Are my EDS symptoms affected by weather or my activities?
Both hot and cold weather mean more work for this columnist
I often think about how my Ehlers-Danlos syndrome (EDS) is affected by the weather. I also wonder whether the biggest factor in my EDS symptoms is the weather itself or how my activities change because of it.
I’ve been experiencing wild temperature swings lately, ranging from 15 F to 70 F in just 10 days. As I’ve previously noted, because of EDS, I must adjust my activities based on whether it’s hot or cold outside. Both extremes mean more chores for me to do on the farm. I’ve learned the importance of staying warm when it’s cold, because cold weather accelerates the tendency for my muscles to tighten more than usual. On the other hand, when it’s hot out, I have to avoid getting overheated or dehydrated, both of which can also affect my muscles.
I wonder how much of what I feel is the result of the temperatures and how much is because of what I do because of those temperatures. From a management perspective, it doesn’t really matter, as it is what it is and I deal with it. But I have a background in research, so it gets me thinking and I try to parse the different pieces of the puzzle. Of course, as a common research adage notes, “Correlation does not imply causation.”
So what does correlate? When it’s cold, I have to put blankets on the horses, feed them extra hay so that they stay warm, and make sure the water troughs are defrosted — in addition to my regular chores. That means extra lifting, more time outdoors, and the need to swing a hammer to break up the frozen water in the troughs. Each of these chores can cause soreness, but I don’t know if they would do so if the weather was warmer.
When it’s really hot out, I spend more time dumping and scrubbing water troughs. The horses want to stay in their shelters under their fans, so I have to keep those areas clean of manure and haul it out to the muck pile. While I do that, I tend to be sweating profusely in heat indexes that can reach 100 F.
You might be wondering why I spend time noodling over something that doesn’t really matter and I can’t actually answer. I suppose it’s because I tend to manage my EDS in part by noticing patterns and using that information to modify how I do things. It’s just how my brain works. So, even though I can’t always parse the differences, thinking about it still helps me recognize how I feel and when. That information, in turn, can help me manage my EDS the best that I can.
I think what affects my symptoms is a combination of both what I do and the weather itself. I’m curious what readers think. Please share in the comments below.
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.
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Joe Pierce
Thanks for posting!
Tracey Villaverde
I’m also a horse person and I have noticed that the winters are particularly rough. I’m also a teacher and off during the summer, so I always wonder what impact that has on my pain.
BONNIE
Temps and especially barometric changes affect us.... My daughter keeps a log of barometric pressure - especially for joint pain. We can get wide swings in temps and baro pressures, too.
Faith
In the Summer here in Nashville Tennessee it's over 100 most days, and as soon as the hot weather hits, I end up with UTIs, the doctors say it is because we aren't able to absorb water like normal people, so it doesn't matter how much I drink I am always dehydrated. I am told that if I take salt tablets that will stop it, but I don't know how much or anything, and with no doctors that know enough about it around here, I am on my own. In the winter, my arthritis and SI joint make me hurt so bad it's hard to walk let alone work.
Ruth Maarchett
I am more sedentary, so some of what you are saying does not apply to me, but I do know that when it is cold out (or in,) my circulation is bad, which also effects how much I am able to do. My fingers turn grey and become stiffer. My motivation drops.
Ellen Masucci
I agree with what you are saying. Every day with EDS is different. For me it's important to have plans, but not stick to them if circumstances change. If it's hot and humid I will have to change my plans to be indoors in air conditioning and limit my outdoor time. If it's cold I will spend more time indoors keeping warm. If it's icy I will walk at the gym instead of outside. I have learned to access each day and what it may bring, and be flexible enough to take care of myself even if it means changing plans. If I have to be exposed for any reason, I will take the time after to rest, hydrate, and relax my muscles. The hardest part of all this is accepting that we can't always do what we want to, and sometimes we will let ourselves and others down. But with EDS listening, pacing, accepting and having compassion for ourselves is what will help us to thrive.
