Woman with swirled eyes confused

RA or Not RA?

Last updated: June 2021

One of my favorite summer shows is about a concierge doctor in the Hamptons, New York. In one episode, a patient spends his entire adult life with a MS diagnosis; he even starts a foundation with the tagline “you are not your disease.” He meets the main character who notices some red-flags, runs new blood tests and finds out that in fact, this man does not have MS but Lyme disease…

What is seronegative RA?

I have sero-negative rheumatoid arthritis. I have the clinical symptoms of RA (swelling, joint pain, stiffness, and others) without the blood work to support them. I have beautiful blood. It is generally hearty and vibrant with the exception of some fluctuating white blood cells. I drink loads of water before every draw so I may not know my true sanguine nature. I do however want to feel better about getting stuck with needles so I do compliment my hemoglobin!

I’m not sure exactly how I feel about healthy blood work. Every time I go to a doctor they check my blood and discuss my diagnosis. They ask me how I’m feeling, what symptoms I have and through a process of elimination always come back to RA. There are a lot of unanswerable questions like:

Lack of supportive bloodwork for RA

I am exposed to animals so I am consistently tested for Lyme and other titers, all of which come back negative. We discuss different autoimmune conditions as symptoms arise and always cycle back. Why?

I wish I could tell you.

“Do I have RA???”

I don’t experience too much swelling, even during bad flares. I don’t have any joint deterioration (yet, at least). I don’t even get fevers often – the telltale sign of an active immune system- or “normie” sick.

Doesn’t sound right, does it?

Experiencing symptoms of RA

Here’s what does. I have joint pain; stiffness and my darling hinges lock up towards the end of the day. I do get some noticeable inflammation in my fingers and toes and I respond to medication. Sure, I am on some blanket autoimmune ones like methotrexate, prednisone and tramadol but I do well with specific biologics like Orencia. I feel like this class of medication wouldn’t be effective if I didn’t have RA, right? Possibly but, a lot of these biologics are effective in treating multiple diseases.

I often wonder, why RA? What specifically about my condition screams RA? Is it the namesake joint pain because I certainly don’t have the inflammation to back it? Is it all in my head? I firmly don’t believe this but this doubt presents occasionally.

Whenever I go to a new doctor we list my symptoms. They look at their computer, eyebrows raised, and challenge the current diagnosis. Is it Fibromyalgia? Is it an odd inflammatory condition? I understand the skepticism. I look perfectly well, I pass all my tests but I feel horrible. This is probably a good time to interject I have never been accused of “faking it”. A fact I really appreciate but it is frustrating to sometimes wonder at my diagnosis.

I do have an RA diagnosis

I have RA. I have had diagnosed rheumatoid disease for eight years. I did not disclose it at first but eventually incorporated it into my online persona. I became comfortable with it. Everything I do with my hobbies keeps this disease in mind. I feel like I have it, but what if I don’t? I don’t dispute I have an autoimmune condition. They all present pretty similarly. Who am I if I don’t have RA?

Do you have sero-negative RD? What are your insecurities? Let me know in the comments!!

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