My name is Velvet Rominger, and I was just diagnosed with AS about 2 months ago.
I’m 43 years old, but I’ve had horrible back and hip issues since I was around 18 years old. I’ve spent my entire adult life undiagnosed, just being told by doctors to get some rest, take some pills, use ice/heat, and go to physical therapy. There were some days I would wake up unable to move without excruciating pain and had to be carried to a vehicle to get to the hospital. There were some days that I had to go to work completely hunched over because I just couldn’t straighten my back, and I was in my early 20s! It amazes me that my doctors didn’t think something was wrong.
Luckily, I’ve always been an active person, which I think has been my lifesaver. Even when it hurt, I would exercise almost every day – weight training, hiking, running, biking, something to keep my body moving, because I felt much worse if I didn’t. I’ve even managed to run 2 marathons, although I suffered after finishing each one. But I think, for me, it was about proving I could still be “normal,” even though I knew otherwise.
But then I turned 41 and my life really turned upside down. I started hurting other places. It first started with two of my fingers, which I assumed was a little arthritis, no big deal. After all, I was getting older! Then my wrists hurt horribly one day for no reason. Then my knees, my jaw, my shoulders, my Achilles tendons….then everything. I felt awful. I was so, so tired and all I wanted to do was stay in bed every morning. It was as if I had heavy dumbbells permanently attached to the ends of my arms and legs, like I had the flu all the time. Trying to exercise became a complete joke, which killed me.
Finally, I was seen my a rheumatologist, who listened to my story. Finally. I got a diagnosis. And what felt like a death sentence.
But I’m a fighter. I guess I’ve had to be to work through the pain I’ve always had. So, I have opted out of taking the Humira my doctor wants me to take and am instead trying a very different approach by simply changing my diet and continuing to exercise. Well, it hasn’t exactly been simple. It’s actually been quite hard! And I’m far from being 100% yet, but every week I’m getting better. I basically eat a very low starch, paleo diet. No cheating. Ever. At first I noticed an improvement in my energy level, but my joints and back still hurt very bad. Then around week 3 my joints started feeling a little better, and every week they improve a little more. My mood is lifting and I’m starting to have some hope again. I don’t have to massage my jaw open in the morning to be able to eat and stairs are no longer my enemy! And I’ve quickly lost the weight I gained while I was unable to exercise.
I’m not sure if this is the answer for me, but I’m going to give this way of eating at least 6 months to see how I feel. I may, at some point, need to take biologics, but for now I’m hoping to put this beast in remission through a new approach that doesn’t have scary side effects!
Thanks for listening to my story!
Montana, United States of America