A belly dancer swing her hips, while an xray image is shown of her pelvis and hip joints, with lightning bolts of pain from axial spondyloarthritis coming from them.

The Arduous Road to My Diagnosis, Part 2: These Hips Don't Lie

Editorial Team: This four part series details Dyana's sixteen year journey to receive a diagnosis for non-radiographic axial spondyloarthritis. Click the following links for Part 1, Part 3, or Part 4 of her story.

Editorial Team: This four part series details Dyana's sixteen year journey to receive a diagnosis for non-radiographic axial spondyloarthritis. Click the following links for Part 1, Part 2, or Part 3 of her story.

The next stop on my journey to my non-radiographic axial spondyloarthritis diagnosis was the beginning of my hip pain, all while continuing to have chronic back pain. In the fall of 2016, I was so fed up with my back hurting all the time and being reactive to my pain by getting massages, physical therapy for electronic stimulation, chiropractic, and acupuncture. I thought I would take the proactive approach by exercising, so I signed up for a gym membership.

Then my hip pain started

Three weeks into my fitness journey, my right hip started to hurt. At the time, I thought it was a tight hip flexor. I kept exercising, which did great things for my back. My posture was improving, it didn’t hurt to breathe anymore, and I was seeing muscle definition. I did, however, overdo it on the recumbent bike by biking as fast I could in a span of fifteen minutes to see how far I could go, which I do not recommend doing.

By March 2017, I could barely walk, so I saw a hip specialist for a consult. My MRI showed that I had a labrum tear, mild developmental hip dysplasia, and evidence of femoroacetabular impingement (FAI). Two weeks later, I had my first hip arthroscopy on April 4, 2017.

Then I needed surgery

This involved a labrum debridement and shaving bone off my femur and acetabulum of my hip joint to repair the FAI. The surgery went well and for the first two weeks, I was healing as a normal patient would and was doing everything that my hip surgeon had asked of me.

Two weeks into my post-operative recovery period, my body had what we called a “heightened inflammatory response,” which was just a fancy phrase for me having the worst pain in my life. I ended up being on crutches a month longer than most patients; what was supposed to be three months recovery time off work turned into four months.

Then another surgery

Eight months of diligent physical therapy on my post-op hip yielded no decrease in my pain level despite trying oral steroids instead of NSAIDs, as well as a steroid injection into my hip joint. By this point, I was taking more pain meds for my hip than I ever had for my back pain. My range of motion in my hip was decreasing and there was residual impingement on exam. I was desperate to see if a revision surgery would help me have less pain.

I had my second right hip arthroscopy in December 2017. That surgery involved another labrum debridement (as I had torn the labrum again), removed the scar tissue in the joint, and a partial synovectomy to remove the inflamed synovial membrane of the hip joint. I was hopeful that it would help my overall pain. My range of motion was better after the second surgery, thanks to continued physical therapy as we hoped for things to get better.

I was on the hunt

After that second surgery, my hip doctor felt there was some underlying issue going on with me, as I wasn’t responding as well as the normal post-op patient; what that underlying cause was, he did not know. I told him that I long had the feeling there was this unknown “thing” wrong with me, but I didn’t know what it was. I told him of the first rheumatologist consult back in 2014 resulted in them ruling out AS, so we started to come up with a game plan. The spring of 2018 marked the beginning of me actively being “on the hunt” for a diagnosis.

Did you a specialist help you receive a diagnosis? Still seeking a diagnosis?

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The AxialSpondyloarthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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