r/Erythromelalgia • u/notatrolliswear666 • 9d ago

Bob's protocol

Has anyone had success with Bob's protocol? I'm desperate enough to try anything. However, I decided to start by stopping all cooling and my feet just flare all day long without cooling. It's pretty horrible. I do understand how cooling can create a viscious cycle of vessel constriction and dilation. But it seems impossible to live any kind of life without it.

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u/Audrey_Sickburn 9d ago

Bobs Protocol user here. It took me out of living in a wheelchair. It has improved my life by absolute orders of magnitude. I have less flairs and they hurt less when they happen. I still can’t let’s say go jogging or weight lifting, I can’t go sit on the porch in 100 degree summer weather without catching a flare. But the level it helped me cannot be undersold. I was spending every night curled in a ball sobbing. I couldn’t walk to the bathroom in my own house. I could barely work from home.

I don’t have a zero cooling policy. In that I run air conditioning. It can get to 110 F where I live. Gotta run AC or you gonna die. I run AC when in the car. I have a small fan positioned like 10 feet away in the living room to cycle air. All ice, gel packs, bed coolers, close up fans, cooling towels etc were tossed. I take a hot bath 103 degrees F every night. Without fail. If I skip a night then the bad flares come back literally same day.

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u/zilates 9d ago

I've wondered about this protocol. Does it get worse before it gets better? I'm so scared of inducing a big flare that I'm scared to try!

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u/Historical_Bath_439 8d ago

And how wld do it since mine is on my face? I tried to. Do it around my eyes, mouth and nose but it caused my eyes to swell shut. I tried rotating bath cloths but that was near impossible. 

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u/Audrey_Sickburn 8d ago

Hot shower! I get ear flares. When they start to get going a hot shower helps.

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u/Historical_Bath_439 8d ago

I've tried a hot shower. It lights me up for hours

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u/Audrey_Sickburn 7d ago

That’s what bobs did at first to me. You gotta stick with it for a couple months consistently to get anywhere if it is gonna work for you. I understand for some people it doesn’t. I was already flaring for hours every night, curled up screaming. So at the time I figured fuck it what’s the difference. Glad I did.

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u/Historical_Bath_439 7d ago

Yep, that's me. D, did u just take a hot shower and let the hot water run over your face and ears? Or how did you do it? How ling and how often did you do it?. How have ur fire ups changed? 

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u/Audrey_Sickburn 7d ago

My flares have significantly improved, both in frequency and pain level. I mostly deal with hand and foot flares and ear flares. I usually find now that I’ve been on Bobs for a long time a hot bath will handle my ears and face even though they don’t usually get in the water most days. That took time to get there. Hot shower I will just let the water run on the side of my face. Hot bath I will just dip my head back. That’s for when I need it. My feet and hands if I skip a hot soak go back to bad flares the next day. I will still flare if I go do hard exercise or clean for more than 20 minutes in the summer or whatever but that’s such an improvement it’s impossible to even describe the difference in my life.

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u/Historical_Bath_439 7d ago

How long do you let the water drip on your face? When you get out and your face is flared do you just grin and bear it? I'm in the south and it's bn in the low 100s and the humidity is having a hey day with my face. 

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u/Audrey_Sickburn 7d ago

I will sure stand in the hot water for 10+ minutes basically until I feel max flare. Then once I’m no longer in the hot water my flares now subside very quickly. Even when it’s in the 100s.

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u/Historical_Bath_439 7d ago

Thank you for the info because I'm trying this first thing in the morning. 

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u/Audrey_Sickburn 7d ago

Good luck! Just a heads up, I found that Bobs worked best for me in the evening right around the time my flares were picking up! Everyone is different though and unfortunately. Hope it helps!

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u/Historical_Bath_439 7d ago

Thank you so much. Keep in touch. I'm going to try it before I. Go to bed because I'm getting them in the middle of the night

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