Balancing life and EDS is a delicate dance, and sometimes I get it wrong
A columnist bites off more than she can chew, leading to a pain flare
Some weeks just feel eternal. It’s like you’re clawing your way along until Friday, desperate for a chance to get some rest and downtime to prepare for the next week. Sometimes, though, weekends aren’t a break and one week blends right into the next. That’s what happened to me recently when soreness and exhaustion piled up from my Ehlers-Danlos syndrome (EDS).
I attended a local conference that started on a Sunday and lasted through Tuesday. On top of that, a friend was out of town and I was watching her farm for her. I had too much on my plate. Horses need constant care, and it’s not easy to find someone to take care of a farm, so I figured I’d just roll with it.
But between walking all over the convention center, sitting in uncomfortable chairs for hours, and juggling two farms, I was extremely sore. EDS soreness doesn’t involve just one particular area of the body. It’s a weary tenderness that permeates everywhere.
Sometimes when I have this kind of pain flare, though, it can also be focused in specific areas, such as my shoulder, hip, ankle, or finger. And it occurs in new places, too. This time around, it was in my right wrist. I don’t know why, and I didn’t do anything to aggravate it, but certain movements caused a sharp pain there.
I’m guessing it may have something to do with my finger, which I previously had surgery on after shattering it. While the surgeons did their best to repair it, they told me that due to the number of bone fragments, it likely wouldn’t be perfect afterward. It does get sore sometimes, and I can feel the pain extending to my hand.
While it may not seem to be the case, I actually do try to refrain from overdoing it. But sometimes life gets in the way, and I pay for it later. That’s what having EDS is like. It’s always a balancing act, and sometimes I get it wrong. Then I do my best to put things back together and keep soldiering on.
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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Michelle
Thank you for sharing. I'm unreasonably uncomfortable today after having just returned from a conference and juggling yard work, and I very much relate!
Desiree Shadoan
Thank you for sharing. I am new to hEDS diagnosis and like you a life long awaited answer; finally.
I recently have had pain in my left wrist and have wondered how it came to be. It is sharp and painful especially when trying to hold my steering wheel.
After reading your article I now understand that it is a flare for unknown reasons.
I appreciate what you are doing for our community and look forward to reading more.
Camille Edge
I’m 51 and live in Ontario Canada. I am trying to get my GP to refer me to the ONLY place in Canada that specializes in EDS. For some unknown reason he is being difficult. He tells me there’s no sense in getting a diagnosis bc there’s nothing you/they can do and that I’m too old to bother now. I should have looked into this as a young girl!
Nothing has EVER made sense with my pain flares and my Chiropractor said I most definitely fall into all the criteria
I’m so lost and hurt so badlyðŸ˜
Lisa Benson
This article really touched me because I feel exactly this way! I try to do the balancing act and life happens and for no reason I can be down for days for simple things like weeding my garden, painting a dresser or even moping. I just had a similar conversation with my husband regarding a Knee that flared up with pain for no reason. I was sitting at my desk and went to stand and boom, pain! Its helpful to see how EDS affects others so I don't feel like Im going crazy some times. I never know where my pain will strike next and I do my best to get through the week hoping for downtime on the weekends.
Linda Buehrle
I have not been diagnosed with ED, however, both my daughter and granddaughter have been diagnosed with it,, I am almost 80 and a Medicare and have therefore have not been tested for it.
I had a heart attack last May. I then had 4 stints put in my legs. I have had 31 broken bones, including 2 compression fractures in my back. I have Neuropathy in my legs and feet, however, I am not a diabetic..
I can hardly get out of bed in the morning because of the pain. I am on Lyrica for back pain do I guess that is about all I can do at this time. Is there anywhere to do the ED genetic testing for a lower cost?