Many of us fibromites also suffer from other debilitating problems: migraines, irritable bowel and bladder syndrome, joint swelling, dry mouth, restless leg syndrome, dizziness, PMS, depression, panic attacks, scoliosis… the list goes on and on. My mom and I both suffer from other diseases besides FM, but in this entry I want to focus on Chronic Fatigue Syndrome and the misunderstandings that go with it. I don’t claim to be an expert, but this has been my experience.
CFS is another one of those invisible diseases that is diagnosed by examining the symptoms and ruling out any other possible causes. The problem is, the array of symptoms can be caused by many other things, such as sleep apnea, and all of them are difficult to treat. The irony of this illness, especially put together with FM, is overwhelming: chronic pain interferes with sleep patterns, and a lack of sleep lowers the body’s pain threshold. Weight gain, a side effect of many fibromyalgia medications, can worsen this cycle. So can depression and anxiety. Restless leg syndrome can also keep you awake all night, and, of course, there’s just plain insomnia to prevent you from sleeping no matter how exhausted you may be.
It’s not easy being a teen (gotta love those puns) with this disease. “Getting tired” is a common complaint in high school; teenagers’ internal clocks are set to stay up until 3 AM, while the real-world clocks are set to wake up at 6. Chronic Fatigue is not quite the same thing, though. I often go to bed at eight o’clock, long before most of my friends are even home, just so I can manage to get up the next morning. The exhaustion is debilitating enough that it keeps me from going to school. Parties and get-togethers take a whole day of planning, and I have to make up excuses to leave early or avoid sleeping over because it’s too hard to be away from my bed that long.
The cognitive impairment is like fibro fog times ten. When I have fibro fog, I stumble over my words, say things backwards, forget where we parked or what my phone number is. When I’m suffering from “fatigue,” I can’t speak at all. I see your lips moving, but I have absolutely no idea what you are saying – and even if I did I couldn’t answer you. People often mistake my blank stare for apathy or even anger, but it’s nothing like that! I want to know what you have to say, but I just can’t understand you. Sometimes, when it’s really bad, I can’t even hear you. And when I start crying it isn’t because of anything you did or didn’t do, it is because I’m frustrated. I’m frustrated at myself and my body because I care about you, I care what you’re telling me and I want to understand, and yet it seems like you’re speaking some totally alien language. Every time I start to grasp the meaning of the words they slip away.
I have heard it said that people suffering from this “fatigue” aren’t capable of completing a thought, but that isn’t true in my case. In fact, I can’t stop thinking; just because I’m unable to communicate any of those thought doesn’t mean they’re not there. I can write entire stories in my head, and I will even write music or practice my scales, picturing how to play a song on the piano, sometimes pretending to sing or fly. It’s almost like “zoning out,” but for hours at a time – my own built in coping mechanism.
There are many people who have a hard time understanding this disease; as I write this, I think of my friends. They know I have fibro and CFS, but it’s hard for them to comprehend what that means. They don’t understand why I never want to sleep over, or that when I joke about shaking because of the Pepsi I had with lunch, what I really mean is that I need to go sit down before I pass out. They don’t understand that it takes a while for me to react to what they say because I’m still processing the words, not because I’m faking the emotion. They are loving and supportive, and it’s not their fault they don’t get it. “Pain everywhere” is pretty self explanatory. “Always tired” is a little more misleading.
For more information,
is a wonderful article on what it really means to have CFS. It’s very useful both for those with and without the disease, and the first time reading it was when I finally realized that not only am I not crazy, I’m not alone, either.