Amy Millios, 44, has a condition known as non-radiographic axial spondyloarthritis (nr-axSpA) — a type of inflammatory back pain that causes pain, inflammation, and stiffness in the back and sacroiliac joints (where the spine connects with the pelvis).
It’s a mouthful to say and most people have never heard of it. Until she had it herself, Amy was among them.
From the time Amy started experiencing symptoms, she says it took more than 10 years to get diagnosed — but even then, her diagnosis wasn’t quite right.
Symptoms Start Piling Up
Amy had always been a healthy and active person. Living in New Hampshire, she loved hiking and being outdoors. In her twenties, she had a fulfilling job and promising career in information technology, doing IT support at a nearby college.
Then she started to experience her first hint of a struggle with chronic pain.
“My symptoms started in my neck,” she says. “I was stiff in the morning, my knees were always aching. I noticed some issues with breathing; I had less ability to take in deep breaths. But I was still able to do everything actively.”
She saw primary care doctors, had bloodwork drawn, and got a chest X-ray because of her breathing issues. Part of the problem was that the pain would come and go. Amy knew something wasn’t quite right, but it wasn’t severe enough to dramatically affect her quality of life or her ability to work or see friends.
“Then I started having periods of time when I was really, really tired,” Amy says. She saw more doctors. “They started to imply that maybe this was in my head. They told me to get more exercise.”
Over the next five years, her symptoms gradually became more pronounced. Amy recalls one health scare during a hike with a friend: “Toward the end of the hike, she suggested that we race to the top of the mountain. I agreed, but then I couldn’t get any air in and I couldn’t breathe. I wasn’t wheezing, though; it didn’t feel like it was asthma.” Her doctor, she recalled, never did a lung function test.
At one point, her bloodwork did reveal that she was deficient in vitamin D. “But even after I took supplements and my levels went back to normal, it didn’t make any difference.”
A Turn for the Worse at Work
Amy’s job in IT support was fairly physical: “lots of bending, crawling around, climbing ladders,” she says. “I would have to hustle to get to classrooms to fix things.”
By the time Amy was in her mid-thirties, her health began to deteriorate more quickly.
“I started to feel profoundly tired in my bones,” she says. “My hips started to bother me. I was waking up in the middle of the night and couldn’t fall back asleep. I’d wake up stiff in the morning and it took my forever to feel OK; some days I’d feel stiff all day.”
Understandably, she started to need to take more time off work. Thankfully, she says she had a good supervisor who let her call in sick and use vacation days when she wasn’t feeling well.
Amy recalls spending weekends in full recovery mode. “I would sleep all weekend long, every weekend.”
But then, her supervisor at work changed, and she says her workplace environment became less supportive of her need for time off, especially at the last minute. Amy recalls a meeting with human resources where her supervisor and manager expressed concern that she was depressed. “They wanted me to go for counseling. There was an implication that unless I shaped up, my employment would be in jeopardy.”
At this point, Amy felt angry about the lack of answers to her symptoms. “I knew that it wasn’t just a vitamin D deficiency and I needed real answers,” she says. “I knew that I was not OK and that my job was on the line.”
A friend recommended that she see a rheumatologist nearby. “The idea of even going to a rheumatologist had not yet been on my radar.”
The Initial Diagnosis
At her very first appointment, Amy knew this doctor was different from others she’d seen. “It took two hours. It was the longest appointment I’d ever had,” she says. The doctor didn’t sit in front of a computer. She took notes on a notepad as she asked about Amy’s medical history and current issues.
The first thing she did was ask about Amy’s symptoms. “I told her I had a stiff neck, that it was hard to turn it,” Amy says. “Same with my lower back. I was waking up in the night in pain and couldn’t go back to sleep. There was a dull grinding feeling in my hips. My Achilles tendons were giving me problems. I was wearing shoes without backs because my feet hurt so much.”
The doctor proceeded to do a thorough physical exam — “from the top of my head down to my toes.” She tested Amy’s chest expansion and had her bend forward. She ordered more bloodwork, “but before it even came back, she said, ‘I know what you have.’”
