When people first meet me, besides the usual questions of "Why are you shaking your head?" and "How did the tremor start?" I usually get "Is it painful?" The answer is an unwavering yes. Having my head shake back and forth all the time, and other muscles trying to compensate for the constant movement, is quite painful. In the beginning, there were days when the pain surpassed the "0-10 scale," and it was difficult to get through the day without lying down at least a few hours at a time.
The first few months were excruciating, and I had no coping skills to deal with such intense pain. Every doctor I saw was quick to pull out their scrip pad when I told them my pain was at a 10, or 11, or 12. "Percocet? Vicodin? Oxycontin?" Despite all the medication I was taking, they seemed more than happy to add a narcotic to the mix.
The first time around, I took the Percocet prescription. Anything to lessen the pain. I quickly realized that this was not a path I was willing to go down. Taking the narcotics made me loopy, and nearly impossible to function. It didn't seem worth it to be doped up AND be shaking all the time. So I made the decision, and asked that it be written in my file that I did NOT want pain medication to be prescribed.
Taking narcotics out of the equation, meant I would have to find another way to lower my pain. I was clear that I wanted to be able to function, to be clear headed, and to find a way to control the otherwise uncontrollable pain. So I found doctors and therapists that understood my decision. I started with hypnotherapy, once a week, for quite awhile. We worked on imagery and breathing techniques to lower my pain. I incorporated DBT skills into the mix. I found distractions and self soothing techniques, that were simple and accessible, wherever I was. Then I started trigger point injections. I know, I know. It sounds painful. But when your pain level hovers anywhere above a 7 or 8, on a good day, a tiny little needle in a muscle spasm is NOTHING. I've continued getting trigger points weekly for almost a year.
When I had my wisdom teeth out this past July, I made an exception to the rule. I filled a prescription for vicodin to get me through the first few days after surgery, because let's face it, having your wisdom teeth out hurts enough, but being swollen and shaking on top of it, really sucks. After a few days of being completely out of it and loopy, I was happy to go back to an over the counter pain reliever every four hours. At least I was able to do something other than sleep and stare blankly at the television!
I'm happy to say that, these days, my pain is no longer uncontrollable. Yes, it hurts. Yes, my pain level is relatively high. But in the grand scheme of things, I'd rather have a pain in the neck and be productive, than have no pain and be incapable of living my life.