Erythromelalgia / Raynauds

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.

 

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!

 

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.

 

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.

 

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.

 

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")

 

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.

 

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!

 

@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!

 

@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.