A.S. Face 1424: Minionette ”Mini” Wilson
My initial symptoms of AS started when I was fifteen years old. I felt pain in my hips and limped on and off for several years. Though I had many trips to the doctor, I was often told that I pulled a muscle and given prescription ibuprofen or muscle relaxers. I believe that my symptoms were not considered because I was so young and there were no doctors in the area that were aware of the symptoms of ankylosing spondylitis. In my mid-twenties, I pretty much had a permanent limp that was much worse when it rained and when it was cold. But the pain had progressed so much in my hips and my back that I realized that I had to put my health in my own hands and find a doctor that would be willing to investigate my symptoms and give me the diagnosis that I was long overdue. At this point, there were times that I could not go to work because I was not able to hobble outside of home.
I was finally diagnosed by a rheumatologist in Atlanta, Georgia at age 27. But I was initially diagnosed with Reactive Arthritis since I had so much inflammation in my sacroiliac joints at that time. Even though I was prescribed several medications that were available at that time, my back pain was consistently disrupting my life. It had become impossible to sleep or sit comfortably even though I was on prescription pain medications and NSAIDS.
By my mid-thirties, I had moved back to my home state of North Carolina. I quickly learned that the number of rheumatologists in the area is surprisingly low. I fought through the pain while trying to find a rheumatologist that I liked and surviving on various NSAIDS. By 2006, I was having a lot of mobility issues due to my hip and back pain. I missed quite a bit of time from work and had trouble taking care of my basic responsibilities as a single mom to my teen aged daughter.
In June of 2007, I was prescribed Enbrel and my life quickly changed to be somewhat normal for the first time in my adult life. I could walk without my cane and my back pain had almost diminished. I felt really good for quite some time. But unfortunately over time, the Enbrel stopped working as well. I also tried a couple of other biologics without success.
As the biologics stopped working as well, my spine has given me so much pain as it starts to curve/fuse. I started having chronic migraines and reached the darkest chapter yet of living with ankylosing spondylitis. There is nothing worse than not being able to think straight, being in constant pain and feeling overwhelmed just from being around people, going to work or even to the store. Driving became very difficult and I had to move close to my job. While I did not fully understand the complexities of chronic migraine, I found out just how much the world does not understand or care either. It was difficult being at work when I just couldn’t make myself think. I can only compare this to maybe having a stroke and not being able to control my brain. Some of my coworkers made fun of me and treated me as if I had lost all of my common sense because my thinking was slower. It was extremely humiliating and I found myself in a new bout with depression. Fortunately I found an awesome neurologist that recommended biofeedback therapy to help me learn how to cope with the pain. It was the beginning of me learning to gain some control over chronic migraine. I have since had purchased prescription migraine glasses and get Botox to cope with the pain. At this time, I have not experienced major symptoms every day for about two months.
For at least a year, I have started having more severe back pain, knee pain, and severe pain in both feet as well as occasional hip pain. I am now limping on a consistent basis. I have had several medical appointments with several specialists. But I often feel like I am back on the same course as in the beginning of trying to figure out what is wrong and how to get a treatment plan that will help me be able to feel somewhat normal sometimes. I have been told that there were no findings on my x-rays. In the height of my pain recently, I feel like someone has grip pliers on each one of my ribs while squeezing really hard, but not hard enough to break them. It is difficult to sleep through an entire night because the pain in my spine and ribs is so severe. When I wake up in the mornings, I am extremely stooped over and my feet hurt too much for me to walk without holding on to furniture and counter-tops. Every morning, it takes me hours to stretch, somewhat straighten out my spine and battle this relentless overwhelming fatigue. The fatigue alone with ankylosing spondylitis is one of the worst parts of my days.
It is now 2016 and we finally have new promise in a new biologic medication, Cosentyx. For the first time ever, we finally have a medication more specifically designed for ankylosing spondylitis. I am looking forward to ankylosing spondylitis gaining more popularity, research and medications that help us to function.
North Carolina, United States of America