Final words of encouragement for anyone with an AS diagnosis

When I was diagnosed with ankylosing spondylitis (AS) in December 2019, I frequently felt anxious, miserable, and utterly exhausted about my future. But if I could go back and tap myself (gently) on the shoulder at that difficult time, I’d have some encouraging thoughts to share. If anyone reading this column is in a similar cave of darkness because of AS, I hope that a bit of positivity will help to balance out the challenges.

“Psst,” I’d whisper in the ear of my younger, pain-riddled self. “Things can actually improve, believe it or not. Just because you feel horrible now doesn’t mean it’ll always be like this. I promise you’ll enjoy your life again, just don’t give up.”

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Enjoying activities that AS made me quit

For years, I was scared of bike riding, running, vacuuming, sitting, sleeping, carrying things, mopping, and doing the dishes. Even hugs made me nervous, because any kind of twisting or spine-flexing motion would usually be painful or cause extra discomfort in my sacroiliac joints or thoracic spine that night.

But lately, despite living with AS, I’ve been feeling surprisingly fantastic. In fact, I’ve been doing activities at age 41 that I never thought I’d be able to enjoy again.

Five years ago, I had to entirely stop any gym exercises using weights, because even a tiny, 2-pound dumbbell would turn my shoulder blades and spine into a raging inferno of inflammation. Attempting deadlifts or lunges would leave me in tears the following day. But yesterday, I left the gym grinning happily after sweating through an exercise routine with decent weights, and I haven’t felt a scrap of extra stiffness.

I started a new office job this month, which is incredibly exciting. After years of thinking I couldn’t rely on my health to stay stable, I’ve gone more than a year now without a single flare-up of my symptoms. I consistently have daily energy, get enough sleep, and feel strong and clear-headed instead of foggy-brained and constantly fatigued.

It seems amazing that it’s possible to feel this “normal.” I feel as I did before the onset of my AS symptoms.

What helped to ease my AS symptoms

I’m about to share something that would’ve made my eyes roll if someone had told me it five years ago. As hard as it might be to hear, having a positive attitude and persevering are the most important things I’ve done to manage my AS.

With many autoimmune diseases like AS, it’s common to feel like we’ve reached a dead end. We’re told that we’re imagining our symptoms. It’s infuriating to hit a brick wall, but please never give up on yourself, and keep advocating for yourself and your health.

If you feel worn down by life and dealing with this disease, take a break. Put an activity or an idea on hold. I never thought I’d be able to ride a bike again without my back burning in agony. But here we are, a few years later, and I can regularly enjoy the activity with my husband and kids, flying through the forest with my legs pumping and my back completely free of pain.

What works best for me is a holistic approach from several angles without relying on a single magic bullet. There’s a huge range of activities, therapies, and medications available to people with AS. I’ve learned that if I give up after a therapy fails (and they can) and assume that other options will fail, too, I might miss the one thing that helps.

The biggest impact on reducing my symptoms came from the no-starch diet for AS. I’ll be the first to admit that I was skeptical that diet and gut health would decrease my pain levels, but giving up foods like cake and pizza has been 1,000% worth it. I plan to stick to the no-starch diet for the rest of my life, as long as it helps my pain and stiffness so that I feel almost “normal” again.

Farewell

It’s my time to say farewell to this column, because I’m ready to enjoy life with low disease activity to the fullest. I’m not sharing this final story to gloat or upset anyone regarding their own situation or personal AS struggles. I simply want the world to know that for some people, it’s possible to feel good again after an ankylosing spondylitis diagnosis. I’d like there to be more positive stories in this world, and I sincerely hope yours can be one of them, too.

Thanks for reading.

Note: Ankylosing Spondylitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Ankylosing Spondylitis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ankylosing spondylitis.