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Erythromelalgia / Raynauds

Discussion in 'General Discussion Subforum' started by rand, May 5, 2022.

  1. rand

    rand Peer Supporter

    Hi, safe to say I've been suffering from TMS for about 10 yrs now. Started with neck pain. 2020 was a bad year for me, brutal neck flare, alopecia, Raynauds, and erythromelalgia symptoms. I read Sarno's book in spring 2021 and the neck pain went away with a few weeks, alopecia cleared up, I was convinced Sarno's theory is correct. The TMS continued to haunt me, bouncing around from my foot to my hip to my knee. Each time I was able to successfully vanquish it by recognizing it was TMS. However, the erythromelalgia has stuck around, and gotten worse. Unlike with something like hip pain, where I got an Xray and was able to confirm no structural issues, EM is very difficult to diagnose or rule out, because most docs dont know what it is. I am not sure if this is TMS or if it is real at this point. Sarno talked about Raynauds in Mindbody Prescription, considering it TMS-adjacent. Raynauds is considered the "inverse" of erythromelalgia, they are both sympathetic nervous system issues involving oxygen deprivation. I find this alone to be a substantial link to the typical mechanism of TMS, and this is why I'm suspicious of EM. The EM symptoms have gotten worse this spring, I never had flare ups in my feet or at night while sleeping until this week. I have also been descending down the rabbit hole of reading EM support forums, researching, focusing all attention on symptoms, hyper body awareness, which I know is TMS fuel. Up until last week I could console myself that I had no foot pain, and what do you know, now I have foot pain. This seems a little too convenient. But regardless, my tried and true methods of vanquishing TMS symptoms seem to have no effect on this EM - I walk outside on a hot day and no matter what I tell myself, my hands and feet flare up. I haven't seen much discussion linking EM and TMS, I have seen some talk of neuropathy, which is related to EM. Wondering if anyone had any thoughts? Fwiw I have seen a few dr's about this, including a neurologist, and have not received much help. I will continue trying other drs though.
  2. miffybunny

    miffybunny Beloved Grand Eagle

    Hi @rand, yes rest assured that EM is TMS. It's becoming a trendy label lately and when I was in my throes of "Crps", the EM was mentioned to me as well. It's meaningless though and just denotes vascular type symptoms (color changes). Whatever you do, avoid those EM forums like the plague...they are just repositories of fear mongering and misinformation unfortunately. My advice is to not worry about this whatsoever, and resume your life. They are just false alarm signals from the brain.
    Last edited: May 6, 2022
    backhand and MWsunin12 like this.
  3. rand

    rand Peer Supporter

    Thank you so much @miffybunny, I'm fighting as hard as I can against this. I may need the help of a therapist trained in psychosomatic illness for this one.
    miffybunny likes this.
  4. rand

    rand Peer Supporter

    I'm not sure what this means, but I went out and played baseball with my friends in the hot sun today. At first I wasn't going to go, since my feet have been flaring up and burning after short walks in my neighborhood. I knew I had to get out there and play though. After running around the field for half an hour I started feeling the pain creeping into my feet, and my hands flaring up turning red. Another 30 mins went by, and the pain in my feet just wasn't there anymore. I was having so much fun playing I just totally forgot about it and it disappeared, and my feet feel perfectly normal right now, an hour later. Now I'm no neurologist, but that makes no sense. This makes me feel very optimistic, this was the inconsistency I was looking for but had as of yet evaded me.
  5. rand

    rand Peer Supporter

    Well after dealing with these feet flare ups for about a month sadly I'm not convinced this is psychosomatic. I have been to several doctors over the last few weeks and no one has been able to help me at all. Last weekend I made an effort to stay outside in the heat and be as active as possible, even though my hands and feet were flaring badly. Now it seems like my feet are worse, they turn red and hot just from sitting at my desk. I'm really not sure what to do now, I am seeing a couple more doctors in the coming week.
  6. cain aven

    cain aven Peer Supporter

    Hi - My second set of symptoms were very similar to erythomelalgia - Hands would flush red (mottled, with white spots all over), super-intense burning pain. Feet would also burn, though not as frequently. If I smoked a cigarette, symptoms ceased immediately, which was one of the clues that it wasn't erythomelalgia per se (my hands would mottle before the pain started, and I've met others with the same condition - 'bier's spots'); it took several years but now the burning has almost entirely gone away and instead i just get low aches in my hands and very rarely a mild burning sensation in either hands or feet when really tired. Note: symptoms only really began to dissipate when I when I went into remote during Covid.
  7. rand

    rand Peer Supporter

    Thanks for sharing that, its good to hear from people who've had visible symptoms.

