That is very very brave to sit in a hot tub ! Oh my ! I am not sure that my body could handle that kind of heat all at once.
Perhaps try the bucket slowly with just luke warm water to start? Only the parts that flare feet, hands is what I do.
Then increase the temp of that. I am not even sure I could do the hot tub at this time. I do follow the soak with a nice hot shower though but that’s as far as I go.
Thanks for the reply, rayofhope, I greatly appreciate it! It’s very interesting to me that you got relief via ‘Bob’s protocol’ when you didn’t from vasodilatory meds.
You are very brave to try such a thing … I’d have to mentally prepare for it to be sure.
I’ve just joined the fb group, thanks for bringing it to my attn.
I am working up my courage to try this - I know I will do it - just have to be sure I’m all in before starting. I found an article about desensitization therapy for crps - I imagine the theory is the same for EM.
https://rsds.org/complex-regional-pain-syndrome-crps-treatment-desensitization/
I am not in any of the private facebook groups, Otherwise I would nods
So sorry if missed something, I did search on the facebook sites and I was able to read others experiences with the protocol but I can’t find an actual protocol. Is there one written out? And how can I get it, Tha KS!
I had the same trouble - it is saved in “Files” at the top of the group page
Couldn’t this same principle be applied more precisely using a capsaicin dose such as Quentza, the 8% capsaicin patch? Erythromelalgia is caused by hyperactive cutaneous nociceptors, in some due to mutations in NaV 1.7 voltage-dependent sodium channels. There may be therapeutic benefit exposing said receptors to aggressive stimuli. This would explain published reports of capsaicin being beneficial to some erythromelagia patients.
Because I respond favorably to a sodium channel blocker and have controlled symptoms, I can say unequivocally that the use of elevation and cold are best avoided. They do cause a rebound effect. One of the fews things that can still provoke a flare in me is if my legs have been elevated for a period of time and I then stand upright.
Yeah I had a similar thought re: the capsaicin. I’d be a little scared that I’d do damage to the blood vessels/nerves if I tried to do anything myself with hot water or what not, or give myself blisters, or try anything involving my face. I’d probably feel more comfortable talking to my doc and seeing if we could recreate “bobs protocol” in a safe way, like with capsaicin or something else. Maybe there’d also be a painkiller / analgesic that could help me handle the capsaicin haha. I haven’t read too much about capsaicin on the forum.
I get severe rebound rxns too. But also in the other direction: if I come out of a shower/warm room into a regular room, my extremities immediately freeze. This is not such a big deal except that I know I’ll have a horrible flare later when my blood vessels bounce back on their own. So I’d be concerned with actually getting out of the hot bath, or whatever.
I asked my doctor, a Physical Medicine & Rehabilitation specialist, if the theory behind the protocol is the same as capsaicin. This was his reply:
Capsaicin has a different mechanism - depletion of the pain transmitters in the skin and peripheral nerves
It’s cheap, but spending 20 hours a month soaking your limbs in hot water is not an insignificant time commitment. For individuals without an affinity for long baths, that still seems burdensome.
What happens if you miss a day? Has anyone who has tried the protocol stopped soaking for a week or more to see what would happen? If yes, does improvement hold even when stated treatment is withdrawn or did the individual revert to their prior state?
Hi Carter,
I’m 4 weeks on this protocol now and I’ve cheated sometimes, missed a day. The flares are definitely increasing 24 hours after I had my last soaking. And when I eat a lot of sugar (more than one cookie), salt or gluten, the flares still come trough at daytime, even when I sit still. When I miss a soaking the flares (from eating or activity) come up with the strength of the time before I started this protocol. When I soak the flares that I have (which are almost none as long as I sit down and eat very healthy), they are one a painscale from 2 to 4. Without soaking, or when I miss one day, the flares are on a painscale 10 to 12. So it does make a difference for me.
I hope I will have some more improvement in the next months. I’m relieved that the continuing flares are gone and at night my feet are hot but not flaring as they used to do. But… I would do everything to get my active life back!
Greetings, Vlinder
My understanding is that the protocol needs to be continued for the improvements to be maintained - it is not a cure. Personally, I have not missed a day. I recall one person reporting that after about 3 days off protocol, she noticed increased symptoms. I do not know if this is true for everyone or, if like everything else with this disorder, it is individual.
I now soak just 20 minutes once a day and the improvements hold. I am more than willing to spend that 20 minutes soaking and reading a good book if it means I don’t have to spend hours sitting with my feet wrapped in ice packs elevated in front of a fan. Additionally, it’s just water - no drugs with all of their potential side effects.
