Velvet Rominger

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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

One Response to “Velvet Rominger”

  1. Dear Velvet,
    Thank you so much for sharing your story with us.
    Sincerely Cookie

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