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Terrified of erythromelalgia-like symptoms

Discussion in 'Support Subforum' started by tag24, May 11, 2023.

  1. tag24

    tag24 Newcomer

    So, I'm definitely a classic TMS personality, and have pretty severe health anxiety to boot... over the last four years, I've gone through a number of scary symptoms that all lasted a few months before disappearing. First was chronic headaches and neck pain (resolved after an MRI), then digestive upset and lower right-quarter abdominal pain (disappeared shortly after CT scan), and then chest pain and shortness of breath... etc. etc. I was well used to imagining that my symptoms could be being caused by stress, and had previously read The Mind Body Prescription a few years back and done some light journalling based off it. However, this time, I've developed a much scarier symptom which is much harder to "prove is nothing" by medical intervention, and I'm terrified about it.

    For those who don't know, EM is an extremely rare (studies indicate it's 1 in 100,000) vascular/neuropathic disorder where your feet/hands/face flare up, turn bright red and hot, and usually hurt following an increase in temperature. This can be as a result of exercise, a hot bath or shower, or caffeine/alcohol consumption. It's difficult to treat and sometimes progressive, but details on this are unclear. For me, it's only in my toes, and only really happens problematically after exercise... and furthermore, until recently, it never hurt, just felt hot.

    The first time I ever took a photo of this happening to me was March of last year (which was right when I was in the midst of a really intense period of depression), and for about the last 14 months, it's just something I had happen and didn't think too much about. Occasionally, I'd be anxious about it happening, but it never weighed on me to any extreme degree. I'd go walk or run and come home and take my socks off and let my feet cool down; and that was it. I'd always had cold feet my whole life, so I figured it was just some weird circulation oddity, and wrote it off because it was so short-lived and specific.

    However, this started to change in the last few weeks. Following another very intense anxiety episode over a separate health issue, I suddenly... began to think about this more, and panic about it more, and I haven't been able to get it out of my head. I had the word 'erythromelalgia' in my head for about a year now and had written it off at first due to its rarity and my lack of severe pain, but for some reason that sounds a lot less convincing to me now. I've probably spent a conservative 30 hours googling and reading about the issue in the last week, and have spent upwards of 60-70 thinking about it. I'm finding it impossible to distract myself, and now I'm starting to feel a burning/tingling sensation in my right toes all the time and it won't go away.

    I was hoping for reassurance, but all the research has done is terrify me that this is erythromelalgia. Anywhere I look, I see photos of the condition that look just like me, and its only mentions here on the tms forum have been cases of people yet to get remission from it... I'm willing to believe that this is stress-induced. The points in my favour there are that
    * the condition is extremely rare
    * I'd be extremely young (22) to have it onset in adulthood
    * There are possibly SOME inconsistencies with how it operates, but the literature is so poor that I can't tell if they're really inconsistencies or not
    * I do have a history of health anxiety and cyclical health issues that come, make me panic, disappear as I get used to them, and are replaced with something new

    But this time feels different. It might be because this has struck in an especially hyper health-anxious period, but I'm 10x more anxious about this than any symptom I've had before. I've barely slept in a few days, I threw up a bunch this morning from being so afraid about it, and I'm desperate to be convinced that this is nothing and will go away so that I can get better from it. I thought I was better able to cope with health issues like this by now, but this has really shattered me. I'm so, so afraid and helpless. I could really use advice, comfort, reassurance, anything at all that would indicate I can fix this and it'll go away. I've begun journalling but I feel like I'm so hyper-aware of myself right now that I'm going to be crushed if I don't get rapid symptom resolution, and that's just not realistic.

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  2. Cactusflower

    Cactusflower Beloved Grand Eagle

    Hello and welcome @tag24
    I have a few suggestion to help you on your tms journey.
    My first is to re-read The Mind Body Prescription. It is very important, that no matter what is going on with you, that you strengthen this connection.
    My 2nd suggestion is to stop “diagnosing” your own symptoms and giving them a medical name. Leave that to those who are qualified.

    3rd suggestion is to go to your Doctor to get checked out.
    There are also tms Doctors who consult for fees, but I suggest unless you have one locally, to use your own Dr. first.

