About a year in, just updating on my journey.

I was the OP for this thread: https://www.tmswiki.org/forum/threads/terrified-of-erythromelalgia-like-symptoms.27135/ (Terrified of erythromelalgia-like symptoms) which I've realised is just about a year old now - happy anniversary?


How have things changed: To briefly summarise, I've been dealing with these symptoms since March '22 and they've been largely static since beginning. In the last year since I've posted, they've worsened in some ways and improved in others - I now experience flare-ups in my hands and one ear (boo), but one foot has greatly improved and I'm generally better able to cope with them physically and emotionally.

This isn't really a change so much as it is just an inconsistency I've noticed; I've become aware that heat that should provoke a worse response typically doesn't. I.e, a flare from a hot bath of 109-111f feels like nothing at all, but a flare in my hands from using a video game controller for 20-30 minutes (like this evening!) can be disablingly intense. That doesn't make sense tbh - nor does how the flares feel worse at minute 10/11 of a walk than they do at minute 30/40!

...But I'm not sure what to do with that info. It mostly just makes me think that what I'm calling "EM", another doctor would call "POTS" or "heat urticaria" or "MCAS"... all of which are related conditions, and all of which are considered mindbody-related in these circles, so it kinda doesn't matter. I shouldn't feel super happy whenever I don't fit a textbook EM case I guess because that's very outcome-dependent, but I do take a measure of comfort in these inconsistencies.


The TMS Work I've been doing: Since May '23, I did the forum's Pain Recovery Program and followed Nicole Sachs' Journalspeak for about 6 months. Journalspeak gave me a lot of emotional insight and has helped me to realise all the ways my current life isn't working for me (there are many, lol!) but I've been unfortunately burdened by the symptoms enough that taking the big leaps necessary to change things haven't been realistic. I'm kinda waiting for a break in the symptoms to be able to chase some of those new things; but I haven't let it completely stop me, and am travelling to see some West End shows next week to try something new.

Since first posting, I've been in brief contact with Howard Schubiner, Dave Clarke (and a few other mindbody doctors and practitioners whose names escape me( - all echoed the forum's belief that this syndrome is TMS, and all encouraged me to have faith in the healing process. I'm doing my best with that, but it's been challenging. I saw a few standard doctors (a vascular specialist and a rheum) but all signs they could see were normal, and so I've been left with the vague diagnosis of idiopathic EM by the rheum.

Finally, I've also begun TMS therapy/counselling/whatever you call it with Mags Clarke Smith, one of the contributors of the Psychophysiologic Disorders textbook. It's only been a few months, but it's been illuminating and I'm hopeful it'll lead me to a breakthrough sooner rather than later.


Non TMS-approaches I've tried: From about May -> December 2023, I followed a reconditioning protocol recommended by some EM sufferers called Bob's Protocol, wherein you soak your feet or take a hot bath nightly in order to reset your body's response to heat. It has a lot of successes, and is non-invasive, so I was very optimistic about it when I first began. Buuuut it didn't do a lot for me. Despite that though, the success of this treatment for so many does actually bolster my belief that EM is a mindbody syndrome. The concept behind soaking in hot water to teach your body that heat is safe and not a threat (so that it can deactivate that over-reactivity) is sort of in line with graded exposure and the "danger signal" theory of TMS, and especially when you consider that the groups where this treatment is encouraged and shared all foster a real sense of (often religious) community, hope, optimism etc. which all remind me a little bit of how book cures land with some TMS sufferers. The heat desensitization route hasn't worked for me to date - I still take hot baths regularly for my own enjoyment at least - but I find it interesting that there was overlap there with TMS ideas.

The only other thing I've really tried is taking a med called Low Dose Naltrexone. It's fairly alternative/new-wave in ways, and is used for a battery of random autoimmune things and Long Covid. I figured it was worth a go, so I've been taking it about 2 months. It can allegedly take quite a while to have effect, so I'm sticking with it, but am mostly just neutral on this one; I can afford it so I'm willing to give it a go, and I'm not pinning either too much hope or despair on it.

