One thing after another…

I’m a 60-year-old female who has lived with non-radiographic axial spondyloarthritis since my late teens. It started with SI joint pain, hip bursitis and enthesopathy, IBS, and fatigue. Later, a difficult and life-threatening pregnancy/labor resulted in the stillbirth of my oldest daughter. Then came fibromyalgia, migraines, anxiety, depression, and constant joint pain (enthesopathy) rotating to feet, hip, elbows, and shoulders, as well as worsening gut pain and diarrhea so severe it was threatening to cause me to be homebound.

Surgeries, spine fusions, steroids, and more

By that point, I was fortunate to have a young PCP who recognized I was dealing with some sort of autoimmune disease and who prescribed medication (Colestipol) that got the GI symptoms under control. I also took Voltaren 75 mg for about 15 years until my current rheumatologist took me off of it for fear of kidney damage.

I’ve had multiple surgeries, four lumbar spine fusions, one cervical spine fusion, rotator cuff repair, peroneal tendon repair, and plantar fascia release in my left foot. I estimate that I've had 25-30 spine and hip steroid injections under sedation with another scheduled in a couple of weeks. I have a torn labrum in my left hip with moderate OA that I’m told will require a hip replacement.

Advice from my spine surgeon

My new spine surgeon (who is the department head at one of Texas’ premier university hospital systems) is offering to fuse my SI joints because of the extent of damage and pain from the years of untreated axSpA. By the way, even though SI joint damage may not be visible on an x-ray, it IS visible on a CT scan and can be quite shocking to providers who aren’t terribly familiar with non-radiographic axSpA.

My cervical spine is a wreck and has flared so badly in the last three days that I can hardly stand to turn my head. My spine surgeon is very concerned about it and is urging me to get routine injections to keep the flares down. I also had a terrifying bout with Sweet’s Syndrome in November 2021 which has resulted in heart valve damage and requires that I take Dapsone for the rest of my life.

Years of misdiagnosis

Because science has only recently recognized axSpA in women, I have been piecemeal-treated all these years and misdiagnosed in that time. Various doctors suspected autoimmune disease over the years but had no real answers other than to say I had fibromyalgia. My current rheumatologist finally put it all together, and because of the new protocols and diagnostic criteria, I was finally diagnosed with axSpA.

I research and read often to get a better understanding of what I’m dealing with, and I must wrestle with my anger and resentment when my symptoms, taken as the bigger picture, clearly point to a form of what has for many years been called ankylosing spondyloarthropathy. The thinking that axSpA was a “man’s disease” caused a sort of institutional bias and lack of intellectual curiosity on the part of practitioners I saw and has relegated me to permanent damage and pain.

Finding the right medication for my axial spondyloarthritis

I even had a rheumatologist 20 years ago suspect it and tested me for the HLA-B27 gene. I was negative for it, but he at least did tell me I had what was then called undifferentiated spondyloarthropathy. He prescribed Sulfasalazine, which I took for a year, and it had no effect. I quit taking it and did not go back after that. He wanted me to then start on Methotrexate, which really frightened me because of its toxicity. I wish now I had been braver and had at least given it a try.

I was started on Cimzia injections in November. I see some improvements, but do have some mild side effects, which are tolerable. I’ve been ill with a viral infection for nearly two weeks and was started on antibiotics a few days ago for a sinus infection. I was unable to take my Cimzia injection this week because of that and then my neck went into spasm.

Finding acceptance and community

I’m trying to focus on the improvements I’m seeing and realize/accept that there are always going to be days that aren’t so great, but because I’ve been sick and in pain for nearly two weeks, these depressing thoughts of “it’s just always going to be one thing or another” are hard to put aside. I’m thankful for this group of people who understand the struggle and who allow me to have this moment. Now, I’m gonna pick myself back up and adjust my attitude…

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