I am 33 years old. I was finally diagnosed with AS at 30.
I had low back pain and stiffness since I was about 9 years old. I didn’t even play gym all through middle school and high school. I was waddling around like a duck by time I was in 6th grade! I went to so many doctors, had a million tests, and of course they never found a thing. I felt like doctors just thought I was overweight and lazy! I gave up on doctors! I learned to accept who I was and how I was. It was all I ever knew. I was never active! I took some Motrin and went on with life.
It wasn’t until I was about 24 when I decided I wanted children that I thought I should get my back checked again. I would have flare ups every couple of months that would last for a couple days. I knew being pregnant would be a struggle. I went to an orthopedic doctor and got xrays and an MRI. He told me I had a back of a 60 year old and I have Degenerative Disc Disease.
My first pregnancy was rough! My second pregnancy was rough but not as bad! As I look back now it’s because during the second pregnancy I couldn’t sit around because I already had a 2 year old to care for! I didn’t realize how much activity actually helped since I never did anything active!
After my second child was born I started eating healthy and lost about 80 pounds. It was the first time I my life I had NO pain! I was also so excited that I could move that I started running! I felt amazing. I still had flare-ups once and a while. I thought how could this be?? What’s wrong we me?? I went to my primary doctor and had x-rays right away. It was only the second time I was there as an adult because I would avoid doctors. He called before I even got home from the x-ray and say I have Ankylosing Spondylitis. I had fusion at L4-L5. I was relieved to have a diagnosis and know that I wasn’t going crazy all these years! I went to a rheumatologist and she wanted me to take muscle relaxers every night and Enbrel. I said no. I was okay exercising and eating healthy to manage the pain. I ended up running a half marathon. I trained for another half marathon but a week before hip pain started and stopped me in my tracks. Ugh.. that was over a year ago and it’s been downhill from there. Every time I try walking and any exercising the pain gets too bad. I have lots of tailbone, hip, thigh, and low back pain. I felt like I hurt myself from training but it was AS causing erosion and inflammation in my SI joints. I gave in and tried Enbrel. My rheumy really wanted me on it to help stop the progression. I got very depressed and gain A LOT of weight. Then my arms and hands started getting numb and tingling. So I had to stop Enbrel. Now my neck is starting to ache. I feel like I am falling apart. It’s an exhausting disease.
I am thankful for a wonderful husband to help me through my flare-ups. To this day he never complains and listens to me complain. My family has been supportive as well. I do hope that never changes. I know having AS can be hard for our spouses and children.
I look back at all that I experienced and realized the only time I felt no pain was when I was losing weight. I ate a diet very similar to a low starch diet. I want to try this again but it’s hard to get started again.
One thing I have learned is to stay positive and appreciate what you CAN do. When the pain starts we should find something pleasurable to do or think about to distract us. I know that is extremely difficult when the pain is unbearable. But this is our life and we deserve to enjoy it!!!
Stay Strong my AS friends!
Pennsylvania, United States of America