Experiencing Chronic Pain Due To Cystic Fibrosis

While waiting to begin Trikafta, my heart has felt a little heavy, mainly for reasons that I can’t explain. I think part of it is that I don’t want to lose sight of the life I’ve lived up until this point. While I have experienced many trials and much pain from cystic fibrosis, it has revealed a strength and perseverance in myself that I may have never known otherwise.

While I’m beyond excited to begin the medication that may alter the trajectory of my life, I don’t want to forget what life was like before. Please be advised that the following descriptions may be graphic. I write these truths explicitly so that I may recall every detail of how I feel today, the days before my health may change for the better.

Where is my cystic fibrosis pain?

Back and rib pain

This morning I woke up with a sharp pain in my back. My ribs are displaced from coughing again. This is a weekly, if not a daily occurrence. I’d like to go to the chiropractor, but I have been advised to limit my adjustments due to hemoptysis. So, I have to live with the pain until my body adjusts to the new placement of the slipped ribs.

Lung pain

Today my lungs burn. It feels similar to when you take in a breath of cold air while chewing on a mint. Except, it doesn’t feel like the sensation is in my mouth. It feels like it’s in my lungs, sitting just behind my sternum. I’m not entirely sure why it feels this way, it may have something to do with the new bug that showed up in my last culture.

Consistent vomiting

At the moment, I can hardly cough up anything even when I need to provide a sputum sample. If it’s not a painful burning and shortness of breath, then it’s coughing up so much mucus and sometimes blood to the point of vomiting. This is more normal for me. Just last night I awoke from my sleep with a coughing fit that caused me to vomit over the side of my bed, into my hands, and onto my floor. My husband helped me to the bathroom so that I could clean up. He took care of the mess so that I could slip back into my miraculously still clean sheets to rest.

This is a normal part of my life. So normal, in fact, that my almost two-year-old daughter pretends to cough and then runs to the toilet or trash can to pretend that she’s puking into it. It’s sad to see her play this way. Although, I remind myself that she simply wants to be like mama, and this is what mama does.

Stomach pain

I have very few daily digestive issues. It’s not often that I experience stomach discomfort or other CF-related GI symptoms. What I will say is that when I had my daughter, I didn’t know that I was in active labor until I reached transition. This is because active labor didn’t feel unlike cystic fibrosis stomach pain.

All the nurses assured me that I would know when I hit active labor, because I wouldn’t be able to talk through the contractions. That was simply not my experience. I was able to speak, walk, and talk normally until just moments before they realized that I had reached 10cm. I was used to the pain. I’ve known that kind of pain my entire life.

Struggling with cystic fibrosis pain throughout my life

Since childhood, I’ve experienced body aches and pain that have ruled days, weeks, and months of the year. I’ve started investing in massages twice a month as a pain management alternative to eating ibuprofen liquid gels as if they were a snack. I’ve seen a decrease in the frequency of the fever, chills, and overall cystic fibrosis pain for several weeks at a time.

But even now, if I feel a headache coming on, I immediately feel nervous that the pain is making a full return and will consume me the way it has in the past. This pain made me shake and shiver uncontrollably in my bed, caused me to clench my jaw and grind my teeth in my sleep, and kept me restless and fidgeting through college classes and social events with friends.

I moved in an effort to escape the pain, to no avail. This pain caused the need to plunge myself as quickly as I could into a scolding hot bath, just to have trouble lowering myself in and out of the tub due to weakness. This pain made me wince from the feeling of my own clothes on my skin. This pain caused me to sleep away my days in my adolescence, using sleep as a form of relief. This pain is one of the worst ways that my daily life has been affected by cystic fibrosis. I hope like everything that this new treatment will eradicate it for good.

Feeling hopeful with Trikafta

For the past 2 and a half years, I’ve needed antibiotics almost every other month. I had over a dozen rounds of IV antibiotics, 4 PICC lines, 1 port, and over 100 sick days in two years. Though in medical terms I have remained “stable,” that seems further and further from the truth when I’m administering IVs in public. I fall somewhere in between needing to be in the hospital and expected to maintain normal life.

I’m not expecting Trikafta to cure me, or to even treat all of these symptoms. I think I’m holding a realistic view of how it will help me. Either way, remembering where I am today will help me be increasingly thankful for where I’ll be tomorrow. I want to remember what all of these things felt like. That way, when I stop feeling the desperation that comes with CF, I can look back and remember how much I’ve made it through. A reminder to myself that despite this progressive illness, tomorrow may be better than today.

How are you feeling today? Share your CF story with the community.