Learning new ways to manage EDS in cold weather
New clothing items help a columnist do farm chores during a cold spell
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.
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.
About the Author
Melanie Johnson
Hello, thanks for sharing all this! I too have EDS & live in MN where it often gets below zero degrees. Would it be possible to share the links to the hat & gloves you shared about please?
Thanks
—Melanie
Karen
Hi, Melanie! I apologize for the delay. These are the gloves: https://www.tractorsupply.com/tsc/product/ridgecut-brushed-acrylic-insulated-dotted-nitrile-palm-glove-s-m. And while I can't find the exact hat (mine was made by Duluth Trading Company), the TrailHeads Fleece Ponytail Hat for Women on Amazon looks very similar. Hope they help!
Sally RIchards
Love your article! I live in Southern California, and it has been in the 30s at night and in the 70s and this weekend 80s during the day. But it was in the 50's during day and low 30s for weeks when we were fighting all the fires. Just today they've put out the last huge fire. Cold is baaaad for me. I am waiting for many surgeries and my (or lack thereof) joints and bones just ache. I had steroid injections that just ruined my cartilage...it just disappeared. My osteoarthritis has been killing me. As Ehlers-Danlos people, we are susceptible to osteo and have it a whole lot sooner than the rest. Our EDS bones just invite it in. We experience osteo a whole lot differently that others.
Staying warm is the only way to beat the pain. Although, too many blankets weights me down and hurts everything. I am 60, so have lived past most of the lifespan studies. I really thank Godess for cannabis dispensaries, we have really good ones. There are all sorts of ways to get it into your body, I make non-animal butter and bake it into goods, or put it on toast. I don't eat much sugar, because that's a bad thing, as are sodas, for EDS folks. So, I just put it in a crock put and let it sit and decide what to do with it. The costs are very low considering what it used to be. Like most EDS people, I live on Odandistron for my nausea which has been overwhelming. I've just lost my taste for food since I became a longhauler, there are studies about this) and spicy foods just aren't what they used to be. Over the counter pain meds don't work great, and I turn down the opioids doctors want to get me hooked on. I saw this happened to my father (where the gene came from), he died still in pain, because they really don't work for you long-term. Short term use for opioids after surgery I think are fine, but I had a very bad reaction after a knee surgery. All you can do is try and manage your pain — stay warm! Our solar was destroyed with the high winds. It wouldn't kick in. Companies were hugely busy because of all the solar/wind issues. I had backup batteries in the bedroom I plugged things into, including a small heater. We live in a geodesic dome, it is uninsulated — who knew it would ever get cold here! Most of the year it's 70s, though it has been getting to 100 and only getting down to 80s at night.
So the house has been staying cold during the day, but the bedroom was somewhat warm. The hot water was working on gas and I took a lot of them, that really helps from the pain from the cold. I spend A LOT of time in a hot shower. The stove, also gas, was also working. I had all of the fridge in heavy duty coolers. My husband was out of town because his mother is dying, so I did what I could and got the animals in one room with me at night. We just have dogs, I admire you for having large animals. YOU ARE AMAZING! Be very careful about lifting, it catches us to us. We're in the country, so I dared not light a fire in the fireplace. Everything is kindle without rain, we haven't had much in over a year...last year we had a hurricane come into the mountains! Flooding like crazy downtown and around the cities. I did not want to risk using the generator, that might send sparks out. I could hear ,on the high wind that was so noisy, the neighboring properties had their generators on like it was no risk at all. There were lots of small fires around from the homeless trying to stay warm and people using generators. Not to mention the arsonists who were sparking fires everywhere. We do have battery backup for the security system, so that was a relief that it worked.
I wear knit gloves with cotton lining and touch screen fingers (very helpful!) and a knit hat, and still am. I keep my beanie on at night, heat escapes from the head, so I keep it on always and have a serious case of flat hair. I have an insulated wool jacket I got at Costco this holiday that I thought I'd never wear. The animals got their own blankets on the bed that I tucked around them. And were also wearing over clothes to keep them warm during the day. It was so cold it could have snowed, but there was no rain.
My kid is in the East Cost at university, her first year of spending it in snow, though she does enjoy skiing, though I freak when she plays high risk sports, like any EDS mom would.
I did get the pocket heat things hikers use THANK YOU for telling me about the ones you can recharge!!! I always feel guilty tossing them out. I use them in my pant's pockets and my jacket pockets, sometimes I slip them under my gloves. Those have been very helpful. And lined leggings. Thick cotton socks and comfy ortho shoes during the day in the house (we are normally a no-shoe household, but I won't tell if you don''t).
Karen, you have no idea (or maybe you do) how soothing it actually is to hear that the cold is an EDS thing. With so many symptoms, it's a relief to hear I am not alone. Every time I read where someone is sharing my same symptoms, the puzzle pieces fall into place — it helps me know I'm not alone, and that is a HUGE thing! You are so brave taking care of animals and fighting that huge cold, I feel like such a baby complaining about my cold issues, it made my heart warm. I'd sign-off saying, Stay Warm! But, I know you will.
Thank you for sharing this!
Thank you for your words, they TRULY help.
Karen
Thanks so much for taking the time to comment - hearing from you all is MY reminder that we're all in this together!
Dr Craig F Lisjak
Excellent advise, as those of us totally or partially disabled from EDS like myself, likely to having underwent multiple failed or poor outcomes from surgical fusions of various joints. We rely on ice and analgesic for effective joint relief. Though during cold weather extremes and instrumentation, though it is essential to maintain compensatory muscle tone for stabilization...in the cold with reduced circulation to muscles can cause the to be problematic and symptomatic, the increase in tension and joint compression may result in a corresponding increase in suffering or even muscle tears. Warmth through layering clothing can be cumbersome though be the lesser of the evils we endure. Moving slowly and cautiously prevents slips and tear injuries of soft tissues. The rechargeable gloves, socks, or hand warmers can be a modern blessing! What a great point by this author! Hoodies can be helpful as well for the neck, though can affect the field of vision, to be aware of...for us Zebra's, like the tortoise slow and steady wins the race! (Though, no professional advice...a disabled professional with personal advice may help us all along through seasonal changes). Great Article!
Respectfully,
Craig F Lisjak, DC (30 years of clinical practice and now hEDS Disabled)
Skia Laurence
I never understood how I could have muscle spasms and loose joints at the same time so thanks for explaining that. I live in Maine, and keeping warm is really helpful, especially because a lot of people don’t believe in heating public buildings very much around here. A friend crocheted me wrist warmers, and it really cuts down on pain. Another friend advised me to keep my hips warm and I up cycled old cashmere, sweaters to make a skirt to wear over with my other clothes. It really does help. Also, I did buy really good snow pants and they’re excellent. Real fur is amazing, cashmere is amazing lightweight. Fleece stockings are amazing, especially under a wool skirt or pants. Alpaca socks. Goat fur boots. Marino wool knitted cap under a hood with real fur around the edge. Leather gloves for flexibility with warm woolen or insulated gloves over them when it’s super cold. Synthetic fibers are not nearly as warm as natural ones.
Mischa Brown
Your upcycled cashmere skirt reminds me of the “kidney warmer” I discovered in Ireland many years ago. I’ve since knitted a couple and they help a lot in the cold.