Getting massage therapy to ease EDS pain prompts strange sensations - Ehlers-Danlos News

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Over the years, I’ve found a few things that help me manage Ehlers-Danlos syndrome (EDS). Readers of this column likely know that one important thing is getting massages. It’s really the only thing that seems to help with the pain and with keeping my muscles from locking up into tight knots, which pulls my body out of alignment and causes even more pain.

It’s been a few years since I’ve gone a month without a massage, but sometimes life happens. I’ve been busy lately wrapping up another school year and getting the farm rolling as we head into summer, so I wasn’t able to get a massage for several weeks.

Spending that much time with tight, tense muscles pulling me in different directions is a strange feeling. When I’m very sore, I’ll often mentally block the pain, so when my massage therapist Kim starts working on me, I don’t initially feel discomfort. It doesn’t take long, though, for my muscles to fire up and show their anger.

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small nerve fibers | Ehlers-Danlos News | illustration of patient experiencing pain


One example is my ribs. I’ve previously described the strange sensation when my rib muscles are exceptionally tight. My right shoulder and hip get pulled together like an accordion while my left side is stretched out. This is a fairly common occurrence for me stemming from damage in my right shoulder due to an old injury. It can take a while for Kim to get the muscles to calm down, and that’s only the first step. Then they need to release their tension so my body can go back into alignment.

One way of doing this is with some gentle traction. Since my ribs pull my right hip up and my shoulder down, I usually ask Kim to hold my right ankle, which gives me something to brace against while I stretch out my rib cage. This is always an interesting experience, and sometimes it takes a few attempts to get the necessary result.

The first time we tried it during my last session, it didn’t work. Instead of the muscles releasing, they began to spasm, and Kim had to go back and do some more work on them. Then we tried again.

The feeling when the muscles release is so weird to me. They often tense a bit at first when I stretch, then it feels like I grew about six inches. As my rib muscles let go, I can feel my right shoulder rise and my right hip drop back down into its normal position. Suddenly, the entire right side of my body feels liberated.

I can actually see the muscles let go and my hip and shoulder realign. Afterward, with the muscles relaxed, I can move, stretch, and take deep breaths. It’s not uncommon for this to cause a domino effect to other areas of my body that also slip back into alignment as I move around. Each time something goes back as it should, I can feel the muscles around it unwind and relax.

I know the sensation of relief won’t last. Usually, about two or three days after I have bodywork, I start getting tight again. The key for me is having bodywork every other week to prevent my body from snowballing into a massive pain flare. I’m thankful to have a type of therapy that makes a difference, even if it feels weird.



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.

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