    I read Steve O's book and did a consult with him, and he recommended I read David Hawkins' Healing & Recovery. which takes a somewhat different approach than Sarno but is still compatible imo. Hawkins' focuses on "levels of consciousness" - negative emotions and belief systems like guilt, shame, fear, anger occupy the lower levels and are destructive and lead to bodily illness. The upper levels - courage, willingness, love, and joy lead to healing. I do really like that framework, and after reading it I realized I have been stuck in the lower levels my entire adult life. Hawkins' approach gives me hope because there is not really the delineation of "structural vs psychosomatic" that I have been wrestling with for these symptoms. He describes unhealthy psyche/spirit as being a breeding ground for illness, and the mind will create illness as a signal that spiritual work is direly needed.

    Also I emailed Dr. Schubiner about this condition and he unequivocally said its TMS. I have received a good deal of affirmation, yet no improvement. I will explore the spiritual improvement approach.
  8. TG957

    TG957 Beloved Grand Eagle

    My Raynauds came with bunch of other symptoms, including severe neuropathy. All completely disappeared after I worked on my emotional issues. I have been 100% symptom-free since 2018. None of the doctors, including neurologist, were helpful with any of my symptoms, except for TMS doctors. You should stop looking for help where you can't get any. TMS is the only answer. If you want to learn more, you can read my book which describes in details how I healed. https://www.amazon.com/dp/B0834Q46SM.
  9. Baseball65

    Baseball65 Beloved Grand Eagle

    They are coming out with so many NEW diagnoses that are just a collection of symptoms... I had to look up E-whatever you call it to find out it was Neropa-whatever.. Jesus christ, If I was as bad at fixing stuff as Drs. are at diagnosing stuff I'd never eat!

    I had "Reynauds" as a secondary symptom behind my meat and potatoes TMS. In reflection, it was always in situations where I was frustrated, scared,etc...and then of course, conditioning.

    I couldn't count the number of guys who come out to our baseball get togethers and then mysteriously have to leave with symptoms.... Been told all of the "don't do this" list, frustrated that it's not as easy as it looks on TV,etc???

    Doctors give out diagnoses. If you keep going to Drs, you'll keep getting THOSE.... reading, learning and doing this work you will find healing. Period. No matter how dire your condition.
    TG957 likes this.
  10. TG957

    TG957 Beloved Grand Eagle

    Exactly, and the less they understand what is going on and what to do about it, the more words are in the diagnosis.
  11. rand

    rand Peer Supporter

    I agree with you, this condition is sufficiently bizarre that TMS seems the obvious answer. I should point out that no Dr. has diagnosed me, in fact they all were clueless about it. I learned about this condition by googling "burning red hands" when these symptoms first appeared in my hands 2 yrs ago. Despite being so rare, erythromelalgia is at the top of the search results. So yeah, I realize its possible I "googled" my way into further progression of these symptoms.

    I also want to say that if these symptoms just appeared completely out of nowhere (like my other TMS symptoms), I'd have a much easier time believing its 100% TMS. But the truth is, these symptoms coincided with starting minoxidil (for hair loss). I was able to find some other people who reported similar symptoms after minoxidil usage. There are studies showing minoxidil can alter arterial vasodilation/constriction function, possible permanently, and in vitro studies showing it inhibits collagen synthesis, which would affect blood vessel function and skin.

