A Long Painful Journey to Diagnosis
Last updated: May 2022
I've heard a few people say that their auto immune disease got triggered by an injury. That is exactly how mine reared its ugly head. I played soccer for sixteen years. I lived for the game. I was pretty good at it, if I do say so myself. I would at least score a goal a game. I wanted to be on the Olympic women's team.
The only injury I ever got normally were my knees and they would be fine with an ice pack and a brace normally. Then that dreadful day came, and I got slide tackled and landed directly on my right hip. That was the first time I ever went down and stayed down. I'd normally pop up, limp it off and continue playing. Not that day, that day I laid flat on my back and kicked at the ground with my good leg. Immediate sciatic nerve pain wracked my body. Of course, I couldn't let anyone EVER see me cry so I pulled myself together and eventually got up and limped around. I went back in the game and was a mess, hobbling around the field.
For the next eleven years I was in pain. Flares would destroy my body for months at a time. The longest flare I have had was eight months. When I couldn't take it anymore, I'd go to the ER and they would look at me like there is nothing wrong with you, you just want drugs. I went to doctor after doctor, and they did tests, and nothing would show. So, I gave up and just started trying to do less to avoid the pain. Until I spend a forty-eight-hour period in so much pain nothing would help; standing, sitting and laying down hurt. I even tried to lay on the ground and put my legs up on the sofa I was trying so hard to find relief. I cried all the way home in the car (I was on a mini vacation).
Then by some miracle I got a new doctor. She asked me if I was of European decent. I am 99.9% European, so I said yes. She looked at me and said, "I think you have an auto immune disease." Then everything moved so fast, it felt like. I had hope for the first time in years.
I saw a specialist, he tested me for the gene HLA-B27. Of course, I came back positive. That guy then told me I had cancer, I was like no, so I got a second opinion. My second opinion took a look at the test and MRI said, "you have Ankylosing Spondylitis." I was diagnosed February 2017. I was started on biologics that year, it was rough at first. Humira was too strong, I almost died of pneumonia. Enbrel didn't work. Then Cosentyx came along and now I'm amazing. Well, I also inject Methotrexate. Two pen doses of Cosentyx and 4 pen doses of Methotrexate keep me in remission. Flares rarely happen and if they do, they only last a couple of days.
I've never been happier, and I even thought about playing soccer again or at least trying. But then Covid hit and that was put on the back burner. Biologics have been amazing for me and although you do get sick more, I still wouldn't change it. :)
Has changing your diet helped manage your pain and flares?