A.S. Face 1536: Saevar

Face 1536Face 1536a

Hi everybody my name is Saevar and here are some of the highlights of my AS story, the full story is just too long and depressing.

Ever since I can remember I have had pain and discomfort in my body, but as with many of the stories I´ve read here no  doctors could find anything wrong with me, a lot of tests but nothing they could find, when I was around nine I had to get special orthopedic shoes for the pain in my heals and feet, but “it´s just growing pains you´ll be fine” was the diagnosis. At 13 I first experienced crippling pain in my lower back during soccer practice, to the doctor I went “just a pinched nerve here is some Ibuprofen do some physical therapy you´ll be fine” but I wasn’t fine, On and off over the next few years I had a lot of pain in my hips and lower back and shoulders. I went to a lot of doctors and had a lot of tests and all kinds of x-rays, mri etc. done over the next ten years or so, but “ there is nothing we find wrong with you, here is some Ibuprofen and do some physical therapy, you´ll be fine” said the doctors J. At that point I just gave up, maybe it´s all in my head quit your whining I told myself. I ate a lot of over the counter anti-inflammatory and pain medication to the point my stomach said no more, I was always nauseous extremely tired and still in pain and frustrated, man was I frustrated but thankfully I have a very patient and understanding wife that has stood by me for 20 years now, she and my two beautiful children is what has kept me going through my darkest days, and believe you me there have been dark days, living in constant pain with no end in sight and a lot of “ I can´t find anything physically wrong with you” from a lot of doctors is as most of you know not much fun.

I am 38 now and finally 2 years ago I was referred to a rheumatologist he listened to my story drew blood and took x-rays and called me in two weeks later and said you have Ankylosing spondylitis ( hryggikt in my native language ) Anko what ?? was my response, like most people I had never heard of it but google helped J. I was just relived to get a diagnosis, It’s not just in my head my body is broken. So long story short I now get Remsima infliximab infusions every 6 weeks, and methotrexate pills once a week, painkillers, physical therapy twice a week, I try to keep active walking and swimming, as of last fall I had to cut work down to 50 %. The pain is still there, and this last year it has gotten increasingly worse in my shoulders hands and fingers, but I have so so days, bad days and a few days before my next infusion I have pure hell days, the good days are very few and far apart, but on these drugs life is tolerable. I live in Iceland so the weather definitely doesn´t help, but with the help of my loving and supportive family I take life with AS on one day at a time and each day one hour at a time.

Best regards from Iceland, Europe

Saevar


5 Responses to “A.S. Face 1536: Saevar”

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

  2. Wow — that’s quite a story. Thanks for sharing — helps us all feel not quite so alone with this horrible disease. Hope you get more relief!

  3. I have as .. I’m 27 have been diagnosed for 7 years now and I don’t have insurance it is really frustrating and extremely painful nice to hear others storys

  4. Saevar: Sorry to hear you are in so much pain. It’s the nature of the beast (A.S.). I am glad to hear that your meds give you some comfort. You can contact any of us here to vent and unburden yourself. Take good care, and kick A.S.’s butt!!!
    Stephania #445

  5. P.S. Your children are beautiful. You have a lot to live for!

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