Looking For Answers To My Chronic Pain From Cystic Fibrosis
Looking For Answers To Chronic Pain: Part 1
There’s a reason why when our bodies are experiencing pain we try to make it go away--ice, Tylenol, warm baths, hugs, and kisses, etc. Pain is supposed to be a temporary state signaling that something is wrong. It calls us into action to change the course so we don’t experience it again. However, what happens when the pain doesn’t go away and you are forced to exist in the fog? What happens when it cannot be explained by the chronic illness, cystic fibrosis, that’s to blame for a lot of your aches and pains?
Experiencing chronic pain with cystic fibrosis
Many people with CF live with pain in their day to day lives. The sources of pain can vary but often includes abdomen pain, lung or chest pain, sinus pain and headaches, and joint pain. I have been lucky enough to have experienced pain in every category at one point or another. However, the most significant source of pain that’s made its home in my body for the better part of a decade is mysterious joint pain.
And it's not clear-cut cystic fibrosis related arthritis. So what do you do?
I believe the first step you take is to do whatever helps provide temporary relief. Secondly, you search for answers. It’s natural to want to know where the hurt is coming from, no matter how long it takes. That’s how my experience with chronic pain has folded out, anyway. It’s been a decade long dance of searching for answers and learning to cope with chronic pain while living with cystic fibrosis.
The evolution of my pain
Shortly after puberty, I remember having joint pain that hurt enough to complain about it. First, it started off as what we affectionately coined “rebound pain”. When I didn’t take the large dose of ibuprofen prescribed to help slow inflammation in my lungs, I inevitably had pain throughout the day. It was almost as if my body was dependent on the ibuprofen and pain was from withdrawal.
The cycle of stopping ibuprofen, rebound pain, and re-starting ibuprofen went on for many, many years until my pregnancy with my son. In pregnancy, I had zero pain unexpectedly. It was an absolutely glorious time to be pain-free as I grew our little baby. However the three years following the birth of my son, my pain got exponentially worse to the point I couldn’t handle it anymore. I thought my pain was the ugly side of CF as I grew sicker with more exacerbations. However, my quality of life was slipping through my achy fingers.
It was puzzling and frustrating to not know what caused the pain that had such an effect on my quality of life. I felt my pain had control over my life--scheduling activities around it became my new normal. Making sure I had a constant supply of pain medication at hand was a necessity.
No one wants to be a medical mystery. All patients want from their doctors is to be validated, treated with dignity, and offered the proper treatments and a tangible diagnosis. It seems so simple--but why is it so hard sometimes? Beyond their scope of practice, I knew my cystic fibrosis care team was doing everything they could to help my chronic pain be more manageable. With their help, appointments were booked for second opinions. After years, I began the road to answers. Looking back, I had no clue what was to come.
Do you live with chronic pain and cystic fibrosis? Share how it affects your daily life below!