I only make a big deal to say "it's official" that I have hypermobile Ehlers Danlos because of how long the process took, and the ever-looming possibility of the diagnosis changing.
I can hear the questions now, "You have a whole blog about having hEDS, but you might not actually have it?"
That's correct. Time for some science. In the other 12 subcategories of EDS, you can do genetic testing to find the exact gene that is mutated. There is still not a specific test that can confirm or deny that you have the hypermobile type; meaning do I most likely have hEDS? Yes, but could I go do genetic testing and have the slightest chance of being diagnosed with a different subtype? Also yes.
This is when I trust my care team. I have always wanted to understand my symptoms, but it wasn't until about 2016 when I decided to be determined to solve my medical mystery. Now (2021) I feel like I finally have a team of medical professionals that understand EDS, and know what routes to lead me on to help me feel better.
My plan is to get genetic testing, if that's what I'm advised to do. I have nothing against doing the tests, but if it's not needed, I'm not going to spend extra money to just confirm my hEDS diagnosis.
So if I started searching for answers in 2016, why did it take so long to find them?
As I mentioned in my What's With The Zebras? post, EDS is not a common diagnosis. There are more reasonable explanations that would show up on my imaging to explain my pain.
Tendonitis, bursitis, inflamation, and bone spurs were the typical answers I received. I did physical therapy (with a PT that was not my favorite) for 6 months with no improvements, ended up having surgery, more PT, injections, more imaging, more injections, and then COVID happened.
Nothing was working, but being quarantined gave me time to research. I had just been approved by my insurance to see an out-of-network PT. I had all the time in the world being stuck at home with just me and my two cats (shout out to Kovu and Louie). I finally decided on a Physical Therapy location that worked specifically with dancers.
I'll go into further details about my relationship with Physical Therapy, but I'll just say I have had some of the worst and best experiences with it.
At my new PT location, I was told I definitely had hypermobile joints. This was also the first time the thought of Ehlers Danlos was briefly brought up.
Fast forward four months, and I started feeling extra fatigued and got dizzy fairly easy.
Back story: I was turning 26, which meant I had to get my own health insurance (thanks mom and dad for letting me stay on yours for 26 years). I didn't have any connections with my current care team (except my PT), so I decided to start fresh.
I found an ARNP that had connective tissue disorders and fatigue listed as some of her specific interests. I went to see her about my fatigue and dizziness, but my thought process was, if she understands hypermobilty/EDS, then she will be able to help me rule that out for me.
She is seriously the best. I have never had a primary care physician anywhere near as good as her. My first visit with her was in April 2021, and it is now August 2021, and she officially gave me the hypermobile EDS diagnosis.
hEDS is a rule-out condition; meaning you have to get certain tests to rule out other potential causes like auto-immune disorders. Between April and August, in addition to seeing my ARNP once a month, I saw a neurologist and orthopedist multiple times, and had to have an echocardiogram as well. In 2021, I have also had to have three MRI's. Let's just say I definitely met my deductible.
BUT HERE I AM. 14 years after the first symptoms, officially being able to say my pain and symptoms are real. There is not only an explanation, but also a name.
Be Brave. Stay Kind. Much Love.
Sami
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