Brain Tumor

Misdiagnosis: From Fibromyalgia to Brain Tumor

16832198_10102660054845834_6014347965752901571_nWhew! The past 72 hours have been utter shit for me. I’d explain why, but I’m going to just wave my Tumor! sign and leave it at that. There’s something else I want to write about now.

Did you know that May is Brain Cancer Awareness Month and Fibromyalgia Awareness Month? (Actually, May is the awareness month for a lot of things, but these two things have been just about my entire life since October 2014, so they’re getting top billing on my blog this May Day.)

I mentioned in a previous post that I believe fibromyalgia was a misdiagnosis for me as opposed to a comorbidity. As I have discussed many times with family and friends, I am mostly overjoyed to have an accurate diagnosis and a real plan to get better.

However.

There’s a special kind of emotional baggage I picked up on this path, and the only way I know to heal from it is to put it out in the universe by sharing it on my blog—where my family, friends, and even complete strangers get to read some of my most intimate thoughts.

I have no qualms about oversharing when it comes to my well-being.

So here’s the deal. On February 2, I had fibromyalgia. Then on February 3, I had a six-centimeter tumor on my brain stem.

On February 2 the general consensus among my doctors was that I wasn’t eating right or exercising enough. If I were, I’d experience improvement and maybe even remission of some of my symptoms.

On February 3 the general consensus among my doctors was “Holy, shit. You shouldn’t be able to do that” or “No wonder your body can’t walk, breathe, sleep, digest, or stabilize your heart rate and blood pressure like a healthy person.”

At first I was like, damn I am one tough cookie.

And then I was like, wait just a goddamn minute here.

I want to point out that from a purely physical experience, there was no discernible difference for me between February 2 to February 3*—even though in that 24 hours, my list of symptoms was suddenly more than validated.

Medical professionals (not speaking of specific doctors right now, just medical pros as a community) who were previously dismissive of my pain were suddenly losing their shit over how believable my reports of chronic pain and disability were.

And this is a point that I really want to drive home, so I’m going to repeat it:

The physical experience of living inside this tired, broken body didn’t change one iota for me in that time.

Still, somehow I went from being a whining, complaining exaggerator with two X-chromosomes to a human being who really had been experiencing unrelenting level-eight pain for TWO AND A HALF FUCKING YEARS.

charlie_brown_pain_scale

(My Spoonies are grabbing tissues right now, they are empathizing so hard.)

(Others might not quite understand just how much emotional damage was done. That’s okay.)

It makes me angry that I wasn’t taken seriously. It makes me sad that treatment (and possibly relief) could have come just a little bit sooner for me, but instead I spent months homebound.

The lazy-ass rheumatologist that was a little too eager to diagnose me with fibromyalgia in 2014 fought me over my symptoms and complaints of weight gain, insisting that I wasn’t exercising enough.

When I told him that I’d been tracking my steps, walking to and from work, walking three laps at the park after work every night, and using my FitDesk and hand weights at home and was experiencing physical decline instead of improvement, his response was “Well, you need to start out slower and build up.”

SERIOUSLY?

That’s all the motherfucker had. I must have been doing it wrong.

Now that I have proof of this brain tumor and I’m recovering from surgery, chemotherapy, and radiation therapy, I hear admonishments not to “overdo” when I tell the doctors and nurses that I’m walking without mobility aids or putting in 30 minutes (on the lowest resistance setting, for the love of god) on my FitDesk as I try to recover.

If you don’t immediately know why both of these experiences fill me with boiling rage, I’ll tell you: NEITHER VALIDATES THAT I KNOW THE PHYSICAL LIMITS OF MY OWN DAMN BODY.

And yeah, the anger that comes with that weasels its way into my waking hours from time to time. You got a problem with that?


*I implore you to think about this before you accuse someone with a fibromylagia diagnosis of being an attention-seeker, a pill popper, or a conjurer of fake maladies.

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7 thoughts on “Misdiagnosis: From Fibromyalgia to Brain Tumor

  1. Holy crap! Emily, as a fellow spoonie, I cannot even BELIEVE you went through this, and yet I can totally believe you went through this, if that makes any sense. I am so sorry for all you’ve endured – with a heaping topping of typical jerkish medical incompetence to boot – but you’re just amazing for sharing your story like this. THANK YOU, and my thoughts and wishes go with you!

    1. Thank you! I know exactly what you mean. Sometimes I feel like me story is completely unbelievable, and other times I wonder just how common it is. How many more patients out there are waiting to be heard before they are actually HELPED by the medical community.

  2. It’s astonishing how incompetent docs can be. And how pissed they get when you point it out.

    1. Yep, they take it as a personal insult. Even if you present it in a way that protects their egos, you’re not guaranteed an actual listen. Like, hey, I don’t know if I told you this, but it might change things…

      Nope. Some of them won’t reverse a diagnosis for anything.

    1. That sounds like fun actually. I’d settle for TPing the doc’s house when I get my throwing arm back. 🙂

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