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.

 

Hi @hmb ,

While you've been down this road before, and you know exactly what is going on, this uptick/reappearance of old symptoms is directly linked to recent emotional upheaval and inner emotional conflicts. Recognize what those emotions were, that you were repressing (probably because you were in survival mode and there was no time to relate to them) and then decide what adjustments are needed in your life and within yourself , in order to feel settled, aligned, and at peace. By doing this, you will be receiving the communication of the symptoms and handling your business so that your body doesn't have to do it for you. That means self compassion and making the necessary changes in your life to have a better relationship with yourself, with others, and your body. When we do that, symptoms are no longer needed as messengers. Some examples could be: setting boundaries, getting help with your kids, taking a little time for yourself every day, not comparing yourself to others, not allowing anyone to mistreat you, letting things go, asserting yourself, saying no, injecting fun or relaxation into your days, changing the way you talk to yourself, allowing yourself to grieve things that were never properly mourned etc etc. You have to be honest with yourself about these things and not fall into the traps of self doubt and/or focusing on symptoms. Hope that helps!