• Alan has completed the new Pain Recovery Program. To read or share it, use this updated link: https://www.tmswiki.org/forum/painrecovery/
  • Welcome to the new TMS Wiki server! Things aren't finished yet: email is not set up, so notification and password-reset emails don't go out, and new registrations are paused until email is installed. Details and updates are in this thread (click here). Locked out? Email tmswikisignups@gmail.com from the address where you receive TMS Wiki notifications.

Erythromelalgia Relapse… Am I in hell?

H

hmb

New Member
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.
 
Last edited:
@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.
 
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!
 
Hi again, @hmb and welcome. That's a really good intro, and I'll certainly echo the reassurance offered by @Cactusflower and @miffybunny. There's every reason to assume that you can recover from this setback - which is the word you can apply when you are referring to your current symptoms, as upsetting as they are.
hmb said:
(but maybe because I didn’t get to the root cause of my deregulated nervous system (?)
Click to expand...
This is what I was already thinking before you said it yourself. A lot of people over the decades have successfully used TMS knowledge and self talk to overcome their stress-based symptoms, but depending upon a lot of different variables, many find themselves in your position a few or more years (sometimes decades) further on, due to a combination of getting older, unresolved repression, new personal stressors, and perhaps a certain amount of existential stress stress from the outside world. It's almost always a combination.

All that being said, it's probably time for you to do some structured self-examination and develop tools for future setbacks. We always start by recommending our Structured Educational Program on the main TMSWiki.org, because it's free of cost and of any kind of registration requirements. It's set up in "days" but as a busy parent you can do just a few days a week, and spend a little time each day reading at least one post on the Success Stories subforum and exploring other resources as you learn about them. One of my favorites for inspiration and compassion is the podcast The Cure For Chronic Pain with Nicole Sachs, who worked with Dr Sarno before she had her own wildly successful psychotherapy practice devoted to TMS recovery. Her own recovery story is amazing, including going on to have three children after being informed in her twenties that doing so would either be impossible or disable her forever due to her diagnosis of severe spondylolithesis. Her podcast page has a search feature where you can put in a symptom and find episodes you can recovery stories you can relate to.

You can do this, and we're here to support you!
 
@JanAtheCPA, @miffybunny, @Cactusflower,
Huge thank you to each of you for responding and even reading my story; I'm very grateful. I really appreciate the encouragement as, again, I'm feeling lost this time around. I completely agree with unresolved emotional issues likely being the culprit (I didn't have a difficult childhood or anything like that but I do think that, despite being a pretty fully functioning human and mom, I have a severe lack of independence/ability to feel safe with and inside myself which I've carried with me throughout my life. I recognize this MUST change for lasting results re: TMS, and I'm actually started EDMR therapy tomorrow. Hopefully this will be helpful. Admittedly, I don't know much about it). But unlike last time, I'm struggling majorly with belief which is unfortunate considering I need that to heal. Maybe one of you can help me unpack my two roadblocks. OR perhaps there's someone else in the community you'd recommend to weigh in.
My brain is telling me, "OK, look. You almost had yourself in "remission" when this was more contained but not fully. How on earth do you expect a similar, comparable, or greater recovery this time around?" What's keeping me even more stumped is just...the visibility of the condition (this is not at all to discredit pain that's not visible).
Something else that's really eating at me is this: Dan Buglio interviewed a woman who had a surgery from some sort of structural change (perhaps a vein being blocked off). She needed it to correct this very visible issue (of course, not visible outside of imaging or externally on her body) but in her interview she mentioned needing this as the damage from her stress/TMS physically caused this structural change. What if I'm at that point? What if my additional and visible flushing is a sign that my stress has caused irreversible vascular changes? At any rate, I'm sure you can gather how lacking my belief is right now. I'm hopeful I will come across a success story that I resonate with, particularly a "setback" that will get me back on track with the right mindset. Last time my recovery worked great with solid belief + a no BS approach ("no, I'm not going there with this -- it's caused by my mind. I'm doing X activity and I don't care.") but maybe I need a softer approach this time once the mindset is in place.
Oh, and @JanAtheCPA, thank you for sharing educational program. I will start that ASAP.
 
Last edited:
@hmb,

Before you embark on the emotional piece (which is key...especially re: feeling trapped), we need to dispel the false beliefs you have about "remission" and the function of symptoms. Remission implies a pathology or something that could come back. It's a disempowering misunderstanding of what is really going on. In order to feel safe in your body, you have to understand that these symptoms are not confirmation that your'e somehow damaged and there will always be this specter of the bogeyman coming back, but rather they are indicators (info., messengers) that something is out of wack in your life and within yourself which must be addressed. They are you telling you about yourself. They are not some kind of external terroristic entity. By losing the fear of symptoms and viewing them as a message (rather than something of which you will always be at the mercy), they lose their power over you. As humans we will always be subject to stressors and physical responses to stressors but that doesn't mean it will become "chronic". It's a transitory state that nudges you to reassess and make changes.
 
hmb said:
"OK, look. You almost had yourself in "remission" when this was more contained but not fully. How on earth do you expect a similar, comparable, or greater recovery this time around?"
Click to expand...
I would look at this thought and think the complete opposite- "I've healed my other symptoms, and I can heal from this too."

