Winter is coming- how do you cope?

I survived the summer and a trip to Florida that including walking a lot (mainly on the beach with feet in the temperate ocean), and entirely in sandals otherwise. I have found that I'm really only comfortable in shorts or a skirt and a t-shirt, and I wear sandals with open toes when I have to wear shoes. BUT- winter is coming and I live in Ohio. Inevitably it is going to snow. As it is now, I tend to avoid going out of the house much when the temperatures are too warm or too cold. I've found that my overall skin temperature, especially when I'm flaring a lot- as I have been since the weather started cooling down- is definitely warmer than it has been, and lately I believe it has been fooling my internal body into thinking I have a fever- resulting in my feeling like I have the chills as if I have a fever. Needless to say- this internal "chilling" sensation combined with my feet exploding in evenings and my hands at various times, and many other parts that suddenly feel on fire, has virtually turned me into a hermit. I took my youngest son who is 6 to an early morning double-header football game his team was playing in and with temperatures in the 30s, I decided to wear jeans and my old boots and when I got home, was in some of the worst pain I've had in a long time- and the flare extended the length of both my entire legs, and resulted in the renewing of the rash on my toes that I had when I first was diagnosed with EM... I've also been experiencing uncomfortable warmth of my torso lately that at times after my kids go to bed, I sit around without a shirt on... LOL My husband has been pretty understanding about a lot of this, but he gets annoyed sometimes and doesn't seem to understand that the heat of his hand on my back at night to just rub my back is so uncomfortable, it's as if someone just pointed a laser at wherever I feel warmth. I'm hot, cold, hot, cold- and I don't know how I'm going to survive winter... :(

Thanks everyone- I know you all will understand...

Due to living in Southern Louisiana the summer is worse for me. I am anticipating the cold damp grass under my feet at midnight, two am… The nights & early mornings r worse for me I have a bedtime ritual- I put my feet in cold water, ice water if its really bad, then cold lotion massage on my feet. I am fortunate that most mornings my husband massages my feet with cool lotion. I am 47 yrs old & can remember having this all my life. I was about 10 when I started putting my feet in ice water. My Mom says that as a small child I never liked shoes or socks. I still don’t. Prayers for all my fellow suffers. God Bless

I live in Memphis and do well as long as I can wear open-toed shoes. Winters are very hard. I've found that Birkenstock and socks work well until it gets really cool......

I’ve found so far the only way I can tolerate socks is to put the Ketoprofen gel on I was given, then socks and sandals, I’m hoping that will work when it snows and I have to wear boots, but I know I’m going to struggle to motivate myself to go out at all… I don’t want to end up a hermit, it’s very isolating during those times and I already have seasonal depression…

This may sound like a silly question, but are you sweating? I had the same problem with heat, and my hubby couldn't even cuddle me in bed because it would burn so badly wherever he touched me and then my feet would flare. My neurologist prescribed Mestinon for another condition, and one of the side effects of this drug was that it increased sweating. Now, I am much more tolerant to touch, and heat in general, and have seen a lot of improvement in my feet. (They still flare, but not as frequently nor as badly.) Before using the Mestinon, I didn't even realize that I wasn't sweating.

wow, I honestly feel like I could have written this post myself. Just add the face and I have the same issues. I live just south of Lexington, KY and we probably frequently experience the same weather. I was looking forward to cooler weather and will wear sandals when it is 45 degrees. But the temperature changes and barometric changes will set off the Raynouds or the EM several times a day. I've been on neurontin and was recently rx Lortabs. They have helped tremendously..the Lortabs! Even taking a low dose 1/2 of a 7.5mg tab really takes the edge off. My children are involved in many activities so I'm often "forced" to be in uncomfortable situations. I'm constantly taking off shoes {if I even have them on} and elevating in public places. My kids understand and have gotten past the embarrasing stage..

How you describe the chilling and sweating is exactly what I experience. I have woken up with one arm bright red from the elbow down because I had it lying across my fiancee's back. First time it happened it really blew my mind. Now I am aware that my extremeties heat up and cool down. We are temperature chameleons and the best thing you can do is just be aware!


Winter is a challenge for me too, but a welcome one compared to summer. I have Raynaud's also and live in VA. In winter, I either wear thin socks with my sandals or I wear Birkenstock clogs (in natural materials), so there is circulation with both the socks and shoe materials. I can wear the clogs with or without socks, depending on the weather and whether I'm indoors or out. I carry a pair of socks in my purse when I'm not wearing them. And I carry a tote bag with either the sandals or clogs, whichever I'm not wearing, for when I need to switch them during the day.

For socks I have to get mostly cotton with a tiny bit of nylon or lycra, but no polyester. Poly is too hot and I'm allergic to it. And when it's bitter cold out I can wear thin wool & silk blend socks, but may have to switch and wear cotton mid-day.

Snow and ice are the biggest problem, though I can get away with my clogs and yak tracks on most ice. For deep snow I have to wear boots but I only wear them to get to and from the car, then change.

And I dress in layers in natural fabrics so I don't get overheated and can adjus layers throughout the day.

It's all a lot of bother!!! But worth it to keep from being horribly hot, cold & in pain.

Kinda glad to see this post cause I’ve been having issues with this as well now that sandal weather is over. I have worn shoes, but take them off when I am inside again. Even with that, my feet flare & hurt more. Glad the weather here its fairly mild most of the time, because I may just go back to sandals & deal with the weird looks!