That rheumatologist promptly diagnosed Amy with ankylosing spondylitis (AS). The kicker: The physician was able to recognize the symptoms easily because she had AS herself.
The AS diagnosis connected a lot of random dots for Amy. Back pain at night is a red-flag symptom of inflammatory back pain. Pain in the Achilles tendons is a symptom of enthesitis (inflammation of the entheses, which is where tendons and ligaments attach to bones), which is a hallmark symptom of AS. And all the trouble breathing was likely due to costochondritis, or inflammation in the rib cage.
“She knew what was going on because she had AS too,” Amy says. “I couldn’t have gone to a better rheumatologist if I had tried.”
However, it turned out the diagnosis wasn’t exactly accurate — and the distinction would come to matter.
Ankylosing spondylitis (AS) and non-radiographic axial spondyloarthritis are both forms of axial spondyloarthritis (axSpA), inflammatory arthritis that affects the spine (among other joints). AS is a form of the condition in which there is “radiographic damage”— or joint damage that is visible on X-rays. Non-radiographic axial spondylitis has similar symptoms as AS, but damage to joints is not visible on X-rays.
Though Amy was initially diagnosed with AS, it turned out that she actually had non-radiographic axial spondyloarthritis. This means that X-rays would not show visible damage to the joints in her spine or hips.
This proved to be a problem not too long after Amy’s diagnosis, when her original rheumatologist retired and her new doctors weren’t convinced that she actually had nr-axSpA.
There are still many doctors, Amy says, who are “woefully uneducated about the subtleties of this diagnosis. I had to do a lot of fighting to convince them of what I was going through.”
The Rocky Path Forward
Amy’s first rheumatologist was floored that she was still working, based on the severity of her symptoms. The doctor put her on medical leave right away. “She was surprised that I had toughed it out as long as I had.”
That initial medical leave turned into short-term disability — “and then it very gradually became that I didn’t have a job.” Amy was no longer able to work in her IT support role. Though she did manage to attend grad school and get a master’s degree (in liberal studies with a concentration in writing), she hasn’t been able to work full-time since getting diagnosed eight years ago.
“I had no clue that I would be out of work this long,” she says. “It’s been a real wake-up call to me. I want to go back to work but I am terrified because of my fatigue levels. There’s so much unpredictability.”
Though Amy started treating her condition right away — and has experienced her fair share of trial-and-error among many different medications — she doesn’t consider it well-controlled today.
She started with prescription non-steroidal anti-inflammatory drugs (NSAIDs), which are recommended as “first-line” treatment for axSpA. They didn’t help. When NSAIDs don’t adequately alleviate symptoms, patients are typically recommended medications called biologics. These targeted drugs work on specific immune system pathways to reduce inflammation.
Ove the years, Amy tried a few different biologics. She has struggled both with finding a medication that would work (and keep working) on her symptoms — as well as affording it. She faced financial struggles when she could no longer afford her COBRA payments for her private health insurance (this was in the pre-Obamacare days). She’s had to deal with the red tape of applying for patient assistance programs that help cover medication costs.
Amy finally started a different biologic medication last year that seemed to really help alleviate her symptoms. She’s currently fighting for access to keep taking it.
Living with an Invisible Illness
As Amy struggles to try to go back to work and find the right mix of medications that can keep her feeling OK, she’s also adjusting to the challenges of life with a chronic — and poorly understood — condition. “I’m not depressed,” she says. “But I am melancholy — and I’m terrified that I’ll always feel this way.”
“Non-radiographic axSpA has a lot of invisibility around it,” she continues. “I’m not in a wheelchair, though I do have a handicap placard on my car.”
Her relationships with friends and family have changed.
“I’ve lost a number of friends,” Amy says. “Some got sick of the fact that I was always sick and turning down invitations to hang out. There was another set that just gradually went away. When I was diagnosed I was sort of just ‘snatched out of this world.’”
