I have been battling with EM in my feet for 10 years. I have been bedridden since 2019. I am unable to stand or walk. When using a wheelchair I sit with my feet extended because when they are in a downward posistion they flare terribly. I take gabapentin 300mg 3X daily. I take compounded Ketamine cream at night.I am allergic to Aspirin, Tylenol, NSAIDS. That limits some of the meds I can take. I recently tried the new non-opioid pain medication Journavx. I experienced side effects which were not tolerable and did not see any appreciable improvement. I use icy cold wet wraps to cool down my feet but at night I am changing them every 5 minutes because the pain is so intense. Over the last few weeks the EM has spread up my legs to my knees. I have also have flaring in my face that results in very painful eye aches and head aches. Has anyone seen this kind of spread happening so quickly? All of the doctors that I have seen through the years seem to know little or nothing about EM including my current pain doctor. Does anyone have any suggestions of medications that might help me? I have tried many things in the past including Amitriptyline cream, lidocaine cream, misoprostol, and others that I can’t recall. Most of these were not beneficial. The amitriptyline cream provided some relief but it raised my eye pressure and I could not continue using it. Any and all suggestions are appreciated.
I recently joined a FB group called “Erythromelalgia - Fighting Fire with Fire”. There is very good information for others who live with this terrible disease like you and my husband. He about to try something called Bob’s Protocol. It’s basically, like the group name indicates, fighting fire with fire. Check out the group. They explain the protocol very well, and you can read comments from others who have tried it and watch videos from the administrator who also suffered with this disease, but now has it under control. I wish you luck and God’s blessings.
Go to the vitamin store and ask for 600 mg alpha lipoic acid take 1200-1800mg with food and big glass of water if u dont it will cause some heart burn.wait until it kicks in and u should see 40-50% less pain also look at what else this stuff does as well.let me know if it helps u
It sounds like you’ve found something that’s really helping.
As with any ways to manage this, definitely do your research and talk to your doctor about any supplements before trying them.
Sharon from Modsupport
I had it start in my feet in January 2023. By November 2024, it was in my hands. December 2024 in my face. The only 2 things that help me (a very small bit) right now are lyrica and low dose naltrexone. Alpha lipoic acid did help me, however it tanked my blood sugar and I was nearly hospitalized, so definitely, absolutely consult with a doctor if you want to start taking that. Journavx didn’t help me either. I’m mostly housebound because I have both raynauds and EM, and I have pretty severe skin damage (chilblains, related to the raynauds) from wild temperature swings back and forth and it’s very, very difficult to mitigate if I’m out and about. On Wednesday, I’m doing a spinal cord stimulator trial. My pain doctor thinks it will help me, and it’s my very last hope. I don’t know if any of that is helpful, but there it is.
Try to get a prescription for valium and use it sparingly, it does help with nerve pain. It’s the only thing that helps me.