There’s a saying which is used quite often amongst people talking about Ehlers Danlos Syndrome. “If you can’t connect the issues, think connective tissues”. Nobody seems to know who first coined it but it’s struck a chord with many of us.
Here’s my own personal list of issues I had assumed were unrelated but which turned out to be interconnected.
Gorlin Sign. Or being able to touch my nose with my tongue. Present in 10% of the population but in 50% of those with EDS.
Growing pains. I’ve been plagued by pains in my legs all my life and was told that they were just growing pains. Ironically I never grew very much.
Dental issues. My gums bleed no matter how well I brush or floss. My teeth moved around after I as done with braces. My baby teeth stuck around until well into my teens. TMJ pain both from clenching and grinding my teeth and from my jaw joint moving around.
Headaches. I get migraines, headaches from TMJ issues, headaches from neck issues, just random headaches.
Digestive issues. Chronic constipation, reflux, hiatal hernia, gastritis, nausea, early satiety, gastroparesis.
Foot issues. Flat feet are more common with EDS but some of us, like me, suffer from extremely high arches. Pronation is also very common but again my issue is the opposite, which is supination. I’ve had gait experts shake their heads in disbelief at how I walk. I also have extremely weak ankles.
Eye issues. I’m very short sighted, which is one of the criteria for EDS. But I also have very dry eyes caused by sleeping with my eyes partially open. I don’t tolerate contact lenses too well. And the whites of my eyes have a slight blue tinge.
Dysautonomia. This is an umbrella term that covers a lot of issues. In my case I get dizzy very easily and my heart starts beating really fast for very random reasons.
Pseudoephedrine sensitivity. I first realised this when I took a Sudofed and my heart started beating so fast I thought I was going to die. It’s an adrenaline analogue and many with EDS are sensitive to adrenaline. Which ties in with many of us being (mis)diagnosed with anxiety disorders.
Autism. There is a lot of anecdotal evidence linking EDS and ASD. There are also ongoing studies examining the links. Brain scans of children with EDS can often look similar to those of autistic children. While autism most likely has many causes, it seems probable that a subset may be caused by how EDS might effect the collagen in our brains.
Eating disorders. Again, while eating disorders have many triggers, it seems digestive issues caused by EDS and sensory issues related to autism may trigger eating disorders in those susceptible. Also, eating disorders are anxiety disorders at heart and this also ties in with both EDS and autism.
Odd quirks. This is purely anecdotal but it seems lots of us with EDS have odd quirks such as difficulties clicking fingers, blowing balloons and whistling.
Update: Ovarian torsion. I can’t believe I forgot this one. Sixteen years ago, this week, I had to have emergency surgery and had an ovary removed. I’d been in pain for a long long time but apparently my ovaries are not easy to see in an ultrasound scan. My left ovary (or was it my right, I can’t remember) had twisted, cutting off its blood supply, and it had necrolised. That is, it was black and dead and could have killed me via sepsis. Now, I’ve no proof linking it to EDS, but usually an ovary is held in place by ligaments, and faulty ligaments such as those found with EDS could indeed cause the twisting that leads to torsion. Makes sense to me. And leaves me paranoid about my remaining ovary. So glad I was still able to have kids.
Update: Mouth ulcers. Tissue fragility often leads to multiple and severe mouth ulcers, often during times of increased stress.
I’m sure this list could be much much longer. And I will probably update it over time. I just wanted to point out the issues linked to EDS beyond what are in the diagnostic criteria. No doubt some of these will be eventually added to the official criteria. In the meantime this list may help doctors join the dots that hint to an EDS diagnosis.
[ image of a black background with feint white zig zag lines. In white, the words ‘If you can’t connect the issues, think connective tissues.’]