Her family, she says, doesn’t get it. “They have no clue how sick I’ve really been over these last eight years.”
Dating is another tough topic. “How would I even go about dating?” Amy muses. “I have a chronic illness and I’m on disability and unemployed. It’s not exactly a list of the most desirable traits in a partner.”
That said, having nr-axSpA has helped Amy appreciate those who have stuck by her. “You learn who is a true friend and who isn’t. For the friends who stay, you try to hold on to them with everything you’ve got.”
She’s met some new friends along her patient journey, some of whom she feels closer to than people she’s known for much longer. “They can see all of who I am now and they’re not comparing me to who I was before I got sick,” Amy says.
Tips for Living with Non-Radiographic Axial Spondyloarthritis
Amy is starting to find her voice as a patient advocate and wants to help other people figure out what’s causing their symptoms and get diagnosed and treated.
She even did a project for her master’s degree that explored women’s experiences with axSpA; she interviewed different women about their patient journeys. “It’s astounding that their experiences getting diagnosed mirror each other’s and my own,” she says, noting that there are differences in the symptoms men and women with axSpA face and that women’s symptoms are often dismissed or misdiagnosed. “I want to tell the stories of women with AS.”
Here are some of Amy’s tips for living with nr-axSpA that she has picked up along her journey:
Find a doctor you trust
It took Amy a while to find that initial rheumatologist who took the time to listen to all of her symptoms and put the puzzle pieces together. It made all the difference in feeling validated and supported, even many years later.
“I got the immediate impression that she would not only care about me, but that she would give me good care,” Amy says.
Don’t assume your doctor knows everything
After seeing many different types of providers along the way, Amy says she’s learned more about how much training physicians — especially primary care ones — get about conditions like arthritis and non-rad axSpA. “General practice physicians are not getting this information. As much as I am heartened by all the new information online that I see about AS and non-rad axSpA, there is still a lot of catching up that needs to happen.”
She encourages others to do their own research and come prepared to doctors’ visits with questions. If you’re not sure what’s causing your musculoskeletal pain, you can start by checking out our pain locator tool PainSpot.
Be candid with others about how you feel
Amy says she still struggles with letting other people know how she’s really feeling. “As most women do, I think we tend to make an effort to look our best and put our best foot forward. I did a lot of covering up so my friends and people close to me didn’t really know how bad it was,” she recalls. “I got a lot of, ‘but you don’t look sick.’ It didn’t register how much I was suffering and struggling.”
Reach out and ask for help
“I see people, especially on social media, who are at the end of their rope — from the pain, from doctors who don’t believe them,” Amy says. “These are people who are ready to give up and I really understand that. But I want them to know not to give up, that this is the time to reach out and get help wherever you can.”
“I don’t push myself anymore,” says Amy. “I say no when I need to.”
Take advantage of assistive devices
Using a shower stool has been a gamechanger for Amy. She resisted getting one for a long time and “I really saw myself as ‘old’ the day I finally got it, but I don’t even care anymore because I need it.” Other gadgets Amy finds useful:
- Trekking poles: “I try to walk regularly when the weather isn’t so icy. These take some pressure off my knees/hips so I can walk with less pain.”
- Compression sleeves: “They help with pain and swelling in my knees.”
- Food processor: “It’s hard for me to chop things.”
- Heating pad and lots of throw pillows: “I’m always changing how they’re arranged on my bed to make myself comfortable depending on what’s hurting.”
Amy says she’s found physical therapy to be very helpful. She also became trained in Reiki (a type of energy healing) so she can combine it with meditation for stress relief.
Given that it took Amy more than a decade to get diagnosed, we wanted to know: Would she do anything differently to get diagnosed sooner?
“I don’t think I could have gotten diagnosed much sooner because it just took so long for my symptoms to really take a toll and have a negative effect on me,” she says. “But I did start to know something was wrong. My advice to others would be to trust when something is not right and insist on seeing the right doctor to get to the bottom of it.”
This educational resource was made possible with support from UCB, a global biopharmaceutical company focused on neurology and immunology.
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