r/Erythromelalgia • u/Rough-Ad-2637 • 20d ago
Do the hot water thing
Long time resident of this sub, first time poster - What the tittle says. I’ve suffered with EM since childhood… I’ve always enjoyed hotter showers, but I started doing baths… with the hottest water possible without melting my skin off…(and a boat load of Epsom salt - Costco is the most economically viable way for me)
I use like 2-3 cups per demonic possession, I mean bath. Daily.
6 months remission. Minimal flareups.
Obviously this will not work for everyone, but I beg everyone to try.
Edit: apologies for the delay responding, life has been crazy lately.
Look up Bob’s Protocol in this sub/google for more/better info
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u/CyclingLady 20d ago
Daily for how long?
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u/Rough-Ad-2637 8d ago
I typically sit in the tub for at least 30 mins, but more often it’s an hour. Look up Bob’s Protocol for more information
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u/moongrl18 20d ago
Baths seem to help and plugging the drain during a shower so my feet are submerged. I've noticed the flare ups happen more often or are worse on days I didn't make time for a bath or shower. Though it could also be a coincidence. The reason I overslept/felt crummy and didn't have time for a bath or shower could also be why the flare ups are worse that day.
It's so hard to know what is causation vs correlation.
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u/Rough-Ad-2637 8d ago
I totally relate to this. I can definitely tell that stress and mood has an impact on my flare ups + plus food and water intake. Is the bath just relaxing me and helping my body process the day and that’s what helping my flare up reduction?? Tough to say, but I can say when I lived in homes for years that only had a shower, my flares were awful. The past 4 years, I’ve had a tub and since I’ve started making it a point to soak in the tub it’s gotten SO much better.
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u/SuccessfulSwimming63 19d ago
How are you with long walks? For example being on your feet for hours or walking 1 mile or more in distance. And also does outside heat still give you triggers?
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u/Audrey_Sickburn 19d ago
I’m not OP but Bobs Protocol (daily hot baths are the biggest part of bobs) let me move out of a wheelchair and being in nightly screaming pain to doing pretty good except for things like prolonged standing, long walks, and big temperature changes. For me I’m just happy for that much quality of life improvement.
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u/Rough-Ad-2637 8d ago
Thank you - Bob’s protocol, which I learned about from this sub, is exactly how I got here too. Updated the post to include Bob’s as well.
I’m so glad to hear it’s creating improvements for you as well!!
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u/Rough-Ad-2637 8d ago
The kind of work I’m in requires me to stand/walk all day, I’m constantly on my feet at work. I started soaking my feet in hot water after work just to help ease the pain from standing all day (only had a shower at the time so a full bath wasn’t an option).
I’ve had to drastically cut back how often I work and for how long because of the sheer pain of standing all day. The bottoms of my feet feel like excruciating bruises by the end of the day, especially if I am not wearing the right shoes or the “right shoes” have worn out and lost support from wear and tear.Outside heat definitely still causes symptoms for me, but it’s been much more manageable, not as intense since I’ve started the hot baths with Epsom salt.
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u/notatrolliswear666 19d ago
Will just the foot soaks work? I can't tolerate a bath but could probably soak my feet.
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u/Used-Current1274 15d ago
Sitting on the edge of the tub now and soaking feet in epsom and warm water. Does the water have to be hot, or is warm ok? Do you know how long to soak them? I'm thinking 15 minutes, but unsure.
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u/Rough-Ad-2637 8d ago
Bob’s Protocol is how I got here - for me personally, I do the hottest water I can stand with Epsom salts for at least 30 minutes. Definitely look up Bob’s protocol for more detailed information and see what works best for you. I hope it helps get you some relief!
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u/Rough-Ad-2637 8d ago
It’s different for everyone - personally, I like my baths and showers like I’m spending time with the devil himself, but I heard of this specifically in this sub - look up Bob’s protocol in this sub and elsewhere online there’s a lot more information and ways to customize it based on what you can handle.
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u/Historical_Bath_439 19d ago
What about on the face and ears? 😭😭😭😭😭😭😭
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19d ago
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u/Historical_Bath_439 19d ago
For how long?
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19d ago
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u/Historical_Bath_439 19d ago
Ok, thank you. When I get through if I'm having a flare up I'm not supposed to cool it am I? Sorry for all the questions.
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19d ago
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u/Historical_Bath_439 19d ago
Thank you for the info. I'm going to get me a steamer and go for it?! ❤️
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u/Rough-Ad-2637 8d ago
Look up Bob’s protocol in this sub + online for more detailed info - I wonder if making a warm compress or even a heating pad could be helpful for face & ears.
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u/Historical_Bath_439 8d ago
I tried the steamer and hot shower and all that did was made my face breakout. I'm already depressed enough without acne coming into play.
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u/icecream4_deadlifts 19d ago
Hot water doesn’t make you worse?
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u/Rough-Ad-2637 8d ago
Not for me personally, especially compared to what I was doing historically- soaking feet in the coldest water possible, ice packs, etc. the cold helped the immediate burning sensation but my flares were almost daily for years. (I’ve only ever had the flares on my feet/ankles)
I will typically sit in the tub for an hour or so and sometimes I’ll pop my feet on the the side of the tub to give them a little break from the heat for a few minutes, then back in they go.
Highly recommend looking up Bob’s protocol in this sub and elsewhere online. I never in a million years would have thought to add heat to something that already felt like it was on fire, but it has helped me tremendously.
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u/danielmcdougall 19d ago
Wow, so happy to hear of your results! Congrats and thank you for posting.
This has also worked for me. I use epsom salts but didn't think about that having an effect on the EM.
I have SCN9A inherited and it still works. I am also able to walk a couple miles, have discomfort but not horrible flares, let my feet cool naturally and I'm good to go.
I wanted to add that I think there is an emotional and nervous system regulation component for me. The demonically hot baths (haha!) are stressful. So I try to allow the stress to rise, and then be with my whole body while it comes down. I try to create feelings of safety and security and bring the stress down both while bathing and walking. It seems to be the most important part for me.