I am new to the group and just learning about EM. I noticed on Amazon that there are a lot of Cold therapy products: booties, socks, foot wraps, and also something called "IcyFeet." Have you tried any of these products? Are any of them helpful for giving temporary relief to EMers?
Hi dancer mom.
I have tried a few things but I have yet to try Icyfeet. The one thing I know helps me is chilli pads. I have tried other things like the chilli pad but they didn't work as well. I never leave home without my Chilli Pads! If you try them just know that for them to work properly they need to be snug against your skin. if you try to just lay it on your feet or wherever you need it won't be of much help. You have to wrap it snuggly around your hands or feet. I use them on my arms and face too. you Just have to be creative. I wrap it on my arm and use a hair clip to hold it in place. Back when I was still trying to work I used a cooling vest and that just helps too keep your body temp down to hopefully avoid a flare but you have to walk around wet all day so its not always practical. If you try something else that helps please be sure to share with us. I am always on the hunt for new cooling products!
Thank you. I hope this helps,
Alina
Thanks, Alina!
Another vote for Chilly Pads! (I found mine at a Sports Authority. Dick's didn't have 'em.)
I filled two snack-size baggies with rice and I lay them on top of the Chilly Pads, which are on top of my toes, so that the pads are gently pressed against my toes' skin.
Completely worthless: water-based burn pads, Benadryl "cooling" spray
I don't know how bad your EM is, or if you are mobile at all, but when I do walk around, I always carry a little water misting bottle in my purse, (like ones that come in air travel container sets) and that is very helpful for milder flares when trying to be active. Also very useful in conjunction with a fan for worse flares.
Has anybody tried menthol cool-therapy gels? I think Icy-Hot makes some, but I haven't tried them yet.
I love the idea of rice in a bag to apply pressure when using the Chilli Pads! I know they have to be snug to be effective but I would always wrap them snugly to make them work. My EM is pretty bad so I almost never leave my home but I have used a spray bottle particularly for my face when I am forced to be out and about. I have tried Bio Freeze. It's like icyhot without the hot but it didn't help. it felt cool for all of a few seconds before my own body heat turned out to be the stronger of the two.
I bought a pair of these NaturaCure Cold Therapy Booties and they are pretty good. The gel packs stay in the freezer until you need it, then you slip them in the booties and put them on your feet. I've used them during the summer here in Texas (where it gets quite hot) and they are pretty good for instant relief.
The gel packs don't slip, but you can't walk around in the booties with the bottom gel packs in or they would burst. Walking around with the top ones in would work okay.
Hey guys, just wanted to let you know that I no longer sing the praises of the Chilly Pad... the container says the product is not affected by mold and that it should be stored moist... well, mine got a spot of mold started only a few weeks after I bought it. Humbug!
I've got a chilly pad, arrived yesterday. Thanks Alina for suggesting it.
I had trouble finding them in the UK, but in the end found some on ebay:
I like the look of IcyFeet, they look like they might stay on if you tried to walk about a bit.
My son's flares are confined to his ears, and he could not live without his "Chillow"! It stays cold 24/7. Since his flares are worst at night, it's perfect for him to sleep on. Looking for some alternatives to the "As seen on TV" version, since the inner lining bunches up and won't lie flat anymore.
I need to buy another Chillow.
I bought one but before I could try it my cat jumped on it and punctured it! Now that I know it will help I will be sure get another one . Thank you.
Take care,
Alina
There are a few preventative measures that I have to take on a regular basis that help with flare ups for me. I always have to constantly exfoliate my feet. Wearing sandals all summer (and winter) can cause some pretty ruff calluses, especially if you live in a dry climate. I moved to Minnesota about a year ago from Alabama , it has done wonders for my EM.
Also shave my legs at least every other day and use gel based moisturisers on them. I've used menthol gels mostly as a last resort, like when the power goes out. But when I do I use the one with the highest menthol percentage and a FAN. The fan is really the key When using menthol gels. Most of my flare ups are at night when I'm asleep, they get so bad that they wake me up. Mostly I sleep with wet towels around my feet and a fan just for my feet.
My EM is exponentially worst if I don't stay hydrated,I constantly am drinking water. I also don't drink soft drinks anymore. I noticed too many sweets can cause really bad flare ups. I hope those suggestions can help some of you get relief. As someone that was born with EM, me and my parents have tried several different options over the years and those have given me the most relief.
I've read many times that EM sufferers move to cold climates to help with their condition, but I just want to mention that my EM (on the milder side of the scale for now) is worse in MN and VT winters than it was in FL summer. Worse flares, more swelling, worse circulation. I think it is because my toes get very cold when they're not flaring, so a flare in winter takes my toes suddenly through a larger temperature range than a flare in summer. This is even if I stay inside all day. I am also prone to chilblains in winter, which are very painful (and last a few weeks, not one). Also, when I over-hydrate, my night flares get worse.