This treatment has made such a huge difference in my quality of life. It has reduced my problem to something much more manageable and tolerable. Two months ago I would not have considered taking a trip to Disneyland with my family - last week I booked that trip!
Improvements:
Infrequent and greatly minimized flares
No discomfort at night - great sleep
No swelling/minimal flaring at gym
Can wear socks/shoes for the entire day
No need to elevate feet
No more fans, ice packs, cold packs, A/C
Can take a hot shower
I am so thankful that this protocol was posted on this forum. I feel like I have gotten my life back. And it’s just water.
That’s really great!
Question: When you take a hot shower now, do your feet still get abnormally red (erythema) and you simply can’t feel it or is the erythema absent?
I try to think of it as physical therapy. When you are injured you go to physical therapy and are there sometimes an hour. I soak 20 minutes followed up by a hot steamy shower for about almost 10 minutes. I listen to sermons during that time to help pass the time. It goes by fast. I refresh the water and make it now as hot as I possibly can. I did let 3 days go by just to see how I would do without soaking. Well it wasn’t too bad but then the showers started to bother me more pain wise. Also at night the burning was worse. So it is also a pain reliever doing the protocol. I started back up on day 4 realizing that I could stop doing it. The shower was more painful. But after continuing it for 3 consecutive days, I am back to where I was. If I skip one day which I had to when I was sick, I did not notice much of a difference. I think skipping a day here and there is ok and probably won’t do much although I read that others flared severely when missing a day. It’s trial and error. All of it. Start slow with luke warm water and then increase as time goes on every so many days or when you feel you can. Now when I soak if the water is not hot hot I get bothered by that and I increase the water to as hot as I can. I put a small bucket in my bathtub and sit on a chair. I also soak my hands in a smaller bucket and place that on my lap. I am constantly running the water to keep the temp in the water in those buckets the same. It is truly amazing that it works. I was scared to do this for months and kept following stories of others doing it. Seeing them wearing shoes and talking about their improvements and showing pictures is what made me do it. I am not cured. I still flare and I can’t wear shoes or socks and I don’t use the covers over my feet at night. But I am not burning alive anymore. I don’t have my feet elevated only before bed but I do recline most of the day. No fans attached to me ! No ice packs or cooling packs. If the burning gets too much I have a cool pack that is not refrigerated but left out and it’s cooler then other things to I use that to help it out. I have not turned my heat up in my house and I will be trying this as the summer approaches here where I live and it gets hotter by trying to sustain it. We shall see. But I am happy that my life has gotten somewhat better as there really isn’t a life when you have feet up in the air, fans on you day and night and not being able to leave your home at all.
Hot showers still cause my feet to turn red but there is no pain associated with it. Additionally, skin color returns to normal pretty quickly.
I’m similar in my improvements but still no socks and shoes, except for my hour at the gym on Wednesday. First time for that tho so that’s somethin 
oh still needing the air conditioner on at night though.
Have either of you turned the heat up in your house? As Bob did? It seems his is in remission. I have to wonder if we would be better if we did this. I was able to turn my heat up from 62 to 64. But I Have noticed it’s more tolerable when in other people’s home. I haven’t really gone out in one and half years other then to to the doctors being confined to the house. But I have gone to two homes and it was under 70 but warmer then my home and I did OK. A little burning under the feet and hands but I wasn’t feeling like I was going to pass out. Before I would. So, I have to wonder about this part of the protocol. Either way when it warms up here, I might try that and let the suffering happen while I am outside. Something I haven’t been able to do in so very long. Not sure what happens in the summer…
Hi Paula,
My progress since Bob’s protcol looks a lot like yours. I have turned the heat up for 2 degrees, but more is not possible yet. I have EM in my feet but my face heats up too with central heating. I think I can get used to it but it is a slow process. And I also wait for summer to see what happens. It is spring now in the Netherlands, but even a warm spring sun is unbearable for my feet. 
I really hope, pray that my feet can get used to heat outside. It is my worst nightmare that I have to stay inside for another year…
I did increase the temp in my house by around 5 degrees or so. I now have it at 70 during waking hours and it is very comfortable for me - that would’ve been horrible prior to doing the protocol. And I’m often wearing socks (although I go barefoot a lot too).
On another note, my family went on our Disneyland trip and it was fabulous! Incredibly, I was able to keep up with them all day long! My feet weren’t perfect but definitely manageable! I never dreamed I’d be able to do that again!! Feeling so blessed 
That is such wonderful news! So happy for you!!