Photo of Sarah Islam with text, My mom-radiographic axial spondyloarthritis patient journey

This story was told to CreakyJoints by Sarah Islam, a 26-year-old fourth-year medical student at the Indiana University School of Medicine. Sarah lives in Indianapolis with her partner and two cats. Originally from India, Sarah moved to the United States in 2008, and will begin a medical residency in psychiatry later this year.

Here is Sarah’s story of what it was like to navigate a diagnostic journey through the health care system while she was studying to be a doctor herself.

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In the fall of 2018, during my third year of medical school, I started to get sick really often. I’ve always been generally healthy — one of those people who maybe got the flu once a year and that would be it. I was doing a clerkship (a rotation) in pediatrics, and the physicians I worked with chalked it up to the fact that I was spending more time around sick (and sometimes sticky) kids. It made sense to me, so I didn’t think much of it.

But I was having fevers a lot, which was odd for me, and I just felt generally fatigued a lot of the time. I had to miss a lot of clinic days — so much so that I started to have to make them up, which had never happened to me before in any of my other rotations.

That was when I first started to think something was off.

Grounded by Symptoms

That sickness trajectory continued. In May of 2019, after only a month of starting my fourth year of med school, I had already missed five days because of the same fevers and flu-like symptoms. I spent my days in bed feeling like I had been hit by a bus.

Then one morning I woke up and couldn’t move. The only word I could use to describe the feeling in my back was “frozen.” It didn’t quite feel like pain, but more like I was incapable of moving. I told my partner, “I don’t think I can walk. I don’t think I can bend. I don’t think I can get out of bed.” We headed to the emergency department.

Until this point, I hadn’t sought medical care for any of my bouts of illness, because I thought I had just been under the weather. When you’re in med school, you sort of assume that any sickness comes from being constantly stressed out. But that explanation didn’t totally add up. I had been religiously working out for the first time in my life and had recently lost 60 pounds. Physically, I was in the best shape of my life. Sickness from stress didn’t click.

At the ER I tried to explain that my back felt “locked up” and “frozen.” I told them the pain was shooting down my arms and legs, but not in any specific pattern. The physician’s assistant saw from my medical history that I had polycystic ovarian syndrome (PCOS) — a hormonal disorder that can cause irregular periods — and seemed to think we’d found the cause. She told me it was probably due to my PCOS; something ovary-related, maybe a follicle rupture.

But I was a medical student. I knew my pain wasn’t in my ovaries. I told her again that it was a pain in my back. They had me do an ultrasound anyway, and it gave us no answers, like I knew it wouldn’t. I decided to ask for a CT scan. They told me I was too young to get one because of the radiation risk and wouldn’t order it. In the end, I was there for six hours and left with pain medications and no answers.

Pushing for a Diagnosis

For the next day or so, I was better, but I was still in pain. I went to an internal medicine doctor, who didn’t seem very concerned, but said he would order baseline labs. Of course, an outpatient medicine process like this can take a month, especially if you have a busy medical school schedule that makes scheduling appointments difficult.

Finally my pain reached a point where I could no longer leave my bed. I had to call my school’s administration and postpone my clerkship so I could figure out what was happening. My internist continued to take me through all kinds of different exams and tests.

I saw a hematologist (a doctor who treats blood diseases) and discovered I was anemic, but fixing that issue didn’t make a difference in my symptoms. I found out I had an elevated protein level in my blood and saw an oncologist, but — thankfully — it wasn’t cancer. I went to see a spine specialist in case I had a back injury. But my MRI was clear.

All of my tests were coming back negative.

Except for one: I had two inflammatory markers in my blood — C-reactive protein (CRP) and erythrocyte sedimentation rate (ESR) — that were higher than they should be. I hadn’t been able to exercise in over a month, so my doctor said it must be because of the extra weight I had put back on as a result. But I told him the symptoms came on before I gained weight, so that explanation didn’t make any sense. Then he said, “I see you’re on medication for depression and anxiety. Do you think maybe it’s all in your head and this is just a way for you to avoid the stress of med school?”

