tag:blogger.com,1999:blog-22576999.post6952488549060306830..comments2024-03-27T14:05:22.815-04:00Comments on Live With ME/CFS: Heat Desensitization - Erythromelalgia in Remission!Sue Jacksonhttp://www.blogger.com/profile/14532098225905355332noreply@blogger.comBlogger8125tag:blogger.com,1999:blog-22576999.post-80694941598098353052023-07-12T12:59:28.983-04:002023-07-12T12:59:28.983-04:00Hi -
Yes, it's been a permanent solution! I ...Hi - <br /><br />Yes, it's been a permanent solution! I wrote this post 6 years ago and my EM has mostly remained in remission. Once in while during winter (when it used to be the worst), I will feel my toes begin to tingle a bit - then I just do a hot water soak (just while I shower often works), and it calms down again. Try wearing warm slippers with the socks (I know that sounds awful if it's summer where you are but it should work!). And did your hot water soaks get up to about 115 F or so? Don't go over 120 or you'll scald the skin, but hot does work best. Hope that helps - let me know how it goes! <br /><br />SueSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-89654279679470346582023-07-11T18:00:40.848-04:002023-07-11T18:00:40.848-04:00Hi Sue! Wondering how you're doing with your E...Hi Sue! Wondering how you're doing with your EM now - did this treatment end up being permanent for you? I'm 2 months into a heat desensitisation for *mild* EM and am not quite sure whether it's working yet... Think my problem is my feet are getting cold walking on stone floors, even with socks on. But anyway, how are you with EM?Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-22576999.post-45045811203122177352022-12-21T10:34:27.216-05:002022-12-21T10:34:27.216-05:00Cruzgirl -
Oh, interesting thought!! I'm not...Cruzgirl - <br /><br />Oh, interesting thought!! I'm not sure it would work. EM is mostly due to a dysfunctional nervous system, while hot flashes are a hormonal thing. But, of course, hormones are linked to the nervous system, so it could work ... ? If you try it, let me know!<br /><br />SueSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-25445018151923157012022-12-20T21:56:57.887-05:002022-12-20T21:56:57.887-05:00I wonder how this would work for chronic over heat...I wonder how this would work for chronic over heating and or hot flashes?cruzgirlhttps://www.blogger.com/profile/03883318308174753240noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-16646174968835228232018-10-23T13:52:12.757-04:002018-10-23T13:52:12.757-04:00Sorry for the delay in getting back to you - I had...Sorry for the delay in getting back to you - I had a couple of bad days this weekend. <br /><br />I never really had sores - just red, burning pain in my toes & feet.<br /><br />Yes, I would try heat desensitization - it seems to be the only thing that can actually cure EM. It works by "retraining" our nervous systems to respond normally to heat. As backward as it sounds since heat FEELS worse at the time, keeping our feet cold actually makes EM worse over time. Start with water about body temp & just soak for 5-10 min. Work up the temp a little at a time (never above 120 F) with 10 min soaks a few times a day. You should start to feel better in a day or two and then gradually improve until it clears up completely. Last winter, my EM started to flare up a bit again just 2-3 times - at the first sign of that burning feeling in a toe or two, I just did the hot water soaks again for a day or two & then it went into remission again.<br /><br />Good luck! Let me know how it goes, Tammy!<br /><br />SueSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-71131963420482289412018-10-20T07:57:35.527-04:002018-10-20T07:57:35.527-04:00Hi Sue! Your experience with EM is similar to mine...Hi Sue! Your experience with EM is similar to mine. I get the first signs in the fall when I start using blankets. All summer when it's mild and I can sleep with just sheets,all my sores heal up. But now they are coming, starting on my big toes. The sores are what cause the pain. I get flaring in the summer from heat, but no sores. Do you have any advice for preventing or healing sores? Do you think the heat treatment would work for them?tammyhttps://www.blogger.com/profile/05272185423568883851noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-37785416596641263912018-02-23T14:04:58.451-05:002018-02-23T14:04:58.451-05:00Hi, Caz -
Glad you found this helpful! I was so ...Hi, Caz - <br /><br />Glad you found this helpful! I was so surprised to see your blog post that you have EM, too! Sorry :(<br /><br />My friend who put her Raynaud's into remission (hers was in both feet and hands/arms) is in the medical field (a vet) and didn't even know about the studies on heat desensitization for Raynaud's - she just figured it out for herself. She said she dressed in shorts and a short-sleeved shirt (don't know if that part is necessary!), went outside, and soaked both hands and feet in buckets of hot water. Did that each day, and it went into remission! Pretty much the same process as is used or EM by many patients. Definitely worth a try - it is such a relief to get rid of these painful conditions! Good luck - let me know how it goes!<br /><br />SueSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-24512616022232527962018-02-22T11:40:43.719-05:002018-02-22T11:40:43.719-05:00Thank you so much for sending me the link to this ...Thank you so much for sending me the link to this Sue, it's a fantastic post and really quite eye-opening as I've only just discovered EM. I'll have to read into heat desensitization a little more and see whether this is something that could help in my case (with Raynaud's as well). I think what frustrates me more than the 'flares' with redness and itching is how unbearably cold I am all the time, though it's often with my arms and hands (which I think sends a message to my brain saying I'm freezing, when my core temp is probably rather high given how many layers I always have to wear). Not fun at all, as you know, so I'll be giving this a try. Thank you for writing this! <br />Caz xInvisiblyMehttps://www.blogger.com/profile/01905149852062297978noreply@blogger.com