Where I'm at Now: At the moment, I'm feeling a lot of mixed emotions. I feel both more hopeful that this can be beaten than I did in the past (due to my work with Mags and my own increased knowledge of TMS from people like Dan Buglio and Alan Gordon) but I still immensely struggle with panic when flares come, usually because they reinforce my idea that this will last forever and never go away. I basically oscillate between these spikes of "i'm doomed, i'm disabled, life isn't worth living" -> "this will pass, this is a mindbody syndrome, these symptoms are temporary..." and the battle between them is quite tiring. I notice that every time I have a flare, I feel really tired afterwards, mostly from the anxiety comedown that follows.

I unfortunately picked up a lot of really harmful nocebos from EM groups early on that I'm still having trouble shaking. I'm afraid of getting too hot, I'm afraid of getting too cold, I'm afraid of showers and shoes and spicy foods... I try to navigate them all with compassion and kind self-talk, but sometimes fear does get the better of me. (And then of course, fear of fear sets in, because I'm afraid that my anxious responses will make the TMS worse aaaaand it's all just one big loop.)

I'm often hypervigilant and fixated on the sensations of my feet and hands (and now ears) and regularly "rewarded" for this hypervigilance with flares, but I'm trying my best to shake it. My work on JS and with my TMS therapist has really been centered around this idea of "if you DIDN'T have these issues, what would you be spending your time on/thinking about? And can you do some more of that now?" but I have trouble even answering that question at times. Imagining a life beyond the symptoms is difficult, and I think that's the "shield" they offer me - a protection from having to answer that question, OR from having to live without the certainty.

In terms of the TMS approach though, I think my biggest issue is that I'm caught in this tug of war between a desperation to fixitfixitfixit and the knowledge that surrender/acceptance of myself and my symptoms, exactly as they are and INCLUDING the fear, is probably what I need to recover.

But as with many things, that's harder to put into practice than it is to realise. So I remain a work in progress lol.

I hope to be back with good news someday, and will update if anything relevant happens during the course of the next 12 months. I believe there's good evidence these symptoms are TMS, I believe that they are consistent with FIT criteria and I certainly believe that I have "enough" stress, worry, anxiety and trauma for an issue like this to have developed. I mainly struggle with believing it can be reversed, and in knowing how to do that - I've got the few EM success stories I've found saved on my computer and try to remind myself that if one person can do it, anyone can. But it's really hard, and I can't always convince myself of it. I'm a little anxious posting here because I fear that coming back with regular news of "I'm not any better " is annoying, but I'm not throwing in the towel.

 

@tag24 ,
I don’t see your post as you not being any better, or annoying! I see it as the real journey— what all those who eventually heal go through. It’s a refinement process. Not for the faint of heart. I figure when we’ve dug deep enough on our emotions and soothed ourselves enough, we will heal. It will just happen. We have the evidence it works. The process works. Don’t let the flares get you down. You are doing great!

 

See? You already know the answer.

 

Thank you - yeah, just trying to keep the faith. It's hard NOT to panic when I see and feel the symptoms kick in, like this evening with my hands turning red and feeling hot... but I guess how we react in the moment is less significant than how we respond after the fact, so I try to focus on that part!

 

It is SO hard not to freak out when symptoms flare!

 

Hey tag, remarkable how similar our experience and thought processes are. The oscillation back and forth between mindbody/structural explanations has preoccupied my mind as well over the last 2 years, though I have had stretches of not caring much either way. The dearth of mindbody success stories sure makes it difficult for us, and I think we are becoming the enfant terribles of this forum. But either way, gotta keep moving forward with life, theres really no other option, I still make sure I am always on the move, always keeping busy.

 

@tag24 and @rand — I struggle with this oscillation. What helps me the most is having a list of inconsistencies my TMS has shown over the years. How could it be anything but TMS when it behaves this way? The other thing that has helped me a lot is @AnitaV ’s recovery plan.

