Breakthrough Pain: More Than Just a Pain in the Neck
Have you ever had an extraordinary pain that doesn't respond to medication, one that has a team of doctors scratching their heads as they start the pharmacologic dart game? I have. It's a thrilling MS tale of pain, drugs, more pain and more drugs, and even more pain and even more drugs rounding it off with some relief, some breakthrough pain and ultimately some breakthrough revelations.
Let's go back to the year 2005. I was in the last year of a master's degree program at New York University. With a family, a commute and MS, I had to keep pinching myself to prove that I was really pulling it off. Unfortunately, my self-inflicted reminder was replaced with one that forced me to be acutely aware of every moment of every day.
As the story begins I'm on a train pulling into Penn Station. Reading a book, keeping to myself, when all of a sudden every muscle in my foot cramps up and the pain... come to think of it, it started very gradually - a cramping that would come and go. What happened on the train was unmistakable. I could no longer tell myself that I had sprained it, or walked too far on it. It was a sudden and very painful event. I tried in vain to massage it away. No luck. It quickly became clear that this pain had a mind of its own; it was attacking my feet without provocation and getting worse.
At my neurologist's office, I sat on the examination table and tried to describe it. "It's like the pain of labor- in my feet." And though my neurologist is a man, I felt certain that he would understand in concept, "You've heard it hurts, right?"
So I had labor "like" pains in my feet. Having experienced a more traditional labor, this relocation to my feet, with no pride-and-joy on the way, was not amusing.
This tightening quickly morphed into an intense pain that came in contraction-like waves. So, I might be sitting in class, listening and taking notes when suddenly my feet felt trapped in a quickly closing vice. And quite frankly, even that metaphor doesn't capture its intensity. This pain was off the charts, making it impossible to focus on anything else; my family, full time job and my degree in the making all suffered from the lack of attention.
And so began the six-month journey of untreatable pain, unbearable side effects and the frustration of not finding anything that would work for me.
The nurse clinician who worked with my neurologist walked me through the recipe. "Lets start with this one, add a dash of this one and perhaps a spot of this one. And oh, I've heard this one is fantastic!" Of course I'm joking, but I assure you it wasn't as far off as I would have preferred. She explained to me that everyone responds differently to medication (which of course, is the case of every aspect of living with MS!) and eventually they find a cocktail that works. Well, we tried every possible variation that one could achieve with 6 different medications. And while that seems overwhelming on paper- in real life it looked a lot worse.
Each medication had it's own little package of side effects, one more demoralizing than the last, including but not limited to: skin rashes, slow speech, yellowing of skin, uncontrollable shaking and my favorite - "changes" in weight which very often resulted in a sudden loss of wardrobe. My Rx list got longer; my pharmacy bill got larger my emotional fortitude thinner. And nothing was helping the pain. Just when I would reach the end of my rope, another drug suggestion would be made and I remained hopeful that this would be the one that worked. It didn't but I was done.
I made an appointment with a doctor who specializes in neurological pain and searched my stores for any residual optimism. (I always have something left in there!) And on the day of my appointment my pain ceased. (I thought, Damn... this guy is good!) But MS is funny like that. It can change on a dime. Knowing that this was more likely to be a brief reprieve we started a game plan.
He helped wean me off the mélange of meds that were crowding my cabinets and cells. And picked the one that he thought would most likely do the trick. So when the pain returned as we predicted, we finagled until we found just the right dose. We did. And while on most days I'm pain free, there are others where the pain breaks through the line of attack. And when I feel it, I'm reminded of that year... when this periodic pain was my everyday. And with my doctor's approval, I take an extra dose and smile- knowing what I've lived through and that now I'm in control of the drug that controls my pain.