The Start of My Diagnosis Journey

In TV medical dramas like House and Grey’s Anatomy, often a patient will present with a collection of seemingly unrelated symptoms. The doctors will run test after test, try treatment after treatment, and the patient will get worse until suddenly the doctor finally diagnoses the patient. In these shows, the doctors believe the patient, they run the tests the patient needs, and they don’t give up.

There’s a reason these are fictional TV shows.

Where It Starts

Me when I first was diagnosed, taking a picture of all the KT my physical therapist had put on me.

When I was in my sophomore year of college, I was experiencing worsening chronic widespread pain. The main problem I had was that I had a lot of pain in my wrists which made it impossible for me to play piano (which was pretty important since I went to school for music). I also had pain in my shoulders, back, and hip.

Oftentimes, the first step in getting diagnosed is to head to your primary care doctor. Because I was away at college, I didn’t have a primary care in my new city. I made an appointment with the first doctor I could, knowing I would only really need to see them to get a referral.

I was worried about this appointment.

My doctor was an older white man, which is a category of people not historically great at listening to young women. I gave him the benefit of the doubt and went in with an open mind. I explained my complaints, he did a quick exam, and then he said essentially “you’re young to be in this much pain, it must not be that bad.” He didn’t refer me to anyone. He sent me on my way after advising I try an over the counter pain killer.

He didn’t believe me, and he wouldn’t help me.

I was angry, and I was frustrated.

And understandably so, I think. I went home and cried, frustrated I hadn’t been listened to and wondering how I was supposed to just accept this pain.

But then that anger turned productive. Well, if he didn’t want to refer me to anyone, I’d just go ahead and refer myself. I had a few ideas about what I might have so I knew what doctors would be able to help me. I made an appointment with a neurologist and a rheumatologist.

I was lucky enough that I got in to see the neurologist and she didn’t ask for a referral until I was already in the appointment. She did the exam and referred to me a rheumatologist but gave me a tentative diagnosis of fibromyalgia.

The rheumatologist agreed, and I had my new diagnosis.

Time for Treatment… Right?

My Biggest Helper

Me and my emotional support cat, Abby, on a flight back when she could still sit on my lap. Having her is what’s helped the most with my mental health, which really helps with my ability to handle my pain.

You’d think, but there aren’t that many options for treatment for fibromyalgia. When I left that appointment, I was given a packet on how to manage it that recommended healthy eating and exercise. It wasn’t until I went to a pain specialist (after having to find one on my own) that I was able to try some medications. Unfortunately none of them worked for me.

The chronic illness community’s role.

It was because of the chronic illness community that I found some treatments and methods that worked. It’s because of that community I tried PT, OT, and myofascial release. And it’s because of that community that I’m actually thinking that fibromyalgia might be a misdiagnosis. I think there’s a very good chance I actually have Ehlers-Danlos syndrome, which I’m in the process of getting tested for.

This is all to say that a diagnosis journey is never over, and doctors/the medical system aren’t always the allies they should be.

If you want to read a rant about what I think should be done about this, you can check out this post.