Fibromyalgia and Me: Here I Am, in the Middle of the Night

Here I am. It is the middle of the night. I sit here, in the dark corner of the bedroom with just the light of the computer screen to illuminate the keyboard. But, I don't need lights. I have learned to write without having to see the keyboard. I've had plenty of practice. In fact, I've had more than 16 years of practice. I've been practicing with my old friend, Mr. Fibromyalgia.

Here we sit, Fibromyalgia Syndrome and I, or FMS for short. The wife is in the bed not to far from where my weary body is trying to hack out words to express what I feel. You would think that after more than 16 years of living with this dreadful and persistent disease, I would be used to this. You would think that the pain, the never-ending fatigue, and the sleep disturbance would all be old familiar friends by now.

They are NOT friends.

They ARE enemies.

Long ago, when I had to surrender my ability to work to this enemy, I thought it was then that I had accepted my illness. In a sense I did. I was able, by the grace of God, and some very good lawyers, to convince the disability board that having an illness, one for which there is no cure, one that forces you to have to sleep nonstop (sometimes) would not be compatible with working a 9-5 job. The board agreed. It was then that I began executing the official duties of a full-time disabled person.

Oh, boy!

But, even though I have been disabled and have had to learn to cope with all that is suppose to mean, I am so fed up with not being able to sleep. I haven't slept through the night in so long, I can't remember when I did. I think sleeping is the key to all of this. I could be wrong.

The way I understand it, sleep is supposed to be the answer to replenishing your body's ability to deal with muscle repair among other things. When you stress your body with exercise or even the normal activities of the day, small micro-tears creep up in the muscle. Sleep fixes this.

Last night, after a movie and dinner, I almost fell to the ground trying to get down some stairs in one of Guanajuato, Mexico's tunnels. I stumbled. I wasn't hurt. A normal person would have gotten a good laugh at his lack of coordination and forgotten about it.

My body wouldn't let me forget. No, sir.

Exercise, carrying something heavier than you're used to, a fall in a ill-lit tunnel, can cause tiny, sometimes unnoticeable tears in your muscle. Usually, when you sleep, you body releases amounts of hormones that repair those micro-tears. In the body of someone with FMS, this does not happen.

Sleep disturbance is one of the features of this disease. We have what some experts call the "Alpha-Delta Sleep Interruption". This is where someone with FMS falls asleep, and we go from the Alpha stage, or stage one, to the Delta stage, or stage four, something jerks us out of the much needed stage four sleep and back into one of the other sleep stages.

If you've ever had surgery where they slip you something that just barely knocks you out and you can hear and sense some things going on in the operating room, this is what it feels like to be caught in this hideous state where you can't quite fall asleep. I cannot begin to convey to you the utter frustration I go through when I can't sleep.

Sometimes I wake from this trance and sometimes I don't. I just lay there knowing I can't sleep but in a sleep limbo.

People with FMS usually can fall asleep easily enough. That is how I am. I can fall asleep but when in an FMS flare-up, caused by a near fall to the ground, I usually wake up 3-4 hours later. I am wide-awake and have to get up. To lay there would cause my never-ending pain to get worse.

If this sounds like a confusing nightmare, you have no idea. When I fell last night, I knew that the fall I took would come back like a delayed fuse. And it did. It hit me a few hours later and roused me out of sleep. I had to get up and hunt for the pain pills.

This is the cycle: The pain prevents sleep. The sleeplessness produces more pain. This creates fatigue. The Alpha-Delta Sleep Interruption doesn't allow your body to repair, this produces more pain, and you are in a constant stage of fatigue, pain, and depression from it all. Sometimes you can hit a remission plateau of sorts, where you are feeling pretty good and then something happens. You "over do it", like a near fall-on-your-face mishap, and it starts the cycle all over again.

It never ends.