"What Do You Mean by Sickle Cell Pain Crisis?"

Happy New Year to all my readers! I hope 2014 is good to you.

I’ve noticed from conversations with various doctors that the term “pain crisis” means different things to different people. For me, a pain crisis means any kind of Sickle Cell related pain. Sometimes a pain crisis is very faint and mild, other times it’s crippling agony. But some of my doctors think of a pain crisis as something that has caused hospitalization.

In my adulthood, hospitalizations have become more rare than when I was a child and teenager. In the past twenty years, I’ve been admitted less than a dozen times. The first twenty years of my life I was admitted to the hospital over one hundred. June of this year will be three years since my last hospitalization. Pain crises, however, those are very frequent.

People ask what a pain crisis feels like. It’s hard to describe. But the best way I can, is by telling people, “You know when you’ve exercised or used muscles that you haven’t used in a long time, then the next day it hurts to move? The mild to moderate pain crises kind of feel like that. The really bad ones, however, it’s like having a million needles in your back, arms, legs, knees, joints, and all over your skin. It's like they are under your skin; and every time you breath and every time your heart beats, those needles push against your skin and retract.”

Often I compare pain crises to the weather. Sometimes it’s cloudy outside and there’s a light mist of rain. It’s quiet and in the background, but you are aware that it’s present. Then there is the monsoon level of pain crises where the wind is blowing you off your feet; the rain is pouring down so hard you that can’t see a thing; thunder is roaring over head and shaking your house; and lightening is filling the sky. I’ve had the faint dull achy (aka: light mist) kind of pain crisis last as long as a year. I’ve had the monsoon type last many days. You never know.

My point in addressing this has to do with communication. When I see a doctor and they ask when my last pain crisis was, I always ask them “Tell me what you mean by pain crisis.” Usually they mean hospitalization, not Sickle Cell related pain. Proper communication with your doctor’s is of huge importance.