tag24
Peer Supporter
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.
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.
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