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How I Felt After Receiving Another Chronic Diagnosis

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After many years of waiting and wondering and suffering through increasingly bad health, it was such a relief to finally receive a diagnosis of fibromyalgia at the end of 2016. Finally, so many things seemed to add up! As I searched the internet for all the info I could find, the symptoms I discovered that fit – things I had just accepted as part of my body, or ignored in light of other symptoms that were worse. It all seemed to finally make sense… sort of…

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

The pain, fatigue, brain fog, etc. that I was facing in the more recent couple of years seemed markedly different to how my pain had been in the past. But it was all classified as chronic pain, etc., so it still fit with fibro – right? And although biologically I couldn’t explain why certain symptoms happened to be linked to this condition, that doesn’t mean they aren’t still the same thing – right?

Unfortunately, it wasn’t that simple.

While meeting with the pain management clinic, and meeting other people on the pain management course, I started to question whether my flexibility wasn’t just a product of my years of gymnastics but rather caused by something else.

In amongst my fibro diagnosis, doctors had thrown the label “hypermobility” around a bit but like I said, I had previously been a gymnast. Being flexible didn’t seem like a concern. Plus, not all my joints fit the same criteria, so I figured it wasn’t anything to worry about. But, at the pain clinic, the words Ehlers-Danlos started popping up more and more.

In a one-on-one session, the woman who was running the course asked my diagnosis. I said “fibro, maybe hypermobility” and she was shocked.
Just from some of the simple group stretches we’d done in sessions, she said that EDS was obvious. She then asked me questions, pulled, poked, prodded me for the rest of the session, becoming increasingly stunned at the fact that I had never been formally diagnosed. Things about my body that I’d ignored or thought were even normal, turned out to be exactly the opposite. It finally all made sense. She explained that the difference in my genetic makeup due to the EDS is likely what made me susceptible to developing fibromyalgia.

With more research, it seemed to fit even more perfectly than before. It seems obvious now that the pain I had been experiencing before hadn’t been fibro pain, but been due to my EDS. And a million other small symptoms that I had too finally made sense – there was a real, genuine scientific explanation. I was stunned.

And more research led to the realization that all the niggling or unexplained health issues faced by my mum’s side of the family made sense too! It may not have been as severe for them as it was for me, but it was definitely, undeniably there.

I wanted to be happy, finally having an answer that fit even better than before. But I wasn’t. Because the pain clinic lady had suggested that I don’t take the referral back to the doctor for a formal, on paper diagnosis.
If I had a formal diagnosis, it would seem to make life so much easier, knowing what to tell people and how to understand it all. But it also wouldn’t.

It meant I’d have another label to follow me everywhere. Another thing to record on all my paperwork, my insurance, my job records. Another limitation I had to face. Another reason to hold me back.

I may have peace of mind as to why my body behaves in the way it does. I may now know I’m not making it up, or trying to explain a million seemingly unrelated symptoms. But this doesn’t change anything. It won’t make me better. So what am I supposed to do? Maybe EDS needs to be my little secret for a while.

Getty Image by bruniewska

Originally published: February 26, 2018
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