 

Hey Rand - hope these are readable, but said I'd share them anyway. These are a couple of people I did see speaking about EM on Facebook groups/Howard Schubiner via email.

I do hope you improve (as I hope for myself) but wanna say that I think the part of your journey in which you did experience worsened nighttime symptoms (which then stopped happening, per your posts!) should be taken as a good sign of the condition's impermanence. And your time of some relief while you were really embracing heat during summertime and spending a lot of time outdoors. IDK where you're at now, but I feel like when you've experienced it going from "where it is" to better/worse and back again, that at least means it's movable; and all the Bob's Protocol stories make me believe that it kinda doesn't matter how bad it is, recovery IS possible.

I think this is a rare kind of TMS - but a totally "sensible" one in how autonomic our temperature control/response is. And it makes sense that long term stress, pressure etc. could disrupt that, if we can see in other TMS stories that many people with dysautonomia type issues healed by this work alone. Obviously I go back and forth myself and I'm not saying I don't feel hopeless at times, but I do think it makes sense that if TMS can cause a lot of symptoms like dizziness, blurred vision, etc etc... which go beyond just "Pain" and are related to our autonomic systems, that it could cause these ones (EM/Raynaud's) too.

As for why it's rarer, who knows - perhaps that's just a bit of TMS bad luck. Or maybe it's not so rare, and the common story of "burning feet" told by doctors like David Hanscom and others actually WERE issues like ours, they just never switched on the lights at night lol. But either way, I think the successes of Bob's Protocol, the absence of clear clinical diagnoses of SFN or other issues, and the connection of EM to lots of TMS-adjacent issues (or issues we've seen healed with TMS work like POTS...) point towards this being an UNlearnable bodily response.

(Not pictured below; I asked Dr Stracks a question on a Curable live Q&A before and he said that he has treated EM successfully before. He considered it an overactivity of the circulatory/immune system and it was responsive to "calming measures" like meditation, cognitive soothing, etc.)

 

@rand and @tag24 — I don’t have what you guys have, but I have non-pain symptoms that are weird. Numb leg, loss of balance, a feeling like someone squeezing my lower abdomen, sometimes. Fingers that curl up like claws. After searching the wiki, I did find people with symptoms like me. And also many of the experts saying:Yes, anything is possible with TMS. I guess the bottom line is our brains know us so well. They know what will scare the poop out of us. They know how to keep that doubt going. And that’s what we have to fight with constant thoughts about the inconsistencies. The times it was crystal clear that emotions triggered the symptoms. I personally would never believe I have a back problem after I read Sarno. But the symptoms I have now are capable of instilling doubt if I let them. Every day, though, I am seeing the tiniest chinks in the armor. Very tiny. This makes me think my TMS recovery homework is working. I’m thinking one of these days, these little holes I’m chipping in the wall will bring this whole charade down at some point. I wish you both well! It’s really hard. And you are brave. Don’t give up!

 

Thanks for those screenshots tag, thats honestly first time i've seen anyone explicitly say they got better via tms route, so thats good. I've been a little bummed lately, a few weeks ago the neuropathic burning/tingling/itching accompanying flares in my feet ratcheted up significantly, overnight. The timing is suspect, the week prior I had a friendly phone call with Dr. Schubiner, he just wanted to hear how I was doing. I told him I was doing really well, despite symptoms lingering, but no longer afraid of heat/activity, back to normal life, reaching that stage of indifference. He was delighted to hear all this, and I was delighted to tell him. That week kind of felt like the beginning of a turning point of sorts, I was very busy organizing a big event with my local moped club, I don't remember thinking about my symptoms much at all. So it was disappointing when things just suddenly got much worse the next week, but also probably not a coincidence. Could it be my mind recognized I was losing interest in the symptoms, and that call with Schubiner was something of an official proclamation of this, so the neuropathic burning/tingling had to come on to refocus me?

