Yet another new way of feeling my EDS pain

The confusing case of the radiating circles from a spot in my back

Karen Del Vecchio avatar

by Karen Del Vecchio |

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I’ve been managing some funky, twisted body things recently. One of those has been manifesting in my back, and it feels bizarre. About a third to halfway down my spine, there’s an area that has a lot of scar tissue and muscle damage, and it feels like concentric circles of pain are radiating from it. It’s like I have a target on my back.

The source of that pain seems to go back many years.

I’ve learned that my youthful goalkeeper duties in soccer did a real number on my spine. Since I didn’t know I had Ehlers-Danlos syndrome (EDS) until I was 22, I’d done a lot of things before that weren’t great for my body. Diving on the ground repeatedly for years was one of those things.

When I began getting regular massages in my mid-20s to help with pain management, I learned that areas along my spine were caked in scar tissue. That seemed to be the result of my body desperately trying to stabilize my too-flexible joints as I put them through a high-intensity, athletic beating six or seven days a week for years on end.

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While massage, physical therapy, and changing my athletic habits have helped over the years, there’s one spot in my back — the spot I mention above — that continues to give me trouble. It becomes hypersensitive and inflamed, and I’ll feel it radiate out across my back and body. Apparently, the spot is near where a variety of muscles connect; when that area becomes reactive, it quickly gets nearby structures involved.

The way I feel now is unusual for me. When I typically have a flare, the pain just becomes widespread and all-encompassing, making it difficult to determine specific points where it originates. It often just hurts pretty much everywhere, although every flare is a bit different. And although I’m sore all over my body now, I clearly have this significant pain point in my back.

The radiating circle of pain is odd; it’s not anything I’ve felt before, despite the dozens, or more likely hundreds, of times that this area has flared up over the years. This point on my spine feels like the center, where the pain is most intense. Then there’s a ring around that where I’m pretty sore and reactive. Lastly, there’s an outer ring that reaches down to the old injury in my hips and up to my neck and EDS-damaged shoulder, where I’m uncomfortable but less pained.

I can’t figure out how that makes any kind of physiological sense, but if there’s one thing I’ve learned from living with EDS, it’s that there are many things you can’t explain. The same issue won’t always manifest in the same way, and there are times when logical reasoning doesn’t help me untangle it. I just have to acknowledge it, do my best to manage it, and keep rolling.

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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Mary Beth Lang avatar

Mary Beth Lang

Don't know whether to laugh or cry. I'm 70 and was just diagnosed a year and a half ago. What's next? Wait for the autopsy?

Karen Del Vecchio avatar

Karen Del Vecchio

Hi, Mary Beth. I would imagine it's been difficult being diagnosed after so long! While having EDS is tough, I found relief by trying a variety of different modalities - massage, Pilates, any physical therapy to name a few - and sticking with those that helped. For me personally massage is a game changer, but it's different for everyone. Along with your doctor and medical team, maybe see what things work for you. EDS can be challenging sometimes, but hang in there!

Julie Stefandel avatar

Julie Stefandel

The radiating pain is/are trigger points. OurEDS bodies create trigger points to help stabilize our joints. I’m so very full of trigger points. I’m a patient at the Shepherd Center in Atlanta. They have me see a physical therapist that performs dry needling on me 2-3x a week. Not all of the trigger points can be released-or I’d literally begin to fall apart. The PT knows just where to release these trigger points.
It helps with a bit of my pain relief….
I’m on hard-hard pain killers the rest of the time for my pain….There’s no massage that will take away my widespread pain. Weightlifting does help-but….again….nothing will fix this.😵‍💫


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