Are My Unique Massage Reactions Related to EDS?

Karen Del Vecchio avatar

by Karen Del Vecchio |

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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!


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.


Amy Taets avatar

Amy Taets

I finally found a massage therapist knowledgeable about EDS. I always say "a connective tissue disorder that causes a lot of pain and joint instability" This therapist immediately asked if it's EDS. I asked her how she knew, and she said because of my thin & bruised skin. Her daughter has it! It's the 1st massage in about 20 years that didn't hurt or bruise but still gave fabulous pain relief. It's priceless when you find the right one.

Karen Del Vecchio avatar

Karen Del Vecchio

Hi, Amy. Yes! The right massage therapist has literally been life-changing for me. I'm so glad to hear that you've found an awesome therapist too!

nancy avatar


Hi Karen,
I too agree in the value of massage therapy. I've been paying for massages for many years, insurance won't cover.
Over the last couple of years, my therapist has been using cupping as part of my therapy.
Last week, the cup on my shoulder left blisters and tore some of the blisters open, leaving open, raw wound. There was nothing different with this cupping than the had done before. A week later, I have scabs, and will end up with scars.
I dont know what the solution is except be very careful.

Karen Del Vecchio avatar

Karen Del Vecchio

Hi Nancy. Ouch! That sounds incredibly painful. I've had cupping done as well, but I've never had that level of reaction to it. While I have a variety of EDS symptoms, my skin fragility seems to be rather minimal in comparison to others. I'm so sorry to hear this happened to you. Massage can definitely be a critical tool in management, but it sure can be difficult to balance it with the unique difficulties of having EDS. I hope your next massage goes better for you!

David DePinho avatar

David DePinho

Hi Karen, would you know if there are any resources available or what might be the best way to locate a massage therapist who understands EDS Hypermobile in the New Jersey area?

Karen Del Vecchio avatar

Karen Del Vecchio

Hi David. Unfortunately I don't. I got lucky finding mine, but I'm hoping a fellow reader in your area may see this and be able to jump in with recommendations. Best of luck to you!

Jennifer Leigh avatar

Jennifer Leigh

Hi I have not had massage therapy but have tried reflexology (which hurt like hell) and acupuncture. My acupuncturist eventually begged me to stop coming, because when he hit certain points (often in my feet), I would yelp in pain and virtually rise off his couch! I told him I was used to this happening (from touch etc) and I thought that it was related to my Fibromyalgia. Now, I'm wondering if it is to do with my connective tissue. He said, that he had never had anyone react so much with the very fine needles that do not normally cause issues.

Maya Ambraziunas avatar

Maya Ambraziunas

I've found this same sensation through a combination of marijuana and my own stretching/movement work. I tend towards tension, and this combination relaxes my muscles enough to allow me to lean into one tender spot and follow the sensation throughout my spine and limbs, with a massive energy release at the end.


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