Dr Lucia Getsi
Oh, you’re right the weather has an impact, but not so much for me if hot or cold. I had a horse farm and I showed horses and bred horses and raised colts while I was being a professor most of the time at the university where I lived. With me and with most people with EDS that I know it is the low pressure System fronts that move right through our joint as they move usually from West to east and south north or north south. Except when they move from east to west and those are even worse, especially if they can go from Winward Southwest to Northeast and Northwest to Southeast five times in an hour, which they can now. The air pressure will start moving t the synovial fluid in your joint capsules. It will bunch it in a tiny section of the capsule and then the inflammation will lock it there. It can create like samurai swords going through your shoulder blade or your left or right lateral knee groin. Particularly any joint that you’ve injured which for me is most of them thanks to the horses and scoliosis. In Illinois, I could be out with my 11 year-old daughter, dancing on the tops of overturned, frozen buckets of ice and then from the one pump of pie that was working, filling those buckets and carrying one in each hand while skating down a bank of black ice and then dealing with horses that could not be let out of the barn or they would skate as well and pull out all of their pasterns. Three years I lasted, the worst weather three years for Illinois of a 10 year horrible weather pattern in the early 80s. And then I sold our horses and moved back into town. Took my pain and my research skills to my to my typewriter, because that’s what we had back then. Joined what was called in the fibromyalgia, network news, kind of a forerunner to EDS. Fabulous organization, but then the writer, organizer and owner of the network news got sick herself really sick. But everything that applies to fibromyalgia applies to EDS, on steroids.
Mischa Brown
I am also always trying to figure out what affects my hEDS symptoms: Weather, stress, diet, activity level… and a new one for me, solar flares. It helps me to feel more control in what I can do, and more grace in things over which I have no control.
Val
I am a pattern noticer also. As I have accepted my diagnosis and am learning more about EDS, I am constantly analyzing my routines and "comfort items" (food, hydration, supplements). I have changed a lot of things consciously after this examination, and find that unconsciously I had adapted in various ways that I didn't give myself credit for. It' can be exhausting to overanalyze one's life. Also, under stress I can "forget" about a positive adaptation or two. Rest, reboot, try again.
Kelly Ayres
I have noticed weather is a huge factor for me. When it gets cold my muscles tighten to the point that walking becomes extremely difficult. All my muscles hurt and spasm which makes sleeping in particular rough. In the summer the heat brings on a whole set of issues not only musculature but I seem to flare more.
Kailla
Thank you for sharing your thoughts on the weather, work and EDS. I am in North Georgia where we also have wild weather shifts that increase certain chores. I find the cold stiffing my muscles quite a bit and when I work outside caring for the ducks my muscles stay very tense even after the work has warmed me up. I am trying to add daily PT exercises including the yoga poses ‘threading the needle’ and ‘Cat/Cow’ as suggested by my physical therapist. These stretches along with putting pressure on my muscles really help relieve the pain. In spring and summer there is so much to do! So much of that involves carrying things. I am strong and want to hart things done, but when I over do it a dislocation is in my immediate future. I am trying to be more mindful of what should be my limitations. I have a choice today to be reckless with my body or to go slow and steady. I often feel like nothing can get done if I just
‘slow and steady’ my chores. I can feel lazy and unproductive, however, by practicing mindfulness and self compassion- among with acceptance, I find that I have fewer dislocations and injuries by slowing it down, the pain flares up in my injury locations after strenuous work, but each day without dislocation is a win.
Debora K Plante
When it's cold I suffer when it's hot I suffer to the point of nausea and sweat alot. I find that I need a nap often ( sometimes just to escape the pain) I am a Zebra,also fibromyalgia Osteoarthritis and osteopenia Not to mention all of the other effects that come with this. I wasn't Diagnosed until I was 60 yrs old and now am 65 just wishing for a plan to help me. I need lots of help.