Well, I Messed Up At the Doctor's Office
My mind just went blank, and I think I dropped the ball
Yesterday I drove out to a part of Chattanooga where I really hate driving, for a follow-up with my new rheumatologist. I was so nervous about the drive that I didn't spend much time thinking about the actual appointment itself.
I've been ANA positive with anti-RNP antibodies for at least a few years, and I've been been haunted by worsening joint pain and stiffness for more than a year (over two years, if we're counting when my knee issues began), so I was just looking forward to having some answers.
At the last appointment, this rheumatologist said we'd go over my blood work results and make a plan of treatment. That sounded better to me than anything my other arthritis doctors have done, so I wasn't too worried.
But when the doctor walked into the exam room yesterday, I was sort of dumbstruck as he told me that my labs looked excellent. There was nothing unusual. He said I don't have any active autoimmune disease that he can see.
I didn't really know what to say or how to process what that meant, so I just said something like, “Oh, that's great.” I mean, it's not as if I want to have another issue. But my brain just wasn't working right to even know what to ask him after that. My mind went numb and blank.
I said something about how I'd been having less joint pain lately, but it's been hard dealing with my symptoms when it feels like I only get a few good weeks a year without debilitating pain and stiffness. He asked me if any of my other doctors knew why that was, and I said, “No, that's why my PCP sent me here.”
He asked if I've been on anti-inflammatories before and decided to put me back on Celebrex for my osteoarthritis, and recommended that I add Voltaren topical cream to my knees and other joints that bother me. I think I just said, “okay,” and then he said I could come back in six months for a checkup.
It's so weird because I've never found myself so… blank in a doctor's office before. I couldn't even process my disappointment until I got back to my car and thought, “wait—what just even happened?” I thought rheumatologists are supposed to be more like detectives.
He really just put me back on Celebrex (that never did enough to begin with) and decided I must only have osteoarthritis?
Sitting in the parking lot, I pulled up the patient portal on my phone and looked at my test results. It was all Greek to me—I didn't really understand any of it. One of my tests was also labeled abnormal high, the C3 Complement (RDL). Everything else was in range, but the rheumatologist didn't mention my high C3, so there's likely a reason for that, but I drove away feeling very puzzled.
The whole reason my PCP sent me to a new rheumatology group was for them to do some digging and play detective to help pinpoint WHY I've had rare brief periods with practically zero pain or stiffness. Plus, I've had so many other symptoms of malaise and dry burning eyes, random welts or hives, and awful flare ups where my wrists, elbows, shoulders, ankles, and toes all ache. The inflammation seems to affect my whole body, aside from my hips, back, and neck.
And I really don't know why my worst pain seems to travel and change as much as it does. It's difficult to even use the pain scale when so much of it changes, but I kind of just try to get used to whatever my new normal has been.
Is that really just how osteoarthritis goes? With a few inexplicably symptom-free days but more flare-ups than I can count?
I feel more confused than ever. Mostly though, I'm kicking myself for not being more prepared with questions and advocating for myself.
I'm planning to talk to my primary care provider about all of this at my appointment on Friday, and see what he thinks.
Maybe my lipedema surgeon is right and I could be dealing with something like mast cell activation syndrome after all. I don't know what to think. I hate feeling like I'm back at square one, but I'm grateful that I've been feeling some relief lately—presumably from the tirzepatide.
This morning, I woke up more tender and sore in my knees than I have over the past week, but it hasn't been too terrible all day. It's still not as bad as my typical pain. Here's hoping that's about as bad as it will get for a while!
I'm hoping to get more answers soon.
Could it be that the issue is inflammation? There is increasing evidence that the GLP-1 receptor agonists in your weight loss meds can help reduce this significantly. Many of your symptoms could be explained with very high levels of inflammation. These can and do occur without autoimmune disease. Hoping your positive journey continues - if the weight loss meds are key, then that is what really matters
Hang in there, sweetheart. You have come so far. You know so much more. Call to your Higher Self for relief.