But med school is where I had been taught to take signs like high levels of inflammatory markers seriously as signs of inflammation that warranted further evaluation — usually rheumatological. I felt sure that weight gain and stress were not the explanation for the debilitating symptoms I was having.

Finally I told him, “Actually, I think it’s ankylosing spondylitis. I need a referral to a rheumatologist.” He didn’t agree. He explained that I wasn’t a 20-something white male, and I didn’t have any signs pointing to AS on my X-rays.

Ankylosing Spondylitis vs. Non-Radiographic Axial Spondyloarthritis

I had learned in school that ankylosing spondylitis is a type of inflammatory arthritis that affects the lower back and sacroiliac joints (where the spine meets the pelvis), as well as other joints. It is part of a spectrum of diseases known as axial spondyloarthritis (axSpA).

When you have ankylosing spondylitis, it means that the damage to your joints is visible on X-rays. If you have similar symptoms but there’s no visible joint damage on X-rays, you could have a condition called non-radiographic axial spondyloarthritis (nr-axSpA) — but I didn’t know about this at the time. Also, I know now it’s a big myth that AS only affects white men.

The Doctor Who Really Listened

I continued to push forward, because I knew I might be right. I felt it in my bones — literally. It was October 2019, and I’d been dealing with unexplained symptoms for over six months at this point. I reached out to my spine specialist and asked if she would refer me to a rheumatologist. She was able to make it happen, and finally I had my appointment.

The rheumatologist turned out to be amazing. He really listened to me. I told him the main things that led me to think there was a rheumatological or autoimmune cause were that whenever I felt pain and stiffness, I also tended to have fevers and fatigue.

The nature and locations of the pain made me suspicious of AS because I felt it mainly in my lower back. I also had noticed pain in my rib cage on occasion, as well as pain in my hips, buttock, heels, and feet that didn’t seem to match up to when I was on my feet or had increased activity.

I told him that when I got desperate and Googled my constellation of symptoms together, all the variations led me to think it was ankylosing spondylitis.

The big kicker was realizing that my pain was worse in the mornings after a night of sleep and worse on days I was inactive. That has always been the “lightbulb finding” they taught us to associate with AS in school and it made everything make sense. Back pain that’s worse with rest and that gets better with activity is a sign of inflammatory back pain — the kind associated with immune system overactivity — not mechanical back pain from an injury or a slipped disc.

He said, “We need to X-ray your sacroiliac joint. I think that’s where the problem is.” That was a relief to hear, but even more relieving was the fact that he decided to go ahead and treat me as if I had a rheumatological condition while we waited for the results. He started me on a combination of a disease-modifying antirheumatic drug (sulfasalazine) and non-steroidal anti-inflammatory medication (meloxicam).

I felt great right away. I didn’t even have a diagnosis yet, but I just knew. Clinically, I fit the picture of some kind of arthritic problem.

Getting to the Bottom of My Symptoms (Finally)

My X-rays and a later MRI both came back negative for signs of AS, and those results plus a negative blood test for HLA-B27 — a genetic marker that’s associated with a higher risk of having AS — meant my rheumatologist didn’t feel comfortable calling it “axial spondyloarthritis.” It didn’t fulfill the classification, which requires one of those two criteria.

But I was also never able to take the full dose of sulfasalazine since it gave me terrible gastrointestinal side effects, so he was determined to find a better alternative to control my pain. He is the kind of doctor who worries less about diagnosis and more about intervention, which I appreciated.

A few months later I had a flare-up that was pretty bad. It was the first one I’d had for a while. The rheumatologist told me there was this “new” diagnosis called non-radiographic axial spondyloarthritis. I had never heard of it, so I read up on the condition, and then we went over everything together. Everything made sense. The symptoms of nr-axSpA fit my daily experience to a T.

We made the decision to start me on a biologic, a type of medication that targets the inflammation from an overactive immune system. As a general rule, I try not to speak in absolutes with medicines because I know that sometimes it’s hit or miss, but it’s been truly lifechanging. I saw benefit immediately. When I talked to the doctor after my two first two doses, he said, “You’re already seeing benefits? How is that possible?” I said, “I don’t know, but I like it.”

