Why Is Rheumatoid Arthritis Hard to Diagnose?

People are generally shocked when I tell them that it took 9 years before I received my rheumatoid arthritis diagnosis. 9 years of surgeries, pain, seeing doctor after doctor, and having doctor after doctor tell me that there wasn’t anything wrong with me. 9 years of signs of rheumatoid arthritis without a diagnosis. And I’m not alone. I’ve talked to others who have taken several years from first symptoms to diagnosis. This brings up a particular question: why is rheumatoid arthritis hard to diagnosis?

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What is rheumatoid arthritis? First and foremost, we need to address this. Rheumatoid arthritis is NOT the same as arthritis you might get as you get older; that’s osteoarthritis, and that can also occur from a variety of other situations, like playing sports. Rheumatoid arthritis is an autoimmune disease, in which the immune system attacks the body (x). The way I explain it is my immune system is broken and thinks that my joints are viruses. It’s important to understand this because many people think that diagnosing arthritis is a black and white thing. When an autoimmune disease is involved, it can get a bit more complicated.

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My diagnosis journey – I also want to make my diagnosis journey a bit clearer, as there will be bits that are relevant to what comes later. I first started to have pain in 2001 at age 10. It started with my left ankle, and I was soon diagnosed with a tarsal coalition in each ankle. As I was 10 when the pain started, we wanted to put off surgery as long as possible. I had 1 in 2004 and 1 in 2006 – both on the left ankle – but the pain didn’t go away. I saw doctor after doctor, everyone from ankle surgeons to pain specialists, therapist to neurologist. Eventually, I met my current ankle surgeon, and he believed in my pain. Additionally, the tarsal coalition had returned. He operated on my left ankle in 2009, and that surgery involved putting a camera in my foot to see what else was going on. This was the first time that arthritis was documented.

Nearly a year and a half later, I was still experiencing some pain, and my surgeon suspected that there was something arthritic going on because where the pain was and where the coalition was were 2 different locations in my foot. I was put on the waiting list for rheumatology, the specialty that serves rheumatic conditions like autoimmune arthritis. Several months later, I had a flare in my jaw; I woke up and couldn’t open my mouth more than 8 mm. Not that it was too painful. It physically wouldn’t open. We somehow managed an x-ray and found that both of my TMJs are flat when they should be round. That got me off of the rheumatology waiting list, and within 30 minutes of my appointment, I was diagnosed with autoimmune arthritis – psoriatic at the time – 9 years after I started having pain. (Full story here!)

The diagnosis change to rheumatoid happened 2 years later. I was originally diagnosed with psoriatic due to my personal history, as well as a strong family history, of psoriasis. When I was diagnosed with psoriatic, I had had a psoriasis flare less than a year before. Now – 8 years from that first arthritic diagnosis, if you’re confused – I haven’t had any psoriasis since 2009, which is one reason why we’ve stuck with rheumatoid as the official diagnosis.

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Why Is Rheumatoid Arthritis Hard To Diagnose?

There are over 100 kinds of arthritis – Dictionary.com defines arthritis as “acute or chronic inflammation of a joint, often accompanied by pain and structural changes and having diverse causes, as infection, crystal deposition, or injury” (x). This includes everything from osteoarthritis to lupus and more. This is one reason why it can be hard to decide if RA is the best diagnosis, as you and your doctors might be trying to decide which specific form of arthritis you have. For example, as you can see above from my story, there might be factors that impact what type of arthritis you have specifically.

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While there is a blood test, you can be negative and still have RA – This is something that surprises a lot of people. People who respond positively have what’s called seropositive RA, which “means that blood tests show the presence of anti-cyclic citrullinated peptides (anti-CCPs), also called anti-citrullinated protein antibodies (ACPAs). Anti-CCPs are antibodies produced against proteins in the body undergoing a molecular change in structure called citrullination. They are present in approximately 60 to 80 percent of people diagnosed with RA” (x). As those statistics show, 20-40% of RA patients do not have those antibodies, and that’s called being seronegative. That’s my case.