    Lastly, consider a consistent TMS program or practice to help your anxiety and mental suffering. Decide if your can personally commit to your own self-care frequently (even daily). This can take whatever form works for you. Two free programs offered here are designed to help you identify what tms techniques might work for you. They are the beginning of your ability to have a greater understanding of your internal life. You can find them by scrolling down this page: https://www.tmswiki.org/w/index.php?page=The_Tension_Myositis_Syndrome_Wiki (The Tension Myositis Syndrome Wiki)
  3. tag24

    tag24 Newcomer

    Thank you, I appreciate the response. I probably should have mentioned in the original post, I AM going to go to a doctor about this in 4 days and discuss both my symptoms and get a standard blood test to check for any deficiencies etc. that might be a very simple cause/fix... additionally, I reread Dr. Sarno's book within the last three weeks, which is what put me back on the TMS train of thought to start with. I'm open to rereading it again before too long, but need a little while more before I'd be able to focus on it again. I'm currently reading another optimistic mind-body oriented book of a similar style, so am still educating myself on the topic.

    A consistent TMS program would definitely be helpful, and is something I'm going to start with today, possibly the Structured Educational Program if that's still what's recommended. But does this seem like it could be TMS to you? From what I know, EM is a poorly understood condition that most doctors have never even heard of, so I'm a little afraid to even mention it to my GP in case they decide to just run with it and I become even more anxious... and I'm a little worried that in the absence of an obvious issue in my bloodwork, I'd need referral to specialists to actually get an answer one way or another. That process can take months :( I miss the days of having symptoms that were assuaged by a single GP visit, lol.
    Last edited: May 11, 2023
  4. rand

    rand Peer Supporter

    Hey Tag, you and I are in the exact same boat, except I had my initial panic phase a year ago so I will save you some time with a little advice here:
    Your primary care doc may or may not have heard of EM, you need to have them run a panel to rule out autoimmune, connective tissue disease, myeloproliferative disease, i.e. secondary EM, which I do not think is TMS. Secondary EM accounts for something like 10% of all cases. There is also the SCN9A genetic mutation to check for, for genetic EM which accounts for something like 5% of all primary cases. If your bloodwork comes back normal, which it most likely will, then its just idiopathic primary EM. I saw a lot of specialists but didn't have much luck, your experience could be different though.

    I saw Dr. Schubiner who assured me this was TMS, and I believe with his assurance I have been able to dial back the fear significantly to the point where I am back to playing sports and working on projects out in the yard, and not terrified of the sight of my purply red hands/feet. I haven't seen any improvement in the symptoms themselves. My EM is mostly painless, its just hot and uncomfortable and it has ruined my skin appearance. The only thing I have control over really is whether I want to sit inside and hide from life or try to get back to doing something other than trying to fix myself. It helps to have a project or something to work on and get outside of your head. Like you said this is an extremely tough one to distract yourself from. Currently I'm trying to test the claim that "symptoms go away when it doesn't matter to you if they're there or not."
    JanAtheCPA likes this.
  5. tag24

    tag24 Newcomer

    Hi Rand, thanks for answering. Yeah, your posts are among those I meant as the "failed to enter remission" EM stories here... there is one (maybe two) success stories, but the rest are a lot like yours. I appreciate that you've made a lot of progress and I'm very glad to hear you're back to living your regular daily life, mostly unencumbered by this bar the discomfort. However, perhaps because I'm so early on with this, I'm still very much terrified by the idea of having to come to terms with something permanently and am hoping that, since it began so clearly during a high-stress time, it might go away as suddenly... the bloodwork recommendations are good, I'm going to try get my ANA tested at least and anything else that might indicate an autoimmune/vascular disorder, as well as all the basics like thyroid and iron and etc etc. Right now, the idea of not getting a fix for this makes me super panicky and nauseous, instantly - there's a ton of fear attached I need to start working through, because I'm literally afraid to go for a walk right now since the redness is making me panic.
  6. rand

    rand Peer Supporter

    Yeah man I know exactly how you feel. Mine blew up after a high stress time as well. Its been my final boss, I had more standard type musculoskeletal TMS all through my 20s (im 33 now). I too miss the days when the doc could do a simple xray, tell me theres nothing wrong, and I walk out of the office pain free. Its just not that simple with EM. In many ways EM is not a "disease" its just a symptom complex, an umbrella term to describe the presentation of red, hot, painful extremities. There's a lot of symptom variation across different patients, and response to treatment varies drastically, so its just very hard to treat. I too hoped some specialist could find a fix, and we did every test under the sun. I met my deductible sometime around August of last year so I just went hog wild with the doctors and tests. I went to Mayo Clinic in Jacksonville and had a skin biopsy. All tests were normal, no one could find anything, which is typical of idiopathic primary EM. It was expensive and nerve racking but I'm glad I saw all the docs and did all the tests, and got that out of my system, cause I don't feel that urge to find the fix anymore.