Man, do I wish EM were simple and consistent! My advice is, if you are able to travel, visit a cold climate in winter (for as long a trip as you can) before moving there. It may make things better, but it may also make them worse.
Showers are the worst! And they are a much bigger problem for me in wintertime. In fact, I think think showers are what causes my chilblains - I should probably make a post explaining that discovery. Socks don't make much difference - my toes still feel like ice until they suddenly flare with EM. Anyway, considering how my feet get so awfully cold in between flares in winter, my dream climate is that of San Fransisco.
Tizzy said:
...but it is horrible if I get in a shower that is even slightly warm - feet going through bigger temp range as you suggest . I wonder if I could knit toe warmers? Tizzy
It took a few months for my body (em) to acclimate to this climate. I wear shoes and socks now where as before I never wore socks. This condition does effect everyone differently. Both my sisters (were also born with em) can run on the tread mill for 30 minutes where I can go for less than 3 minutes. So it always have different triggers. I hope some of my precautions can help someone. And it may be different for people that are new to this.
LibbyK said:
I've read many times that EM sufferers move to cold climates to help with their condition, but I just want to mention that my EM (on the milder side of the scale for now) is worse in MN and VT winters than it was in FL summer. Worse flares, more swelling, worse circulation. I think it is because my toes get very cold when they're not flaring, so a flare in winter takes my toes suddenly through a larger temperature range than a flare in summer. This is even if I stay inside all day. I am also prone to chilblains in winter, which are very painful (and last a few weeks, not one). Also, when I over-hydrate, my night flares get worse.
Man, do I wish EM were simple and consistent! My advice is, if you are able to travel, visit a cold climate in winter (for as long a trip as you can) before moving there. It may make things better, but it may also make them worse.
Showers are a huge trigger for my son and he tries to avoid them at all costs! And he also mentioned to his rheumatologist at his last appt that his feet are FREEZING. She blew that off
Funny, all of this talk of freezing feet. I feel as if my hands and feet are either burning or freezing even one of each at the same temp. They are never normal. Earlier today my left foot was burning pretty bad and my right foot was freezing! I used my right foot to cool my left foot!
Just crazy!
Take care,
Alina
One thing that someone suggested to help with showering was to shower with your feet in a bowl of cool water.
Or what I've settled on doing, is to sit on the floor of the shower with my feet against the wall, out of the jet of water. I just bring them in to give them a wash.
Libby, have you been checked out for Raynauds? I live in Iowa and the winters are a beating for my EM and Raynauds rollercoaster. I get terrible chilblains and my brothers and my mom, who have it as well, get cold weather injuries in our home. We have Raynauds, which is the exact opposite function that EM is...it's a constant extreme of too much blood, then not enough. In the dead of winter, I have to stay in a 58-60 degree room to keep my facial EM from burning extremely, but I have to stay under a heated blanket to keep my core body temp okay and so that my Raynauds on my feet and hands warm up to reduce cold weather injury. I've lived in Iowa for 7 years, and every winter my flaring and flushing are tenfold worse, and so does the rest of my family's as we have genetic EM. There is no acclamation ability when you have the Raynauds component. I think that the Raynauds and the EM feed off eachother...Raynauds is considered an autoimmune problem...and I think my body responds to the EM by trying to cool down, and thus cooling way too much. Then it tries to warm itself up...and a horrible flare ensues. Do you have any healthcare or anyone to ask about the possibility of Raynauds?
LibbyK said:
Showers are the worst! And they are a much bigger problem for me in wintertime. In fact, I think think showers are what causes my chilblains - I should probably make a post explaining that discovery. Socks don't make much difference - my toes still feel like ice until they suddenly flare with EM. Anyway, considering how my feet get so awfully cold in between flares in winter, my dream climate is that of San Fransisco.
Tizzy said:...but it is horrible if I get in a shower that is even slightly warm - feet going through bigger temp range as you suggest . I wonder if I could knit toe warmers? Tizzy
Hi Moe, and thanks for asking. I don't have the classic blue or white color changes (but have the EM red during flares, obviously), so some doctors say I probably have Raynaud's anyway, but other doctors (including the rheumy who diagnosed my EM) say that Raynaud's is over-diagnosed and that if I don't have the classic colors, I don't have it. They aren't all on the same page, so I don't know what page to be on, haha. At any rate, it sounds like what you and your fam experience in the winter is akin to what I have been going through, and if it's not technically Raynaud's, it's definitely very similar. I just can't find balance in the cold months, and my flares are absolutely more extreme this time of year. Any tips you have for dealing with this combo are very welcome!
Moe said:
Libby, have you been checked out for Raynauds?