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Initial Symptoms of NrAxSpa & Inconclusive Diagnostics

Tiffany Westrich-Robertson considers her initial symptoms of nonradiographical axial spondyloarthritis (NrAxSpa) and discusses the difficulties of receiving proper treatment.

Tiffany Westrich-Robertson: Well, the first symptom that I was having was fatigue, and it was unusual fatigue because I’m pretty much a high-energy person, always been that way. And this was fatigue to the point where I felt like I had to go to bed really early. And it was just odd. And then I started noticing low-grade fevers. And I thought, maybe I’m coming down with something. And then I ended up working one day, I really felt super fatigued and got home and I thought I was having a heart attack. So I went to the hospital. And it ended up being diagnosed as a severe case of costochondritis, which is inflammation of the connected tissues in your ribs. And they sent me to the doctor and never did any type of arthritis come up in the discussion. And they started testing me for heart disease, things of that nature, but didn’t have any answers.

So about 3 months passed I guess, something like that. And I woke up one morning and I had this terrible pain, almost like my foot was sprained, and I thought, did I kick myself in my sleep or something? And I couldn’t put my shoe on because my foot was sort of swollen. And again I thought, “Oh, I must have done something to it” and wrote it off. And then about 3 months after that I had a similar onset pain in my finger, in some of the joints in the top of my finger. That’s when I made the connection, “That’s the same pain that was in my foot, and the same pain that was in my chest.” And then I started to sort of log, “Well wait a minute. This is happening the same time as the fatigue and the fevers.”

So the doctors, they sort of ignored the finger and the foot. They said, “You know what, you’re very athletic. You probably hurt yourself and you don’t remember.” I thought, okay. So they kept sending me to other doctors to rule out the organs, and it was actually the lung, the pulmonary specialist, who said… Actually, I overheard him talking to his assistant. And I heard them say, “Maybe this is arthritis.” And I remember sitting there thinking, “Oh come on. This is not arthritis.” I mean because I thought arthritis was something that older people got, and I was thinking the degenerative kind. I didn’t realize there was any other type. And I thought, “There was just no way that that’s what it is.” So they recommended that I see a rheumatologist.

When I went to my first rheumatologist, I had more joint onset. So now my symptoms were fatigue, low-grade fever. I also was experiencing a loss of appetite and then kind of this general feeling like a flu-like symptom, which I guess now looking back was all the autoimmune features of it. And then the joint pain that felt a lot like a sprain or balloon bruise was now in several locations—in my hand, my wrist, my knee, my ankle, my foot—all on left side. So it was asymmetrical. The rheumatologist at the time said, “Your blood work is normal. Your imaging, your radiographics are normal. So I don’t know what is wrong with you,” and gave me fibromyalgia medicine and sent me home.

More months passed, and it mirrored to the other side. So I had about 20-plus joints, I guess, that were affected. So now we’ve added on all of these joint areas. The one thing that ended up happening before the mirroring was the lower back and in tailbone area. I remember not being able to sit down, and my friends made fun of me and they bought be a donut. It, like, showed up at a party and they’re like, “Here, sit down.” And nobody could explain that.
They were really focusing a lot on the hands, the feet, I guess your typical joints. And, again, the chest, the tailbone area, and the midsection—nobody was really concentrating on it much. A few more months passed and I started getting so severely fatigued and to the point where I was sleeping 16 hours a day. I was experiencing so much pain that it was becoming debilitating. It was getting hard to get out of bed in the morning, so that severe stiffness. And then I thought I had an ear infection.

So I went to the doctor and I said, “I’ve got a fever, I’ve been sleeping a lot, and I have a severe pain in my ear.” He looked in it and he said, “There’s nothing wrong with the ear.” He touched right here, and I literally lunged at him. I didn’t mean it, I felt a little bad after. And he said, “That’s your jaw joint.” And, again, it was my left side. So, asymmetrical. And he said that, “You’re going to a different rheumatologist.” So that’s kind of how the symptoms, I guess, to answer your question. The symptoms really were kind of that joint pain, the fatigue, the low-grade fever, the loss of appetite.

 
 
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