A.S. Face 0765: Chuck Steepleton

Face 765

My name is Chuck Steepleton and I live in Medina OH.  I am 32 years old and have been dealing with back issues since my senior year of high school.   However I always blamed the pain on previous injuries from playing football and competing in power lifting.  During my 20”s I would have flare ups every couple of months but I was able to fight through the pain.  Then about two years ago I started getting flare ups every week and the pain would get so bad I literally would have a tear running down my cheek as I was trying to work at my desk.   I started off by going to my family Dr and he could not find anything wrong.  Finally after weeks of having to go to either the ER or my family Dr I was sent to a orthopedic surgeon.  After looking at my x-rays and blood test he called and let me know that I had Ankylosing Spondylities.   Even though it was scary finding out I had been diagnosed with a condition that had no cure it was still such a relief to finally know what was wrong with me after months of dealing with the pain.

I was sent to a Rheumatologist who started me on NSAI’S that did not help at all so he added extended release morphine.  I took it for a few days but then stopped as I did not like how it made me feel.  I continued to take the NSAI’s along with a pain pill as needed.  After a few months went by, one night at my house I had a GI bleed and “bleed out of both ends if you know what I mean”  So as you can imagine I was rushed to the ER and had to have 4 blood transfusions to replace the amount of blood that I lost.  The NSAI’S had eaten away the lining of my stomach and esophagus.

So needless to say I am never allowed to take a NSAI again.   Over the past year I have tried Remicade, Embral and Norotton.   I had bad side effects to both the Remicade and Embral and the Norotton did not work.  Without being able to take NSAI’s and having bad side effects to the TNF blockers I am pretty much limited to pain pills.

All of that being said I’m pretty frustrated but after finding this site it makes me feel better that I’m not alone in dealing with this horrible disease.

I had to take a medical leave from work due to the fatigue which to me is the worst part about AS.  I can handle the pain but the fatigue has progressed so bad I have been sleeping 16 hours a day.  I have been working 10 to 12 hour days in management  for the past 10 years so as you can imagine going from that to now sleeping my life away I can’t stand it! I am scheduled to see a Neurologist about possibly giving me something for the fatigue and I am just hoping it works so I can get back to work!

Ohio, United States of America

Thanks for listening!


4 Responses to “A.S. Face 0765: Chuck Steepleton”

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

  2. Hi Chuck….not sure how to say this but it was nice hearing your story and to know there are others like us who understand what we go through and how it makes us feel. I have not yet to find something that works for me and I am 40 and been dealing with AS since I was 23…. I wish you well and prayers your way. I have Faith and I believe there is remedy for each one of us to live in comfort…. Take care and God bless….thanx for sharing….

    Rosealie

  3. Hi Chuck, I hope you are able to find some relief soon. I live in Mentor and see Dr. Matthew Bunyard at the Cleveland Clinic downtown. So in case you aren’t getting the help you need, he’s been a great doctor. He’s my 4th doctor in 10 years. It’s not only hard to find medicine that works for us, but also a doctor who listens. Anyway, it turned out that I have Fibromyalgia along with AS, so as soon as I started Lyrica for that I felt a lot better. Take care!

    Suzanne England

  4. Hello Chuck, The only thing I found that works for fatigue is Adderall. You can build a tolerance to it so I would take it only on my worse days. Also, eliminating gluten and dairy helped tremendously. Best of luck!

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