Sickle Cell Warriors


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Pain Scale

Living with sickle cell means living with chronic and acute pain. I have pain every single day of my life…sometimes it’s worse than others, and sometimes it’s just minor twinges that I can will away. I actually have a very high pain thresh-hold, I go for as long as possible without taking pain meds because I’m trying to watch out for my liver & kidneys.

I just got home moments ago. All I did was drive around running errands, popped to the store to get groceries and carried them upstairs. I sat down…and I could feel pain splintering my back into a zillion pieces. It’s nothing major, just an L1. Here’s how I grade my pain…

Level One: This is probably what people with random headaches get. Level one is a 1-2 on the pain scale, and it’s just twinges at at my joints, my back or my legs. Twinges usually go away after a few minutes of massage or sitting down. They are the frequent flyers though…I get level one pains several times a day…guaranteed.

Level Two: I would place level 2’s on a 3-4 on the pain scale. They don’t go away, it’s a constant nagging pain, almost like cramps except its in the joints. Whenever I move the affected limb, it hurts like crazy, but immobilization keeps it on the down low. Motrin and heat helps out on a level 2, and they last for a few hours to a couple of days. I can function with a level two, I can still go to work (although I might be limping) and I can still go to school.

Level Three: Level 3’s are real powerful motherfuckers. Sometimes L2’s grow into L3’s. On a regular pain scale, a L3 would be 5-6’s, what is termed medically as moderate pain. It can extend over any bony prominence to the longer limbs of my arms and legs. Walking hurts like crazy and only thing that helps is Vicodin. Usually with an L3, I’m unable to go to work, just stay home, rest and hydrate and hope that it dissipates.

Level Four: Get me some Dilaudid quick! I’m totally useless in an L4, just rolling up and down on the bed hoping that the Dilaudid kicks in before I expire from the pain. It feels like 1000 men drilling into my bones and can be anywhere in my body, like my back, my limbs and my chest. Tears are rolling down my face and I’m forcing myself to take deep breaths. On the pain scale, this can be anywhere from an 7-9. L4’s uncontrolled by Dilaudid send me to the hospital, because that means that I can’t beat it on my own and need some hardcore meds.

Level Five: The worst of them all. This is like the dinosaur of all pain, I don’t even want to live anymore, I just want to give up right then and there. I feel like I’m fighting a losing battle, like the pain is just washing over me in one crazy uncontrolled tsunami. I’m usually delirious and out of my head, just in a coma-like zone trying to separate my mind from my body. I’ve never had an L5 at home…it’s always at the hospital, because the nurses are rationing out the pain meds and so an L4 grows to an L5. This is off the charts on the pain scale, there should be a new scale for an L5.

Thank goodness there is nothing after an L5. I wouldn’t wish an L5 on my worst enemy. So…how do you grade your pain?


About Author

Sickle Cell Warrior

Sickle Cell Warrior

Tosin is dedicated to perpetuating healthy and positive messages about sickle cell. Although sickle cell is a subject often taboo in the communities this condition is most prevalent, Tosin's message is that sickle cell is not something to be ashamed of and you can live a rich and fulfilling life with sickle cell. Sickle cell warriors are the most amazing people in the world, with a great fortitude for compassion, willpower and strength.

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  1. Jasmine
    Jasmine April 01, 13:31

    I Am A Sickle Cell Patient As Well , and I really needed this info . Thanks

  2. Slymm
    Slymm June 07, 14:49

    I would like to know more about sickle cell can we get help besides narcotics that will damage my liver and kidney in the future? Thanks in advance…

  3. Sickle Cell Warrior
    Sickle Cell Warrior Author June 10, 15:22

    @slymmgoody, where are you based? There are several resources here that can help. Diet, alternative remedies, lifestyle.

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