I was diagnosed with Ankylosing Spondylitis in 2013. Around eight months earlier is when I first started experiencing symptoms.
My hips were in pain, my shoulder blades felt like they were grinding metal on metal, and I was having more and more of a tough time playing volleyball. I was experiencing a severe increase in back spasms and a general reduction in my ability to be active.
So I started seeing a chiropractor on a regular basis. I saw an acupuncturist and had her do that as well as cupping. My muscles were in constant contraction and my hips were out of place, so I started wearing an SI belt. I began physiotherapy as well.
I was trying my hardest to get things sorted out and wound up averaging approximately 10 appointments per week, many early in the morning before I went to work.
After several months of this regimen, I knew it was something bigger. I eventually saw a rheumatologist who thought it might be a type of arthritis.
So, when I was at work one day, wearing my SI belt and limping badly, someone asked me what the doctors think that it is.
I explained that it was possible I developed some sort of arthritic condition.
My colleagues stated that I was being dramatic. They said that there was no way I had arthritis, that I was exaggerating and that I was too young. I was being a drama queen.
I can see where they were coming from.
Young girl, mid-twenties, highly active (volleyball, softball, gym) who all-of-a sudden develops joint pain and says it might be arthritis? Even I would be skeptical.
They were right. I did not have generic arthritis. I had something worse. I developed an autoimmune arthritis - a spondyloarthropy. (This is not to be confused with osteoarthritis or rheumatoid arthritis - which can be even more severe). Instead of the pain coming from bone on bone friction and experiencing pain and swelling (which is incredibly painful on its own), I was experiencing the effects of my body battling its own joints.
My own immune system is attacking my own joints - causing pain, swelling, inflammation, but also breaking down the joint matter and causing lesions and erosions. Then, my defense system kicks in and starts rebuilding that matter in the wrong places. So instead of rebuilding my joint, it builds a 'wall' in between my bones and joints - fusing them together.
A vicious cycle of inflammation and erosion, following by reinforcing defense systems where they should not be placed.
I have been fortunate with the slow progression of the disease. So far the erosion is in my SI joints, I either have herniated or degenerated discs, and my upper spine has begun to curl inward, creating a permanent hunch (that no amount of yoga can reverse - but there is no harm in trying).
There are so many civil wars in my body that it is difficult to understand what all of my systems are doing. All this internal fighting creates constant pain. Constant pain. So much so that the combination of the new disease with Crohn's Disease, severe pelvic pain, the Hereditary Angioedema that was found shortly after the AS, Hashimoto's, tachycardia, migraines, and the general fatigue, lack of energy, and ridiculous recuperation times, all took me out of the workforce (begrudgingly).
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