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.