Did My Lung Disease Cause My RA?

For quite awhile, I felt that my chronic pain was just another symptom of the bigger disease in my life, cystic fibrosis (CF). I was born with CF, although I wasn’t diagnosed until I was 4.

CF is a genetic disease that causes someone to lose the ability to breathe due to opportunistic lung infections over time. In addition, people with CF have an inability to digest and absorb nutrients from food causing issues maintaining a healthy weight. Sinus issues, CF related-diabetes, infertility, and joint pain can happen as well.^1,2

The connection between chronic pain, CF, and RA

For that reason, when I started experiencing chronic joint pain in middle school, I didn’t say anything. For a long, long time, I accepted my joint pain that would come and go as another reason that my rare genetic disease sucked. It didn’t cross my mind (or my doctor’s mind either), that this wasn’t a part of my CF until it became a large quality of life issue in my late 20s. That began the journey that led me here.

In hindsight, I realize now that it’s more likely an entirely new disease was triggered by my original disease. Does that suck? Kinda. But it’s also meaningful and here’s how.

Did my lung disease trigger my RA?

When I was first diagnosed with RA, I asked my rheumatologist, “Where did this come from?” Truthfully, I was confused because a year prior I thought I had “passed” all lab work testing for RA. My diagnosis was a mystery and I was seeking a second opinion because I had little relief from the treatments I was trying at the time.

She told me more and more research shows that chronic infections can cause the immune system to be in overdrive which ultimately changes how it works and responds in everyday life. With a genetic predisposition for RA, continuous infections like those I have with CF or other environmental factors such as smoking, can trigger the body to develop RA.³ Often it takes time to show up in a pre-clinical phase where you may have symptoms but labs and testing comes back normal.

Mucosal disease and autoimmunity

I have noticed that RA is sometimes referred to as a “mucosal disease.” I thought that was really interesting because it’s commonly thought of as an immune system malfunction, or autoimmunity. It’s believed that the changes in the peptides of the genes and therefore the development of antibodies common in RA can occur because of local stress on the mucosal surface such as the lungs.² It’s also recognized that some people with severe RA have a mysterious lung involvement. Chicken or egg?

The origin of my RA

Personally, this explanation makes a lot of sense to me because the years before my RA pain got really bad, I experienced a lot of health issues with my lungs. I went through on and off IV antibiotics to curb infections, I was having daily fevers, coughing up blood, and I was very thin because the lung infections were taking over my body, draining me of all I had.

The pattern that my pain had followed for a decade prior suddenly went out the window and became almost constant. Little did I know that my lung infections were also causing my immune system to go haywire and revolt. When too much pressure is placed on your immune system for decades at a time, an eventual breakdown is expected. That breakdown for me looks like an autoimmune disease: rheumatoid arthritis. At least this is the narrative I have grown to accept as plausible.

Finding clarity and peace

I have learned that most people don’t truly understand how their bodies work. That is, until you are forced to understand because ultimately something has gone wrong. There’s a clarity I need in understanding how my RA came to be.

Why did I have to add another set of initials to my electronic medical record? I’ll never truly know why. But I can, in some uncertain way, know how it came to be. Sometimes having that information helps me make sense of all that’s happened and continue managing multiple chronic illnesses in the best way I know how. One day at a time. One letter at a time.