What does Fibromyalgia feel like?
Fibromyalgia is a very tricky, elusive disease. It comes and goes in cycles, attacking different places in your body without any seeming pattern or sense to it. One day you’re feeling pretty good, and the next day you’re feeling so dreadful you can hardly hold a coherent thought together, much less be productive and cheerful at your work.
I read a great description of Fibromyalgia as feeling “flu-like.” Think back to the last time you were “coming down with something.” It’s that day before you start showing the obvious symptoms of sneezing, coughing and fever. On that day before, you just feel so generally “blah,” but you don’t know why. Your voice sounds fine. You’re not sneezing. You don’t have a fever. You just feel so tired, and achey, and awful all over. (The medical term for this is ‘malaise.’) You feel so poorly it is difficult to concentrate at work. Heck, it’s difficult to concentrate enough just to drive to work, and you feel totally spaced while driving. You feel so awful you just want the day to be over so you can go to bed, and hope that tomorrow will be a better day.
That’s Fibromyalgia. Sometimes the next day is better. Sometimes it’s the same thing all over again. And, sometimes, despairingly, it’s even worse.
Think back again to that pre-flu day, and how difficult it is to do the most ordinary things—like just getting out of bed.
The day goes something like this… Your alarm goes off, and you’re still so tired you can’t believe it’s morning already and you’re actually expected to move. You’d give just about anything to sink back into your mattress and not move all day. You hit snooze so many times, adrenaline finally kicks in a bit, screaming: “Now you’re running late! GET UP!!!” You depend upon that adrenaline to help you get out of bed, and stumble to the shower. You can’t believe how much it hurts just to walk those few steps. You look longingly back at your bed. “Don’t even think about it!” screams your adrenaline, pushing you toward the shower again.
You don’t want to strip out of your pajamas. You feel chilled and stiff all over. Getting naked and soaking wet seems so very unappealing at the moment. You run the shower, getting it as hot as you can stand, and hoping the steam will warm the bathroom up a bit. You begin to peel of your pajamas, wondering at how much it hurts just to lift your arms over your head, and how stiff you feel as you bend down to remove your bottoms.
Finally, you step into the shower. “Get moving! You’re late! You’re late!” screams your adrenaline again.
The water feels overly hot, but you still feel cold all over. You reach for the shampoo, but it hurts to raise your arms over your head. You decide to just stand there for a while before trying to shampoo your hair, hoping the hot water will ease your still, aching muscles up a bit. You close your eyes, and almost fall asleep again right there in the shower.
“Up! Up! Up!” yells the adrenaline again, “This is no time for a leisurely shower! Get washing!”
You reluctantly reach for the shampoo bottle again, bracing for the pain of lifting your arms over your head to wash your hair. It’s painful and uncomfortable, but you grit your teeth and get the job done. You reach for the soap to wash your body. You can wash your mid-boy OK, as that doesn't involve much bending or reaching, but you dread reaching down to wash your legs and feet.
You consider skipping this step, thinking maybe the shampoo suds dripping down off your head will count as a full-body wash.
“Don’t be gross. Just wash! Late! We’re late!” screams your adrenaline.
You reluctantly bend to wash your legs and feet, amazed the amount of pain this causes in your spine and leg muscles. Just the act of bending over makes you suddenly dizzy, and you grab onto the walls of the shower to remain standing. You try to ignore the dizziness as you wash, dreading the head rush you’ll get as you straighten up again.
The head rush hits. Swarms of black dots swim in front of your eyes. You put both hands out to brace yourself on the sides of the shower, until things steady again.
You've done it. You've finished your shower. Now, only 16 hours to go and then you can go back to bed again…
Now, imagine this going for ten, twenty or thirty years.
And, all through this time, you look like “the picture of health.” Your cheeks are rosy. You certainly don’t “look sick.”
You make an appointment with your doctor. Surely feeling this poorly can’t be normal? (And, surely this is fixable!)
Your doctor checks you over. Every blood test comes back as perfectly normal. Once again, you appear to be “the picture of health.”
“Just stress. Try to relax,” says the doctor, “Get some exercise. That will increase your energy level.”
Exercise?! Just getting out of bed this morning seemed like a triathlon event. And, this crazy man wants me to exercise?! It’s a miracle I was even able to get dressed and make it to this doctor’s appointment—this appointment where I hoped I’d get some answers…
Welcome to the world of Fibromyalgia.
You wonder yourself—how could you look so normal on the outside, and have nothing show up on any of the doctor’s tests, yet feel so abnormal on the inside?
Surely, the doctor must have missed something! So, you make an appointment with another doctor. And, then another. Perhaps some doctor along the way begins to prescribe some drugs for you. Some anti-depressants that make you feel even more tired, and make you put on weight. And, you weren't depressed to begin with. The only thing bumming you out was how awful you were feeling everyday…
And, now you’re stressing out because you’re falling behind at work, and the house is a mess, and your spouse is getting frustrated since you’re irritable all the time, and just don’t seem to be “snapping out of this thing” or getting better. And, you never feel like having sex anymore because you’re always so tired, and achey feeling, and just want to sleep in your bed, not doing anything energetic in it…
And, when your friends call, you make excuses not to go out, until finally they stop calling…
But, maddeningly, this “illness” seems to come and go without pattern or warning. There are some days where you feel almost normal again. So, you think you’re “getting better.” Or, that latest pill (or homeopathic treatment you’ve tried is actually working, and you’ve found “it.” The right treatment! The answer to this puzzling mystery. You’re getting better now! You’re overjoyed, and tell everyone of this wonder cure you’ve figured out that improved your energy and dispelled your malaise.
You’re thrilled that things are somewhat ‘normal’ again, and throw yourself back into your work, trying to catch up on everything you’d fallen behind on. And, you throw yourself back into your housework, trying to get all caught up there, too, doing massive piles of laundry, and cleaning everything in sight. And, you call your friends again, and invite them all over, to make it up to them for blowing them off before. And, everything seems OK. Your wonder pill seems to be working and everything seems like it’s going to be OK…
Then, it hits again. You wake up one morning, and once again feel like you’re getting sucked into the mattress. It is so very, very hard to get up again. And, when your bare feet first touch the floor, the bottoms of your feet feel so tender and painful. Like someone was whacking at them with a baseball while you were sleeping.
“Oh no, not again,” you despair, wondering what type of doctor you should see this time. What is causing this?! And, who should you see? A podiatrist for your aching feet? A chiropractor for your aching back? An internist for your irritable bowels? A general practioner for your overwhelming fatigue? Or, maybe a therapist? I mean, how can you look like the “picture of health,” and feel so bloody dreadful!
(You begin to hate that phrase “picture of health.”)
You begin to doubt your own sanity. And, you feel angry at the doctors for not being able to give you a diagnosis, or provide any answers that make sense.
“It’s not stress!” you think angrily. “The only thing stressful in my life is how awful I feel, and all the problems that causes!”
And, now your house is half-torn apart from your cleaning rampage, and you have all those friends coming over for dinner, and you just took on an extra project at work to make up for the stuff you’d half-heartedly completed before. How are you ever going to do all that when you can barely manage shampooing your hair?!
Welcome to the world of Fibromyalgia. Perhaps one of the most elusive and maddening diseases on the planet.
AUTHOR UNKNOWN
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