Joint Stiffness Not Required
Last updated: April 2023
I remember the first time I saw a rheumatologist, he asked me a simple question: Do you experience any stiffness? Promptly, I said no and I was telling the truth.
Although I had undiagnosed pain for over a decade at that time, I rarely had stiffness in the conventional sense. I didn’t know what to think after he asked this question, but his response said it all- “Well, that means you don’t have RA. So that's good.” This appointment with this particular rheumatologist would make me question my pain for the next 4+ years.
My journey to my RA diagnosis is a bit different than your typical patient. Before RA, I had spent most of my life identifying as a person with a rare genetic disease called cystic fibrosis. Cystic fibrosis (CF) is a disease you are born with that affects your ability to breathe over time due to chronic lung infections. In addition, people with CF are unable to digest and absorb nutrients from food and struggle to gain and maintain weight. Although breakthrough treatments are helping people with CF live longer than ever, the life expectancy is still only 50 years old.
CF masked my RA symptoms
In the beginning, everyone assumed my joint pain was attributed to rebound pain from a very high dose of ibuprofen I took daily to slow the progression of damage in my lungs. If I was late taking my meds or skipped a dose, I had full body aches each and every time. Once I took the ibuprofen again, I felt better, and the cycle would continue. Looking back, I realize that the 2800mg of daily ibuprofen masked (and inadvertently treated) some of my early RA symptoms, but no one pieced that together at first. In fact, I had pain, fatigue, low-grade fevers, and went into remission during pregnancy– all classic signs of RA. However, my CF was still used as a scapegoat to explain my symptoms and the rheumatologist said he wouldn't treat me without a diagnosis.
Where does the joint stiffness come in?
Even after adding the letters “R-A” to my rap sheet with the help of my CF doctor and a more reputable (and less gaslighting) rheumatologist, the words of my OG rheumatologist still haunt me. What about stiffness? Do I have stiffness? If I truly have RA, where is my stiffness? Would I have been properly treated sooner if I had stiffness? Bottom line: I don’t know. I’m still learning what this new identity entails. I do know that you can have seropositive RA like me and not experience joint stiffness.
Even now, when I wake up in the mornings, I wouldn’t classify my joints as stiff. Or maybe, they aren’t the stereotypical definition of stiff: the older granny hobbling around after getting off the couch. Instead, when I get up in the morning, my wrist feels painful if I move them as if they have been stuck in one position all night. They feel unstable, like something that is supposed to hold the joint together isn’t working properly. They get stuck in weird positions. Is that stiffness? I still don’t know. I probably need to let my issues surrounding “joint stiffness” die. Maybe in the next 4 years, my joint stiffness will be screaming in my face, and I’ll finally accept I truly have RA and that rheumatologist knew absolutely nothing. Or maybe not?
How would you describe your joint stiffness? And RA symptoms that you feel don’t apply to you? Share your experience with us below!
Did you know rheumatologist Dr. Donica Baker is answering community questions?
Join the conversation