    I'd recommend checking out Dan Buglio's channel, his approach resonated the most with me - https://www.youtube.com/@PainFreeYou
    tag24 and JanAtheCPA like this.
  7. tag24

    tag24 Newcomer

    Thanks, man. I'll give that a look. Wishing you well with your journey. <3

    Aaaand in the meantime, if anyone else wants to chip in with some encouraging two cents for me, I'd be most appreciative... I really need hope that this won't last forever :(
    Last edited: May 11, 2023
  8. miffybunny

    miffybunny Beloved Grand Eagle

    Hi @tag24 ,

    This is nothing...just TMS. I had the label of crps (and even EM) and they are both nonsense labels for mind body. I had it severely in both feet, both knees (swelling, lobster redness, bone changes, color changes, off the charts burning and stabbing etc etc) and eventually full body, and I'm completely better now...totally back to normal. Don't get hung on the silly diagnostic label that gets slapped on a bunch of symptoms. This is all anxiety and all temporary. There is absolutely nothing wrong with you and this will go away, guaranteed!!
    tag24 likes this.
  9. tag24

    tag24 Newcomer

    Hey miffybunny! I was actually just thinking about reaching out to you about it, but wasn't sure of the etiquette re: messaging coaches directly. I've seen you talking about having been diagnosed/told you had EM during your CRPS-TMS journey, but couldn't find like, a masterpost about it. Your encouragement is very welcome; and I hope it's not too presumptuous, or triggering to ask you questions about it.

    When you were in the throes of this, were you in the same boat that you were very 'classic' EM in that you DID go red all over effected areas, and were affected by the common triggers, etc.? Obviously you've seen the pictures at the top of the thread showing what it's like for me, and that's part of what's throwing me off most. The way it's like I googled "red feet after exercise" and sooo clearly see myself reflected in every trigger and every image... but then the fact that EM as a diagnostic bucket is so often idiopathic, so hyper-specific, and rare really does kinda make me think EM might be a TMS equivalent (in general) when it's not secondary?

    I'm not sure. I can see a very clear link to TMS in my history of cyclic illness and it starting in a period of high stress, but I've been finding it very hard to convince myself of it when there's no significant talk of it being psychosomatic anywhere, bar 'stress' being considered a trigger alongside heat. That's not me doubting you at all, just expressing what's been making this so worrying... hard to find any forum stories of anyone saying "yeah, anxiety used to make my feet flush and super hot in these specific circumstances, but now I'm all better!" vs. people who put chronic pain/nausea/etc. into remission. How did you stay hopeful when you were in this same boat... but even worse, since there was no miffybunny success to read about? xD
    Last edited: May 11, 2023
  10. miffybunny

    miffybunny Beloved Grand Eagle

    Sure, feel free to pm me any time. Don't take this the wrong way but your photos are not "impressive" as physicians say (it's nothing) and even if they were plaid and Mickey Mouse patterned, it would still be TMS! The brain can take on any pathway under the sun and there is really no such thing as "classic" EM or CRPS because, although there are overlapping symptoms, they take on a myriad of permutations and trajectories. It is all the reflection of the individual's psychology (their thoughts, beliefs, fears, focus, past experiences etc etc etc etc). The info. you will find in traditional medical sites are at least 30 years behind the neuroscience research, so disregard all of it. No worries at all about triggering me either...emotions are not "contagious" unless one allows it lol! In the vast, vast majority of chronic pain and symptoms scenarios, the brain (emotions and thoughts and stress etc.) are the SOLE cause....not simply one factor in a multi factorial storm. To repeat, it is the one and ONLY cause. Period. The only time it's not a tms situation, is when there is a known pathology (tumors for ex) or infection or broken bone (structural injury). So stop googling and stop going to specialists as you will never find the answers there. The only solution is you but that is actually the best news of all! You don't even have to go to CVS! It's true that there was a paucity of success stories back in the day (crps and EM etc. were not as trendy diagnoses at the time) but I did cling to a couple of anecdotal stories I had found and I had confirmation from one of the most prominent physicians in the field, Dr. Schubiner, as well as wonderfully encouraging wiki members! It all made perfect sense and that was more than good enough for me to believe I would reverse the "habit" of the way my brain and body was interacting. There is another member on the wiki, my friend and colleague Tamara Gurin (@TG957 )who also fully recovered from a dramatic presentation of crps. You can obtain more info. at her site (as well as her book "Defying the Verdict") here: https://defeatcrps.com (Complex Regional Pain Syndrome : Your Path To Healing)

