I’ve recently been tapping into a new level of body awareness — or at least trying to. I’ve previously written about my pain flares and how my proprioception — the sense of body positioning in space — has been off at times. While these unfortunately are common…
Black and Blue Ribbons
— Karen Del Vecchio

An avid equestrian and educator based in Virginia, Karen Del Vecchio was diagnosed with Ehlers-Danlos syndrome in 2009 after years searching for a diagnosis that explained her symptoms. Since her diagnosis at the Johns Hopkins Connective Tissues Disorder Clinic, she has worked to find ways to manage her symptoms while still maintaining an active lifestyle. Karen enjoys working with her students, riding and caring for her two horses, Cherry and Spotty, and connecting with others in the rare disease community through her writing.
Last week, I had my first physical therapy (PT) appointment for my broken rib and sprained diaphragm. Even after an initial evaluation, I wasn’t sure what to expect, and I was a bit nervous about our plan to try the Graston technique. In the end, though, it was…

I recently wrote about a strange sensation of energy I experienced during a massage, and it’s been really neat hearing feedback from others with Ehlers-Danlos syndrome (EDS) who’ve had similar experiences. One reader, a Chinese medicine practitioner, commented and said that it did indeed sound like I’d released some…
“When you’re not used to hurting all the time anymore, it really sucks when you do, doesn’t it?” Those are the paraphrased words of my massage therapist last week, and while they perhaps weren’t the most elegantly phrased, they sure rang true to me. After having a bizarre Ehlers-Danlos…
I’ve been managing some unusual pain issues over the past few weeks. It’s rare that I don’t feel better after a massage, but two weeks ago, that happened. Even after a few days, my pain wasn’t improving. It felt like I hadn’t even had a massage. I couldn’t…
I’ve been managing some funky, twisted body things recently. One of those has been manifesting in my back, and it feels bizarre. About a third to halfway down my spine, there’s an area that has a lot of scar tissue and muscle damage, and it feels like concentric circles…
I usually know when I’m crooked. When my body has been pulled out of alignment in a variety of ways, it’s usually pretty clear. But during my latest massage to treat the symptoms of my Ehlers-Danlos syndrome, something unusual happened. As I was lying on my…
I’ve often said that chronic fatigue is the toughest part of having Ehlers-Danlos syndrome. It’s exhausting being tired all the time! As a high school teacher and post-graduate counselor, this time of year is especially draining, as it’s full speed ahead to the finish line of graduation.
I’m pretty sure that if I were an instrument, I’d be an accordion: stretched out on one side, squinched up on the other. Sometimes as I walk along, in fact, I can actually experience myself as twisted. When standing up straight recently, I felt that my right hip and…
As a teacher and postgraduate counselor, I’m used to going nonstop this time of year, but I still try to at least glance at a number of publications to stay on top of what’s happening in the world of education. Sometimes these news outlets highlight short excerpts about important research.
The past few weeks have been a roller coaster ride for me: I’ve been stressed at work and home and faced a pain flare to boot. But lately, things have been trending up. I’ve been thinking, however, that sometimes my pain flares feel different from each other. One…
Sometimes my Ehlers-Danlos syndrome (EDS) manifests in unexpected ways. While dealing with a pain flare and a lot of stress at work recently, I started to notice more pain in my right elbow. I was hoping it would decline as my flare subsided, and while it’s certainly better,…
After a tough couple of weeks, life is finally starting to settle back down for me. I’m less stressed, my bruises from a recent fall are healing, and I’m feeling better. It’s taken some time, but I’m on the upswing. During an Ehlers-Danlos syndrome (EDS) pain flare,…
Recent Posts
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- My first physical therapy session went better than I’d hoped December 16, 2025
- People with EDS who have severe pain more likely to use cannabis, cigarettes December 11, 2025
- Trying to understand and manage changing trends in my health December 9, 2025
- Connective tissue damage is severe when EDS meets joint disease December 4, 2025
- My healing journey continues after a physical therapy evaluation December 4, 2025
- Treatments fail to ease muscle, joint pain for most with hEDS, HSD November 20, 2025
- Acknowledging the setbacks in my EDS healing journey is hard work November 18, 2025
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