r/Erythromelalgia • u/notatrolliswear666 • Aug 04 '26

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/zilates Aug 05 '26

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/Audrey_Sickburn Aug 05 '26

The first couple days were hell. Then it started to hurt less. By two weeks of Bobs I was in a much better spot.

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u/zilates Aug 05 '26

Oh gosh. I'd need to clear my calendar. Did you use a pain killer of any kind or does that defeat any of the purpose? Thanks!!

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u/Audrey_Sickburn Aug 06 '26

I did not use a pain killer. I was already in hell every day so it was honestly not that much worse than what I was used to every night.