My latest EDS pain flare felt different — in the best way

Sometimes it’s hard to explain what I mean when I say I feel like a twisted pretzel. While my physical therapist (PT) and massage therapist understand, they’re also trained to look for such anomalies. I don’t think it’s something the average person can see, but I definitely feel it when my Ehlers-Danlos syndrome (EDS) flares up. And while some aspects of my most recent pain flare were the same as always, parts of it were different.

As I wrote about last week, I had a pain flare that aggravated my gastrointestinal symptoms. That happens with me sometimes, and it’s a layer of EDS that often slips under the radar. But in addition to feeling painful, bloated, and generally uncomfortable, I could also feel various parts of my body being pulled in different directions.

Unfortunately, I’d missed a massage because my therapist was sick, so it had been a month since she’d worked on me. Massage is one of only two modalities (the other being fascial counterstrain therapy, or FCS) that provide me with relief. I can always tell when I miss a session! As a result, my body was particularly wonky in various ways.

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I could tell that my right shoulder, which was badly damaged during a teenage soccer injury that occurred years before my EDS diagnosis, was being pulled forward and down. That meant that my right arm was hanging lower and rather limply at my side. When my shoulder is really sore, it’s not uncommon for my body to go into protective mode, in which my right arm just hangs. That’s because, for so many years before I found the right PT, moving it at all caused extreme pain.

Simultaneously, I could tell that my hips were twisted, which was pulling on the muscles in my back, making them sore. One hip bone was sitting higher than the other, and the muscles around my rib cage were growing tighter and more painful by the day. This, in turn, made me walk awkwardly, which made my plantar fasciitis twinge and my knees sore.

Needless to say, by the time I saw my massage therapist, I was feeling pretty sore. But one thing amazed me: Although I was extremely sore and tired, I wasn’t hyperreactive, which I usually am during an EDS pain flare. This was the first real flare I’ve experienced since starting FCS, and the difference was astounding.

While FCS didn’t prevent me from having a pain flare, it’s clear that the therapy has helped my body calm down much more quickly. I’ve never recovered from a flare this fast. It resolved in a matter of days, rather than weeks.

EDS can be hard to understand. It can flare up for seemingly no reason and in many different ways, from musculoskeletal pain to gastrointestinal symptoms to exhaustion. But I’m thankful that I continue to find ways to mitigate its effects and remain as comfortable as possible. There’s no magic solution to EDS pain flares, but I’m immensely grateful for the people, lessons, and modalities that help me manage it as best I can each day.

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.