With EDS, learning how to stay warm in the winter is crucial

Small adaptations can make a big difference

Karen Del Vecchio avatar

by Karen Del Vecchio |

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The rising and falling temperatures we’ve been experiencing lately have been challenging for me. With Ehlers-Danlos syndrome (EDS), I already tend to have tight muscles that cause pain. It’s a constant battle, regardless of what month of the year it is or whether it’s hot or cold outside. But when temperatures are extra cold, keeping warm becomes an important part of staying as limber as possible.

While I would prefer spring and fall weather year-round, if I had to pick one extreme it would be the cold. That probably sounds strange for someone who experiences additional challenges due to cold weather, but I despise hot temperatures and humidity.

Because I live on a small horse farm, I have several chores to do regardless of the weather. So I’ve learned ways to stay warm and keep muscle tightness to a minimum.

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I recently moved to a new farm, so during this recent cold spell, I used a bit of trial and error to figure out a routine that works for me. That meant figuring out new, efficient ways of doing things. In addition to the basics of staying warm, such as layering up and using hand warmer packets in my pockets, I learned a few additional tricks.

I don’t love winter hats, but I’ve noticed that my entire body is colder if I don’t wear them, even with plenty of layers of clothing. That’s not good for my damaged shoulder or my back, both of which will tighten if they’re cold. Luckily, I stumbled upon a fleece baseball hat with ear flaps and a gap for my ponytail. It has become my go-to hat for cold weather.

My surgically repaired finger also struggles in cold weather, becoming stiff and uncooperative. Gloves don’t always provide enough dexterity for some tasks, but when I take them off, my hands get too cold.

The solution I found for this is a pair of fingerless alpaca wool gloves. While my fingertips sometimes still get cold, the gloves are great for short periods, as they cover the bottom half of my finger, where I had the surgery. Unlike sheep’s wool, these gloves are easily washable, and they stay warm, even when they’re damp.

Managing the symptoms of EDS seems like a never-ending task, but I’ve learned over the years to avoid getting frustrated. Instead, I view it as a personal challenge. “How many things do I have to try before I find a solution?” I’ll ask myself. “How creative can I get? Can I make it fun?”

The spin I try to apply to things helps to take the sting out of needing to do them in the first place.

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.


Erica avatar


Another type of fingerless gloves I’ve found to be very helpful are the “possum” fur type from New Zealand. Soft, warm, and even pretty. They are washable by hand in cold water.


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