I remember wishing the final whistle would just blow. I wasn’t sure how much longer I could force myself to keep running while being unable to breathe. I’d already run to the sideline for my albuterol inhaler several times, but I was still struggling. It was a big game, the…
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.
Note: This column describes the author’s experiences with fascial counterstrain therapy (FCS). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. It’s still hard to believe how much I’ve benefited from adding fascial counterstrain therapy (FCS) to my self-care routine.

Last week’s column about my hip pain got me thinking. I badly injured my right hip when I was 16 or 17 years old, before my diagnosis of Ehlers-Danlos syndrome (EDS). I’m not sure if I had hip pain prior to that, but I’ve had issues with it…
Sometimes I’m baffled by my body’s connections and the way it compensates for issues related to my Ehlers-Danlos syndrome. Recently, I’ve been experiencing a sharp pain in the muscles along the front and sides of the bottom of my rib cage. I couldn’t think of anything I’d done…
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…
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.
Recent Posts
- Dismissive doctors cause EDS patients to minimize their own pain May 7, 2026
- The benefits of fascial counterstrain therapy just keep accumulating May 5, 2026
- Guest Voice: With EDS, I accept what’s challenging, embrace what’s possible May 4, 2026
- Nonprofit’s 2026 EDS Awareness Month goal: Net $100K for research, care April 30, 2026
- Long stretches of driving trigger an EDS pain flare-up April 28, 2026
- Dentists may spot EDS signs during routine exams, study finds April 23, 2026
- Attention, cognitive issues tied to pain, body regulation problems in hEDS April 16, 2026
- Why I am no longer thinking of myself as ‘a mess’ due to EDS April 14, 2026
- New study suggests hypermobile EDS and HSD may share a disease spectrum April 9, 2026
- Overcoming my fear of pain to get back on the horse — literally April 7, 2026