I think healthy people aren’t aware of how difficult it is to get a diagnosis of our illnesses. Since July marks 11 years since my arthritis diagnosis, which was 9 years since I developed symptoms, I thought I would talk about the process for getting a diagnosis of arthritis. In this post, I’m sharing how 7 different forms of arthritis are diagnosed, as well as my rheumatoid arthritis diagnosis process. Plus, 2 other bloggers share how they were diagnosed with arthritis!  

I am not a doctor or a medical professional of any kind. I always back up my claims with sources. If you see (x) at the end of a sentence, that x should be linked with the source for that sentence. Additionally, you might see part of a sentence linked if there are multiple sources for a sentence. That link will have the source for my claims. 

How Different Types of Arthritis Are Diagnosed

Osteoarthritis diagnosis

Osteoarthritis is extremely common, and what most people think about when they hear I have arthritis. Osteoarthritis is known as wear-and-tear arthritis, as it’s “when the protective cartilage that cushions the ends of the bones wears down over time” (x). The Mayo Clinic says, “During the physical exam, your doctor will check your affected joint for tenderness, swelling, redness and flexibility” (x). The doctor will probably order CT scans and/or MRIs, and they might order blood tests in order to rule out inflammatory arthritis (x). 

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Inflammatory arthritis diagnosis

Inflammatory arthritis is a category of different types of arthritis, and the rest of the arthritis types in this post fall into this category compared to osteoarthritis. The Hospital for Special Surgery, or HHS – the world’s leading academic medical center focused on musculoskeletal health – says, “Inflammatory arthritis (IA) is joint inflammation caused by an overactive immune system. It usually affects many joints throughout the body at the same time” (x).

Unfortunately, there’s no definitive “arthritis diagnosis blood test” that will be 100% accurate if you do or don’t have arthritis of some kind.

But when it comes to diagnosing someone with inflammatory arthritis, there are some blood tests that will indicate that someone has inflammatory arthritis. The ESR blood test “can help assess levels of inflammation in the body,” and the C-reactive protein blood test “can help measure inflammation levels” (x). These tests, however, do not differentiate between different forms of inflammatory arthritis.

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Sometimes patients won’t have abnormal results in these tests, but other tests do (x). Very Well Health says, “Some patients may instead have elevated levels of ferritin, haptoglobin, ceruloplasmin, or complement. Other markers indicative of an inflammatory type of arthritis are anemia of chronic disease, elevated platelets, and elevated white cell count.” (x).

Other blood tests include genetic markers if you think you might have genetic inflammatory arthritis. Very Well Health says, “For example, HLA-B27 positivity is strongly associated with ankylosing spondylitis” (x). (That’s another form of arthritis I’ll discuss in this post.)

There are other non-blood tests your doctor might prescribe, such as imaging. X-rays and MRI scans “can help tell the difference between types of arthritis and can be used to monitor how your condition is progressing over time” (x). When I was diagnosed, for example, my rheumatologist prescribed full-body x-ray scans. 

Rheumatoid arthritis diagnosis

Like many of the forms of arthritis in this post, RA can be hard to diagnose because there technically isn’t a definitive test for it. You will probably start your diagnosis journey by seeing a generalized doctor, who will refer you to a rheumatologist. Regardless of who you see, you will almost definitely have blood work done as a part of your diagnosis. As the NHS says, “No blood test can definitively prove or rule out a diagnosis of rheumatoid arthritis, but several tests can show indications of the condition” (x). 

Earlier I mentioned that there’s no definitive arthritis blood test. You might be thinking, “Well, what about the rheumatoid factor blood test? Huh, Kate? You think of that?”. I did indeed think of that! But only “half of all people with rheumatoid arthritis have high levels of rheumatoid factors in their blood when the disease starts” (x). Maybe if I had my rheumatoid factor tested when I started displaying symptoms I would have tested positive, but I never have. Plus, up to 20% of RA patients never test positive (x). I am what’s called seronegative. If you test positive to the rheumatoid factor, you are seropositive. 

Finally, when you are diagnosed, your doctor will probably ask you to fill out a questionnaire designed to assess how well you do with everyday activities. The NHS says, “You may be asked to fill in a questionnaire on how well you can do things like dress, walk and eat, and how good your grip strength is” (x).

