A.S. Face 0861: Colette Barnes

Face 861

My name is Colette Barnes & I live in Tasmania, Australia & this year at the age of 56, I was diagnosed with AS. I’m HLA-B27+ & recently learned that my brother & grandfather both had AS in their 20’s which mainly affected their heels but not so much their spine.   I’ve had chronic neck pain for 10 years & spent most of that time looking for a reason. (I also experienced pain in my elbows over that period but it was my neck that worried me the most). The advice of & treatment by physiotherapists, chiropractors, an osteopath & acupuncturist & lots of massage therapy seemed to make little difference.

18 months ago I started to feel pain in my SI joints which typically was worse early morning & lessened with exercise as the day progressed. This pain increased considerably over a few months to become excruciating as my back went into spasm on a daily basis & I was unable to move & barely breathe until it passed. I sought the advice of several doctors, had three trips to the emergency department of two different hospitals (one by ambulance), but, as I was fit & otherwise healthy, no one could explain the cause of my pain & I was sent home with strong painkillers & an anti-inflammatory to spend most my days drugged & feeling nauseous.

Then, 6 months ago, after being in continuous & excruciating pain & not eating for 3 days I ended up in hospital yet again. There, 2 days after being admitted & having a CAT scan & pelvic ultrasound (both showing nothing untoward), my appendix ruptured.  Following emergency surgery I recovered quite quickly & noticed that the pain in my SI joints & neck had completely disappeared.  In fact I was totally pain free for almost four weeks!  However, eventually the pain returned making me determined to find out what its cause was why I was pain free for that period. I googled everything I could possibly google to do with joint pain & discovered this strange condition, Ankylosing Spondylitis.

I shared my suspicions with my GP who agreed to refer me to a rheumatologist & run a genetic test. Its positive result  gave me even more determination to learn more & having a life long interest in nutrition & fitness, I read everything I could find on the use of diet in the treatment of rheumatoid arthritis & particularly AS. I came across this as this beautifully crafted essay http://www.thepointmag.com/2012/essays/plea-human-food  & studied the research of Professor Alan Ebringer et al. & http://www.kickas.org/ . & learned how to keep my  inflammation to a minimal & manageable level with a no starch diet.  As my family & I were already following a low carb Paleo lifestyle, going no starch wasn’t a great leap.  Occasionally, if I slip up, I need a painkiller or NSAIDs but am pretty dedicated to avoiding pain!

My GP & Rheumatologist are completely supportive of my decision to control this condition through diet & are even impressed with the results I’ve had so far. I wish more research would be conducted into the effects of diet on AS & I’m so thankful that I’ve found relief. Thanks Cookie for creating this community for ASers that Faces is. Reading of the experiences of other sufferers is sometimes so sad, often confronting & sometimes uplifting & motivating.

Cheers, Colette


11 Responses to “A.S. Face 0861: Colette Barnes”

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

  2. Hi Colette,

    Nice to meet you

    Jane 709


  3. Thank you, Colette, for sharing your story with us.

  4. Hi Colette


  5. Welcome to the beautiful faces of ankylosing spondylitis and sharing your story!! Much love to you and God bless…You are in my prayers.

    Rosealie #770

  6. Awww thanks everyone. My goodness, some of your stories are incredibly sad. I am so fortunate to have a late onset, low grade form of AS that responds well to a no starch diet. Love to you all.

  7. It’s always uplifiting and motivating! Including your story Collette! Jeesh I remember back spasms. Before my diagnosis…My physical therapist couldn’t figure out why months of PT wouldn’t loosen things up. Why doctors, when confronted by “unexplained” severe pains that don’t heal, don’t look at AS is behond me. Do the damn HLA-B27 test…how much can it cost. School children should be tested for it.

  8. Hi Colette,
    I too experienced a remission of symptoms for several months after brain surgery. I’m wondering if the anesthetic or shock to our system may be the cause? Interesting!

  9. Hi Colette, it was great reading your story and very encouraging to hear your approach to natural treatment of AS. I read your link, A Plea for Human Food and it along with your story has helped with my resolve to reduce starch from my diet torts to treat my AS naturally. Thanks again for sharing and good luck 😉

  10. Hi Colette, Thanks for the two links. I am now inspired to look deeper into the paleo/no starch approach and have begun researching & taking some initial steps toward such diet improvements. I think it holds great promise for pain reduction. I also found some new exercises/stretches on the kickas.org site which I also tried with some success. Best of luck to you on your AS journey and thanks again!
    Bests, Tom #739

    PS- I have wanted to visit Tasmania for decades ever since I once read about it in a bicycling magazine. Hopefully someday 😉

  11. It was so nice to revisit my page & meet new commenters. Thank-you for your encouragement. I continue to improve, in fact the only relapse I’ve had since going low/no starch is when I visited Italy & ate pizza in Naples. It was the most beautiful pizza in the world but I was so unwell after…massive headache, awful spine/neck pain & serious gut issues (my gut took 6 weeks to return to normal) . Am now in America, & negotiating my way through this high starch land is hard but I’m actually enjoying the challenge.
    Cheers, Colette (face 861)

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