Whew! 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: my fibromyalgia misdiagnosis.
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.
(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.
I want to slash all the tires.
That sounds like fun actually. I’d settle for TPing the doc’s house when I get my throwing arm back. 🙂
Amazing post.
It’s astonishing how incompetent docs can be. And how pissed they get when you point it out.
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.
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!
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.
I have had similar complaints, still fighting the doctors.
Back in 2014 I went to urologist, because of a lump I felt on my urethra. The Dr just said there is no lump, I was in agony going to the toilet, I could feel a blockage . Again I was told that’s not possible. I got a second opinion, intact it was his boss.
He ordered a cystoscopy and sure enough during the exam the camera showed scarring in the urethra. I was told it was pyronies disease, and it will heal in six months. That was 5 years ago, and the issue continues.
I have been diagnosed with fibromyalgia, however I feel this is wrong. I have tinnitus and pulsing in one ear. Yet according to the tests my hearing is perfect no hearing loss. I have one sided head pain which keeps me awake or wakes me up. Nausea which never goes away. I struggle with blurry vision and double vision.
Each year the symptoms get worse and worse.
This year I lost 10% of my weight in a week. My appetite has drastically shrunk I can manage a quarter of my usual food.
My breathing has got worse i fell out of breath just typing this message. Hopefully I will get a proper diagnosis and not keep being fobbed off as a drama queen.
I empathize. You deserve a doctor who will listen to you and do their best to help you. The symptoms you describe are very concerning.
OK… So as a woman with an unidentified white spot /lump (on my brain(we don’t know what it is but we will scan again) 🙄🙄, seizures and a diagnosis of fibromyalgia and FND due to leg pain, stroke like weakness, head migraines and loss of speach I’m now terrified 😳
I’m sorry you going through all that and don’t have any definitive answers. That’s scary stuff no matter what your final diagnosis. As I often find myself saying these days, I’m so much better off know that I know for sure what is wrong. A huge part of my well-being is just being able to name what’s wrong with me. I wish you the best, and have my fingers crossed for you.
This post is a revelation! I was diagnosed with fibromyalgia in 2008. I was relieved tbh that I had a name for all the symptoms I had istead of, hypochondriac. I only got that diagnosis after showing gp an article by Ester Ranson about her daughters illness! I was told that I would have to accept living a half life. Used to being very active, I thought “I’ll fight this” and everytime I did it came back and bit me on the bum, completely laying me out for days – sometimes weeks! And so symptoms got worse and constant headaches, migraines and ‘viruses were because I was taking too many painkillers and wasn’t looking after myself properly, no shit! I saw a new gp after one particularly bad episode this year when he thought I ight have had a tia as bp was soo high, which he thought was causing my blurred, double vision and migraine aura of flashing lights and dark patches in pariferal vision. More pills, continuing headache, waking me most mornings at silly o’clock. He finally decided to send me for a ct scan. This has come back showing a mass on left side of my brain. I Was told that if I get a piercing headache, to go straight to A&E as it might be a blood clot. In the meantime I am being refered for further tests….so just worrying really. Sorry such a long post but selfishly, I feel better for getting it off my chest! So if you’re still reading – thank you x
Hi Deb! I just got notified of your comment as I’m waiting for a routine MRI today. (Saturday appointments here are pretty calm, thankfully.) Anyway, having confidence in a diagnosis is its own kind of comfort. I’m glad you’re getting answers and I wish you all the best. Thanks for taking the time to leave a comment and tell your story. 💗