Erythromelalgia Relapse… Am I in hell?

Hi all,

I need some advice. But first, I need to provide some background.


I developed a condition called erythromelalgia (painful, hot, very visible red skin flushing) in 2022 after a cosmetic procedure. Although it primarily affected my face, it did gradually spread to other areas of my body. I showed signs of this “condition” as a child but it quickly dissipated. After my diagnosis, I got pregnant as I was unwilling to put my life on hold. I did develop some additional redness and heat postpartum on new areas of my body but it also wasn’t long after that I accidentally implemented a mind body solution, leading me to almost eradicate the condition (mostly), with the exception of redness and slight heat. My two year recovery came as a result of exposure (taking hot showers, sitting in the sun, etc.) while telling myself it’s all anxiety, I continued to “test” and do these things, perhaps obsessively, over the last several years which made me feel reassured— I could do everything I set out to do! So there I was — moving about in life and obsessing over my next health issue (or several…)


Fast forward to a month ago when I gave birth to my second child. It’s probably important to note that it’s been a tumultuous year for me with unresolved stress and anxiety. I noticed the flushing start to increase only sightly at the end of my pregnancy but it wasn’t until just a few weeks ago that the flushing gradually returned in full force and is now on my ENTIRE body. Yes, I look and feel like a cooked lobster with any change in emotion, exposure to heat or exertion, the works. Even at rest. Love it.


This time around, the technique I used to overcome it the first time is not enough. It’s not working to tell myself this is a product of deeply rooted stress and anxiety/a severely deregulated nervous system while moving forward with normal activities. I’m failing all of my own “tests” that I had previously been passing with virtually no issues. Having just given birth to a new human, I’m feeling extremely defeated and just, frankly, stunned that I’m in this place again, now worse. I’m trying so hard to re-adopt the faith that this is mind-body driven.


While nobody can definitively tell me why it’s back (but maybe because I didn’t get to the root cause of my deregulated nervous system (?) and have continued spiral with health anxiety) and specifically why it’s worse…can someone tell me a story of when pain came back worse but was still able to get it under control?


Additionally, I’ve been re-reading mind-body books like crazy (Alan Gordon, Dan Buglio, Sarno), and I think I’m now experiencing information overload and feeling overwhelmed. For those of you whose pain came back with a vengeance, which strategies were the most helpful (focusing on positive sensations, somatic tracking, etc.)? What’s the one thing you did to get up and out of your relapse?

I would also love to hear any success stories from those of you with skin conditions. Or any conditions — come one, come all!

Thanks for reading if you made it to the end.

 

Hi, @miffybunny, I would love your opinion on this as well if possible as I read that you recovered from EM/CRPS labels.

 

@miffybunny and @TG957 website is Defeat CRPS you’ll find loads of information and hope there!
Sorry you are going through this again but you will overcome it. Being a new Mama is very stressful so give yourself loads of grace. Take a deep breath and know you’ll get to where you want to be again.

 

Thank you very much for responding. That’s really helpful. I will check it out.