Can We Talk About CF Pain?

We need to talk about pain. Growing up, there was a clear delineation in my mind: Cystic fibrosis (CF) could be painful sometimes, but it wasn’t a disease that caused constant pain.

It was almost a mantra in my mind: “At least I’m not always in pain.” Or, “It could be worse; I could be in pain.” Unfortunately, as I have learned, that’s really not a given. 

Estimates point to between 5 and 10 percent of CF patients having either joint pain or arthritis. Based purely on anecdotal evidence, I believe these numbers may actually be much higher. At least half the patients I speak with regularly experience joint pain.

It may just be confirmation bias, but it may also be that we CF patients feel as though we’re not supposed to be in pain, so we simply don’t discuss it. No one wants to feel like the whiner or the odd one; we pursue being healthy, and in doing so, we sometimes push symptoms aside. 

I’ve had knee pain since I was a child. For the first 20 or so years of my life, it was called growing pains. When the pain continued, I didn’t talk about it. By the time I was in my mid-20s and was finally willing to talk to my doctors, I got an answer, but not a satisfying one.

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I felt as though I had done something wrong. If so few CF patients experienced joint pain, why was I so unlucky? Lately, my mind has changed, and I encourage my fellow patients to no longer be silent. We need to talk about pain. We need to admit that CF can be a painful disease, or else we’re just encouraging people to keep silent. 

Perhaps equally frustrating is the fact that there’s no real treatment protocol for CF-related arthritis. I’ve been butting heads with my clinic over this for some time. I love my doctors and truly think I have one of the best care teams available, but I find the lack of answers frustrating. A few months ago, when I had to ask my mom to help me brush my hair because I was in too much pain to do it myself, I realized I could no longer live like this.

I don’t want to take more medications, and I certainly don’t want to take pain medication, but I also don’t want to wake up knowing that I can experience pain so severe it makes me unable to leave the house. Some days, I use a cane, though the stigma of being young and having a mobility aid is a heavy one. 

Over-the-counter anti-inflammatories help, but only in the moment, and they only take the edge off. I’ve reached a point where my hip, in particular, is painful every single day. I still hesitate to speak about it, afraid of how other patients will perceive me, but pain shouldn’t be something we refuse to talk about. In order to receive better treatments and better therapies, we have to push and we have to advocate, and if that includes revealing the messiest, worst parts of CF, so be it. 

We need to start a discussion, and I propose we start here.

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