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Which advice would you give to someone who has just been diagnosed with Erythromelalgia?
See some advice from people with experience in Erythromelalgia to people who have just been diagnosed with Erythromelalgia
If someone had told me which medication regimens worked and what foods to avoid and the best way to combat a flare up when it happens those would have helped me significantly.
Posted Sep 16, 2017 by Jeff 3050
Look up materials on neural plasticity, the work of Moskowitz and Golden, go to the Erythromelalgia Warrior site, find support, look into cooling products on Amazon, and stay positive as it affects the brain.
Posted Dec 27, 2017 by mleaver 2500
Accept you might struggle with things that other people will not. Don't be afraid to ask for help.
Posted Apr 4, 2018 by Alys 2500
I would not have waited to get help for so long. Mine would have been reversible if someone would have listened early on. I would have them try and figure out why they have EM. I would have found a support group sooner too. I waited years before I did that.
Posted Jan 18, 2021 by Kathy Vanicek 2500
SKIP CLEVELAND CLINIC. THEYRE HORRIBLE. Check out Neil Stuart Prose at duke. He’s been kind. If your EM is triggered by exercise avoid both Mayo and Cleveland pain clinics. Start looking for mobility aids if it’s in your feet.
Posted Aug 14, 2021 by saguaros 3000