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Psoriatic arthritis diagnosis

Psoriatic arthritis is “a form of arthritis that affects some people who have psoriasis — a condition that features red patches of skin topped with silvery scales” (x). While most people develop psoriasis first and psoriatic arthritis second, sometimes people develop arthritis first (x).

As mentioned, there’s no definitive test for arthritis in general, and psoriatic arthritis is included in that. When it comes to forms of inflammatory arthritis that aren’t rheumatoid, it can be a bit tricky. Diagnosing psoriatic arthritis can be a bit more straightforward than diagnosing other types, in that many patients have inflammatory arthritis as well as psoriasis. Psoriasis itself often doesn’t look like anything other than psoriasis.

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Asides from that, like with other types of arthritis, diagnosing psoriatic arthritis involves an examination.

When examining you, the Mayo Clinic says that your doctor may “check your fingernails for pitting, flaking and other abnormalities” that are present in psoriatic arthritis but not others (x). Additionally, they might order x-rays, which can “pinpoint changes in the joints that occur in psoriatic arthritis but not in other arthritic conditions” (x).

Ankylosing spondylitis diagnosis

Ankylosing spondylitis is “an inflammatory disease and long-term form of arthritis” that generally affects the spine (x). However, it also affects other joints connected to or near the spine, such as the “buttocks, and neck, and sometimes in other areas like the hips, chest wall, or heels” (x). 

Stanford University says that “clearest sign of the disease is a change in the sacroiliac joints at the base of the low back” (x). However, it can take several years for it to show up on an x-ray (x). This is why Stanford says, “If no changes to the sacroiliac joints show on the X-ray but your doctor still suspects ankylosing spondylitis, an MRI or CT scan may allow an earlier diagnosis” (x). 

Changes on your x-ray can mean permanent damage, which obviously we want to prevent if possible, so getting diagnosed ASAP is important. This is true for many different types of diseases, but ankylosing spondylitis can include fusion of the spine, which you can’t undo (x). If your x-rays show fusion of vertebrae but not of other joints, you might have ankylosing spondylitis.

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As mentioned earlier, ankylosing spondylitis can run in families, so your doctor will want to know if there’s anyone in your family with it. (If there isn’t anyone in your family with ankylosing spondylitis but there is a history of different forms of autoimmune diseases, tell your doctor that! There is a strong autoimmune history on both sides of my family, but I’m the only one with RA and one of only two with autoimmune arthritis.)

As the etymology of spondylitis means “inflammation of the vertebrae,” there are more forms of spondylitis than ankylosing spondylitis. Check out the Spondylitis Association of America’s website to learn more about different types of spondylitis.

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Juvenile arthritis diagnosis 

First and foremost, “juvenile arthritis” is used to describe all types of arthritis in kids (x). Juvenile idiopathic arthritis “is the most common type of arthritis in kids and teens” (x). The Arthritis Foundation says, “The word ‘idiopathic’ means unknown, and researchers aren’t sure why kids develop JIA” (x). 

There are 6 types of JIA, and kids can start with one type of JIA and then later it shifts to be a different type of arthritis (x). Like with the other forms of arthritis in this post, there’s no cure for JIA. Patients might go into remission, which the Arthritis Foundation defines as “​​little or no disease activity or symptoms” (x).

That being said, let’s talk about the juvenile idiopathic arthritis diagnosis process.

Remember the rheumatoid factor blood test? Well, when it comes to JIA, the American College of Rheumatology (ACR) says, “Adults with rheumatoid arthritis typically have a positive rheumatoid factor blood test, but children with JIA typically have a negative rheumatoid factor blood test” (x). Instead, the ACR suggests physical examination and, you guessed it, imaging. 

The ACR says, “a child must have inflammation in one or more joints lasting at least six weeks, be under 16 years old and have all other conditions ruled out before being diagnosed with JIA” (x).

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Still’s disease diagnosis

Adult-Onset Still’s Disease is “a rare type of inflammatory arthritis that features fevers, rash and joint pain” (x). The Mayo Clinic says, “The signs and symptoms of this disorder can mimic those of other conditions, including lupus and a type of cancer called lymphoma” (x). Describing this disease as “intense” feels like an understatement. 