So after being on the medication for a few months, am I “back to normal?” Not exactly. Right before my symptoms started, I was lifting weights and using a spin bike and elliptical five to six days a week. I don’t know that I’ll get to that point again. But it’s definitely not anywhere close to what I used to feel when I couldn’t even sit up in bed most days.

All I notice now is some stiffness in my back and my hips, mostly in the morning. As I start moving around through the day, the stiffness gets better. I think the biggest difference has been the fact that I can bend and lift things, which was a no-no for me for most of last year and the year before. Recently, I walked a few miles, which was more than I’d been able to do for a long while. It feels good.

A “silver lining” of this diagnosis happening during a pandemic has been that a lot of my rotations — psychiatry and family medicine, for example — were ones I could do with socially distant visits and telemedicine, so I didn’t have to be on my feet as much as I might have been another year.

My first really wild rotation is going to be next month when I’m in the emergency room. That will be the true test of how things have changed and whether I can still feel okay over the next couple of months as I do more intense hospital-based rotations.

Fighting Back Against Self-Doubt

There were definitely times during this process when I started to spiral into the thinking that I must be making my symptoms up. But then when I felt physical pain, I remembered, no, this can’t possibly be my brain, because when I take medicine, it helps.

Navigating a diagnosis journey is definitely a ripe area for self-doubt.

There’s a saying they teach us in the fourth year of medical school: the patient knows themselves best. And without my personal experience of getting diagnosed with non-radiographic axial spondyloarthritis, I don’t know that I would have believed as fully in that concept as I do now. But now I understand that we as doctors translate test results and what someone reports as their symptoms into a diagnosis and treatment. What we’re not there to do is tell someone what they’re feeling.

That understanding frames my outlook as I enter into medicine. I hope it makes me a better physician, one who really listens. Because I really just needed one person to do that for me.

My Advice for Others Living with Non-Radiographic Axial Spondyloarthritis

Advocate for yourself

If one physician isn’t listening to you, or doesn’t believe you, find one who does. I think a lot of times people feel they have to keep seeing the same doctor or they feel like they’ll make their doctor mad. As someone who’s been on both sides, I think you have the right to say what’s helpful and what’s not.

Use Google for good

As a future physician, I know doctors don’t tend to like when their patients over-Google things before they come to their visit. But if you need the vocabulary to explain your symptoms to your physician, I think the internet can be really helpful to figure that out. If you are able to find stories about patients that sound similar to yours, and then you can read through what they’re experiencing, and you may find the words to express to your physician what you’re feeling.

Plug in to a community

Ankylosing spondylitis and non-radiographic axial spondyloarthritis are hard to explain to other people sometimes. It’s key to find others who talk about flare-ups the same way you do and know that someone else gets it — that what you’re going through is real.

 If I Could Say One Thing to My Newly Diagnosed Self …

Don’t worry so much about what anyone else is thinking of you as you go through this process.  Advocate for yourself from the get-go. It took me a long time to come to the conclusion that really pushing for what I needed was okay. There were times when I knew what I was being told wasn’t helpful or even incorrect, but I didn’t address it in the moment. I’d be polite, and go home and stew about it later, or tell myself I’d speak up the next time.

But now I think back to that first ER visit, and wish I had said, “That’s not where the ovaries are. My pain is somewhere else. I don’t want these ultrasounds. I want you to go write me a CT order because that is what I need.” Even though it wouldn’t have shown anything, it would have been a step in the right direction. Because the delays were not worth it.  I went through so much suffering because people kept grasping at straws that I knew weren’t right. The fact that I had a hunch from the beginning that my problem was rheumatological, possibly autoimmune, that it was some kind of spondyloarthritis, and the fact that I was right is very validating in hindsight.

But it doesn’t make up for the year of not knowing.

Track Your AxSpA Symptoms with ArthritisPower

Join CreakyJoints’ patient-centered research registry and track symptoms like fatigue and pain. Learn more and sign up here.

This educational resource was made possible with support from UCB, a global biopharmaceutical company focused on neurology and immunology.