A possible connection between EDS and my abnormal scar tissue
I'm always learning something new from the Ehlers-Danlos community
A few weeks ago, I wrote about how I wound up with a massive bruise on my left arm, courtesy of a grumpy horse. As much as I dislike the huge bruises I get, I also find them interesting. But I didn’t realize until I read the comments on that column that others with Ehlers-Danlos syndrome (EDS) experience a similar effect of bruising.
For me, large bruises not only result in an impressive rainbow of colors, but also hard lines or balls of tissue frequently form underneath. After spending two decades as a competitive soccer player, I had bulges on the front of both my legs from repeated scarring from bruises — despite wearing shinguards. Sometimes I’d even wrap the bruises for comfort because my body was uncomfortable.
I eventually figured out that it was likely scar tissue. Because this tissue is made up largely of collagen — which is weaker in those with EDS — I suppose it makes sense that my scar tissue is a bit abnormal. After my recent experience, I could feel a line of hard flesh under the bruise, exactly where the horse’s teeth had pinched me. If I ran my hand down my upper arm, it felt like a 3-inch-long string bean was under my skin. I haven’t had a bruise result in that kind of scarring in a while, but I knew right away what it was.
Additionally, when I have a bruise that’s significant enough to result in scarring, I also seem to experience nerve damage. No matter how many times it happens, it still feels strange. It took years after I stopped playing soccer for the nerves in my shins to heal. I supposed that repeated bruising meant the damage just kept layering up, extending the healing process. My more minor injuries tend to heal much quicker.
The weirdest thing about nerve damage is that it doesn’t feel the same every time. Sometimes I feel very little when I gently touch the skin where it’s damaged. I can feel my hand, but not at the same intensity I know I’m using. Other times, the softest touch feels like I’m raking my fingernails across the skin. It can take anywhere from weeks to years for it to heal. I’ve never found any rhyme or reason for how long it takes. I just know that sooner or later, it gets better.
I always assumed that the scar tissue and nerve damage from severe bruises was my own personal quirk, or related to the severity of the injury. I only experience it with injuries that would cause bruising for anyone, so I never realized it could be EDS-related. That’s one of the many reasons I enjoy this community: We can all support and learn from one another, no matter how different our experiences.
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Linda
Wow! You’re not alone. I have hEDS but diagnosis came when I was 60 and then only because I needed confirmation of self diagnosis. Bingo! Like you I’ve had a lifetime of easily gotten bruises bringing concern to others, particularly my husband who said I got bruised if he breathed on me,and I’m the princess with that proverbial pea!
At ten years of age I noticed very painful bruises on my shins. They came from bumping against hardwood stairs as I climbed them. Hard knots formed directly under each bruise, were especially painful to bump again, even after bruising resolved, and lasted well into my young adulthood.
Recently I’ve had large deep bruises with obvious hematomas deep in large muscles. They left hard lumps or ropey swellings like you described. Some numbness persisted for a couple of months until the underlying lumps completely heal.
I’ve also experienced bouts of ridiculously sensitive skin, even due to hair bending or bending the wrong way. That’s been diagnosed as allodynia and is usually related to migraines. Perhaps you fall into this category of symptomology.
Good luck in your journey!
Angela
Wow, thanks for your post. I smashed my upper shin into a low brick wall 10 days ago and it blew up to be higher than my knee. Now my calf is black and yellow and I’ve been feeling nerve pain on the top of my middle shin. This is the first time I’ve had such a significant bruise and I’m in a flare now too. Do you experience flares after significant injuries too? I’m feeling discouraged.
Karen Del Vecchio
Hi Angela. Yes, I absolutely do experience pain flares after significant injuries! While it doesn't always happen, it usually does. It can be frustrating for sure, but for me it helps to remember that if I have a pain flare after and injury, at least there's a reason I can pinpoint. Life with EDS is hard, but hang in there!
L. Shivers
I would like to find a way for insurance and Medicare to pay for EDS genic testing. I've tried contacting Medicare and there are only two acceptible diagnosis for genic testing one is cancer the other is bleeding disorders. So if you have family history of EDS without any genic testing the guessing game is where the diagnosis or an autopsy comes from. Any help with correct diagnosis of which EDS would help. Most doctors simply dont know enough about it.
Deborahlyn E Gagne
I had genetic testing done for EDS. My primary insurance is Medicare & they paid for it. I went to genetic counseling after l found out I indeed did have hEDS & l wanted to make sure l didn't have any other type of EDS. I didn't ask ahead of time, the place I went to made sure it was covered & it was. They tested for all the different variants known to go along with hEDS as well. Hope this helps
Jomi
I, too, have abnormal scarring with my hEDS. Hypertrophic scars have been my reality for the last 20 years or so… and seem to happen more and more as I age. I was talking to my doc about it and said how weird it is that it happens with a connective tissue disorder. She said the connective tissue and collagen are formed by crazy genes that have no clue what they’re doing, thus hypertrophic scars. I liked that image of “crazy genes” that formed in my mind, and they definitely were wearing silly hats!😁