Karma’s a bitch.
Years ago, when I was young and nubile and oh-so-ignorant, I remember having a conversation with my mother during one of my visits.
We were discussing an acquaintance of hers that had been ill with this new, “phantom” disease called fibromyalgia. According to my mother, this friend had been battling sore joints and constant pain, and had not been able to find any physical cause for her discomfort.
And I, in ALL my self-righteous glory, and clearly still brainwashed with the put-up-or-shut-up training mentality beaten into me from my years of training as a figure skater in the seventies and eighties, said with a side eye and more than just a little sarcasm;
“Sounds like it’s all in her head.”
I still cringe when I remember that conversation.
Cut to more than 20 years later, and my life has been irrevocably altered from fibromyalgia. I wonder if it’s the fates’ way of teaching me a lesson in empathy, or just dumb luck.
Either way, it’s no picnic.
So, you may ask……
What exactly is fibromyalgia?
Fibromyalgia is PAIN.
Now, for the long answer, I’ll put on my “scholarly cap” and quote the Mayo Clinic definition of fibromyalgia for those of you who like more scientific jargon.
According to the Mayo Clinic website, “ Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals.” (Aug.11,2016)
The key symptoms I have encountered with my fibro are:
- Chronic pain and stiffness in my joints, particularly in the morning. I’m not talking just a little bit of stiffness. I’m talking put-on-a-suit-of-armor-and-try-to-walk-down-the-stairs stiffness.
- Chronic muscle aches, and, just like my joint pain, this can be ANYWHERE. Sometimes my fibro attacks my hips, sometimes my hands, fingers and ankles, sometimes my neck and spine….it’s always a new and exciting surprise to see where my fibro will attack each day.
- Fatigue through out the day. The pep talks I have to give myself to get vertical each morning are getting longer and more ridiculous as the months go by.
- The inability to get a restful nights sleep. There is nothing worse than sleeping for 8 hours and waking up feeling even less rested than you were the night before. Often, my body feels like I’ve been hit by a Mack truck.
- Fibro flare ups that can last anywhere from 4 days to 4 months. When I overdo it, I pay for it. The worst flare I ever had lasted 4 months. You know the pain you feel when you’ve had a really hard work out? Now take that, multiply it times ten, and make it last for 120 days without any relief.
Yup, that’s a fibro flare up.
- Incredible tenderness to the touch in some not-so-convenient areas. My hips often become so tender to the touch I can’t sleep on my side for more than 5 minutes before the pain and pressure becomes too intense. And DON’T GET ME STARTED on how it feels to wear a bra when you are a fibro sufferer!
- Fibro fog. Basically, you are so freaking tired that even linking one thought to the next can be difficult. Say bye-bye to executive function and hello to a non-existent short-term memory. To be fair, I’ve had two concussions in the past five years, so some of those deficits are also linked to these events. (Yay for me!)
The “experts” will tell you that fibromyalgia is simply your body’s pain signals gone awry. When a house is on fire, a siren sounds so the firemen can come out to extinguish the flames. When your body is in trouble, your nervous system sounds the “pain” siren to let you know there is a problem.
Fibromyalgia is your brain thinking there is a four-alarm fire and ringing the alarm, even though nothing is wrong.
Why does your body do this? Well, there are many possible theories, though nothing has been proven beyond a reasonable doubt. There are definitely pre-cursors that seem to be linked to the onset of fibromyalgia, disease or trauma being the most prevalent.
For myself, in the five years before I developed fibro I experienced, in chronological order:
A high risk pregnancy with morning sickness so severe I had to be hospitalized.
A head injury from falling on the ice when I was 5 months pregnant.
A move across country when I was 6 months pregnant.
A difficult birth and raising a special needs child (as a single mother) who never slept for the first 2 years of her life.
A second head injury from a fall on the ice.
Even with all of these pre-cursors to fibromyalgia in my medical history, when I brought up my symptoms to my doctor and REPEATEDLY told her something was wrong, it was very evident she did not believe me. Sadly, many doctors still do not believe in fibromyalgia to this day, which causes so much pain and suffering for those who suffer and go without the support they need.
For a more in-depth synopsis of the causes and symptoms of fibro, check out WebMD.
So, is there a cure? No. Some anti-depressants and anti-seizure medications are prescribed because, for some reason they tend to decrease the pain and fatigue in fibro patients. I’ve tried two of them, and both times, the side effects outweighed the benefits to the point I simply couldn’t continue.
And don’t get me started on the withdrawal from these meds.
WORST I have EVER felt physically.
Honestly, when I’m not in a flare up, life is not bad. I’m a little more tired than I used to be, and I have never slept well in my entire life, so I don’t know any differently.
But, here’s the kicker, you live in constant fear of provoking a flare.
If I do too much, if I stay on my feet too long, if I exercise the wrong way (anaerobic exercise is a no-no now) I pay for it.
And no one knows or believes you are suffering, because you still look the same. I might walk slower when I have fibro, but here is no outward sign of the disease, and that’s the stink of it all.
So for me, fibro is my new F word. It rules how I live my life, and dictates what I can do, and for how long I can do it.
Every. Single. Day.