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Thread: ideas along the lines of "warm room theory"

  1. #1
    Senior Member laser_cat's Avatar
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    Default ideas along the lines of "warm room theory"

    I have painful flushing ("neurogenic rosacea") of face (and sometimes hands) that happens every night (sudden onset). I know some others on here had/have as well, though I think we are in the minority.

    I am not even sure this condition is really rosacea (whatever "rosacea" means .... too many different subtypes lumped together??) but maybe a blend of autonomic dysfunction, erythromelalgia (painful flushing extremities ... hands/feet/face ... actually doesn't have to be extremities...), raynaud's, vasospasm, and other things.

    Anyway, there many people in the erythromelagia forums/groups that say following something called "Bob's protocol" has helped them gain quality of life back. Basically this is soaking your feet or whatever in hot water for ~30 min each day. Not everyone who attempted this protocol has gotten improvement. But it seems a good number have. It requires a couple of weeks (of increased pain). People seem to generally agree that provoking a flare is waay less intense than one you don't provoke (which is the case for me too).

    The idea is to presumably desensitize your hypersensitivity. The same idea can be applied to CRPS (complex regional pain syndrome) + Raynaud's. Informal links

    https://rsds.org/complex-regional-pa...sensitization/

    http://livewithcfs.blogspot.com/2017...lalgia-in.html

    http://renaissancehumans.com/raynaud...enon-disorder/

    https://consults.blogs.nytimes.com/2...-for-raynauds/ (scan for "Can Cold Acclimation Prevent Raynaudís?")

    Anyway, just throwing ideas out there. I don't think you can soak your face in hot water lol but you could modify it with warm towels or whatever.

    edit to add this link -

    http://www.livingwitherythromelalgia.org/t/bob-bartholomews-protocol/2953 (for her burning feet)

    I'm not sure if this approach desensitizes the pain, resets the body OR if it evens out circulation/minimizes hypoxia or what. Hypoxia + uneven O2 distribution is thought to be the common mechanism of EM -- even though the area is burning, the O2 isn't being properly extracted or whatever, and so the O2 isn't quite reaching its intended destination (my understanding, anyway). So your body keeps sending more and more blood to the area, and maybe makes more and more microvessels, etc. The medical community always cautions EM patients not to be too hot (may provoke a flare) or too cold (the cold will just damage the skin/nerves/cause rebound later) -- similar to rosacea advice -- so I think this strategy is interesting + def. applicable in the context of neurovascular (not so much inflammatory) rosacea.
    Last edited by laser_cat; 22nd January 2018 at 08:34 PM.

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    Quote Originally Posted by laser_cat View Post
    I have painful flushing ("neurogenic rosacea") of face (and sometimes hands) that happens every night (sudden onset). I know some others on here had/have as well, though I think we are in the minority.

    I am not even sure this condition is really rosacea (whatever "rosacea" means .... too many different subtypes lumped together??) but maybe a blend of autonomic dysfunction, erythromelalgia (painful flushing extremities ... hands/feet/face ... actually doesn't have to be extremities...), raynaud's, vasospasm, and other things.

    Anyway, there many people in the erythromelagia forums/groups that say following something called "Bob's protocol" has helped them gain quality of life back. Basically this is soaking your feet or whatever in hot water for ~30 min each day. Not everyone who attempted this protocol has gotten improvement. But it seems a good number have. It requires a couple of weeks (of increased pain). People seem to generally agree that provoking a flare is waay less intense than one you don't provoke (which is the case for me too).

    The idea is to presumably desensitize your hypersensitivity. The same idea can be applied to CRPS (complex regional pain syndrome) + Raynaud's. Informal links

    https://rsds.org/complex-regional-pa...sensitization/

    http://livewithcfs.blogspot.com/2017...lalgia-in.html

    http://renaissancehumans.com/raynaud...enon-disorder/

    https://consults.blogs.nytimes.com/2...-for-raynauds/ (scan for "Can Cold Acclimation Prevent Raynaud’s?")

    Anyway, just throwing ideas out there. I don't think you can soak your face in hot water lol but you could modify it with warm towels or whatever.
    Hi Liz!

