My EDS pain seems to operate by different rules each day

One thing that’s particularly difficult about managing Ehlers-Danlos syndrome (EDS) is that the same activity can affect me differently on different days. I try to keep track of patterns or movements that are likely to cause a pain flare, but unfortunately, it doesn’t always work. Some days, I can carry a bucket of water with no problem, but a week later, it’s difficult. It can be frustrating.

Granted, there are many factors that affect an activity beyond the movement itself. I have a background in the social sciences, so I’m well aware that correlation doesn’t mean causation. In other words, just because carrying a bucket causes my damaged shoulder to flare up one day doesn’t necessarily mean that that action is the root of the problem. Many other variables could have come into play.

I have to consider what else I’ve done that day. Was it a busy day with a lot of activity? Maybe I was already tired before I carried the bucket, so I was starting at a deficit. Another factor is the weather. I can’t always predict which weather will bother me the most, but I am certainly affected by extreme temperatures and damp air. That could also help explain why a particular task only bothers me sometimes.

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Or perhaps I engaged slightly different muscles each time, depending on which other areas of my body were sore. Compensation is a major problem for me with EDS. For example, an injured right ankle may cause me to walk unevenly. If that happens, my hip will start to bother me, and if my hip gets irritated, it won’t be long before my back hurts. And once my back is involved, goodness knows that’s as much of an invitation as my shoulder needs to get angry, too!

It frustrates me that chores I do regularly, such as hauling a water bucket or sweeping my kitchen, don’t bother me most of the time, but can still occasionally cause a pain flare. While I try not to let EDS dictate what I can and can’t do — I’ve mastered adaptation — it’s still challenging when a task suddenly causes pain or discomfort for no good reason.

As an analytical person, I don’t like not having answers. I always want to identify patterns or root causes of issues to minimize the likelihood of them happening again. But EDS seems to operate differently from day to day, so sometimes I just have to let it go. I do my best to avoid problems and then hope for the best.

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.