Ankylosing Spondylitis and other chronic health problems.
I've been in pain since I was 13. It started with inflammation in my knees that later went to my ankles and lower back. Being that young with inflammation, I had the doctors completely stumped. Since Ankylosing Spondylitis is extremely rare I wasn't properly diagnosed until I had a severe case of Iritis/Uveitis when I was 27. I had red eyes with extreme pain. Since the redness came with pain, inflammation, and caused my eye pressure level to change (and was not just itching), the eye doctor knew it wasn't pink-eye. The eye doctor immediately suspected Ankylosing Spondylitis and had me tested for the HLA-B27 gene, which came back positive. By the time I saw the rheumatologist my lower back had completely fused and my left ankle was severely damaged. She diagnosed me with AS right away and put me on biologic medications such as remicade (didn't work) then humira (worked for 8 years). When Humira quit working I was put on enbrel (didn't work) then Cimzia (currently working).
While this was going on I was trying to live my life and work as a retail manager. Because of this job, I had to take a lot of pain pills in order to function. My arthritis and the damage to my left ankle got so severe that I eventually had to apply for disability and it was granted on my first attempt.
A few years after that, I started having digestive issues that advanced to the point that I was finally diagnosed with gastroparesis. It was most likely caused by all the pain pills and neurological damage from the arthritis. I had to stop taking pain pills and eating anything with a high amount of fat or sugar. By this time, the biologics I was taking for my arthritis caused my immune system to fundamentally change to the point where I became allergic to eggs, dairy, wheat, all but three types of trees, grasses, weeds, both types of mold, dust mites, etc. But the tradeoff was worth it because without the biologics I would be confined to a wheelchair, possibly blind, or maybe even dead from organ failure.
My arthritis is under control now but with all my chronic health problems and being on disability, I have absolutely no social life. I gave up on ever having a relationship or even having friends since I can't even eat what I want or sleep when I want anymore. I got tired of the endless rejection and being looked at like I'm garbage. I also can't make plans since I never know how well I will sleep each night.
If I had been properly diagnosed and treated for the Ankylosing Spondylitis when I was younger I might have had a chance to have had a life of my own. Now I mainly just stay at home and only go out of the house for grocery shopping or doctors appointments.
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