CF and RA: From One Abbreviation to Another

My official diagnosis with rheumatoid arthritis (RA) came quite out of the blue. RA was never expected to be the cause of my chronic pain and joint issues I have had for the past decade.

In fact, it was overlooked as a possible explanation a few times before the a doctor stumbled upon it. That is because, in my case, there was always a bigger fish to fry, so to say -- a scapegoat called cystic fibrosis.

What is cystic fibrosis?

Cystic fibrosis (CF) is a progressive and genetic disorder I was born with thirty years ago. With CF, a genetic mutation causes the mucus in the body to be thick and sticky, instead of thin and lubricating as normal.

It mainly affects my lungs and GI tract, causing frequent lung infections that limit my ability to breathe and issues digesting and absorbing foods.

Cystic fibrosis is a very treatment-heavy disease with hours of airway clearance and nebulized medications, five pills with each meal plus 20 more for good luck, insulin throughout the day, IV antibiotics to fight infections, ect. Plus, the added stress of managing pain since a small percentage of people with CF have chronic pain that’s described as CF-related arthritis.

It’s a lot. Cystic fibrosis is one heck of an illness.

Was my joint pain related to CF?

As far back as early high school, I have had joint and body pain. The pain always came and went with the highs and lows of my disease. The pain was mostly in my wrists and ankles but would travel to my larger joints when I didn’t treat it with anything.

The weird thing was that in the evenings when my pain would get worse, I would almost certainly have a low-grade fever as well. Since the pain was mostly managed with an extremely high dose of ibuprofen I took for inflammation in my lungs, I didn’t think too much of it for a long time.

In need of a second opinion

However, when my joint pain got so bad that I was taking daily Prednisone and Cymbalta and a nightly Tramadol to sleep, my pulmonologist said we needed another opinion from a second rheumatologist.

The first rheumatologist said he couldn’t treat me because my pain was from CF. At that point I agreed with him--I figured it was CF progressing to gain control over my body. All the years of wear and tear, my low lung function, and my low weight was just too much for my body to bear. Of course, I felt like crap and was in pain every day - I was getting sicker with CF.

Adding RA to the mix

After listening to my symptoms and looking at my joints, my new rheumatologist looked me straight in the eyes at my first appointment and said, “If we run some tests, I am almost certain we will find something.” She pointed out the swelling in my ankles and commented how I had no pain in pregnancy a few years back which was similar to her patients with RA.

Unexpectedly, she was right! The lab results showed I have elevated anti-cyclic citrullinated peptide levels, indicative of RA. The doctor prescribed me Plaquenil right away and weaned me off Prednisone and Cymbalta to come back in 3 months for a follow-up.

Although I wasn’t too impressed to add another abbreviation to my list of health ailments, it was a relief to find answers in the lab results. It wasn’t CF causing all this pain for so long. It had a name and a straightforward treatment approach meaning, for the first time in a long time, I felt hope that I could have pain-free days coming my way.

How was your RA diagnosis? Was it straightforward or a difficult journey like Janeil? Share with us below!