For me Ankylosing Spondylitis has been a slow creeping pain that over years of time has built up upon itself from around the age of 8.  Retrospectively I can see that I was treated, with the advice of family doctors, with Advil as needed and BenGay.  I was seen by several orthopedic specialist as a child and teen and was told that I suffered from repeated tendonitis caused by "long tendons" that caused excess mobility in my joints.  

The second most popular misdiagnosis was "a hairline fracture that isn't showing up on x-ray".  I have been told this at least 5 times in my life.  Based on my active lifestyle, the swollen joint, it being painful to the touch and painful to move the diagnosis seemed to fit. 

Hindsight is 20/20

With the average diagnosis time for Ankylosing Spondylitis in a woman being 18-20 years I have a very long list of things I "wrote off" that were significant clues that with the help of my doctors, research and long discussion with fellow ASers I can now see. 

Early Signs - Ages 7-16

These joints would hurt most at night and in the morning.  The pain would generally go away during the day with activity.  Also the pain would come on for a couple of weeks to a month and then go (20/20= flares).  It would happen asymmetrically so the doctors would assume injury of the joint versus an auto-immune condition. 

  • Ankles:  throbbing pain. heat,  minimal swelling
    • Dx: tendonitis, lax tendons, 
    • Rx: advil, ben-gay, physical therapy, braces
  • Shoulder:  throbbing pain, red hot pain that reduced range of motion during activty
    • Dx: tendonitis, lax tendons, extra flexibility of joint causing instablity
    • Rx: prescription of 800mg ibuprofen, ben-gay, physical therapy 
  • Knees: throbbing pain, heat swelling
    • Dx: floating patellas, extra flexibility of joints causing instability
    • Rx: advil, ben-gay, physical therapy, patella bands, patella knee braces
  • Neck: dull, throbbing pain, reduced range of motion during what I now know was a flare.
    • Dx: some sort of injury caused by horseback riding
    • Rx: advil, ben-gay, physical therapy
  • Wrist: dull, throbbing pain, swelling, painful to the touch, hot, painful to move
    • Dx: hairline fracture not showing on xray
    • Rx: advil, ben-gay, splint, wrist brace
  • I didn't like to walk...ANYWHERE, ANYTIME.  Family-lore says that I would prefer a stroller or wagon to walking well into age 5,6.  If there was an option to hitch a ride in a shopping cart, golf cart, stroller, wagon or on daddy I would ask for it.