Erythromelalgia / Raynauds

[JanAtheCPA]

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.

You've come a long way in a year, @rand! Good work

 

[jenny.rice]

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.

Yes, I definitely see your point here and thank you for your response. There were a number of other issues at play that I definitely consider as "canaries in the coal mine," or so to speak. I have been using the mind/body approach to overcome a number of other issues, some I didn't mention in my post but included a serious spinal injury. I had long-term chronic pain that went away within two weeks of mind/body meditation and altering my thinking. Ive also had migraines since I was a kid, and they have vanished as well. I have never let the EM stop me from playing sports or doing all of the things I love (I'm an athletic, outdoors person and I love hot weather). I put my socks and shoes on and ignore whatever discomfort I feel. Yet, it persists. I'm convinced that one day it will disappear as quickly as it came on, which was basically overnight.

 

[jenny.rice]

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.

It is wonderful to hear how much things have changed for you, and that you're back to playing sports and doing what you love. That's huge!

 

[jenny.rice]

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.

Thank you... it's helpful to know that it took you two years to overcome your CRPS symptoms. Although I've been struggling with the EM for three years, reading your reply gives me a lot of hope, because even if it takes me another three years to overcome it, that's fine with me. I know it's a process.

 

[jenny.rice]

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!

That's true... this visual manifestations are challenging to deal with. It's interesting to think that back pain and migraines may have been easier to overcome because there was no visual "proof" to cling to.

 

[rand]

Yes, I definitely see your point here and thank you for your response. There were a number of other issues at play that I definitely consider as "canaries in the coal mine," or so to speak. I have been using the mind/body approach to overcome a number of other issues, some I didn't mention in my post but included a serious spinal injury. I had long-term chronic pain that went away within two weeks of mind/body meditation and altering my thinking. Ive also had migraines since I was a kid, and they have vanished as well. I have never let the EM stop me from playing sports or doing all of the things I love (I'm an athletic, outdoors person and I love hot weather). I put my socks and shoes on and ignore whatever discomfort I feel. Yet, it persists. I'm convinced that one day it will disappear as quickly as it came on, which was basically overnight.

Similar story for me, I had chronic neck pain for 10 yrs, resolved in a month after I read Sarno. Then less than a year later the EM really hit me. Not an uncommon pattern here.

And I agree with you completely about the visual thing. Any skin symptoms are particularly upsetting for someone who cares about their appearance, adds another level to it that isn't there for something like musculoskeletal pain.

 

[tag24]

Just chiming in as a third dealing with this exact issue right now. I'm 3 weeks into the TMS program and am working hard on digging into my psychology. Trying to keep busier, and to keep myself off health forums and other places that fuel my fear/feed that hunger for control, has been a big element of it. I'm not doing perfect with any of this, but I'm trying my best. I've had some symptom imperative in the process, and some return of old fixations on symptoms, but trying to keep my focus off those and on my emotional work + daily goals and tasks.

As a follow up to what you said @TG957 , I'm curious about what form meditation takes for you now. I've been meditating daily for a while now but it's only ever really been a 10-15 minute affair and I've been considering whether I need to do longer, more intense sits, or to perhaps meditate/visualise at the same time on specific topics or something. What's your own meditation practice been like for TMS?

 

[TG957]

Just chiming in as a third dealing with this exact issue right now. I'm 3 weeks into the TMS program and am working hard on digging into my psychology. Trying to keep busier, and to keep myself off health forums and other places that fuel my fear/feed that hunger for control, has been a big element of it. I'm not doing perfect with any of this, but I'm trying my best. I've had some symptom imperative in the process, and some return of old fixations on symptoms, but trying to keep my focus off those and on my emotional work + daily goals and tasks.

As a follow up to what you said @TG957 , I'm curious about what form meditation takes for you now. I've been meditating daily for a while now but it's only ever really been a 10-15 minute affair and I've been considering whether I need to do longer, more intense sits, or to perhaps meditate/visualise at the same time on specific topics or something. What's your own meditation practice been like for TMS?

I only saw results after I started meditating for at least 1 hour at a time, daily. Here is how I describe is (starting at 23'47")

 

[rand]

Everyone, a short update, I've been feeling really good lately. The tide has turned for me this month. Along with Dan Buglio's minimalist approach (no more "tms work"), I've adopted an aggressive heat exposure routine (the EM community calls this Bob's Protocol). Its summer in the South and I spend all my free time out in the heat, biking, jogging, basketball, baseball, working on my motorcycle, having a beer on the porch. I worship the sun now, you should see my tan. There are for the first time some objective signs of symptom improvement - my feet no longer flare up burning hot after taking long walks in the heat, nor do they flare up at night when I go to sleep, the prickly neuropathic burning sensations have completely disappeared. The blood pooling/color changes in hands/feet is still there though I believe is improving, or at least I don't really care about it that much. I can literally do anything I want to do now, the fear is subsiding. I think it is premature to post a success story (though I have probably vanquished 15-20 other tms symptoms in the past 3 years), I just wanted to share this update for the benefit of the others on here with EM symptoms (@tag24 @jenny.rice ).

