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May 12, 2014

Fibromyalgia Awareness Week: My Story

It's another special week here on my blog, as today is Fibromyalgia Awareness Day. I've referred to my health problems in the past and very briefly listed them in my about page, but I wanted to take this opportunity to spend the week sharing my story, both to help you all get to know me and my life better and also to help educate those of you who aren't familiar with fibromyalgia and other chronic invisible illnesses.

If you suffer with fibromyalgia (that seems such an understatement to put it that way), please take these posts as encouragement that you're not alone--and do keep reading the rest of the week for some help I want to offer. And if you don't have this or other such illnesses, please take this opportunity to learn a little more about what we deal with--understanding is one of the things we crave the most.

The first time I realized there was a serious problem with my health was the fall of 2010, just a few months after graduating college. Within a month or two after I graduated, I began having severe headaches and eye pain to the point I just knew there was something seriously wrong with my brain or my eyes. But an eye appointment and a brain MRI of torture showed no problems.

I also realized that when a dog would jump up on me, it would hurt like crazy for minutes after, my arms would just feel very strange all the time, particularly being very achy and tight in the mornings, and I would randomly just not feel right, for lack of words to describe it. I was also depressed. Those were the paramount problems at the time.

By the end of 2010, fibromyalgia was mentioned to me in passing, and I looked it up online and realized I matched the symptoms exactly. I was certain that's what I had, and a doctor and a rheumatologist both soon confirmed it for me. Fibromyalgia is referred to as an incurable syndrome, with no established cause, and the only test for it is seeing if you have a certain number of tender points all over your body--basically the doctor pushes on you and you hurt in a lot of places you shouldn't. I know I also have Chronic Fatigue Syndrome to go along with that, I just didn't bother getting an official diagnosis for it. It's a similarly incurable, incapacitating, not well understood chronic illness.

With the fibromyalgia diagnosis came the typical treatments of pain medication and an antidepressant, later a muscle relaxer and another antidepressant, and others I can't even remember. None really helped, some made me gain weight, some made me lose weight, and it was really all just a very sad game to try to find something that made me feel a little bit better.

Through having a diagnosis and learning more about fibro, I was able to realize in retrospect that I had been dealing with mild fibromyalgia since I was about 12 years old, because of random indescribable kinds of sensitivities and pain I would experience that I thought were either somehow normal or just quirks, digestive problems, and sleep problems. The symptoms worsened some by the time I was in college, and my depression really progressed over those four years. All of those symptoms--and much more--for some reason really exploded after college, possibly brought on by the stress of those four years or simply by the fact that if you're sick and aren't treated, of course you'll become worse as time goes on.

At this point I was dealing with the daily symptoms of full-blown fibromyalgia: incapacitating headaches, depression, exhaustion, Irritable Bowel Syndrome, food allergies, nausea, sensitivity to light and sound, brain fog (what we call fibro fog), memory problems, stiffness and aching, random hard-to-describe pain from tingly to take-your-breath-away-stabbing pain, sensitivity to touch and pressure, poor sleep, and a reversed sleep cycle (exactly what it sounds like), just to name a few. Not to mention hair loss, chest pain, night sweats, weakness, shakiness, dizziness, and sensitivities to temperature, especially the cold. (There really are too many to list. Here's a more comprehensive list for you.) Basically every system in the body is in overdrive and every reaction and sensation is heightened incredibly.

All of those symptoms as just words on a screen seem so insignificant. But put them into your everyday life and your whole world is turned upside down: Poke me on the arm, and I could cry, whereas a healthy person wouldn’t even flinch. That’s the nervous system in overdrive. Put me in Walmart or a restaurant, with people rushing around me and talking, ads playing, music going, air blowing past me as I walk, smells everywhere, and I will be absolutely exhausted from the sensory overload, not to mention from the act of walking around. Headaches that bring you to tears out of sheer pain and helplessness, exhaustion to the point of being in bed all the time, with taking a shower being a major accomplishment, the inability for your system to empty itself properly and without pain that literally makes you pass out, a fogginess that makes life seem like nothing but a blurry, bad dream, even on wonderful occasions like your own wedding.

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As you may know, I began dating my now husband around the time of my diagnosis, and we got married in May of 2012. (You can read more about our story here and here.) In the year and a half following that, I ended up in the ER three or four times, one with my first panic attack. That really shocked my system and brought about even more problems. I was gradually getting worse as time went on.

In those first few years of knowing I had fibromyalgia, I knew there was no cure and I would always be this way. Honestly, as is sadly normal with chronic illness sufferers, I felt completely worthless as a human being. I couldn't even function on a daily basis, like cleaning the house or fixing dinner every night or even getting out of bed and taking a shower every day. Holding a job was out of the question, and I had to stop my freelance editing because of the fibro fog and lack of ability to concentrate. I had gone to college for four years, gotten a degree, and was doing absolutely nothing of value. Simply surviving each day was my only accomplishment. I was so miserable, I really didn't even want to live anymore, and really only Jesus got me through those years. You just can't imagine the misery until you've experienced it yourself.

Now, living with this illness is hard enough, to put it lightly, but the kicker is that with this illness, and others like it, we don't really look sick at all. And sometimes we kind of like that because we can almost pretend that we're okay as a very brief means of escape when we're out or at a special activity. But this disguise understandably leads onlookers to assume we're totally fine and just lying about how we feel or exaggerating. But I promise you--there is far more going on in our bodies than you can see, and every single symptom we mention is just as real and just as bad as we say it is. A smile on our face does not necessarily mean we are feeling okay but often is our attempt to hide the truth.

I hope this brief (long as it is on screen) account of my first years living with fibromyalgia has given you a clearer glimpse into what those of us suffering with it deal with every day. I do have a plot twist coming to you on Wednesday though, and I'm eager to really offer some hope to those of you living with this illness that I've been waiting to share for a while now.


Be sure to read Part II here!

P.S. Linking up with Funday Monday, Monday Morning Gossip, Manic Monday here and here,


  1. Hi Kacie..I hate reading stories like yours, mainly because I can relate..sad huh? I can handle myself in pain more than other people by far. Ever since I had cancer, I have been diagnosed with "incurable" diseases. I'm so tired of hearing the "we can give you something to ease it, but you'll never get rid of it" line.
    More recently, after 3 different doctors, I have a referral to a rheumotologist cuz they're thinking it's Fibromyalgia this time. Here's to us and everyone else suffering from chronic pain....the most pain free life we can live!!

    Thanks for sharing this!

    1. Thanks so much for reading, Bobbie! I'm so sorry you're dealing with this pain and problems. I know that game of going from doctor to doctor--it can be so discouraging.... I hope you'll come back to see the rest of my posts this week, and I'm glad you stopped by!

  2. Kacie,
    It was so great to read your story. While I don't suffer from fibro I do have a co-worker that does and it's wonderful to hear what you're going through because it helps me to understand them better. It's hard as a person without the disorder to wrap my head around being in constant pain and reading about your story really puts it in perspective for me.

    Thank you for sharing!

    1. HI there! Thank you so much for sharing this with me--it is wonderful to hear. Knowing that someone's eyes have been opened more to what we deal with is really encouraging, and I am so glad to hear I've helped. Thanks so much for stopping by and taking the time to comment!! :)

  3. I'm so sorry you have to go through this, Kacie. I can't imagine how hard it must be, both physically and mentally. Thank you for speaking out about this and for helping people like me, who may not have heard a lot about this disease, be aware of it and how it affects people. Hang in there. Your jewelry is beautiful, and I hope your day is going well:)


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