I have Raynaud's as well. My doctor said that most people with EM have Raynaud's. Its sucks when you get off balanced. Most of then time when I'm too hot and my feet and hands are too cold I just get in the bath tub and let the water make everything the same temp. When my feet get too cold I have to heat them to cause a flare to get them back to normal. Moe said:
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
A belated reply about BioFreeze: I read on the PN chat board that Salonpas Deep Relieving Gel is stronger, and I agree. I've used it a couple of times for a flare, and it helped--once it actually turned much of the bright red on my foot to pink or white. I got it at CVS.
LibbyK said:
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.
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.
Thanks Miss Tizzy.Yes, I was thinking of that RA wax treatment just on finger tips- like putting nail varnish . Damn frightened that it will send me into a flare blitz . If i have to choose Ill have Raynaud over EM. Unfortunately like you I have both. Hmmmm. How to get around this? Need to defrost my fingers/toes yet not set my entire body alight .
You're so much more knowledgeable than me on EM, so forgive me if my ideas are only simple ones.
I get EM flares in my feet, but I also get similar flares in other parts of my body from psoriatic arthritis. What I've been trying recently is patting some water on to the affected parts and letting the evaporation take away some of the heat.
In the past I've used frozen gel packs, but if you have flares in a lot of places it is difficult for the freezer to keep up, and you never have enough of them. Also it's difficult to fit them to some parts of the body.
So the water treatment doesn't cool things down as much, but you can have some water by your bed and keep applying it as it dries. It does a good job of limiting how hot things can get.
So I have made this discovery that i feel helps keep me cool in hot areas, I went on a trip to a place that was 3 digits hot and needed something to keep me cool. i found this Towel called a cooling towel. you can find it in the sports section in and sports good store or even Target for $12.99 to $14.99...
I came across this towel that gets cool at the store the other day. There was one on the counter to try and I was quite impressed with how cool it got. All it uses is water and a few good shakes and it is pretty cold. I use it on my feet when they start to flare. It helps quite a bit with the pain. The website is:www.chillskinz.com The towel stays cold for hours. I purchased the large one.
These Amazon ones look great! Although I don't know what my podiatrist would think as over and over she keeps telling me not to get my feet cold. I keep saying if only! She doesn't listen or understand. I did tried a cooling pad for my feet like the one on Amazon, but I should have bought a larger size as my feet move in the night! Plus, I was a bit worried about the pressure on my ulcers, but I see they have ones with pillows that I hadn't seen before so maybe that might solve the too hard problem. Then I looked at the booties, also from Amazon and they look wonderful far better than sitting with my feet in freezer bags in a bowl of water! I was amazed that they are actually available in the UK. So, just off to order some now. Thanks for the links mads.
Ice flip flops are these flips with inserts for ice packs.
I was supposed to order them earlier, but I kept getting stopped one way and another. Anyway, I have ordered just one pair to see what they are like. The estimated deliver the earliest is 28th April, but I have often found with Amazon that they arrive a lot earlier than the estimated time. I will report back when I receive them as to how good they are for me.
mads said:
These Amazon ones look great! Although I don't know what my podiatrist would think as over and over she keeps telling me not to get my feet cold. I keep saying if only! She doesn't listen or understand. I did tried a cooling pad for my feet like the one on Amazon, but I should have bought a larger size as my feet move in the night! Plus, I was a bit worried about the pressure on my ulcers, but I see they have ones with pillows that I hadn't seen before so maybe that might solve the too hard problem. Then I looked at the booties, also from Amazon and they look wonderful far better than sitting with my feet in freezer bags in a bowl of water! I was amazed that they are actually available in the UK. So, just off to order some now. Thanks for the links mads.
Ice flip flops are these flips with inserts for ice packs.