Is it true that the more you use cold ice water in the early stages, the worse the symptoms will be? I have heard that Heat desensitization can minimize and, for some, actually cure the EM. Ice will just make it even worse.
“Why? I think because I did what anyone would do, cooled it off. Then I read that using ice or cold water is the absolute worst thing you can do. It didn’t get better, it got worse when I started doing that. It was like the rebound affect. (Think Afrin nasal spray, which, if used too long, causes a rebound affect, making stuffy nose worse than it was.) In this case, the more you know… If I were you, what I’d do is pay attention to triggers. (Certain alcohol drinks for me–esp white wine!) Heat, fever, etc., will cause a flare. BUT…like others who have done the hot water protocol, I have done the heat exposure protocol–and it works. (I don’t use hot water. I don’t think it matters how you apply the heat. I think it matters that you get it in some”.
This is user on the EM-group, and he is quite spot on here. This is my excatly same thoughts too, Ice will just make it worse at the end.
Continually icing likely does cause a rebound effect. Unfortunately, if the discomfort is too great icing can be the only out. I iced until I found medication that stopped the flares from occurring.
Whats your take on heat desensitization? Like I have wroten, my EM is mild, no pain or so, only uncomfortable, especially in the summers. And after reading some stories on the “Bob Protocol-method”, and the sucessrate at different EM-groups, it looks like a miracle treatment, and it works on quite many people who tries it too.
I’ve never had to do it, but I think there is obviously something to it. Research has found tissue temperature in EM affected areas is markedly lower than normal when not in flare. This may paradoxically be what causes some flares to initiate in the first place, making them in essence a rebound effect. Regular warming of the limb may void or help break this cycle, providing temporary relief.
I know that when my feet get cold (in the winter) that I will flare. I think that there is a blood rush trying to warm my feet and then I’m in a full-blown EM flare.
I can confirm this. I had the hunch that mine was the reactive hyperemia form due to the same medication helping my sister’s raynaud’s. I now always wear socks and use a space heater near my feet when at home. I just spent 2 days in NYC and was on my feet all day walking around (from like 10am to 11pm) in normal footwear and had no problems whatsoever which was a relief. I am hoping that with a more refined treatment plan that I can work it into remission and sustain it with daily medication.
My affected areas still get cold. In fact, they tend to vary from modestly cool to cold as a corpse. Without medication the areas would never stay cold. With medication the tissue temp just seems to plunge and stay there.
My feet also seem to be very cold at baseline even though different medications work for use. It seems to be warming that causes the flare and then they are a normal temp after that. Do your affected extremities warm up with exercise, or still stay cold while working out?
Affected areas temporarily warm up with exercise, yes. The thing that is unusual about me is that my symptoms are not entirely (or even primarily) in the most distal portion of the extremity. My feet are affected to a lesser degree than my knees. So I end up with this bizarre pattern where my knee (basically the entire anterior surface) is ice cold, with the area below that (tibia/fibula/calf) a normal, warm temp, followed by a cold foot. It’s very strange to have a proximal portion of a limb be substantially colder than a distal segment.
In short, mexiletine stops the erythema from occurring but leaves the disordered temperature regulation. That may point to the disordered temp as the stimulus and the erythema as the response.
I take mexiletine, which is a sodium channel blocker. Primary erythromelalgia is linked to gain-of-function mutations in the SCN9A gene, which encodes the Nav1.7 sodium channel.
Hi there! It looks like you’re getting a lot of responses but I thought I’d include my two cents:
As I’m sure you’ve discovered cooling the symptoms with ice or cold water can make it worse, and with time it gets harder and harder to treat the flare.
I soak my feet in hot water almost every day, especially during winter (for whatever reason my EM is worse during winter). When I’m in the middle of a flare, I turn on hot water in my tub. I then just go about doing normal activities and allow my temperature to regulate itself instead of propping up my feet somewhere. If they continue to flare I’ll do this a couple more times. But eventually, the flare will be finished and I’ll be good for the rest of the night.
I can’t say this is a “cure” but I think my flares are much less intense and aren’t sparked as easily as they used to be. Keep in mind my flares were never fully debilitating—so I wouldn’t recommend this to someone who truly needs medical attention.
I also try to work out and move as much as possible and push through the discomfort if I can. I’ve noticed this does help—and on days I’m especially active, I don’t need to soak my feet too much. My personal goal when it comes to EM is learning how to function without it slowing me down or changing my lifestyle. I still experience pain for sure—but I think if we start seeking cooling agents or start becoming sedentary as “quick fixes” we can make the overall issue worse which will in turn negatively impact our mindset anyway… there’s my rant lol
So you wouldnt recommend the Protocol-method, unless you have severe symptoms like burning and pain? I too get flares, but they are quite mild, and they “only” turn red and very heated, but not any pain or so. So I am very curios on that method, because my summers is so uncomfortable with the swelly veins and redness over all the foot.
When that its being said, compared to others, I can live normaly, and I can workout, and I can shower in hot water(even if the toes turns red). But as soon as I get overheated, it gets annoying.
anyway… there’s my rant lol
