurting but I gradually got better. Peripheral neuropathy helps!

Hi Paul, how are you getting on? Any progress or news on treatments?