HI everyone !
I’m not sure if you have heard of “Bob’s protocol” and if you have not I suggest that you join facebook private forums for Em and on the search bar search “Bob’s protocol” so that you can read other patient’s stories about this and Bob who has EM who came up with this.
His protocol that he has tried he says has cured him. Others have tried it and it has helped tremendously and so after following stories for months, I decided to give it a try.
Basically, it’s soaking your EM extremities into warm water and then gradually making that water hotter and hotter as you go on. Yup. You heard me! Why on earth would we want to put our flared parts in warm or hot water when the heat sets it off? I decided to due to the stories of success I would try for one week and even if painful and in more agony which for me that was impossible, I would give it one week. So, I told my husband except the worst and don’t expect much of me for one week.
I started with putting in warm water 20 minutes a day and take away all your cooling sources…fans… yup take away the fans…cooling packs, yup those too. How on earth could I survive? I was literally hooked to a fan blowing on my flared red swollen feet all day and night. Stuck in 63 degrees temp. I am considered severe my EM. You are welcome to search me on FB Paula with Erythromelalgia and or Paula Corey and you will see how bad my flares are and the are non stop meaning no breaks.
So I soaked in warm water 20 min a day. Did it hurt ? Yes. Did I get swollen? Absolutely. Did it burn? Yes. I elevated the first two days and decided not to elevate and just sit in a recliner. I was using a zero gravity chair. No fans but I cheated the first few days only using almost an hour at night. I had so many pins and needles but everyone who tried this said to stick with it as those too would get better. I didn’t think it would work for me as I am so bad and that did make worse somewhat.
After three days, no more fans. I did not use cooling packs. I did not elevate, just normal recliner. I started to see normal color in my feet ! I couldn’t believe it and can’t explain it at all. Treat fire with fire? Yup.
Some have tried and either they say it didn’t work or they gave up after a few days. I told myself suffer…for a week…if it means a better quality of life. I stuck to my plan and guess what?
After one and half weeks I put my fans in the closet and said goodbye fan! I no longer use cool packs. I elevate before bed in bed for about an hour and early morning hours.
I used to flare after every meal. No matter what I ate. I should say the flare would get worse as I was always red and hot burning. Now I eat and nothing gets worse.
Do I still flare? Yes. But I see normal color a lot now while in the recliner and I have not seen that in over one year.
Do I still burn? Yes. But not half as bad and I still see red but I don’t get that hot hot hot I’m on fire and need to stick my foot fast on something cold feeling.
It’s a miracle. My quality of life is better.
I am in Mass so here it is winter and I am not sure what will happen in the summer. I had severe difficulty going out. I felt sick, I would get red flushing on my arms, feel like passing out with no air, and veins bulge and immediate flare. I am curious to see what will happen.
While I soak my veins bulge. I am on four weeks now and I do this every day no matter what and I follow it up with a hot steaming shower ! Yes you heard right. This coming from the girl that sat in a chair with feet elevated and only fast touching warm water on the bottom of shower. I enjoy a steam shower now for almost ten minutes so I soak about 30 minutes a day.
I listen to Charles Stanley during the soaking to keep my mind off the pain and burning and pricks. But it has gotten better and more bearable. I let it come back on it’s own. That’s the key. Let your body bring you out of the flare with no fan or cooling packs. It does happen. It never did before.
Feel free to message me if you want for more information or inspiration.
I do truly believe that this is worth a shot for everyone ! Will it cure you? Maybe Bob says it did him. Maybe if you don’t have it severe it will cure you.
I will be bringing this evidence to the researchers soon in the future.
What if all along we are treating this wrong? Then we are sending our bodies into a cold rebound effect and destroying ourselves even more by using ac, fans, cool packs, cool water soaks, etc.? Did I make myself so severe by elevating and doing all this to treat myself? I don’t have those answers but what I can tell you is that I am living proof that it has made my quality of life better. Not cured. Better. I will take better because my quality of life was bad.
Good luck and I hope that you will consider doing this. No pills. Easy to do. Just need to get through the first few days and then it gets easier and easier and once you see improvement, you will want to continue just like me.