Unusual Fibromyalgia Symptoms Not Everyone Knows About
And a Few *Fun* Stories for Each
What is Fibromyalgia?
Click any article or research paper, and fibromyalgia is often described as a disorder with “widespread pain and unrefreshing sleep”.
But pain and fatigue are not the only fibromyalgia symptoms.
Unfortunately, when I was diagnosed about a year ago, my doctor never told me what a fibromyalgia diagnosis really means, and for a long time I questioned my own diagnosis and wondered if there was something else wrong with me.
The confusion can be frustrating.
No, not just frustrating. Confusion can be a damn waste of time, and instead of focusing on treatment plans I was focused on my more concerning symptoms wondering if it was going to get worse or due to actual damage.
I don’t blame my doctor at all. It’s unfortunate, but most doctors seem to be clueless about fibromyalgia — some of which don’t even believe in the condition to begin with. Many more just think fibromyalgia is widespread pain and fatigue.
In this post, I want to share some symptoms of fibromyalgia that not everyone knows about — including FM sufferers themselves.
Before I get started, I want to disclose that I am not a medical professional, and this post is in no way meant to diagnose or provide medical advice. If you think you or a loved one has fibromyalgia, ask your doctor.
Paresthesia
A while back, my mom and I were talking about bugs, and our intense and often irrational fear of bugs like roaches and spiders.
Then, I turn to her and say, “Did I ever tell you why bugs freak me out so much?”
My mom shrugs, probably half-expecting me to tell her about the time I was nearly asleep when a roach crawled over my leg, but nope. That wasn’t the underlying reason of why my fear had gotten more intense in the past few years.
“Sometimes I get sensations of bugs crawling on me,” I tell her, explaining that it wasn’t anything necessarily to worry about — just another fibromyalgia symptom I deal with. “On top of that, I get these sensations that feel like bee stings.”
And yes, it feels exactly like bee stings. I would know — I’ve been stung at least twice.
Which is also why I didn’t even realize I was stung by a bee until I felt the stinger poking out of my neck a year ago.
Each person experiences paresthesia differently, so while one person may experience it as bug crawling sensations, another person might feel other sensations such as burning or tingling.
Further Reading:
Odd nerve sensations in fibromyalgia
Low Body Temperature
According to Very Well Health, “In addition to a decreased body temperature, research shows that people with FMS have trouble adapting to temperature changes and have a reduced pain threshold to both heat and cold stimuli — meaning it takes less extreme temperatures to make you feel pain.”
I remember my senior year in high school, I’m sitting in my forensic science class with my friend and our teacher is talking about estimating a time of death through body temperature.
I can’t remember the exact assignment, but for some reason we were taking our own temperatures and I turned to my friend and said something along the lines of, “According to this, I’ve been dead for about four hours”.
To be fair, I think I miscalculated.
But my temperature did get pretty low even in the middle of summer, which explains why my hands, feet, and even the tips of my ears often felt really cold. In fact, sometimes my fingernails had a tinge of a bluish/purple color.
Friends, family, and doctors believed it could be a thyroid condition. And despite the fact that I learned that people with undiagnosed thyroid issues could have normal thyroid levels for years despite showing symptoms, my thyroid levels were thoroughly checked.
My thyroid was healthy.
My fibromyalgia was the cause.
Paralysis or severe weakness
I never had any temporary paralysis, thank fucking god, and I am fairly certain paralysis, even temporary, is rare in fibromyalgia.
But a couple times I was in so much pain that it felt like my “legs just couldn’t work right” and I have fallen right after waking up from bed.
Then there was the incident at the gym last year.
For a couple of months, things were going really well for me. Well, kind of.
I had just quit my job as a barista and was healing from a huge flare up and had finally started to feel better.
I was seeing a therapist and working on accepting my illness, and I was also going to the gym regularly again.
I mean, there were many things I couldn’t do which was so frustrating, but I still loved swimming laps and lifting weights.
Then one day I decided to see the personal trainer.
Big mistake.
One minute, things were going well, and I was doing some sort of version of squats, and the next thing I know my vision goes black.
My legs feel stiff.
Numb.
I’m nauseous and my head is spinning, but I manage to turn to my personal trainer and say, “I think I’m going to puke.”
I grab my phone and leave my water with him, and thankfully he was patient especially because I told him of my preexisting conditions — oh, and when discussing a target heart rate, I had to inform him my resting heart rate is 100 bpm.
Anyway, the walk to the bathroom seems long, probably because the only bathrooms on site are in the locker rooms.
Plus, walking with numb legs were getting harder and harder.
My steps become smaller, and pain radiates through my upper body with every step I take.
When I make it to the bathroom stall, I finally projectile vomit.
Everywhere.
Completely missing the toilet, and most of it getting all over my shirt (ah, the downsides of having big boobs).
I have no idea how long I am there, but it’s long enough for my personal trainer to text me asking if I’m OK.
For a while, I’m sitting on the bathroom floor crying, and every attempt at standing up ends in failure.
I start to wonder if I am going to need to call my mom, because the cost of an ambulance ride is definitely not worth it.
I eventually made it out of there and drove home, but for three whole days I could barely walk due to the severe weakness and numbness in my lower body.
Needless to say, fibro flares can get bad fast.
And not everyone heals from a flare up as I did in this situation.
Seizures, seizure-like episodes, and stroke-like symptoms
I wrote a post about the time that I temporarily lost the “ability” to read, kept it a secret, and got fired from my job after a dog was sent to the ER and another dog had a seizure and died.
Ironically, I was having seizure-like symptoms at the same time the dog was having a seizure.
Years later, I’m working as a barista and find myself struggling to work every day due to neurological symptoms.
It started off with things like “zoning out”, forgetfulness, and confusion.
A customer even came up to me and told me her husband has absent seizures, and that I should see a doctor since it looked like the same thing.
On top of that, I was having weird episodes of euphoria and even slurring my words.
Then, the weirdest symptom happened.
I couldn’t seem to tell the difference between the sizes of things — like the size of a quarter and a nickel or dime at times.
I had repeatedly gotten my drawer wrong and change for customers wrong, and I was the freaking money handler.
And it was also super embarrassing when a customer would point how much drip coffee he wanted in his cup, and I just couldn’t seem to measure depth or size anymore.
So, an inch from the top was more like two inches or…well, frankly, I don’t know, but according to my co-workers, I was grossly off.
With many of my drinks.
The only way I made them correct was when I measured them, which not all drinks had specific measurements. Instead, some were a quarter of our sweet milk and 3/4 of skim milk.
But like I said, I couldn’t tell sizes, had seemingly poor depth perception, and issues comparing things like coins with very poor accuracy.
These symptoms were the main reason why I quit my job. Even my pain wasn’t that bad.
Sometimes the fibromyalgia symptoms that are the most debilitating is not the pain at all.
Read more: 251 symptoms of fibromyalgia
If you are interested in more, often usual symptoms of fibromyalgia, you can read this article here (not written by me).
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