With EDS, my body’s reaction to different massage modalities varies

How my bodyworker avoids triggering a pain response

Karen Del Vecchio avatar

by Karen Del Vecchio |

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I recently wrote about a strange sensation of energy I experienced during a massage, and it’s been really neat hearing feedback from others with Ehlers-Danlos syndrome (EDS) who’ve had similar experiences. One reader, a Chinese medicine practitioner, commented and said that it did indeed sound like I’d released some stagnant energy, or qi. Fascinating!

I had another unusual experience during my last massage, but it was related to extreme tenderness in my intercostal and subscapularis muscles. Sometimes when my muscles get incredibly inflamed and tender, I can’t tolerate much manual manipulation of them. Over the years, however, I’ve learned that cupping doesn’t create the same pain response. Rather, it allows my bodyworker to actually work on the muscles and help them calm down enough to do deeper work and find the root of the problem.

When my bodyworker, Kim, began trying to gently work on my right side during my last session, I was flinching and twitching all over the place. This area has a lot of deep scar tissue from a severe shoulder injury I sustained as a teenager, prior to my EDS diagnosis. I dislocated my shoulder, tore my trapezius muscle, broke my collarbone, and damaged pretty much everything else connected to my shoulder. Kim has been working on me every other week for six or seven years now, so she was very familiar with what was going on.

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Yet another new way of feeling my EDS pain

Kim is also very conscientious, so she immediately realized that she needed to try a different modality. Based on my own catalog of experiences with various reactions, I told her that I thought cupping might be the only way to tackle such hypersensitive muscles. She was happy to switch to cups, but then she realized that she’d forgotten to bring them that day.

One of the many great things about Kim is that she’s cross-trained in several different massage modalities, and she can switch between them depending on my needs. After a moment of consideration, she decided to try Rolfing, a form of bodywork that involves manipulating the fascia.

While massage usually feels like downward pressure, this was totally different. It felt like Kim was gently lifting my skin and muscles and rolling them through her fingers. Amazingly, I didn’t have the same intense reaction I’d had a few moments earlier.

When I asked Kim how that simple change could make such a big difference, she said it probably had to do with shifting the direction of the pressure to the upward rolling motion of Rolfing. While I understand that in theory, it still seems a little crazy to me. But since this modality helped release a lot of that painful tightness, I really didn’t care too much!

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.


Kelley Paystrup avatar

Kelley Paystrup

I've had problems with massage making me extremely nauseated, sometimes to the point of vomiting. My massage therapist said it was because I releasing things emotionally, but I only have that reaction with a full-body massage. I can handle energy work, reflexology, neck and scalp massage, and hot stones, but having the tissues in my trunk worked leaves me dizzy and nauseated. Ideas why that might be? I have hEDS.

Karen Brazeau avatar

Karen Brazeau

Very interesting experiences, thank you for sharing. I've been getting massages for years and the past 4 years by the same person but this is the first time I've experienced pain to the slightest of touches the next day, only in a 5" area of my arm that she had worked on. Even the feel of a sleeve on it caused a burning sensation, has anyone ever experienced that before?

BILL avatar


That explains it. My massage therapist uses Rolfing technique and it has provided me with a lot of pain relief!. And though I have chronic costochondritis, I have not experienced pain with the massage.

Jane A Willoughby Woods avatar

Jane A Willoughby Woods

Massage feels good at the time but afterwards, the next day, I ache all over. Maybe the Arthritic boney bits don't like being rubbed, or it's the EDS? Also, I have chondritis and swelling around my costochondral region, and can't imagine being massaged there as it would be too painful. I soak in an Epsom salt bath. It helps. While soaking, I use an inflatable travel neck pillow and the gentle traction helps my neck and shoulder pain.

Melanie avatar



Fascinating article. You are very fortunate to be able to tolerate and afford these treatments - how fantastic! The question begs an answer in response to your comment; "Kim has been working on me every other week for six or seven years now"...may I ask how you have made these frequent appointments affordable - does insurance cover any of the cost?

Karen Del Vecchio avatar

Karen Del Vecchio

Hi Melanie - I am definitely very lucky on both of those counts, you're completely right! Unfortunately, my treatments are not covered by insurance. Kim is an amazing practitioner who operates independently and offers very reasonable prices. It's not inexpensive, but she's far less so than pretty much any other provider I've ever found, and thus I've made it a priority in my budget since it helps me so much. I have no clue how I was lucky enough to find such a highly skilled practitioner at extremely reasonable prices, but I'm so thankful that I did and have been able to make it work. Massage can be a critical tool for pain management, and I absolutely believe that it should be covered by insurance to make it more accessible for those who would benefit from it. Hopefully one day it will be!

Judy avatar


I have EDS Hypermobility Syndrome and found the article on compression clothing interesting as for me the slightest spandex, stretch in clothing liked leggings or even slacks and hues s will after a very short time displace my knee joints. It’s best if I wear skirt or full flare legged fabric, like linen. It’s really difficult to find comfortable winter clothing. I’ve wondered if this is true for anyone else. Slotted legs in jeans make sense but I’m not sue it’ what started the craze. Hi boots also are problematic as skin tears easily with ankle bones and shins.


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