Terrified of erythromelalgia-like symptoms

This lovely person was my tms coach. Rebecca uses Somatics as her main tool, here’s an orienting practice, others call it grounding.
She taught me to use this both before and after meditation.


Another excellent practice for calming via the vagus nerve I learned from Dani Fagan. Lay on your back. Take a few nice breaths, slow exhales. Now turn both eyes to a spot on the ceiling at 9 o’clock: slight peripheral vision to the left. Count a slow 60 seconds, then glide eyes to 3 o’clock to the right for 60 seconds, then center for another 60. Slowing down is key. You may yawn, want to close eyes, eyes quiver and all sorts of funny things you’ll notice as you access the nervous system. It’s fun !

 

Finished the Structured Educational Program today. Symptoms still ongoing (and parallel to this work, I am doing some mild physical investigation/treatment to try help it because I'm an "everything and the kitchen sink" type) and haven't changed much, but I definitely feel freer of anxiety and obsession about it all than I was. Next I'm going to do Alan Gordon's Pain Recovery Program, because I find his way of speaking about these issues very helpful.

 

Struggling a lot with the emotional side of all this right now. I feel an intense need to resolve these issues, and I know that pressure is likely part of the issue. Alan Gordon talks a lot about the energy with which you approach healing being as important as any techniques you use, and I think that's a fair point.

Unfortunately, I've just really began to feel doubt that there isn't a physical root to all this. I haven't had any proper investigation yet, but my blood tests did show a deficiency that could reasonably cause neuropathy... and I can't get it out of my head that that's my problem. I was so hoping to kick this issue before needing to dig further into potential causes, but it's been two months and I don't want it to become three, or four, or five without having found a glimmer of hope.

I am still less consumed by this than I was originally, but worrying about it is still like 80% of my day. And I can't tell what's symptom imperative or "progression" and what's pure imagination...

 

Still pretty heavily anxious, but juuust about coming around the corner on it. Symptom imperative has really started in the last few days though, or so I tell myself... it's hard not to just think the physical issue I fear is getting worse. But basically, I've started to get lots of neuropathic sensations in my feet and up my legs. Not excruciating or anything, but distracting, and making me worried about small fiber neuropathy.

I'm not quite done with the physical investigations for all this I'll admit - my bloods came back with low folate and I have a sibling with pernicious anemia, so I am a LITTLE suspicious I might not be using the b-12 in my body correctly, so I want to get blood tests done for it. I'm having trouble accepting that this is definitely *just* a mindbody thing because I'm afraid of being wrong in that acceptance. I believe that TMS can cause my symptoms, but I'm afraid to assume that that's the case for me because if I'm wrong... then I worsen, and I feel like an idiot, and it'd really knock me for a loop. So while I feel partially hypocritical to still be running round the medical carousel, I'm doing my best with the mindbody work between appointments at least.

If anyone can speak on that topic, the belief in TMS but doubt of how it applies to you (and the fear of being wrong, and getting sicker!) I'd be interested to hear your thoughts.

 

The only reason I've shied away from his work is because I do BELIEVE it, but I don't think he really discusses recovery from those long term effects... Does he? Maybe I'm wrong, feel free to correct me, but I thought his work was moreso educational on the effects of stress and trauma vs. how to actually treat that and heal your nervous system. Basically, he'd be more inspiration for doing the work (since it's scary and makes you fear the consequences) than information on "the work" itself... Right?

 

Still in it, and in some ways worse. I've been (actually) sick for a few weeks now and on antibiotics, which I know have cognitive effects and can exacerbate currently running issues, but the constant, vague sense of having hot hands and feet in everything I do is really stressing me out. I feel a bit stuck because I've kind of journalled my past to a point of having run out of things to write about; I don't know how to get out from under this when it's relatively impossible to actually rule this fear out with testing. There's no single doctor to visit, no scan to run... I've gotten blood tests, they're normal, but you could still just be told it's "idiopathic" and left to fend for yourself with it, so I can't get any medical reassurance besides from folks here. I had a brief email exchange with Howard Schubiner where he said he believes EM can be TMS and suggested I use his book, so that might be my next step, but... it feels like until the symptoms just evaporate, I won't be able to imagine that they can. But I also know I need to believe it's possible before that will happen. I feel trapped, and that terrifies me.

 

Sometimes the redness and heat come and they don't hurt, or hurt less, and then other nights like now they hit harder and hurt more. I was stressed today, and anxious, and I've been sick for a few weeks with a throat infection, and I know it can all make TMS worse. But sometimes I feel like I'm deluding myself about it, that this IS being caused by something physical, and then that worry gets even more intense because I fret about what this is going to do to my life. I wish it would go; and more to the point, that it never came.