That being said I was perusing the success stories yesterday for just some tips or encouragement. I did see one for erythromelalgia. The easiest way to find it is to just use the search bar in the forum. But remember- TMS has many different symptoms, you don't have to match with someone's symptoms in order see some encouragement to heal. Any of the success stories would work. But it might be beneficial to see that people have healed from erythromelalgia and you can too.

I'm glad you are starting the SEP. Be patient with yourself and don't try to do too much. Just let the information soak in and be honest in your journaling.
 
miffybunny said:
@hmb,

Before you embark on the emotional piece (which is key...especially re: feeling trapped), we need to dispel the false beliefs you have about "remission" and the function of symptoms. Remission implies a pathology or something that could come back. It's a disempowering misunderstanding of what is really going on. In order to feel safe in your body, you have to understand that these symptoms are not confirmation that your'e somehow damaged and there will always be this specter of the bogeyman coming back, but rather they are indicators (info., messengers) that something is out of wack in your life and within yourself which must be addressed. They are you telling you about yourself. They are not some kind of external terroristic entity. By losing the fear of symptoms and viewing them as a message (rather than something of which you will always be at the mercy), they lose their power over you. As humans we will always be subject to stressors and physical responses to stressors but that doesn't mean it will become "chronic". It's a transitory state that nudges you to reassess and make changes.
Click to expand...
TY for this response. You’re completely right.
 
@hmb Seeking reassurance is typical of TMS. You're brain wants to convince you that you are different and that you may be the exception even when you logical can see that you have TMS symptoms. Be prepared that when you the do the SEP that you may find that your brain wants to resist it. You'll find excuses to not have time to do it or in my case, my brain did not want to journal and I had a hard time making myself do it. Once you get past the resistance you will learn so much about yourself! It's a great program!
hmb said:
I’m not sure that’ll even bring me the peace I need.
Click to expand...
Yes! It's hard to realize that no one can give you an absolute answer with your symptoms. But you are in control now (not doctors) and can give yourself peace. Even if you only believe about 60%, you can still do the work in the SEP and start to learn more about yourself!
 
You already got excellent advice here, so i will add two small cents. First, set your expectations for baby steps. Second, look for every tiny improvement or positive change. The ultimate healer is you, and your healing power is much stronger than you think !
 
miffybunny said:
that these symptoms are not confirmation that your'e somehow damaged and there will always be this specter of the bogeyman coming back, but rather they are indicators (info., messengers) that something is out of wack in your life and within yourself which must be addressed. They are you telling you about yourself. They are not some kind of external terroristic entity
Click to expand...
Love this!
 
hmb said:
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.
Click to expand...

how are you doing today? Are you doing better?
 
Hannah7 said:
how are you doing today? Are you doing better?
Click to expand...
Hi, so, physically I am not better, I have gradually worsened. However, it has taken me 5 full months to land on the root of my sickness, my repressed anger which I now know I've been resisting my entire adult life.

I have, partly, denied the idea of TMS as my root for varying reasons, one of those being that my label is not really accepted in the mind-body space as something that can be cured with the mind (since it's physically visible); I even had a prominent mind-body focused Dr. reiterate this to me (which set me back probably 3 months out of the 5). But since starting with a GOOD therapist who has advanced training in PRT, I'm really, and finally, starting to piece together the etiology of this for me and I believe healing is on its way.
 
Hannah7 said:
What is PRT? Mine is physically visible as well. It’s hard to believe it’s mind body but I know when I’m stressed it gets worse.
Click to expand...
Pain Reprocessing Therapy by Alan Gordon. He has a book called The Way Out. Start there if you haven't already. If you're here on this forum it's unlikely it's by chance. Sounds cheesy but keep looking within -- the mind and body are intrinsically connected.
 
Hannah7 said:
What is PRT? Mine is physically visible as well. It’s hard to believe it’s mind body but I know when I’m stressed it gets worse.
Click to expand...

Hi Hannah,

I just wanted to say to that please don't let physical visibility necessarily get in the way (I'm not saying it definitely is TMS or not as I don't know your situation). Skin conditions such as hives for example are very commonly TMS and that's obviously super visible. It is interesting as a society (and I felt the same way you do) we acknowledge that emotions can cause real physical changes in the short term (blushing, crying etc), but once it sticks around for longer we have a hard time believing that emotions could be the cause.

The fact that when you're stressed it gets worse is a great sign of TMS! Hopefully the other evidence will give you confidence to make an initial decision on TMS one way or the other :) Assuming you are commenting because you also have erythromelalgia (and for everyone else's benefit), I just wanted to share what the experts (including Dr Schubiner) say about it in the diagnostic guide:

"This condition can be triggered by a variety of causes but stress can be a contributing factor in some patients so an assessment for PPD (which is TMS, same thing) is reasonable".

I take that to mean if other avenues of recovery (through the medical system) have been followed to know avail (and all the relevant tests have been conducted), then TMS should be strongly considered. This is especially the case if there's a clear link between symptoms and stress (as there seems to be in your case). That's just my personal commentary and that isn't advice, but hopefully that helps :).

@hmb it's disappointing and a bit confusing that you were told that by someone in the mindbody space given the consensus by the experts which I just shared. I am glad you feel on the right track now :)
 
You must log in or register to reply here.
Back
Top