 

[tag24]

Everyone, a short update, I've been feeling really good lately. The tide has turned for me this month. Along with Dan Buglio's minimalist approach (no more "tms work"), I've adopted an aggressive heat exposure routine (the EM community calls this Bob's Protocol). Its summer in the South and I spend all my free time out in the heat, biking, jogging, basketball, baseball, working on my motorcycle, having a beer on the porch. I worship the sun now, you should see my tan. There are for the first time some objective signs of symptom improvement - my feet no longer flare up burning hot after taking long walks in the heat, nor do they flare up at night when I go to sleep, the prickly neuropathic burning sensations have completely disappeared. The blood pooling/color changes in hands/feet is still there though I believe is improving, or at least I don't really care about it that much. I can literally do anything I want to do now, the fear is subsiding. I think it is premature to post a success story (though I have probably vanquished 15-20 other tms symptoms in the past 3 years), I just wanted to share this update for the benefit of the others on here with EM symptoms (@tag24 @jenny.rice ).

I'm so glad to hear it's worked for you Rand, I've actually been on the heat exposure myself for 6 weeks now but not seeing much change yet - if anything, I'm finding it's just made my feet waaay worse outside of flares. xD Might have to start wearing double socks, shoes, etc. in the house to combat that, since it's a lot cooler here than the South. I'd actually been meaning to message you to suggest Bob's Protocol because I'd done a lot of reading about it, but was hesitant in case it rubbed you the wrong way. So glad you've found improvement - it's a treatment approach I've seen a loooot of EM people citing success with, so I'm delighted you're another. Keep going with the heat and the Buglio approach of a light, easy TMS angle... I've got every confidence you'll stay better, and hope to join you soon too.

 

[jenny.rice]

Everyone, a short update, I've been feeling really good lately. The tide has turned for me this month. Along with Dan Buglio's minimalist approach (no more "tms work"), I've adopted an aggressive heat exposure routine (the EM community calls this Bob's Protocol). Its summer in the South and I spend all my free time out in the heat, biking, jogging, basketball, baseball, working on my motorcycle, having a beer on the porch. I worship the sun now, you should see my tan. There are for the first time some objective signs of symptom improvement - my feet no longer flare up burning hot after taking long walks in the heat, nor do they flare up at night when I go to sleep, the prickly neuropathic burning sensations have completely disappeared. The blood pooling/color changes in hands/feet is still there though I believe is improving, or at least I don't really care about it that much. I can literally do anything I want to do now, the fear is subsiding. I think it is premature to post a success story (though I have probably vanquished 15-20 other tms symptoms in the past 3 years), I just wanted to share this update for the benefit of the others on here with EM symptoms (@tag24 @jenny.rice ).

Woohoo, this is awesome news!! Thank you so much for the update, I am really looking forward to hearing more from you. This gives me a lot of hope! I'm going to have to give some thought to the minimalist approach. I also think you may be on to something regarding the "full body" heat exposure.... it seems clear that vanquishing all fear of flares is critical. Keep us posted!

 

[rand]

@tag24 I briefly tried the hot soaks last year but didn't stick with it. This spring I resolved to push my limits re: exercising outdoors in the heat, then about a month ago I saw that a sort of "advanced" stage of bob's protocol involves consistent heat exposure outdoors along with the hot soaks, so I became even more emboldened. I don't do the hot soaks anymore (hot showers though), I'm just always outside exercising, so same principle essentially.

It is shocking that bob's protocol isn't suggested or even acknowledged by the medical community, e.g. Mayo clinic. The literature published by the EM Association for example stresses heat avoidance. Bob's may not work for everyone but given how well it works for so many you'd think it'd warrant a study by the EM clinic at Mayo.

 

[tag24]

@tag24 I briefly tried the hot soaks last year but didn't stick with it. This spring I resolved to push my limits re: exercising outdoors in the heat, then about a month ago I saw that a sort of "advanced" stage of bob's protocol involves consistent heat exposure outdoors along with the hot soaks, so I became even more emboldened. I don't do the hot soaks anymore (hot showers though), I'm just always outside exercising, so same principle essentially.

It is shocking that bob's protocol isn't suggested or even acknowledged by the medical community, e.g. Mayo clinic. The literature published by the EM Association for example stresses heat avoidance. Bob's may not work for everyone but given how well it works for so many you'd think it'd warrant a study by the EM clinic at Mayo.

For sure, it really should be more broadly investigated. I think exercising more might be the way for me to go to increase heat exposure, I've been doing hot soaks and keeping myself pretty warm but my feet are freeeezing even in 2 pairs of socks sometimes. I am also doing TMS work alongside this, but maybe just need to kinda... idk, deliberately flare more during the day via exercise and heat exposure to try replicate it. I've also been tested to have a mild folate deficiency though so I'm a little worried mine might be from an SFN associated with it... but will be trying it all to treat it in the meantime.

