Sickle Cell & Chronic Pain: The Road to Recovery
Last updated: April 2023
My little princess has been diagnosed with chronic back pain since the summer of 2021. Every time I think about it or write about it, a piece of my heart breaks. I have written about this many times and spoken about it many times. But if there's one thing that's not easy, it's to watch despondently when your child is in pain.
The trouble with painkillers
Painkillers are unfortunately not always the answer, and something we often don't take into account is the side effect of the medications. Painkillers would be great if they didn't have side effects. But the reality is unfortunately different. For several months I watched with a bleeding heart as painkillers constantly made my little princess miserable. And besides, it only helped for a few hours. The pain management schedule looked like this: Tylenol, Ibuprofen, Morphine, Tylenol, Ibuprofen, Morphine... for days, weeks, months.
Enough is enough
Until I indicated in a conversation with the medical team that I wanted to try something different. I explained in detail what I want to do, why I want to do it this way, and how long I will do it this way, and what if my plan doesn't work. But I believed it would work!
The team knows that I always put my princess's health first and that I make well-considered decisions when it comes to these kinds of things. I have indicated to them that I want to stop all painkillers and go to a physiotherapist with my child. If necessary, we can add acupuncture so that the pain can be permanently resolved.
I firmly believed that giving painkillers for chronic pain is pointless. You reduce the pain for a few hours, but it doesn't solve the real issue. I started looking for a treatment method for the cause of the pain. Although I understand that the cause is sickle cell disease, I wanted to try something different.
Watch and learn
Because of his hernia, my father very faithfully visited the physiotherapist and acupuncturist for quite a bit of time. My mother joined him for his treatments and he has learned to change his lifestyle. Think of healthy walking, healthy bending, healthy sleeping, in short, a healthy lifestyle.
Thanks to the fact that I saw how well it helped him, I decided to try the same for my little princess. Full of good hope we made an appointment with the physiotherapist and she was allowed to start the treatment very quickly. Pictures were taken, MRI's, X-Rays and she had to do a number of tests so that the physiotherapist could see exactly what was going on.
Fortunately, my princess thought it was an exciting yet beautiful experience. She immediately clicked with the physiotherapist and now we are already 4 months further. The pains have decreased enormously, she learns something new every time. It's so nice to see that there are also other methods to get rid of the pain.
My princess is learning to walk healthy, move healthy, sit healthy, live a healthy life. Every Wednesday she goes to the physiotherapist with the same positive attitude and after an hour of exercise, I get a report from the doctor and I'm very proud of my little princess again. The best part is when we drive back in the car and she enthusiastically tells me what she has done.
When we arrive home she tries to teach me a few things and unfortunately I have to conclude that I too can adopt a healthier lifestyle. It is always a great laugh when my daughter sees her mother fall over from the exercises.
Setting her up for success
This journey is also one to be proud of and I am especially grateful to the team that supports my princess in the best way. I am very impressed with the dedication of both my princess and the medical team.
As parents it is important that we also listen to ourselves and when we see that medication is not helping or that the medications are making things worse because of the side effects, it is our responsibility to look for more sustainable solutions.
When my daughter is a grown woman, I want her to realize that there are multiple ways to feel better. Actively look for it, and above all stay dedicated to the plan. Every Wednesday afternoon we are at the physio's office because our end goal is to live comfortably with sickle cell disease.
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