Learning new ways to manage EDS in cold weather

It’s been really cold here in Virginia recently. I’m a New Englander at heart, so I really don’t mind the cold weather, but down here in the South, life isn’t set up for the kind of temperatures we’ve been having, and definitely not for snow.

It’s been a struggle for me to do farm chores with my Ehlers-Danlos syndrome (EDS), but I also had one of my favorite forced relaxation times: a snow day!

With my EDS, I already have enough trouble keeping my muscles limber without extreme cold. While it sounds paradoxical to people who don’t know about EDS, once I explain that my joints are loose because my tendons and ligaments are too stretchy to hold them in place properly, and that my muscles tighten to try to compensate, it usually makes more sense to people. So I already have tight muscles from EDS, and add to that the normal reaction for muscles to tighten when it’s cold. It’s a recipe for some so-called EDS fun.

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December 8, 2020 Columns by Karen Del Vecchio

Managing Winter Weather and EDS Symptoms

Because of EDS, I’m always looking for new ways to make life easier. Recently, I discovered a few new ways to battle the effects of this syndrome during cold weather.

While they’re not the prettiest of things, my coveralls and Carhartt farm jacket are lifesavers in cold temperatures. Animals need care regardless of the weather, and the workload is actually greater in extreme temperatures. So I must adapt. I held off on wearing coveralls for a long time, because they’re kind of awkward. (Think snow pants, but less flexible and harder to get on and off.) But now I wonder why I didn’t start using them sooner. They keep me warmer, and although the straps of the overall-style pants can sometimes irritate my bad right shoulder if I wear them for hours on end, it’s usually worth it for the warmth they provide.

I’ve never really cared for hats, and sometimes if I have too much material around my neck it irritates me, so for a long time I relied on a baseball cap and a jacket zipped all the way up. But a cold neck always travels down into my shoulders and back, and I already have enough trouble with pain from old injuries and my EDS to deal with this added discomfort.

I don’t know why it didn’t occur to me to try different styles and thicknesses of hats and scarves until a few years ago. I tend to be stubborn in that way. But after trying several, I found a fleece ball cap with ear flaps (and a ponytail hole!), along with a scarf that a friend knitted that’s warm but not overly thick.

Lastly, this year’s new item is rechargeable hand warmers. These little gadgets might be the best thing I’ve discovered in ages. You charge them up, turn them on to whatever level you want, stick them in your pockets, and go. Mine last up to eight hours on one charge when they’re at the low setting. And they get so warm on low that I’ve never had to turn them up higher.

My surgically repaired right ring finger has six screws and a plate in it, so it’s very sensitive to the cold. The hand warmers have been amazing at preventing my finger from becoming overly stiff. Even when I have to take my gloves off to do something, I can just warm my hands up afterward.

Over the years, I’ve found different products, tips, and ideas that help me manage my EDS in the cold, but I learned a long time ago that just because one thing works doesn’t mean something even better might not come along. It’s always worth trying different things to see if they perform better or make me more comfortable. The worst thing that can happen is for me to go back to what I’d been doing before.

Managing EDS is a marathon, not a sprint, so I’m always willing to try new things to see if they help!

Note: Ehlers-Danlos News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Ehlers-Danlos News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Ehlers-Danlos.