For My 30th Birthday, I Was Going to Get a Neck Tattoo—Instead I Found Out I Have Ehlers-Danlos Syndrome

Thirteen years after my misdiagnosed autoimmune disorder, 18 years after having debilitating painful periods almost every month, and almost nine years after going gluten-free and feeling healthy, here I am with a potential new diagnosis.

In hindsight, it all makes perfect sense. Ehlers-Danlos and mast cell activation syndrome. I have many of the symptoms of each. Yet, no one—outside of my integrative health doctor a few months ago—told me that I had these disorders.

Yet I know that at least one of my doctors knew I had Ehlers-Danlos. She had me perform the maneuvers of the Beighton score during my appointment at the age of 21. At the time, I didn’t know that’s what she was asking me to do; all I knew was that she was surprised by my hypermobility. She never told me I had the disorder.

(I recently attempted to find this doctor—who told me I would be on chemotherapy for the rest of my life to manage my autoimmune disorder, and who I only saw once—to get my records only to find that the practice is closed and I cannot locate her. Very frustrating. She came highly recommended to me from some acquaintances who had lupus—she turned out to be a total joke. She knew I had Ehlers-Danlos, probably knew about the connection between Ehlers-Danlos and mast cell activation syndrome, and probably could have come to the conclusion that my “autoimmune disease” was a result of my body overreacting to foods that it didn’t like.) Anyway!

So how did I get from there to HERE?

You can read the full story here, but the short version is this: I walked out of that doctor’s office feeling hopeless yet determine that this was not going to be my life. I found an herbalist who helped me figure out that gluten was causing all my symptoms. I stopped eating gluten and have been fine for the past nine years without any medication.

And yet.

While I’m currently healthier than I’ve ever been in my whole life, there were still some nagging issues that I couldn’t quite figure out.

  • The insanely painful periods (which have improved SO MUCH with help from my herbalists, but still sometimes leave me in bed all day)
  • My unexplained anxiety and skin picking disorder
  • The bad reaction I’d often have to alcohol (I’ve since quit drinking for good)
  • Having brain fog after eating
  • My orthostatic hypotension and low blood pressure
  • Hives after eating food (never quite figured out which foods caused this)
  • Poor wound healing, scars, and dry skin
  • The fact that I feel cold almost all the time

I couldn’t put my finger on it, and often times I’d forget that many of these symptoms weren’t normal because I’d been experiencing them forever. I chalked it up to genetics: my dad has insomnia and dry skin, my mom and brother have some form of skin picking disorder (which is actually a mild form of OCD).

Brain fog and hives are classic symptoms of a food intolerance, but I couldn’t figure out what I was eating that was causing these symptoms. I already don’t eat gluten, dairy, alcohol, and genetically modified food. I also do my best to avoid refined sugars (although, of course, I do indulge once in a while).

So what was going on?

I blamed it on my parents: I got screwed with bad genes, blah blah blah. But that didn’t explain my low blood pressure (high blood pressure runs on both sides of my family), and it didn’t explain my bad periods. There were gaps that I didn’t understand.

And then.

I needed to talk to my integrative health doctor to get some paperwork for my job in DC. I tried to get reception to send it, but they said that I had to schedule an appointment. Boo. So I did, even though I didn’t really feel that I needed to see him. It was COVID times, so I had a phone appointment with him (I love my integrative health doctor, I just hate doctors in general, so I always have an attitude when talking to him).

We spoke about some of my symptoms and he suddenly but strongly suggested that I had Ehlers-Danlos Syndrome and mast cell activation syndrome after asking me some questions. After asking me to come in for bloodwork, we got off the phone.

At first, I didn’t think much of his suggestions, but then, I felt upset. Here I am with yet another disorder—ahem, disorders—at age 30.

So I started researching and read the material my doctor sent me. I was convinced that I had this. I had so many of the symptoms. Not only could I perform several of the actions on the Beighton score, but I also had Gorlin sign—the ability to touch the tip of my nose with my tongue—something I’d always been able to do. Only 10% of people can do this, but 50% of people with Ehlers-Danlos can.

I’m still learning about Ehlers-Danlos and mast cell activation syndrome, but I can’t help but feel that this is a huge missing link in the big picture of my health—a merging of my misdiagnosis and my current symptoms. I also found some tentative research about the role of mast cells in dermatomyositis, and how mast cells could not only be “the first cells” to become activated in dermatomyositis, but also how maybe treating mast cell activation could be a missing link for those with dermatomyositis.

I’m currently working my herbalist to address many of my mast cell related symptoms and am excited to see what the future holds for my health! And the neck tattoo? Don’t worry, it’s on the list for next year 🙂

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