Diagnosing Adult-Onset Still’s Disease is especially tricky. The National Organization for Rare Diseases says that diagnosing AOSD “is usually made based upon a thorough clinical evaluation, a detailed patient history, identification of characteristic findings and the exclusion of other possible disorders” (x). Not only does this include a lot of the tests mentioned so far, but doctors often want to look at a patient’s organs. Imagining “might reveal […] enlargement of the spleen or liver” or “inflammation of the pericardium or myocardium” of the heart (x).

Did you ever see The Big Sick, by Emily V. Gordon and Kumail Nanjiani? The semi-autobiographical film about their relationship is about Emily’s very real experience with Adult-Onset Still’s Disease (x). Emily and Kumail are real people, even if the portrayal of others (and partially themselves) in the movie is different than in real life. Emily really has Adult-Onset Still’s Disease (x). I don’t share that to freak you out if you’ve seen the movie and know someone with AOSD, but I wanted to share it so that you know that is a recent depiction of it made by a real patient.

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There are so many more types of arthritis! I just wanted to cover 6-ish here. (Inflammatory arthritis is more like a category than a type of arthritis.) But now that we’ve discussed how different types of arthritis are diagnosed, let’s talk about arthritis diagnosis stories.

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My Arthritis Diagnosis Story

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 because my 2004 surgery didn’t work, which we didn’t know until 2008. 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 my arthritis was documented.

Nearly a year and a half later, I was still experiencing 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 thing is that the arthritis found in my foot was both cartilage damage (a sign of RA) and bone erosion (could be either RA or OA). And since I already had had 2 ankle surgeries, we initially thought that the cartilage damage was from being operated on. It is possible for someone to have osteoarthritis and autoimmune arthritis! But it wasn’t the case for my foot.

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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. They were flat because of arthritis. That got me off of the rheumatology waiting list, and within 30 minutes of my appointment, I was diagnosed with autoimmune arthritis 9 years after I started having pain. My initial arthritis diagnosis was psoriatic arthritis. (Full TMJ arthritis story here!)

2 years later, the diagnosis changed to seronegative rheumatoid arthritis, which meant that I had RA but my rheumatoid factor blood test was negative. I was originally diagnosed with psoriatic due to my personal history of psoriasis, as well as a strong family history it. When I was diagnosed with psoriatic arthritis, I had had a psoriasis flare less than a year before. 

Now – 11 years from that first arthritis 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.

Another reason is that we’ve gotten better imagery of my joints over the last 11 years, and the arthritis looks more like how rheumatoid arthritis damage looks than how psoriatic does. Plus, I don’t think I ever have had that nail pitting that psoriasis patients have. There are several other reasons – one being that I respond to RA medications and not psoriasis medications – but I won’t go into any more.

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Other Patients’ Arthritis Diagnosis Stories

I asked other bloggers to share their arthritis diagnosis stories, and I have 2 more people’s experiences to share with you. Both of these bloggers gave me permission to reprint their stories. I hope these stories help you feel less alone out there, and also show that arthritis diagnosis in general isn’t always clear.

How Cynthia was diagnosed with psoriatic arthritis

Cynthia – aka The Disabled Diva – has psoriatic arthritis. The following is an excerpt from her blog post about her diagnosis story, which she shared with me with permission to share here. 

“In 2001 I made an appointment to see my primary physician for a rash on my neck. It was admittedly tiny and not something I would normally see a doctor for. Yet, there was something different about this rash. It burned and itched like nothing I had ever felt before, and nothing I put on it provided relief.

To my dismay, I was laughed out of the exam room and told to treat it with an over-the-counter dry scalp shampoo. So I did. And within two days, the rash had spread. I was covered head to toe.

Instead of laughing at me when I returned, my doctor ran to his office to grab a huge medical book. He was giddy that my rash ended up being a textbook case of psoriasis. Never seeing it to this degree in person, he invited the entire practice into the exam room to show them my rash.

