Here in Virginia, all nonessential businesses have been closed for several weeks. Frustratingly, I’m unable to access my two main therapies — massage and Pilates. Both of these activities are critical to my pain management, as massage helps to relax my tight muscles and Pilates remind my body how it’s supposed to move (which is rarely how it actually wants to move). I usually have a massage every other week and I do Pilates every week.
I’m frequently asked by people who aren’t familiar with EDS why someone who’s hyperflexible needs massages. If you don’t understand how the disorder works it’s a perfectly logical question. “If you’re already too flexible, how can you have tight muscles?” The simple explanation is that I’m actually too flexible. People who have EDS typically make poor-quality collagen, so our tendons and ligaments are too flexible, which makes our joints unstable. In response, our bodies try to compensate by tightening the muscles, particularly around joints (at least in my case), to try to provide the stabilization our tendons and ligaments lack.
My muscles can get so tight that my bones get pulled out of alignment. It’s actually pretty common for my spine to have vertebrae slightly out of alignment or for my shoulder to be subluxed because the muscles are so tight when I go for a massage. Since there’s obviously no way to stay 6 feet apart from a therapist while getting a massage, I haven’t had one now for weeks. As a result, I’ve had to really get creative in how to keep myself as comfortable as possible.
I’m lucky that my mom can do some bodywork on me, as my parents are the only people from whom I’m not social distancing. However, we live 45 minutes apart. As a result, I’ve found two inexpensive products that are proving helpful. One is a handheld neck massager that allows me to really work on my tight neck and part of my shoulder without putting undue stress on my shoulders. I’ve found it to be surprisingly effective; it’s very easy to change the amount of pressure put in any one spot. I was skeptical, but after using it a few times I’m definitely a fan! The other is a simple massage roller stick that athletes often use. I got one that’s actually long enough that I can use it on my back as well as my legs or anywhere else.
With a little ingenuity, like everyone else I’m finding ways to manage the life disruptions caused right now by COVID-19. I’ll leave with a positive quote for your day: “Never fear shadows. They simply mean there’s a light shining nearby.” –Ruth E. Renkel.
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 other 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 Services, and are intended to spark discussion about issues pertaining to Ehlers-Danlos.
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