Are My Unique Massage Reactions Related to EDS? - Ehlers Danlos News

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I know I write frequently about my massages, but that’s because they are the only treatment available to me, and they keep my pain level under control.

This is one reason I find it so frustrating that massage is rarely covered by health insurance. Because my rare disorder doesn’t have any treatment options besides addressing individual symptoms, it’s mind-boggling that one of the few things that can help isn’t covered.

But I digress. Most people with rare disorders likely already understand the unfairness of the insurance industry.

I’m fascinated by how Kim, my rock-star massage therapist, frequently talks about how differently I react to various modalities than her average patient. I can only assume that this is related to my Ehlers-Danlos syndrome (EDS), but I don’t really know.

I have a number of regular trigger points, particularly in my shoulder and back. My shoulder is the site of an old injury I sustained as a teenager before my EDS diagnosis. As a result, I have significant permanent damage to that area and the surrounding connective tissue. While it has improved dramatically with years of both massage and physical therapy, it will never be normal. That’s often one of the first places Kim works on.

When she finds those trigger points, they tend to ricochet throughout my back. I feel what I can best describe as a low-key buzz reaching out from that point to the other trigger points, which all connect. Sometimes, if Kim can put pressure on each of those points at once, I’ll nearly jump off the table — not with pain, but with what feels like a shot of energy that surges through each point. After that, the points are often much less painful, and the resulting muscles are more relaxed. Kim says she’s never seen anything like it. It feels pretty strange, too!

Through my massages, we’ve also noticed that I can often feel how compensatory pain connects the area she’s working on to somewhere else. For example, if Kim is working on one section of my lower back, I’ll often feel what I can best describe as the ghost of pain in my hip. These two areas are connected, and when she works on one, I’ll often feel it radiate to the other.

While compensatory pain can be an issue regardless of whether someone has EDS, I find it so strange that I can sometimes feel those connections. It can be helpful for Kim, as it shows her how various pieces fit together, thus helping her unravel me, so to speak. But it can definitely cause some unusual sensations.

Regardless, I’m lucky to be able to access massage on my own and have an amazing therapist who finds my EDS idiosyncrasies (as well as my personal ones!) amusing. Without massage, my pain levels quickly increase, which often leads to a simultaneous increase in my anxiety levels. With it, I feel like I can maintain pain and functioning levels that allow me to live a semi-normal life. For that, I’m thankful!

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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, and are intended to spark discussion about issues pertaining to Ehlers-Danlos.

• Author Details

An avid equestrian and educator, Karen has been a columnist at BioNews — the publisher of this site — since 2019. She was diagnosed with Ehlers-Danlos syndrome in 2009 after years of searching 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 writing.
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An avid equestrian and educator, Karen has been a columnist at BioNews — the publisher of this site — since 2019. She was diagnosed with Ehlers-Danlos syndrome in 2009 after years of searching 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 writing.
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