General Update

Just thought I’d provide an update as it has been quite slow here lately. I am symptom free once again and fully recovered from the ciprofloxacin induced flare up. I have been tapering down my cyproheptadine and mexiletine slowly and have been tolerating it extremely well. I feel bad posting on my improvement here but I am not done with EM. I am currently in the process of applying for a research grant to put together a proper scientific paper on erythromelalgia with the multiple mechanisms of action and potential treatment options for the suspected cause. I am hoping this paper will provide physicians with a guide on not only what EM is but the complexity of the different causes and how to properly attack the condition in a patient specific stepwise manor. Currently, I intend on specializing in physical medicine and rehabilitation with a focus on pain after obtaining my medical degree in 2023 and plan on treating EM upon completing my residency so I will be on here for the long haul. Hope everyone is doing well.


Don’t feel bad. I love good news! Your story is inspiring and I think it’s fantastic you want to help raise awareness of EM in the medical community. I’m the moderator here and don’t even have EM anymore. I stick around because I figure it’s good for morale to hear the condition can sometimes resolve.


I’m always happy to hear positive updates! Thanks for the work you’re doing with EM research too. I’m in the process of figuring out what (if anything) sparked a sudden, progressive case of EM out of nowhere about 7 months ago. A couple of my doctors have been working together on this and even though we haven’t found answers yet, it’s so helpful mentally to have doctors who are willing to do some digging on my behalf. I’m very thankful for researchers and physicians who care!


Thank you for sharing your great news…on many fronts. EM is very difficult to diagnosis…and then difficult to treat…as not one medication fits all.
Please continue to share…as I’m sure you will help many people. All the best.


I am so thankful to hear your news. We certainly need an advocate. I also want to thank you for the information I received from your journey. I had received no help until you posted the article about Dr. Cohen’s findings. The cyproheptadine, magnesium and aspirin made all the difference for me.

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Please study the wonderful results many of us doing Bob’s protocol have found! I am 85% healed after struggling for 5 years with burning feet! I stopped all cooling and I soak in very warm water every day. Go to “Fighting Fire with Fire” on Facebook to learn more and to hear many similar stories of real healing!

I do believe that warm water soaks and stopping all cooling has produced much healing for me and my burning feet! The warm water increases blood circulation and that takes pressure off my nerves. All the cooling I did for five years decreased blood circulation and probably further damaged my hyper sensitive nerves. And, even if I have to soak in warm water once a days for the rest of my life, it is far less cumbersome than using ice packs and cold water and fans around the clock!

I’m glad! I withdrew my post a few minutes after writing it because I thought it struck the wrong tone and could seem overly critical. It was late at night. My apologies, @Marymcw1.

@CarterDK Thank you so much. It has definitely developed into a driving force during career in medicine. It is easy to veer away from communities like these when things turn around so I am grateful you have stuck around. Hopefully I can get two papers published in the next year and a half or so before I start practicing.

@herdfan I am so glad that you were able to benefit from his work. He was also pivotal in my EM recovery, although, personal research into the TRPV1 desensitization of capsaicin cream is what ultimately did it for me.

@Marymcw1 It is wonderful to hear that you are doing better! That is definitely something that I could look into in a few years as a clinical based study, only issue is that it is rather subjective for critical literature and meta-analysis studies that I’m working on right now. BUT, it is readily available for anyone to try so there wouldn’t be any hoops to jump through for patients in terms of having access to the treatment plan. I am all for natural and conservative treatments when they are available and efficacious and heat desensitization definitely seems to work for quite a few individuals.