The only other thing that happened that week was my neurologist upped my dosage of lamotragine (a mild sodium channel blocker we've been trying for 6 months that has had 0 effect so far) from 75mg to 100mg. I told him about the increase in symptoms and he was baffled, dropped the dosage back to 75 and it hasn't settled back down. It just doesn't make any sense, and I suspect it is my mind once again playing tricks on me (it wouldn't be the first time my mind has used medication to increase/bring on symptoms and frankly the trick is getting old). I suppose this development is a double edged sword, on one hand its all absurd and inexplicable enough to dismiss as tms, but on the other hand I was enjoying life again and could've done without this. But regardless I'm staying the course.

 

I think your gut sense that it's related, á la some kind of extinction burst, is probably right Rand. I can't tell you for sure - but I do think that your mind is using the med increase, etc. as an "excuse" to explain itself. Your neurologist being baffled is a good sign of that, imo. And especially when you said the week already felt like a turning point!

IDK your contact frequency with Dr. Schubiner but I'd be interested in what he had to say on this, if you reached out to him; I think he'd echo what you've said yourself, that this is your mind trying to reclaim your attention with the symptoms. There's no good structural reason for any change here, and especially not with the 33% increase of a med that had been doing nothing at all but should only really have helped.

 

Well it was Schubiner himself who suggested I had a fear of medication, that was over a year ago, so I'm certain he'd dismiss this as more tricks. Pretty much all my increases in symptoms over the years occured after taking some medication, which may have been a valid explanation the first time, but becomes less plausible after multiple unrelated meds that no one else has any issue with.

Btw @Diana-M thats a good post by @AnitaV , hadn't seen it before, the devil/angel on the shoulder analogy is apt.

 

Had a bit of a (depressing? Not sure) a-ha on a call with my TMS coach the other day where I expressed disappointment that things still felt the same, if not a bit worse, with that usual refrain of "why is nothing changing? I'm doing all the right stuff"...

But then of course I realized...
I'm not.
I'm doing some TMS supportive practices, true. I'm journalling. I'm back to physical movement. I'm meditating, I'm blah blah blah. I have a little checklist I get through, without obsessing too much, treating these items as a buffet to draw from rather than a brief I must fulfil.

But I'm also still catastrophising about my pain. I'm watching it like a hawk every time I bathe or exercise. I'm thinking about it constantly. Everything I do is in service to it, even if that service is "so I get away from it for a while". I wasn't even able to really let go of some of the homeopathic treatment ideas like hot soaks that I was noceboed into, I get terribly anxious if I do. So what's really changed for me in the months of treatment? I'm more knowledgeable, I'm more aware, I'm living life more, I'm making steps towards changing my life for the better... All good things. But it's more like I'm throwing stuff ON TOP of what was already there, without changing that foundation at all. That "stuff on top" matters and has a role to play. But my root fear, obsession and dread persist; and they're the killer here.

I don't have a grand point here beyond the very obvious... Sometimes you can be doing every right Thing and convince yourself you're ticking the boxes, but you also have to STOP the stuff that's perpetuating your symptoms with fear and attention. In fact, that's probably more important lol.

 

You know what to do! You’re doing it. It will all add up. I can tell you that Having Fun (any fun) really helps convince your mind that things are good. And Head Talk. Start working your brain over with good head talk. You might think you are merely conning it. But you’re not. It will believe you! For what it’s worth, here’s my recent insight, and I feel like I could be you with the persistent fear obstacle. https://www.tmswiki.org/forum/threads/how-i%E2%80%99m-getting-better.28476/#post-149019 (How I’m getting better)

Also— to help you see you actually are getting somewhere…https://www.tmswiki.org/forum/threads/tms-healing-inventory-how-to-measure-your-progress-without-using-pain-as-an-indicator.28432/ (TMS healing inventory: How to measure your progress without using pain as an indicator)