Fibromyalgia Monster

Fibromyalgia, the invisible monster in your body. It is widely misunderstood by not only family and friends but by our own doctors. It is often misdiagnosed or completely ignored out of ignorance or lack of information. It is impossible to see on most days and, even on those days when the symptoms are readily visible, most people think it is simply something temporary or 'all in your head'.

Fibromyalgia does has it's own set of difficulties and symptoms but it also seems to make those of us unfortunate enough to live with it more easily susceptible to a slew of other ailments. Almost as if the disease is lonely and wishes for playmates and some genie grants the wish. Suddenly the body that is suffering already with the pain and often debilitating symptoms of the fibro itself is invaded by all it's playmates. Some of whom decide it is a lovely place to visit but then they leave for greener pastures, others of which decide to move in and keep the fibro more permanent company.

If you are one of those folks with the misfortune to be diagnosed with this mysterious ailment, which even doctors are still baffled by, then you know what I speak of. Your symptoms probably started small, with a knee popping or some interesting, unknown, pains surfacing in different parts of your body. This might have been accompanied by anxiety, which always seems to go hand in hand with Fibromyalgia, like a wife or child it seems to come as a package deal. You might also have already had what they call TMJ, which is basically your jaw popping in and out of place and sometimes even locking out of position until forced back in.

But, you also probably learned to live with the minor or major discomforts. You learned your limitations and your abilites. You learned how to continue living even with this monster inside you.

Then one day flu season comes along. Somehow you have managed to catch it. "Okay" you say to yourself, "I've had the flu before and, though it isn't any fun, I can deal with it". What you didn't realize is that now that the fibro has a good hold on your body how much fun the flu would have playing with it. You didn't realize how much more your bones and joints would ache, how much more your stomach would hurt, and how much longer you would be sick with it. What lasts everyone else maybe a week goes on for three or four weeks for you. It hangs on like never before and seems to want to take up residence. Then one day thankfully it gets bored and moves out.

Down the road, as you've adjusted to all the other little things you have discovered about fibro and it's companions, you begin to develop symptoms that don't seem to fit your current diagnosis. You call the doctor, which is probably not a fun prospect because even the ones who accept fibro and somewhat understand it don't really 'get it', and you get an appointment. Tests are scheduled, more than you can stand, results gathered, and finally you are given another diagnosis. They aren't saying you don't have fibromyalgia, they are simply saying it has a new friend called -insert name here-. It varies but with our disease we are prone to so many other possible long term illnesses. Some are tolerable and others are debilitating, depressing, and almost impossible to live with.

The other side of an invisible illness like this are the people. Friends, family, strangers, and doctors, who do not seem to even want to understand. They think we are lazy, crazy, making it up, over-reacting, or some other belief that makes them treat us like we are less than they are. It seems it somehow gives them the right to talk to us disrespectfully or with an utter lack of compassion.  It makes this disease 100 times more difficult to live with when those around you, those closest to you, those who you need to trust the most, don't seem to even want to understand or make an effort.

Today, for instance, I woke up in SO much pain. I cannot move still at this moment or it's excruciating. I was in tears all morning. I'd had almost no sleep due to the pain all night. I thought I might have to go to the hospital. My husband, sweet as he is, looked at me and with so much love and concern in his eyes said "I wish there were something I could do for you". What he didn't realize is he just did.

I hate days like this, when I can't really give him attention because my body seems to hate me. I always feel guilty and worthless. And this amazing, understanding man knew just what to say, even if he wasn't aware of it.

He convinced me to try to get a bit of rest, even though laying down seemed to cause even more pain. He came into the room with me and laid down with me just to rub my arm in comfort. Then he took his hands and placed them on my neck and shoulder, which were causing me the most trouble, and tried to will the pain away from me. It worked. The comfort and care he provided allowed me enough relief that I managed to fall asleep. I still didn't sleep well but it was rest nonetheless.

I am one of the lucky ones. One of those who has an amazing support system. My husband understands. My mother understands, I often call her when I'm really sick just to hear her voice. My best friend understands. My youngest son understands and helps me around the house as much as he can. They know I have my good days and when I do we can enjoy them. They also know I have my bad days, which sometimes last longer than a day, and when I do they do their best to help me through them and remind me that they love me no matter what. I don't think I'd get through the pain I'm currently experiencing without them.