Managing Life Without Massage or Pilates

Managing Life Without Massage or Pilates
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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.

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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.

An avid equestrian and educator, Karen has been a columnist at BioNews since 2019. She was diagnosed with Ehlers-Danlos Syndrome in 2009 after a years-long search for a diagnosis that explained her symptoms. 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 work with BioNews.
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An avid equestrian and educator, Karen has been a columnist at BioNews since 2019. She was diagnosed with Ehlers-Danlos Syndrome in 2009 after a years-long search for a diagnosis that explained her symptoms. 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 work with BioNews.
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5 comments

  1. Hannah says:

    Hi Karen, I saw your article and just wanted to share, you don’t have to live without Pilates in these days. I’m doing free Pilates home workout daily on my YouTube channel and lots of people texted me how much they love doing it everyday with their family at home. I hope it helps and hope you stay safe and healthy. Lots of love from Texas,
    Hannah

  2. Diane M Smith says:

    Hi Karen,
    The neck massager sounds wonderful. Unfortunately, I can’t use a neck or back massager or a TENS unit or anything like that, because I have a pacemaker (lots of cardiac problems). The electromagnetic fields would fight 🙂 Nothing of that nature, magnetic or electronic.
    Hypermobile EDS since early childhood; other dysautonomia issues, too. Ouch.
    Love your column; read it every week.
    Appreciation from a fellow Virginian,
    Diane

    • Karen Del Vecchio says:

      Hi Diane,

      Thanks so much for taking the time to comment and to read my column; it’s great to hear from you! This time has definitely been a challenge for all of us, and I hope we can all get back to at least a little bit of normal soon.

      Karen

  3. Rue says:

    Hey! I got given a stick massage machine by my best friend and I have started resting the ball of my foot on it with and if you don’t press down with your foot it can get an amazing massage from the ‘root’ right up the tendon of your leg, it can even help your back I find. I do the same with my hands which are always in pain and I can snap my tendons along my arms by pulling my fingers they are so tight. This is a new way of massage I hadn’t known existed, I just try anything I can to try to get relief as I cannot afford massages more than 2-3 times a year sadly. It’s been really helpful and a hand held back massager would do it

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