Were any symptoms on Axial Spondyloarthritis surprising?
Did you experience any unexpected symptoms when you were diagnosed with AxSpa?
Are you wondering if anyone else experienced these symptoms?
Are you unsure if these symptoms are connected with AxSpa?
Share with the community below!
I was not diagnosed until 2022, after starting to suffer tendon pain in my heel. However, I had hip replacements in 2005 & 2007, and the dr's could not explain why/how my hips were "bone-on-bone" at the age of 38. I had started suffering extreme back pain in 1999, at 33. I attribute some of the lack of diagnosis to the fact that I am female, and was just told I needed to exercise more and to lose weight. (I was a police officer and did work out regularly, but that did not matter to most of the dr's I saw).
I started Humira in November 2022, and then had to graduate to infusions in July 2023. I am now on my 2nd infusion medication, which seems to be helping. The newest issue is the extreme sensitivity to light and since the end of last november, I am now having to use Restatis for the uevitis that I am suffering. Trying to get my job to recognize my issues with the lights is now becoming a challenge. 🙁Wow, that’s a lot to carry, and for such a long time. Not to mention being told to “exercise more” or lose weight, especially when you were already physically active. That's enough to be frustrated. But I’m glad the infusion you’re on now seems to be helping, even though you're dealing with uveitis and light sensitivity. Have you been able to talk with your doctor about documenting the light sensitivity and uveitis so your job can better accommodate you (like lighting adjustments or filters)? I truly hope things turn around soon! -Latoya (Team Member)
For me its the fact that I now have 30% lung capacity as my ribs are totally locked tight. But the other symptom is actually more worrying. Its the mental fear and stress of wondering how much worse is this going to get? I am VERY stooped, can't breath when I walk, and now I have started waking in the middle of the night out of fear that I can't breath. THAT is the worst of all.. The unknown. And in the back of my mind is the image of the folded man - that poor Chinese guy, who suffered such extreme symptoms that he was literally folded. Despite knowing that it was exceptional, it still plays in my mind. And the 3 consultant orthopedic surgeons in my own family tell me there's nothing to be done. So in the end - its the mental pain that is the worst.
I’m so sorry you’re carrying all of this. The emotionally toll any chronic illness brings can truly be unbearable at times. No one should have to live like that. I just want you to know that you’re not weak for that fear or for the images that stick in your mind. It’s completely human. It’s okay to say when it feels like too much. There are people here who hear you, understand you, and genuinely care about what you’re going through. So please know that your not alone and know that your circumstance doesn't take away from how strong and resilient you are. You'll be in my thoughts, Latoya (Team Member)
Pain in my colar bone. Some times it's off the chart.
Thanks for commenting! AxSpA can definitely cause pain in areas like that, along with the spine and other joints. How have you been managing the pain since your diagnosis? Have you found any treatments or strategies that help ease it a bit? -Latoya (Team Member)
I have had pain in my back and large joints most of my life but chalked it up to playing sports or being hard on my body. I wasn't diagnosed until I reached 40. I had unresolved pain that physical therapy wouldn't touch, but the main reason I went in was chest pain and problems swallowing. It felt like I had a chip stuck in my throat. Over time and from taking prednisone, I have had a hip replacement and cataract surgery, but my eyes seem to get worse. Besides dry eyes and light sensitivity, I have focus issues while driving or looking for things on a shelf. Has anyone else experienced that?
Thank you! The retinal specialist said that my cataracts were definitely from the prednisone I had been taking for two years due to my COVID long-hauler's condition. It's a different color than just a cataract that is from aging. I had to get off of the prednisone before my replacement, which was also exacerbated by the medication. However, I believe it's also a focusing issue. I'm unsure if my brain just cannot keep up with my eye movement, which is also associated with long-haulers, or if it's a condition in my eyes. Just curious if there is another auto-immune disorder that is associated with that problem or if AS can cause that.
