Hi everyone. Im Madison. Im 20 y/o and recently in the last 8 months been dealing with EM. The pain some time is so agitating I sometimes get overwhelmed. At first I never knew what was going on. All i knew was that my hands and feet are red, itchy, swollen, and burning. you could see the irritated areas as well. I went to the doctor hopefully trying to figure out what was wrong. Took some test, & nothing!! wow was that a disappointment!! I know it wasnt all in my mind. It is such an agonizing pain to me sometimes i feel like theres no end. I put my feet and hands in ICE cold water and that relieves it a bit but the pain is still there. Before I realized that I had EM. I researched and researched. NOTHING SEEMED TO MAKE SENSE. Until I ran across EM. Now it all makes sense. This group has been a gift already. I know that im not alone. Any tips would be nice. Thank you all.
Sorry to hear you’ve been going through this, Madison. The next challenge is to find a doctor local to you that is knowledgable of EM. Based on where your IP is routing from and using The Erythromelalgia Association’s physician directory, it does look like you may need to drive a significant distance to find a doctor experienced with EM. They show doctors in Raleigh, Chapel Hill (UNC) and Durham (Duke) in their directory.
Hi Madison welcome to the community that most of us would prefer not to be part of. Ha!
I agree with Carter. Find a doctor who is open and willing to see you. Given the rarity of EM, it may not be very easy to find someone close by. If no local “expert” find a doc who is open to learning about it.
Find out if your EM is “primary” or “secondary” to some other treatable condition. Given your age if you are otherwise well it may well be primary. In this case there may be a family history of EM. Then it’s a matter of trialling some of the options mentioned on this forum, from hot foot baths (which I find help) and medications. I get partial relief from pregabalin. Whichever medication you try should be carefully chosen by your doctor and started low and slowly increased if necessary with careful monitoring.
I and many others also find mindfulness meditation (better termed “mind-less” meditation) helps “shift” out of the anxious thoughts that pain can trigger. YouTube has some excellent stuff. Another option for those who are open is to spend a few moments being thankful or grateful for whatever, no matter how small. This will bring one back into the stillness of the “now” moment.
I would recommend the above to anyone in this community.
You may not want to hear my number one tip but it’s to stop using ice and ice cold water, completely, it may seem unbearable but it makes it so much worse in the long run if you continue…
Wow thank you!! what would you recommend ?
I personally use elevation a lot! My feet flare anytime they’re in a down dependent position or when I’m walking so I use a recliner a lot it takes awhile but it’s best to let them cool down on their own. I found if I use ice to cool down a flare that once I’m not using it I have an even worse flare in retaliation, which I’d then have to use ice for again to break and they’d get worse and worse, luckily I’ve broken the cycle and am not constantly flaring as long as I have my feet up