My chronic pain connects in strange and mysterious ways

Managing the widespread muscle pain that stems from Ehlers-Danlos syndrome

Karen Del Vecchio avatar

by Karen Del Vecchio |

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Sometimes, when my back pain flares up, I know exactly what caused it. Other times, I have no idea. Last week fell into the “no clue” category. I knew that my back was sore, but it wasn’t until my massage therapist, Kim, really began working on it that I realized just how bad my muscle pain, which stems from my Ehlers-Danlos syndrome (EDS), had gotten.

Once Kim started working on me during my last session, I realized that I was in what we jokingly call the “sleeping bear” mode. I was clearly very tight and sore, but at first I was nonreactive. Like many people with EDS, my body often tries to stabilize itself by tightening its muscles to do the work that my tendons and ligaments are too lax to do effectively. It wasn’t until Kim started working slowly through each muscle group that the full depth of my tightness became clear.

I have a significant amount of scar tissue along my spine from years of playing goalkeeper in soccer before my EDS diagnosis. My best guess is that years of diving onto the ground spurred my body to stabilize my spine in the only way it could: tight muscles and scar tissue.

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While it took many years to figure out, it’s now clear that one section of scar tissue is located where the nerves that go to my diaphragm connect to my spine. As a result, when that area gets inflamed, it affects my hips and ribs pretty significantly, along with my stomach to some degree.

I don’t understand why, but I’ve realized that when that part of my back is inflamed, I don’t feel hungry. Don’t get me wrong, I am hungry and I still eat, but I don’t get that hungry feeling or a growling stomach. Once those muscles around my spine and diaphragm are worked on and released, those sensations return. I find the whole thing very weird.

The connections across my back and body seem to continually evolve, even as some areas remain issues. I know that many parts of my body will always be difficult to manage, simply because of the amount of physical damage they’ve sustained. My right side is much more damaged than my left, and sometimes the muscles that run from my shoulder down my ribs and into my right hip are so tight that I can feel the way it twists my hips and shortens that side when I’m sitting down.

This time around, the radiating back pain connected with my chronic shoulder pain. The tightness radiated down my right arm from my shoulder, and up my right arm from my hand. My formerly shattered right ring finger isn’t quite straight, and when I use it a lot, the way that it torques can cause tightness in my hand and wrist.

Even though Kim worked on me for nearly an hour and a half last week, she was never able to get away from my back, shoulders, and neck. She never even got to work on my legs or feet, which were also sore from walking unevenly from the back and hip pain.

Despite that, I still feel significantly better, and I’m thankful that I have such an awesome therapist who has really taken the time to learn all of my strange EDS-related quirks. It makes a huge difference for me!

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.


Colette avatar


Thank you so much. Reading this makes me cry because it's so nice to know someone understands how weird this is. Bon courage.

Janice Crowder-Torrez avatar

Janice Crowder-Torrez

Thank you for this article. I recently had a R Ear hearing implant (BAHA) surgery on 9-15-22. I am still reeling from pain on my Left side.... the down side I was positioned on in the OR for the implant above my R ear. My continuous pain in my L ribs, L shoulder, L arm, L side of head, has affected my sleep, causing increases in my previously controlled HTN. Found I can only sleep on my R side.... Finding a massage therapist who understands has been difficult.

Pamela Keller avatar

Pamela Keller

This is me!!!

Sydney avatar


Thank you. I don't have the specific symptoms you are experiencing but get similar radiating pain issues that are unexplained. It helps to know I'm not the only one.


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