Ever read someone else’s Fibromyalgia story and feel a bit better because you can relate?
Because that means maybe your symptoms aren’t all in your head?
That there’s hope?
I do.
And I’ve finally written a blog post about my journey with Fibromyalgia.
Here it is, my Fibromyalgia story, in a nutshell:
My Fibromyalgia story
My Fibro symptoms started in March of 2010 when I was 17 years old and a junior in high school.
I’m 31 years old now, married, with a 6-year-old son (and a kickass 20-year-old bonus daughter).
I still have symptoms, but nowhere near as bad as they were 10+ years ago.
It’s totally an ebb-and-flow kind of thing.
First, stabbing headaches
My first symptoms were stabbing headaches, though at the time I had no idea what they were.
They felt like tiny but mighty lightning bolts or ice picks that slashed through my skull.
I started counting because I’d get so many – when it was really bad, I’d count about 75-100 stabs a day. I called them “head stabs.”
The head stabs made concentrating and enjoying life hard.
Suddenly I was in near-constant pain. A millisecond at a time.
Slice through my eye and temporal lobe.
Slice through the top of my head to deep in the core of my brain.
Slice and stab every inch of my head so badly I’d stop in my tracks. It got very distracting on top of painful.
The stabs became so jarring and helped seal the deal for doing my senior year of high school online (I was already wanting to do that for other reasons).
Scalp pain starts
That time is marked with incredible scalp pain.
That pain was allodynia – in which things that shouldn’t cause pain do.
And suddenly my scalp couldn’t handle anything on it, touching it, moving.
My scalp felt bruised and beaten.
Thumb-sized spots of what felt like smushiness cropped up. I remember feeling like I could put my finger anywhere and it’d feel like it sunk.
Those craters felt painful. My pillow became an enemy. I remember crying a lot.
A LOT.
And my hair – my thick, wavy hair – was very heavy and painful.
I never chopped it off, but contemplated it. (I did develop a bad habit of raking out my hair to thin it out though so to lessen its weight on my scalp, and hasn’t helped.)
This kind of scalp pain is a super slow, wish-i-would-die pain.
I remember I felt like I was sort of dying, slowly. And I kind of wanted to because escaping via sleep wasn’t cutting it.
Honestly out of everything I’ve dealt with yet with Fibro – the scalp pain may have been the worst.
Pile on the medications
In between the scalp pain and stabbing headaches, I went on several medications, many of these all at once. This was 2010-2013.
First, it was an anticonvulsant commonly used for headaches, topiramate.
Then a muscle relaxer was added, cyclobenzaprine.
Then a few more as my symptoms ebbed and flowed.
Indomethacin.
Prednisone.
My pain was still high, and my energy was at an all-time low.
I would work and then sleep til late in the day because I just could not get my body out of bed.
My body was cement, no matter how much I wanted to move it and not be a useless blob of pain.
And when I slept, I now dreamed horrible dreams.
Nightmares.
Nightmares
These dreams always involved death. Killing. Torturous scenes.
Medications can do weird stuff, at least to me.
At least to my dreams.
I would have 7-10 nightmares a night, every night.
I’d wake up after each one and be like what the fuck and then think about them all day while being a tired piece of poop.
Going off the medications
Despite my still persistent symptoms, I decided to go off all of my medications. They didn’t help enough, and the nightmarish side effects were too much.
I still don’t like dreaming, though I rarely have nightmares now.
And it wasn’t just the bad dreams that caused me to go off all meds. The lack of appetite, the mental fog…I could go on.
In 2014, I went off all medication. I felt better. Less foggy and numb.
I had been a robot for years and wanted nothing to do with that feeling ever again from little pills.
I started doing yoga and longboarding. Not always consistently, but enough to show me that it helped the pain.
My pain started lessening.
And that lasted a few years until I got pregnant.
Fibromyalgia during pregnancy
When I got pregnant I thought my pregnancy would drastically increase my pain.
I was very nervous it would make my symptoms regress, make them worse, or trigger new ones.
I think my symptoms scaled back slightly, and I don’t think I developed any new ones during pregnancy or postpartum (at least immediately).
A natural childbirth was damn hard and painful, but I think that the Fibro scalp pain was/is worse!
And no beautiful baby at the end of scalp pain either.
So in 2017, I became a mom. And my symptoms were okay. I kind of cruised on medium for a while.
More stress, more pain
Then 2020 hit. I was in a lot of pain.
I was cooped up at home with a 2-year-old. We had lost a dog during the early months of Covid.
I was working from home and getting up super early at 4-5 am to teach kids English on the computer. I had been doing that for a few years.
The required energy I barely had and lots of sitting and tight hips.
My hip pain, back pain, neck pain, every pain increased.
At this point though, I had learned my scalp pain could be managed by wearing my hair loose and not up, and not in a ponytail that pulls on the scalp.
But anything with a waistline…
I could not wear pants or anything around my waist for a year or so. My clothing had to be so loose for me to function. Around the waist but also the neckline and armholes. Clothes felt like they burned my skin.
I had to wear dresses non-stop for months! I’m a 5’11 girl who prefers being able to do a lunge at my leisure, thank you.
I’m not sure how that symptom died down (but is still present), but for now, I can wear pants sometimes.
Though I live in jumpsuits now.
(If you know of a good no-string-no-cinch waist jumpsuit or romper, holler in the comments below!)
Adopting a growth mindset
I didn’t want medication, and I also didn’t want anything to do with doctors at that time. So I started reevaluating how I was living my life.
I also started phasing out doing the early morning teaching, which improved my energy levels.
At the end of 2018, I graduated from UCF with a degree in elementary education.
My last semester focused heavily on a growth mindset, and that stuck with me.
I decided that I no longer wanted to be a brick-and-mortar teacher, but I did want to continue bettering myself.
So a growth mindset is what I started focusing on.
And I haven’t stopped since.
One of the first anti-growth habits I stopped was talking badly about myself. I grew up where this was the norm.
Critiquing. Self sabotaging.
So I started learning about when and why I did these things to myself. I began to notice patterns and they became easier to break.
That gave me the motivation to improve myself more.
Because I noticed I physically felt better when my mind felt better.
And my mind felt better when my body didn’t feel like complete shit.
Car accident
I was doing pretty good symptom-wise. I could kinda wear pants.
Stand for a little more than usual. Sit for a little more than usual.
Then last January I was sitting at a red light when another car slammed into mine. While I didn’t feel pain immediately, I felt excruciating pain days later and later learned I had four herniated discs as a result.
Now I was dealing with pinchy-butt pain (tailbone, rather), an extra-achy back, and yada yada.
The point is, I went three steps back after finally going two steps forward.
I’ve had back surgery now and that pain feels better, but I have new symptoms now to learn to live with.
That’s such a hallmark of Fibro – learning and adjusting to new pain, constantly.
My Fibromyalgia today
I still struggle with Fibro of course.
I’m not magically “cured” or “all better.”
I enjoy good days when the pain is barely noticeable.
Sometimes I can wear a cute pair of skinny jeans or denim shorts for a few hours.
But other times I can’t, I have no energy, and I’m in motherfucking pain.
Anyway, that’s my Fibromyalgia story in a nutshell.
What’s yours?
