A.S. Face 1527: 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

3 Responses to “A.S. Face 1527: Velvet Rominger”

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

  2. Thanks for sharing your story!! I was recently diagnosed and grasping for all hope that I can. I would LOVE to follow your progress if you are going to share it anywhere (FB, etc). In so much pain I had to at least start with Methotrexate, and still exercising, but I’d love to know if changing what I eat can help someone that was also active all their life.

  3. Check out the book by Amy Myers, MD. “The Autoimmune Solution” . Great information about how your diet affects autoimmune disease.

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