Just to give you some more optimism too, I've seen people who used this approach over a long term (1-2 years) taper off with the amount of heat exposure and maintain their results, including the creator of the heat exposure protocol himself. He stopped cold turkey and has been fine for years. Keep going hard at it while it's hot outside, keep pushing those limits. You've got this!

 

[rand]

@tag24 this is a new study regarding the relationship between SFN and EM, conducted by the EM Clinic at Mayo Rochester: https://jamanetwork.com/journals/jamadermatology/fullarticle/2588698 (Epidermal Nerve Fiber Quantification in Erythromelalgia)

Its very interesting. Basically they did ENFD (epidermal nerve fiber density) biopsies on 52 EM patients and found the majority were normal. The observed abnormalities were functional, not structural. They actually weren't expecting to see this. To me this supports a mindbody/nervous-system-in-overdrive theory, though Mayo clinic obviously did not suggest that. Reading this study dissuaded me from getting a SFN biopsy, and ended any concerns I had about SFN being some sort of structural cause of the EM.

 

[hmb]

Hi — How are you doing with this today? My story is this: in 2022 I developed facial (+ parts of my body) erythromelalgia after a cosmetic procedure. It was somewhat gradual but really took off during my first pregnancy. After I gave birth I saw some subtle improvements (other than increased redness on areas like my legs though the heat of it was manageable) but it was an accidental mind body approach that jumpstarted my recovery. It’s probably helpful to include that I’ve had severe health anxiety long before my erythromelalgia journey and debilitating generalized anxiety and panic for as long as I can remember. Post accidentally implementing a mind body approach, I was virtually pain free for two years although my redness (and slight heat) persisted. Since my recovery came as a result of exposure (taking hot showers, sitting in the sun, etc.) while telling myself it’s all anxiety, I continued to “test” and do these things, perhaps obsessively, over the last several years which made me feel reassured— I could do everything I set out to do!

Unfortunately, over the last year I’ve been under immense, unresolved stress. On top of that, I recently gave birth again. I could tell as soon as I came home from the hospital, potentially even a little before, that my obsessive symptom checking compulsion — to ensure I still wasn’t flaring — began increasing in addition to extreme anxiety. Fast-forward a few weeks to now, and the erythromelalgia is back with a vengeance, now impacting my ENTIRE body. Any movement, any type of exertion, emotion, even clothes on my skin, are causing me extreme discomfort. My technique that I used to essentially eradicate my symptoms the first time is no longer working. I’m not passing any of my own “tests.” I’m in an intense pain / fear cycle and having trouble getting out it despite feeling like it’s likely mind body related. With my fear at an absolute high my mind is in desperation mode, and my health anxiety is skyrocketing convincing me to ask myself if I’ve developed something more severe and need retested for things like MCAS/all the things I seemingly didn’t have before but feel as if I could now given the increase/adaptation of my symptoms. As you can probably gather, I’m a mess. Why is it worse this time? Why are my previous techniques not working? On top of that, I’m feeling overwhelmed by which mind body process to follow (Alan Gordon, Sarno, Dan Buglio), spending hours reading and researching which I’m sure nobody would suggest (at this extent, specifically). Anyway, I just needed to share my story. I’m hopeful I can re-convince my mind that this is in fact mind body related and I can heal again although this time it seems more persistent. I would love if someone could provide an opinion on why it may be so much worse this time around. Perhaps it’s that I never actually got to the root of the problem here and continued to obsess over new health issues once the erythromelalgia calmed down. I might know the answer to that but could definitely use the reassurance as I’m at the end of my rope.

@miffybunny are you still active on here? I’ve never used this forum before. Looks like you may be an expert.

 

[JanAtheCPA]

I’ve never used this forum before

Hi @hmb. The preferred way for new members to receive individual help is to go to the Support subforum, click on and repeat your introductory story with a descriptive title that reflects your personal situation and question.

Tagging on to a two-year old thread started by someone else, which had two full pages of posts from back then, is less likely to receive the attention that you deserve, and people can get distracted by the lengthy discussion preceding your post. It's also considered to be less-than-ideal forum etiquette (don't worry, it happens!).

 

[hmb]

Ok thanks for letting me know! I will delete and make a new post. @JanAtheCPA

 

[JanAtheCPA]

I see that you deleted your first post (presumably to copy-paste your story to your own thread) but I should have mentioned that you could also edit that one to tag the person you were addressing if you still want to ask your initial question - although "how are you now" questions don't always receive responses if someone has moved on! You can sometimes answer that question yourself by going to their profile page and see if they made subsequent posts. If your question was addressed to @rand, he pops in fairly regularly to offer positive support and useful advice to newcomers.

 

[hmb]

I see that you deleted your first post (presumably to copy-paste your story to your own thread) but I should have mentioned that you could also edit that one to tag the person you were addressing if you still want to ask your initial question - although "how are you now" questions don't always receive responses if someone has moved on! You can sometimes answer that question yourself by going to their profile page and see if they made subsequent posts. If your question was addressed to @rand, he pops in fairly regularly to offer positive support and useful advice to newcomers.

Thank you! I’m just now getting used to this forum. So much information everywhere.