    This is interesting to me! So, my roommate is dating an acupuncturist...and I decided to give him try a few days ago. Of course as soon as I arrived into his warm, stuffy office I flushed big time. He went ahead with the treatment and put a heating lamp on my feet. Unbelievably, the flare went away within minutes (which normally would be an hour or two of hot cheeks). When he came back into the room to remove the needles, I was like WTF was that all about?! He gave me a bunch of chinese yin and yang jargon that I did not understand fully, but he strongly encouraged me to heat up my feet when I felt a flare coming on and that this would "bring down the heat" from my face. He also said that in my condition, my deficiencies were promoting a "floating heat" to my face which often leaves the rest of the body cold. I actually experience this often, where my feet are like ice blocks and my body is shivering, but my face is on fire! I ordered a hot water bottle and I will be sleeping with this bottle in my bed near my feet to see if this helps with my flaring (I often flare/flush at night). All this could be complete coincidence, of course, but I thought I'd throw it out there since I experienced this kind of phenomenon you mentioned. I am going to continue to see this acupuncturist and I'll let you know if there is any interesting developments.

    Hugs to you!
    M.

  3. #3
    Senior Member Tom Busby's Avatar
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    In Asian medicine, they see a strong connection of the feet to the body/face/hands. The idea is the the feet are where the toxins are most evident, I guess due to gravity. A lot is lost in translation I believe, but the idea has much merit.

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    Oooooopsy....I didn't read the articles your posted until after I replied. I'm a dork! So, I'm not sure how much my post relates to what you were saying but maybe sort of??

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    Senior Member laser_cat's Avatar
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    Quote Originally Posted by MissM View Post
    Oooooopsy....I didn't read the articles your posted until after I replied. I'm a dork! So, I'm not sure how much my post relates to what you were saying but maybe sort of??
    LOL MissM it's all good I'm always looking for new ideas or things to try so I'm glad you posted. Yes, I was talking to a friend who is big on Asian medicine / acupuncture and she said something similar (something how they would want to encourage the heat to leave via the feet for us, or something along those lines). That's super interesting your feet can be cold while your cheeks are hot! Come to think of it, my hands and face often flare together (sort of an upper body thing), while feet are ok. But if I stand for too long or whatever, my feet can get red/hot very easily while my upper body is fine.

    I have this feeling that it's possible to "retrain" our body somehow ... (Have you heard of Wim Hof?) to have a more appropriate response to heat ... how to do that, I'm not sure!

    That's super coincidental you gave acupuncture a try -- I had 3 sessions over the past couple weeks myself! Lol. Great minds I hope it helps you, sounds like a good start so far! I too notice that I'm a bit calmer after the needles are in me for a while (granted, I'm propped up by several pillows!).

    @Tom Busby - Thanks for chiming in, yes I've heard that too re: the feet. They are also big on the ears in acupuncture, though the details are beyond me.
    Last edited by laser_cat; 15th January 2018 at 05:29 AM.

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    Interesting thread.

    I'd prob be scared to heat my face! But might be worth a try?

    Similarly my hands and feet are always cold but my face is always warm. I'm convinced this is something to do with circulation, my body is too busy pumping blood to my face so meanwhile my extremities get neglected. So I guess heating feet could be worth a try too?

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    Very interesting, there has to be something in this. I no longer sleep in a cool room, instead I keep very warm and my Rosacea burning has reduced, I still flush every night and for a long time, but the burning associated with it has reduced. I'm hoping to build up a tolerance to heat so my immune system doesn't go into overdrive.

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    Senior Member laser_cat's Avatar
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    Quote Originally Posted by Countrygirl View Post
    Very interesting, there has to be something in this. I no longer sleep in a cool room, instead I keep very warm and my Rosacea burning has reduced, I still flush every night and for a long time, but the burning associated with it has reduced. I'm hoping to build up a tolerance to heat so my immune system doesn't go into overdrive.
    I'm so glad the burning has improved a bit for you Countrygirl!! Reading stuff like that gives me hope xx I hope you continue to improve

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    Quote Originally Posted by Countrygirl View Post
    Very interesting, there has to be something in this. I no longer sleep in a cool room, instead I keep very warm and my Rosacea burning has reduced, I still flush every night and for a long time, but the burning associated with it has reduced. I'm hoping to build up a tolerance to heat so my immune system doesn't go into overdrive.
    I've also found increasing the temperature at night extremely beneficial for night flushing which makes the daytime easier too (I am able to tolerate hotter evening temperatures possibly due to RLT but that's for another thread).

    I suffer from VERY cold feet and ankles at winter to the point of pain. They don't go pale like I've seen people's hands go with Raynauds but I've wondered whether this affects my rosacea (this is one reason I've reduced my clonidine dose - again, for another thread!) I'll be interested to hear how people get on with this.

    Sent from my SM-G850F using Tapatalk

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    Senior Member laser_cat's Avatar
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    I'm curious what temp exactly you guys (Emz / Countrygirl) set your homes to at night? Thanks!

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