Managing a Sickle Cell Pain Crisis

For the past fifteen days I have been in a sickle cell pain crisis. People who aren’t familiar with the illness ask, “What does a pain crisis feel like?” I usually reply by saying, “There are many degrees of severity of pain crises. To help convey this in terms people can understand, I compare a crisis to the weather. Sometimes it’s partly cloudy with a light mist of rain barely noticeable on your skin. Other times it’s a monsoon; there’s roaring thunder, steady lightening, 100mph winds, and a down pour of rain so heavy you can’t see in front of you. And there is everything in between.

“Light mist” pain crises feel like faint pain all over my body that causes me to feel achy, sluggish, and tired; kind of how you feel when the flu is coming on. When it’s a “monsoon” pain crisis, it feels like a million tiny needles are trying push their way through every inch of my body; and with every heart beat, those needles go in, and out, in and out; and with every breath, they go in and out, in and out. It hurts to move or even be touched in the slightest of ways.

So what helps? When I’m having a monsoon, or near that level of pain, I do the following things. 

1) Hydration. I increase my water intake. Hydration is really important in Sickle Cell Disease. So I set a timer every 30 minutes and drink half a glass of water (about 6oz). That way, by day’s end, I will have drunk well over a gallon of water.

2) Oxygen. When I sleep, my blood oxygen level drops to 70%. As a result, I use oxygen at night when I sleep. It’s an “oxygen concentrator;” a machine that converts the air in the room to the quality of pure oxygen. When I’m having a monsoon crisis, I use that oxygen 24/7, and it helps. Sickle cells block the flow of blood and oxygen, so having this additional oxygen is beneficial.

3) Be still. I stay home and do as little as possible. When it’s a monsoon pain crisis, it’s impossible to do anything anyway. When the crisis is less intense, I still know when I need to stay home and be quiet. Physical activity will only make the pain worse and risk hospitalization.

4) Pain medication. I might have to increase the amount of pain medication I normally take. Obviously I am careful not to overdose, but I know what I can take and when. Sometimes, when it’s monsoon season, home prescription pain medicine does very little to relieve the pain and the only thing I can do is wait out the storm.

5) Stay warm. Sickle Cell patients are highly temperature sensitive. Extreme temperatures—be it hot or cold—can trigger a pain crisis or make a current crisis worse. When in crisis, I wear warm clothing and often have an electric blanket on me. Staying warm during a crisis is very important. 

6) Meditation. I use various meditation techniques to slow my breathing and regulate my heart-rate. Getting excited, emotional, or panicking during a severe crisis will only make the pain worse. Staying as calm as possible is HUGELY important.

7) Know when it’s time to go to the hospital. From experience, I’ve learned when my body is telling me that it’s time to go to the hospital. In all honesty, I can’t remember the last time I had to go to the hospital because my pain was so out of control that I couldn’t manage it home. Nearly all of my hospitalizations over the past 20 years have been due to low hemoglobin levels or other types of illnesses. Most of the time, I just deal with the monsoon in the comfort of my own home and bed.

How Long Does a Pain Crisis Last? The short answer is, anywhere between less than a day to months. Monsoon level pain crises usually last one or a few days. “Light mist” crises...they can last days, weeks, or even in my most extreme case, a whole year.

My present crisis for example: on Saturday I felt fine. Sunday morning I woke up having a mild-moderate crisis, which progressed to a monsoon within a period of four hours. Monday and Tuesday it was a “light mist.” Wednesday it was one step below a monsoon. Thursday thru Friday it was a light mist again. Saturday was a step or two below monsoon. Sunday and Monday, back to a light mist.

I have said it before; the only thing predictable about Sickle Cell Disease is its unpredictability. We can be fine one minute, and in agony the next. The most important thing I can say to a friend or family member of a Sickle Cell patient is, be patient and be understanding. Those two things go along way at helping your loved one’s stress level.