Imagining sickle cell pain: Bring on the tarantulas and grinding metal

It’s no secret, especially for those who read this website, that one of the main symptoms of sickle cell disease is a vaso-occlusive crisis. When I say I’m experiencing one of those, what thoughts come to mind?

I encounter varied types of crisis pain at varying severities. Based on my interactions with other sickle cell patients, I’m not alone in that. I’m regularly asked to grade my pain on a scale of 1 to 10, but rarely am I asked, at least in a medical setting, to describe my pain.

I can understand why.

Medical professionals are likely to ask for such a pain description only during an investigatory assessment, as they seek to learn the patient’s health issues. If I present with pain and can confidently attribute it to a sickle cell crisis, a description probably offers little value to the person examining me.

A brief caveat, however: If the pain I’m experiencing is placed somewhere that’s not typical, I’d definitely flag it for medical professionals. I’ve shared in a column, for example, that I once experienced an unusual chest pain, but I didn’t think much about it because it wasn’t as painful as my usual sickle cell crises. Fortunately, a friend ignored my assessment and called an ambulance. Once under care, I learned that I had a pulmonary embolism. Had I ignored the chest pain and gone home, I probably wouldn’t have woken up the next morning.

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Outside of medical settings, however, I’m frequently asked to describe my pain. Many people, it seems, want to understand more about the plight of sickle cell patients. Describing pain is difficult, but if it helps them appreciate my disease, I’ll give it a try.

I typically encounter two different types of pain: acute and chronic. I’ll describe how I experience them as best I can.

Chronic pain

Chronic pain is persistent and lasts longer than three to six months. People usually associate it with accidents or injuries, but there can be other causes. I tend to experience this pain in my hips, pelvic bone, shoulders, and calves. I don’t have it in all these locations all the time, or even at the same time, and sometimes I don’t have it at all. Each day is different.

To illustrate it, imagine an interlocked nut and bolt. In your hand, you have a wrench (or spanner, here in England). It’s often used to tighten nuts and bolts, but on this occasion, you’re trying to loosen the nut or bolt.

In this scenario, the joints are the tightened nuts and bolts. On a good day, everything fits tightly and works as it should. On the bad days, however, you’re trying to force the wrench to loosen those “nuts and bolts.” You’ve tried running them under a faucet, you’ve poured on copious amounts of WD-40, you’ve tried everything at your disposal, but they remain rigid.

The grinding of those metal pieces against each other is exactly what I see when I try to envision my chronic pain. It’s a tingling but dull sensation that radiates through the bone.

Acute pain

Acute pain, on the other hand, is sudden and sharp, but temporary. It’s usually the body’s signal that something’s wrong. A sickle cell crisis is caused by faulty red blood cells, so its effect can be felt anywhere blood flows; ergo, this acute pain can occur in any body part.

Once again, use your imagination — this time seeing a tarantula with daggers attached to the bottoms and sides of each of its legs. Next, multiply that single tarantula until you have hundreds. Then choose a body part, any body part, and imagine that all the tarantulas have been telekinetically sent into that part’s bone, in its epicenter. The tarantulas are running up and down the bone all at the same time, and with every move they make, those daggers are stabbing from inside your bone right out past the surface of your skin.

That’s the pain of a sickle cell crisis. It’s worse when the pain is in a sensitive body part, such as the palms of the hand, the bottoms of the feet, or genitalia.

Now, when you talk of pain severity, imagine that with every number on the 1-10 scale, the number of those daggers increases, and they become increasingly sharper.

Even with these images to help you envisage sickle cell pain, the reality is far worse. So if you have sickle cell, be gentle with yourself. And if you don’t, exercise empathy when you encounter one of us in pain.

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 pertaining to sickle cell disease.