EM DISEASE-health

EM DISEASE

Paula CoreyJanuary 22 at 12:59pmBob Bartholomew’s ProtocolI was able to put my Erythromelalgia in remission! You'll find below a description of how I did it, but in the interest of being thorough, allow me to disclose that I'm 39 and in perfect health otherwise. For most of my adult life I have eaten a natural, whole foods diet and have exercised multiple days per week. My body fat is under 10% and my resting heart rate is in the 40s. My blood work is so good that it makes my doctor's toes curl. I don't say this to discourage those with other conditions from trying what I describe below, but only to temper feelings of despair if the treatment described here doesn't work for you in the presence of multiple health problems causing or otherwise attending your EM. I'm probably the ideal subject for such a treatment, but I have definitely heard of cases of similar plans working for those with EM secondary to some other condition. That said, I sincerely think everyone should try this as it seems to me to be safe, without any likely long term negative consequences. Of course, I'm not a physician, and so you might run this by your own healthcare team before attempting it, especially if you have myriad conditions attending your EM.What I did:1) On 3/18/17, I stopped putting my feet under fans and/or in cool water to stop flares. Instead, every night before taking a hot shower, I put my feet in two buckets of warm water for thirty minutes, after which I took a hot shower. For the first month of treatment, I used water around 97-100 degrees; after the first month, I gradually raised the temperature weekly until the water in the buckets was 109-110.2) After the hot shower, making sure my apartment was at around 76-80 degrees, I forced my body to recover on its own without any aid whatsoever. I lied down on the bed until the flare was gone and then applied copious amounts of lotion. At first, the flares took hours to subside; now, I don't flare any more than a "normal" person.3) At about the 7 week mark, I added 30-40 minute walks midday with socks and tennis shoes on. After the walks, I kept my socks on and forced my feet to recover.Don't get discouraged if you don't see results after the first few treatments--give it a week before quitting. Slowly, day after day, if you're like me, you'll see improvement.There are likely many "right" ways to do this sort of heat desensitization, so feel free to "make it your own."As of 1/19/18, I no longer flare, and I can wear normal footwear in all conditions. The greatest improvement came within the first 4-5 months of performing the steps outlined above.This treatment seems to reset the body's interpretation of heat so that when you are engaged in “normal” living, your body doesn't overreact to normal heat/friction/use. The key is to do this treatment every day—make it a part of your daily routine.

SOURCE:https://www.facebook.com/groups/SupportErythromelalgia/

Bob is in this group. Many of us have tried it, many ppl report that their EM is better but not in remission, while others report no change. Can't hurt and might help you to try it.

Interesting. Thank you.

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I'm working up the courage to try this.

Let me know how it goes when you do!?

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I do it at a lower level. I just keep socks and boots on very shortly after my shower and wear them all day and night and then socks to bed. It really makes a huge difference for me. I didn’t do this the other day and my soles were so uncomfortable. Just keeping them as warm as possible all the time is better than them heating up from cold

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I’ve done, I helped a lot, didn’t get me into remission but I’ve able wear close shoes. I stopped because holidays and stuff and started last night again

Keep me posted, if you would! I'm very interested to hear how this works.

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I’ve been doing it since July. I’m not cured but my life has significantly changed for the better. I’m so glad I tried this.

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I’ve tried it, but it made me worse - BUT I’m much better after not cooling my feet much anymore. No water or fan. I try to keep my feet at an even temperature, for example using heating soles in my shoes in the winter.

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Use the words bobs protocol in the search box here in this group at the top of the page and you will find all of our many posts and comments on this, including bobs own post. It’s been a miracle for me.

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Worth trying for sure. I need to do it with my feet and hands.

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What I don't get is that originally we were wearing shoes and socks. My feet were always hot and sweaty as a kid. But not painful. Something (in my case a reaction to Lexapro) set us over the edge and the heat and burning started. But I wore shoes and socks up until I couldn't. Actually I'd wear thin socks to customer meetings for years after getting EM, but often would get flares. There must be something in taking the temps to a higher level than just shoes and socks that is making this difference.

I think it’s because we slowly keep using cooling devices to ease the pain and eventually we are keeping them too cold and we have to ween back off the cold to more normal temperatures..

Yep, for the 1st 5 years I had EM I could soak for 20 minutes once a day and it would usually calm my late evening flare and I'd sleep through the night. Now I'm up almost every night at least once with another flare. Course it always flares under heat or exercise.

greg6 you mean you were soaking in cold water? Bobs protocol is soaking in HOT water.

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Yo me baño todos los días con agua muy caliente, y nada. Si paso del frìo a una habitación caliente, mis manos empiezan a arder y ponerse rojìsimas. Lo mismo cuando hago ejercicio o comida copiosa. A mí o me funciona.

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I also have Raynaud’s and POTS (among many other things). Hot showers are my nemesis now unfortunately.

Mostly feet. Hands sometimes. I think it’s happened in my ears and knees a couple times.

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