    I started this thread 2 months ago, and in that time I can't deny that there are real visible structural changes occurring to my skin. The veins in my hands and arms are constantly bulging out of my skin, the skin on my hands and arms appears to be thinning and becoming translucent, I can see every vein and tendon. I've been taking photos of my hands for documentation along the way so I know its not just my imagination. The way my hands looked during the worst flare up a few months ago is now how they look all the time. The sight of my hands is so distressing that I always wear gloves, to keep myself from fixating on them.

    So, every time I'm able to convince myself this is TMS, the "what if's" creep back in... what if that medication really screwed me up? And I'm back to square one each time. I begin to wonder if my continual insistence that these symptoms are psychosomatic is really just a coping mechanism, denial of a more frightening explanation.

    I really appreciate everyone's replies, thank you so much.
    Last edited: Jul 2, 2022
  12. jenny.rice

    jenny.rice New Member

    Hello friend,

    I read your post a while back and have been wanting to reply for quite some time. You and I have identical symptoms, everything you describe has been my experience as well. The time frame is also the same, so you might consider whether or not yours is a result of COVID or another virus. I will be writing about my issues/treatment/protocols on my blog. I would love an update on how you are doing. You can read about my adventures with EM and Reynaud's here:

    https://jennyrice.love/blog/2023/5/20/if-youre-wondering-where-ive-been-its-to-hell-and-now-im-slowly-making-my-way-home-again (Erythromelalgia, Raynaud's, and Long COVID — Jenny Rice)
  13. miffybunny

    miffybunny Beloved Grand Eagle

    Have you read anything by Dr. Sarno or the mind body approach on this site? These are meaningless labels and totally reversible.
  14. jenny.rice

    jenny.rice New Member

    Hello, thanks for your reply. Yes, I have, and I've also read the book Healing and Recovery by Hawkins, mentioned in this thread as well. That book has become like a bible to me. I've been able to overcome intense spine pain, migraines, and tinnitus. But the EM is persisting. I do believe at the root it is TMS, but it's apparently a very stubborn manifestation of it.
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  15. miffybunny

    miffybunny Beloved Grand Eagle

    Yes I understand, I had CRPS which has a lot of overlap (they gave me the EM label at one point). You overcame other incredibly challenging symptoms so you will overcome this as well. The visuals add another layer of fear and preoccupation...it can really do a number on you psychologically but once you know, it slowly ceases to trick you. The strategy may be trying to win a battle but it won't win the war!
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  16. TG957

    TG957 Beloved Grand Eagle

    My CRPS symptoms including burning red hands, thinning skin, Reynaud's and other fun things. It is all gone. For a while, I tried to go down the rabbit hole of micromolecular analysis of my symptoms, but luckily Dr. Sarno came along. I went full TMS and was symptoms-free in about 2 years. It takes time, patients and laser focus on psychosomatic origin of symptoms. Reading books was not enough, but meditation did the trick. You need to stabilize your nervous system, and meditation is the best tool.
    tag24, jenny.rice and miffybunny like this.
  17. mbo

    mbo Well known member

    «The strategy may be trying to win a battle but it won't win the war!»
    Great sentence. So true !!!!
    jenny.rice and miffybunny like this.
  18. rand

    rand Peer Supporter

    Hey Jenny, i'm still dealing with it, but I'm back to playing sports and working outside and doing all the things I want/used to do. Losing the fear, teaching myself that living is ok, which is a huge improvement over last year. I had Covid in August of last year but symptoms started long before that so I don't see a link there. Glad you see the link to your trauma, thats where I believe it stems for me. For me the mindbody approach is the only option now. If you feel like you've exhausted the traditional medicine approach (like I have) then I think you ought to leave that world behind and take the mindbody approach. There's nothing to lose.
  19. rand

    rand Peer Supporter

    Also, re: long covid. I'd exercise caution in assuming you had asymptomatic covid simply because others report EM via long covid. Lots of people develop EM from no apparent cause at all - there doesn't have to be a cause but your mind desires to fill in that blank. My problem with the long covid groups, e.g. on reddit, is you can type pretty much any symptom into the search and find someone reporting it. Those groups have become magnets for people with health anxiety. What I see there is a great deal of autonomic dysfunction, which is TMS territory imo.
  20. Dorado

    Dorado Beloved Grand Eagle

    Agreed with this.

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