A.S. Face 0608: John


Hi.My name is John.I am 53, and i am from Ontario,Canada.
My first symptoms of AS started about 25 yrs ago.I had a little pain in my right butt cheek that would come and go,or alternate to the other butt cheek.I could usually walk off the pain,but a few days later it would return.I tried shoe inserts,different shoes but it didn”t help the pain.Not long after, my lower back started to really bother me.The pain started out gradually and got worse,and worse as time went on.I just shrugged it off to getting older, or cement floors from my workplace.
It wasen”t until i woke up one morning that i had a sore stiff neck on my right side did i really start to wonder what might be wrong.I tried different mattress,pillows,heating pads,ointments,back brace, NSAIDS, exercises…but nothing seemed to take away the pain or stiffness.
Being one to not go to doctors often (typical guy)i just kept going and dealt with my neck and lower back pain the best i could.
Everyone at work started asking me what was wrong with my neck,whats wrong with your back,why do you walk like a penguin?
Finally i started losing weight pretty bad.I was losing almost 5 pounds a week.This scared me and i went to see the doctor.My GP didn’t really know what was wrong with me, and sent me to a Internist.The internist evaluated me and said she thought it was probably AS,and made an appointment for me to see a Rheumatologist.My rheumatologist,did some blood test and some xrays,and seen lower back and neck fusion on the xrays and told me i had Ankylosing Spondylitis.I had never heard of this disease,and wondered what it was.She explained it all to me and said she would work with me ,and she could help ease my pain.,
First i tried NSAIDS then Sullfazaline,then Enbrel,then Humira,and now i am on Simponi which is really helping a lot.
I couldn”t work anymore because of the pain,fatigue and stiffness.I went on disability in 2008, after 32 yrs as a Lead Printing Press operator.
I am now totally fused in the neck.I can only turn my head left or right about a centimeter each way.My lower back is also fused and i can only walk about a kilometer before excruciating pain starts.I dont sleep well either.I had some great plans for my retirement,but now it seems to be lost.My worst fear is to become confined to a wheel chair.
I belong to a GREAT Ankylosing Spondylits & Rheumatoid Arthrits web site at http://www.asraunited.proboards.com/
I invite you all to drop by and join us so we can learn from each other,and make new friends too.I am sure you will enjoy the site.
Ontario Canada

10 Responses to “A.S. Face 0608: John”

  1. Well done John glad to see you here at last hope your doing ok with your sad loss my friend .

  2. Thanks for providing that link!

  3. Dear John.
    Thank you so much for sharing your story with us! I am so happy to finally see you here with us.
    Sincerely Cookie

  4. John,

    Thanks so much for sharing your story. Keep up the good attitude and keep moving as much as you can !!

  5. Thank you John for sharing your story with us. I am 53 also but only diagnosed a year ago. My story is much like yours, I have had pain for 30+ years but shrugged it off ( typical guy thing ). Then about 5 years ago the pain moved from my lower back to my neck and between my shoulder blades and it was excrutiating and debilitating. 4 years of searching and no less than 8 different Dr’s and miss diagnosis until I saw a Rhumy who knew something about AS. Fortunately I do not have the sever fusing that you have, possibly because I have been very physically active all of my life working in construction and lifting weights all of my adult life. My 34 year career as a tile setter and stone mason is over and I have accepted that and recently started the SS disability claim. The pain is just too bad when, after, I work or workout so I have had to change my lifestyle dramatically. I did recently start a new treatment with a drug that treats auto immune disorders without suppressing the immune system. It,s called LDN, Low Dose Naltrexone. No bad side effects and it seems to be making a difference, a little better each day. Best of luck to you and yours. : )

  6. Hey Rory.Nice to read your story too.I hope you never ever get spinal fusion.It really does disable you quite bad and takes away all the things in life that we all love to do.Hope you drop by http://www.asraunited.com sometime and i get the chance to know you better.

  7. Hi John. I’m sad for you right now. I understand the loss, so many plans. Hang in there. We ALL have to just hang in there and be here for each other.

  8. John glad you finely posted your story it was worth the wait.Some how some day i have to buy you a few beers brother.Stay strong,see you around.

    Your friend and AS CRAP brother from another mother


  9. Thanks Tommy.Well i did my best ,and hope it will help others to come forth and tell their story too.I really think this great site is bringing awareness to Ankylosing Spondylitis…so happy for that!
    Catch ya later @ http://www.asraunited.org

  10. If you would please email me at Cookiehasas@aol.com with your mailing address I will be happy to send your Faces of AS wristband to you.
    Thank you so much Cookie

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