When a sickle cell pain crisis interrupts a stretch of good health, part 1

First in a series.

If you’ve read my recent columns, you’ll know I’ve been in a really good place with my health as someone with sickle cell disease. I credit a lot of that to the work I’ve been putting in at the gym to strengthen my body. Even small things, like walking to the gym, felt different. I could bounce along, enjoy myself, and not feel tired. It seemed like my health had significantly improved.

Unfortunately, I recently suffered a sickle cell pain crisis. Before it happened, I said something out loud that I never usually say: “I think I need a massage.” At the time, it didn’t seem important, but looking back, it feels like my body was trying to tell me something.

On that day, I arrived at the gym and started my usual routine. I’ve been doing my warmup for weeks now, so I almost feel like a pro at it. My heart rate increased, I worked up a good sweat, and everything was routine — until it wasn’t.

Recommended Reading

March 13, 2023 Columns by Sylvia Amuta

Sickle cell demands that we carefully prepare before traveling

Entering crisis mode

As soon as I finished, I recognized that familiar feeling that tells me a crisis might be coming. I’ve felt it before at the gym, and usually I can breathe through it. If I give myself time to recover and drink water, it settles. So that’s what I did. I didn’t pay the feeling too much attention at first — I just focused on my breathing and tried to let it pass, but this time, it didn’t. A minute went by, then two, and the feeling was still there, which was frustrating.

I decided to move on to my next exercise, hoping the feeling would fade, but instead, it kept building. What stood out to me was how it was moving through my body. My warmup had mainly worked my upper body, but suddenly, my legs felt fatigued and painful, even though I hadn’t really worked them yet. It didn’t make sense, and I couldn’t shake the sinking feeling that something was really wrong.

I pushed through one more exercise, hoping my body would adjust, but the sensation remained. It felt like that pre-crisis state, where tiny, sickle-shaped blood cells are circulating through my bloodstream, trying to find somewhere to settle. I could feel the shift happening in real time.

When it came time to work my legs, I felt it properly — my knees started to ache, signaling that familiar progression into a crisis. That’s when I called it. I told my personal trainer I couldn’t continue and ended the session. Mentally, that was difficult because I had walked in feeling so good, but I knew pushing through would probably make things worse.

I had too many events coming up to risk aggravating my condition, so my focus shifted to understanding what was happening and stopping the pain from escalating. By the time I left the gym, breathing was harder, movement felt heavier, and I knew I needed to get home. That’s when it hit me that I had walked to the gym.

Normally, that’s something I’m proud of, but in that moment, I regretted it. If I had driven, I could have taken medication immediately, as I keep some in the car. Walking back wasn’t an option, so I called an Uber. It was a short journey, but it felt long.

Every bump in the road seemed to shoot straight through my body. I felt cold, tired, sensitive, and hyperaware of everything — yet I found myself trying to maintain a normal appearance for the driver. That’s something I’ve noticed about myself when a crisis is developing. I become very aware of how I’m perceived, even when I’m struggling.

When I got home, that’s when everything really set in. I finally had the space to let out my frustration about the oncoming crisis. That reality is always difficult to accept, but it’s especially challenging after a period of doing so well. My next objective was to stop it from getting worse. I was in crisis mode.

In part two of the series, I’ll detail the fallout from my sickle cell pain crisis.

Note: Sickle Cell Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sickle Cell Disease News or its parent company, Bionews, and are intended to spark discussion about issues about sickle cell disease.