I think before I commence any posts about daily life in particular with fibromyalgia, it would be helpful to my readers to know when this illness appeared in my life. I have found that relatively everyone who has been diagnosed with fibro has a very similar story in the general and a quite different story in the particulars, with all being legitimately life-changing. Herein follow my story’s particulars.
In the fall of 2010, about a month after graduating college, I began having horrible, deep, almost indescribable eye pain that I thought was caused by the hours of staring at a computer screen required by my then job, accompanied by endless, life-disrupting headaches. I soon after began noticing that when my sister’s dog jumped on me, it hurt far worse than it should, even when I was wearing jeans, and the pain would continue to throb up to a few minutes after impact. I further noticed that my arms would ache in the mornings, almost like my skin was horribly dry and tight. And I would also very often just “not feel right,” which was frequently the only way I could describe it.
After a self-diagnosis on the Internet, trips to my family doctor, eye doctor, and rheumatologist, and a terrifying MRI to make sure it wasn’t a brain problem (an experience made far worse by my condition), I was officially diagnosed with fibromyalgia.
It was when I finally saw a list of fibromyalgia symptoms that I realized how many I was actually dealing with and had just assumed were either normal or quirks I had. I realized that I had actually been living with mild fibromyalgia since I was about twelve years old and had had no idea that was the cause of so many problems, until it had suddenly come to full-blown fibromyalgia. Among the biggest discoveries was the realization that I had been dealing with depression since well before college, which became much more pronounced around the time of my diagnosis.
Thus ensued the medication game: trying a new medication to ease my symptoms for two weeks up to a couple of months for the next two years. I can’t even name all the medications I have been on, but I have been on many different kinds, from anti-depressants to muscle relaxants.
If you have ever heard of fibromyalgia, chances are you’re under the impression that it is either boloney or just back pain. Whether that’s all you know, or you never heard of it, in a nutshell, it is an incurable syndrome (meaning they don’t have a known cause or cure for it, as opposed to a disease, which has a known cause) that basically puts your entire body into overdrive. It messes up every single body system—that means your digestive system, your nerves, your brain, your skin, your muscles—everything is affected. And all of your senses and nerves respond to any kind of stimuli in a very exaggerated and abnormal way. Poke me on the arm, and I may cry, whereas a healthy person wouldn’t even flinch. That’s the nervous system in overdrive. Put me in Walmart on a busy evening, with people rushing around me and talking, ads playing, music going, air blowing past me as I walk, smells everywhere, and I will be exhausted by the sensory overload.
But it’s not just reactions to seen stimuli that’s to be dealt with. There is random, daily—hourly—pain in all kinds of forms: tingling, throbbing, stabbing, breath-taking, aching, and crawling, and even the sensation of a sunburn when none is there, all that happen without warning and without any seen reason. And without any way to soothe it. Muscle twitches and pain, headaches that envelop my entire face, aching all the way down into my eyes and my jaw and my teeth. The feeling of bugs crawling on you, your scalp aching, weird airy sensations on the arch of your foot….
Now, you may notice that a lot of these symptoms are things that everyone experiences occasionally. But the constant occurrences, the severity of each, and the combination of dozens and dozens of symptoms is what makes this far more than what healthy people deal with once in a blue moon.
Fibromyalgia sufferers also do not sleep well—their muscles won’t relax, so even though they’re lying down, their body won’t let them rest but rather twitches and tenses all night. Which means no normal REM sleep pattern. Which means when I sleep 10 hours, I feel like I slept 3. Add to that a reversed sleep cycle—that means I’m like a night owl on steroids. Not only does my brain finally start working semi-normally at night, I often can’t go to bed until some people are getting up. Then once I do go to sleep, I can hardly bring myself to get up because I’m not rested.
As I sit here trying to even think of all the symptoms I live with, I can’t even name them all, not only because there are so many, but also because another is memory problems. I noticed shortly before being diagnosed that my once quick, sharp memory was becoming startlingly dull. I couldn’t even remember conversations from the day before. And even now I constantly have to write things down to remember them, like simple things I want to talk to my husband about or things I need to do that day.
There are actually so many fibromyalgia symptoms that occur weekly, daily, and sometimes constantly, that I won’t even bother typing them all out. I’ll rather include a link to a very realistic list of 100 Symptoms of Fibromyalgia, well over half of which I live with.
One of the worst symptoms I deal with is exhaustion and lack of energy. If I want to dust and vacuum the house all in one day, and do the dishes and make dinner, I could perhaps if I happened to have a sudden burst of energy. But I would pay for it the next day and maybe beyond, as that is more than my body can handle. I have to pick one or two active things and only do them, or I shoot myself in the foot afterward. Another is what we call fibro fog—which is exactly how it sounds. It’s like you’re in a mental fog, meaning you lose your train of thought easily, you often have trouble thinking of the right word, and altogether you just don’t feel like you are really there. I call it feeling “half-alive,” and I spend most of my life feeling like this. It has honestly made some of what should be the best times of my life far from that, as I’m not really in the moment and I’m also not nearly as emotionally involved as I would be were I “fully alive.”
And that, my friends, was the surface-level history. Its deeper repercussions are what will shortly follow.