[…]

After moving from Colorado to Arizona, I experienced a reprieve from psoriasis and the symptoms of joint pain, muscle aches, and fatigue. My relief continued while I was pregnant with my daughter. But in 2003, the pain and fatigue became something I could no longer make excuses for or ignore. Instead of occurring occasionally, they took over my body and life.

After ruling out other diseases and disorders such as rheumatoid arthritis, lupus, and multiple sclerosis, I was diagnosed with fibromyalgia. Several failed attempts to reduce my pain and symptoms, my physician referred me to a rheumatologist.

During my initial consultation, my rheumatologist asked me why I didn’t mention my psoriatic arthritis diagnosis on my paperwork. I said that I had no idea what he was talking about.

His keen eye and attention to detail and his patients caught a tell-tale sign of PsA. I often wondered if it would have been caught had I worn closed-toed [shoes], but thankfully my flip-flops couldn’t hide my hideous toenails. After ruling out any other possible illnesses and with my visible and invisible symptoms checking every mark, he confidently diagnosed me with psoriatic arthritis.”

Keep reading

There is so much more to Cynthia’s story! Go to her blog to keep reading.

Follow Cynthia on Twitter, Instagram, or Facebook.

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How Laura was diagnosed with rheumatoid arthritis

Laura, from Creating Your Own Sunshine, has rheumatoid arthritis. Here is her diagnosis story.

“For the longest time I have had ‘problems’ with my body and I wish that someone would have helped me piece everything together. I was told when I was a lot younger that I was hyper mobile in certain joints, this was used as a reason as to why I was prone to ligament damage and other injuries in and around my joints and by the time I was in my early twenties I had ligament damage in both of my ankles and my hands and wrists were always slightly sore. Not IA sore but always noticeable, doing things like press ups or even yoga, anything where I had to [bear weight] on my wrists was always uncomfortable.  I was resigned to just accepting that this was just how it was with me. 

“However things kept on happening [over the decades]. […] Not one GP over the course of more than a decade ever thought to put all symptoms together and question the chance of it being autoimmune in nature, I was just told the ‘list’ of symptoms was unhelpful and they wanted just my worst one!

[…]

“I knew it was inflammatory arthritis, in fact I was convinced it was Rheumatoid arthritis, I had all the classic symptoms, apart from that is, the positive blood tests. To skip through this a little, I suffered for months and months and after the GP dragging his [heels] to even refer me, and my referral initially being rejected, I finally had an appointment with a rheumatologist. This was scary as my symptoms were constant (some days I needed help getting out of bed, or down steps) but my swelling was sporadic, the day of my appointment was a day when I wasn’t particularly swollen. With my swelling at bay, a diagnosis of fibromyalgia ruled out and my negative blood tests, the rheumatologist said there wasn’t really any evidence, apart from the symptoms to get to a diagnosis of any kind. She was about to [tell me to] come back in a few months when she said, ‘let’s just do an ultrasound scan while you‘re here’ and thank goodness she did, she found synovitis in my joints and I cried! I thought I would be devastated but by this time I was relieved that it was something after all, I had started to believe that it was all in my head. My x-rays also came back showing some degeneration too.

“My rheumatologist told me that from a symptom perspective it sounds like I have Rheumatoid arthritis (thank you Google), but because of my seronegative status (my blood work was normal apart from a positive ANA), she wanted to diagnose me with the umbrella term of inflammatory arthritis as it could end up manifesting into another type, like Lupus or Psoriatic arthritis. […]

“Having this disease has tested me in more ways than I can explain but one thing is for sure, time helps you to find ways to manage, to find things that help.  Everyone that suffers is very individual, and so what helps you will be different from the next person, but there are things that can help. Whether that is medication, diet or lifestyle changes. The intense suffering isn’t always constant for everyone so please have hope despite the challenges.

“I started my blog to raise awareness of the disease and its disparity from person to person, to support people who needed it and to make people feel less alone.  I really hope it helps someone.”

There is so much more to Laura’s story! Go to her blog here.

Follow Laura on Pinterest, Instagram, or Facebook.

Thank you to Cynthia and Laura for sharing their stories! I hope that their stories and mine will help you understand what we go through in search of our diagnoses. 

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