 

Hey @tag24
Congrats on taking a step towards your wellness by contacting Dr. Schubiner.
His advice is good. Start with a guide, like his book and do a little every day. Be consistent, and don’t worry so much about the doubtful thoughts. You are noting that your states of illness or stress might be contributing to your symptoms. That’s a great step.
An evidence sheet is very helpful. When you sense that an event, state of mind or emotion has contributed to either an increased OR decreased sense of symptoms, write it down with the date. This can be very helpful in many ways. Don’t go into any stories, keep it factual. “I went for a coffee with my pal James and never felt a symptom.. until we walked out and I thought about my foot ( or going home..), then I sensed pain”. “When I’m hanging out with Janice my hands get red”. Dr. Schubiner’s book will eventually help you tie these things together, but could be a small start to doing the work and gaining belief.
Can you be kind, and reduce your self pressure about the belief? Understanding that our emotions, thoughts and feelings can affect anything: illnesses, tms, structural issues. Just start by working through the book. No expectations, just an open mind and heart to the possibilities.
His free short meditations included with the book are so soothing too.

The only leap right now is ordering the book and starting.

 

I've got the book, and I'll start working on it. This will be my day 1 of it. I don't know what to do if this doesn't work

 

Slowly you must really work on your mindset. “I don’t know whatI”’m do if this does not work” is once again a LOT of self pressure. Understand that the book is going to teach you the skills to heal, and all you need to do is just be there with an open heart and mind, to do the lessons inside.
Good luck today!

 

Yeah, thank you. I know it's the wrong way to go about it, I'm just struggling a lot to believe it's TMS right now so there's a ton of fear and anxiety. I tick a lot of the boxes, but not others, and it's such an "extreme" manifestation of stress illness that it's hard for me to shake these doubts. I've done the reading, I know the theories, I've been trying to do the work, but it's sticky and hard and I've got a trip next month I'm worried about this hot-red-foot business interfering with. I hope someday I look back on this and see how ridiculous I was to worry like I did, but...

 

Been a while since I updated. Unfortunately still in it. Not much better, not much worse. I'm practicing Journalspeak atm and definitely feeling a lot more in touch with my emotions, but bad days still come and I struggle to cope when they do. The symptoms themselves are also no less frequent unfortunately. I'm seeing my first actual vascular doctor (no disrespect to GPs, I literally just mean this is my first non general practitioner) in a few weeks so hopeful I find resolution to this generally, whatever the source. Staying optimistic is really hard.

 

I had EM like symptoms when everything hit the fan in Feb 2016. Burning pain in the hands and feet, they would flush and get red (but more of a Bier's Spots than traditional EM, patchy red, which actually isn't all that uncommon). Pain was unbearable at times, I thought I was going crazy. I eventually realized it was related to stress management because I broke down and smoked a cigarette 8 months after it occurred, and it vanished as if never were, though only for an hour or so.

Eventually it went away, a slow receding across 2020 and mostly gone by the fall of 2021. I still get a sensation like it very rarely, almost always just in the left hand. Of course, other symptoms popped up as it was fading, and continue to percolate as I work on my past traumas and do the work. I will say that googling it all the time in 2016-2017 was a maddening experience and really showcased how crazy chronic pain can effect us & all of the "solutions" out there, usually for a big $. This forum (and anxietycentre.com) really helped me put it into context, in part because their information is free and not some grifter or New Age scheme.

 

Thank you for this. I'm still dealing with it pretty much same as ever, but it's always good to know that someone who dealt with symptoms like this had them pass. Still trying to find a balance of TMS approaches that works for me. I'm not sure which you're saying isn't all that uncommon; Bier's Spots, or "traditional" patchy red EM? Surprised if the latter is common, but you never know!

 

Updating because I said I would and because, eventually, some part of me believes this will come to an end and this will be an interesting log of my ups and downs with it: so far, much the same. The vascular doctor was no help but I am being referred to a rheumatologist to check for, I assume, a battery of autoimmune and endocrinological issues that might drive this. I oscillate between periods of high anxiety and fixation and downtime of not thinking about it all; I'm just out of about 3 weeks where the symptoms barely crossed my mind, even as they still occurred at the same intensity as usual. I'm following Journalspeak atm and just finished reading The Divided Mind. Still trying.

 

Is it strange to get really rapid extinction bursts? I've been pretty anxious about my symptoms again so I spent all yesterday listening to and absorbing success stories + today, read a book cover to cover that was coauthored by Schubiner and a few other docs, so ive been very tms minded lately. But just tonight, I had a flare of more intense pain than usual (maybe my worst ever) and strong discomfort. Dealing with it now in bed lol.

Definitely seems like extinction burst/symptom imperative, right? Or at least connected to the reading and listening? It's bizarre because I don't know why it's kicked up so much just because I did some learning, I'd done this before. Maybe it's because I did so much and it's sank in more...?

 

Noticed a strange shift in what I'm dealing with over the past month or so where one side now barely flares at all, and the other is the same as ever. I'm confident there was never a difference beforehand; so that kind of shift IS probably suspicious for a neuroplastic element to this.