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Joint pain isn’t the only symptom – Well, joint pain is one of the primary signs of rheumatoid arthritis, but it’s not the only one. Others include joint inflammation, fatigue, loss of appetite, low-grade fever, morning stiffness, persistent cough, chest pain, blurry vision, and eye pain (x, x). Some of these are from inflammation in other parts of your body – like morning stiffness, persistent cough, chest pain, and eye pain. Others are just different ways the disease can present itself. And “can” here is an important word; every patient is different, so they’ll have different symptoms. Someone might only have 2 or 3 joints that cause pain, but they also might have some of the other symptoms. This could mean that a doctor doesn’t think that they’re connected. I personally have really dry eyes because the inflammation around my eyes prevents my eyes from holding onto tears, so they evaporate really quickly. I just thought it was a weird thing my body was doing, but my optometrist said that it was the RA. If I hadn’t already been diagnosed, I wouldn’t have thought that it was connected my joint pain.

Note: since I wrote this post in 2018, I have been diagnosed with Sjögren’s syndrome, which is another type of autoimmune arthritis, and what caused that dry eye.

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But there are plenty of reasons why someone could have joint pain and it not be RA – You could have terrible luck and sprain one ankle and jam your finger in a door. You could have one of the other forms of arthritis. You could be going too hard on your workouts without proper stances or supports for your joints. Basically, in many cases, doctors will look for other possible reasons before looking at rheumatological possibilities. This means that if you have a family history of an autoimmune disease, you need to tell your doctors. I say “autoimmune disease” and not “rheumatoid arthritis” because as long as there’s a case of autoimmune disease in your family, you might get one, as well. As I’ve said before in this post, I’m not a medical professional, but I do have anecdotal evidence of this. I’m 1 of 3 people with an autoimmune disease from my dad’s side of the family – we’re all descendants of my grandparents – and we all have different ones. So if you have joint pain and a history of autoimmune disease(s) in your family, tell your doctor when you see them.

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And you have to have swelling and pain for at least 6 weeks to be diagnosed – This is hard because if someone has had both for 4 weeks, obviously they’re going to want to be diagnosed with whatever is going on, but they may not be able to be diagnosed yet. Which is so frustrating! And the other thing is that you need to see a rheumatologist to be diagnosed with rheumatoid arthritis (which we’ll get to in a minute), so you rely on a doctor referring you to rheumatology. Maybe a doctor won’t refer a patient to rheumatology because they’ve only had swelling or only pain. Maybe a rheumatologist doesn’t want to diagnose if they haven’t had swelling and pain for 6 weeks. There are a variety of reasons why this might happen, but basically these qualifications can make getting a diagnosis difficult.

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There aren’t that many rheumatologists – There are 1.3 million Americans in the US who have rheumatoid arthritis, and as of 2015 there were 4,997 rheumatologists (x, x). That’s not nearly enough. And again, you need to see one of them to get officially diagnosed. So of course it can take forever to get diagnosed! Especially because this is just the number of how many rheumatologists there are; who knows how many of them are actually good doctors. I’ve seen 4 rheumatologists in my life. 1 said there was nothing rheumatologically wrong with me (she was wrong). 2 treated me like I wasn’t having any joint pain because I’m seronegative. And 1 is amazing and I’m so sad that he moved away. (Here’s hoping my knew rheumatologist is great!)

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Plenty of doctors don’t take the pain of people who aren’t white men seriously – This is something that is true both anecdotally and that has been found true from studies. Women are “more likely to be treated less aggressively in their initial encounters with the health-care system until they ‘prove that they are as sick as male patients,’” (x). And Serena Williams almost died due to complications after giving birth to her daughter (x). That is a symptom of the effect of racial bias in healthcare. I’ve seen stories from people online who experience this kinds of bias, and there has been research done that proves it. In fact, “Mounting research finds that racial bias and discrimination in health care as well as outside of medicine contribute to poor health for African-American patients and other racial and ethnic minorities” (x). I’ve also heard about non-cis people experiencing this. In 2010, the National Transgender Discrimination Survey Report on Health and Health Care reported that “19% of our sample reported being refused care due to their transgender or gender non-conforming status, with even higher numbers among people of color in the survey” (x). Additionally, they found, ” 28% of respondents were subjected to harassment in medical settings and 2% were victims of violence in doctor’s offices” (x). So, sadly, it make take time for you to be diagnosed until you see a doctor who isn’t biased.

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What other rheumatoid arthritis or chronic pain topics would you like me to cover?

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