    My success story is in the Success thread on the forum... "I Recovered and So Can You!"
    Last edited: May 11, 2023
    Ellen likes this.
  11. tag24

    tag24 Newcomer

    Thank you so much for this. I'll read through that site tomorrow (it's midnight here) and root out your success story too. Your answer's been really encouraging, it's great to hear from someone who's had and recovered from this through the mindbody approach. And yeah you're right, I know EM photos can get a lotttt gnarlier so it might seem like nothing, but it's just really attracted my attention (something something moth, flame) for the past while and been impossible to stop thinking about. I'm going to start working through the SEP too and focus on calming the storm in my head... I might reach out to you again if I need specific support (and it's totally OK if you can't give it when I do) but I'm hopeful that just having this to read back will be good. So thank you for giving your encouragement. I look forward to being able to come back here as another success story!!
    miffybunny likes this.
  12. miffybunny

    miffybunny Beloved Grand Eagle

    The preoccupation with visuals is another layer of tms. Don't be tricked and don't be fooled! That's how the strategy ensares...through focus and hyper vigilance and fear. The visuals are as meaningless as the sensations so don't get fascinated with them because the brain is just trying to distract on a higher level. It's all a smokescreen. I have absolutely no doubt whatsoever you will post your success story ...sooner than later!
  13. tag24

    tag24 Newcomer

    Checking in a week later... been working through the SEP and, essentially, ERP-ing my response to the 'flares' as they are by going for walks to trigger them/using hot water foot baths to inoculate myself to the visual, lol. It's generally helping, I'm feeling less panicky as a default and more and more neutral about the symptoms when they kick off. There's some new pain with it though, in localised areas of my foot, I guess maybe as part of a symptom imperative? That's making it hard to quiet the voices that it's something else, especially when I'm still waiting for even basic blood tests to come back, but I'm doing my best.
  14. tag24

    tag24 Newcomer

    OK, spoke a little too soon xD
    New symptoms this evening, for the first time got observable red (and very hot!) patches up my legs all the way to my knee. Super panicky about it. Trying to keep myself distracted, telling myself it's an extinction burst.
  15. Cactusflower

    Cactusflower Beloved Grand Eagle

    Panic is just part of the anxiety. It is absolutely fine to recognize and accept that anxiety. Then turn to your logic. What you KNOW is true.
    Your foot is red but you are fine. You are not otherwise sick. You are not dying. You are essentially ok. You are anxious.
    Now look at the evidence you’ve had, that you have been doing the SEP and have been ok.
    Remind yourself that symptom imperative can be physical sensations and mental/emotional spikes and that they prove you are into something.
    Your brain feels it is simply keeping you safe from all the stuff you are bringing up that it has tried to protect you from. Talk to it. Tell it you are FINE bringing up these things. You can handle it. Be gentle but persistent. Be kind to yourself and know that at some point this too will pass. Today may be hard, but it will get better.
    tag24 likes this.
  16. tag24

    tag24 Newcomer

    Still doing the work. Today was actually the first day I missed of the SEP, but it was because yesterday's journalling needed 2 days instead of one p much.

    I'm still dealing with the original symptoms I posted about (perhaps not as severe; it's hard to tell tbh, and I AM trying a few physical things to treat it...) but am noticing a shift towards super tight, uncomfortable neck muscles and headaches, which I think is symptom imperative. Had three migraines in a row this week too after several years of them being super rare! Was first thinking the headaches were because of unseasonably good weather + high barometric pressure here, but as the neck tightness worsens I'm starting to link it to TMS. Do you guys think, even knowing that it's TMS, I can safely use stuff like heat and other conservative treatments to bring some relief while I continue doing the work, or is it bad to treat it physically at all?
    Last edited: Jun 5, 2023 at 7:47 PM

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