I started having severe pain in my ankles when I was 8 years old. Doctors realized that I had extremely loose ligaments called Hypermobility Syndrome. They did not think it warranted as much pain as I was in until they realized that at 8 years old I already had osteo-arthritis in my ankles. Plenty of people have loose ligaments - they're called "flexible" - but only ~1% of the population has it to my severity.
At 14 years old, I was diagnosed with Spondylolithesis, Grade 5 out of 5. My spine had slipped off and was in two pieces literally hanging on my spinal cord. I underwent a massive spinal fusion and spent 8 months in bed rest. Again, some degrees of Spondylolithesis are relatively common, but Grade 5 is found in less than 1% of the population.
At 18 years old, I blew out my left knee while standing, just standing. I tore my ACL severely and nearly destroyed my medial meniscus. When I was 25 I had it repaired, but they can't replace it even though I need it, because my ligaments are too loose.
My ankle pain has now reduced my functioning to less than 90 minutes a day total. I had an ankle fusion in 2009 because I had a broken bone in both my ankles and the arthritis was horrible. I only had the right one fused because it did not resolve any of my pain issues. I then had the screw removed to make sure it wasn't a reaction to the metal causing the pain. My back pain has continued to get worse and worse and finally my ankle doctor sent me to a back physiologist who discovered arthritis all throughout my pelvic joints and up through most of my back.
He then sent me to a rheumatologist and after a parade of testing and consulting with my other doctors has given me the diagnosis of Ankylosing Spondylitis. Another condition that only occurs in ~1% of the population! In fact, one of the reasons it took so long for them to decide I had AS is because I already have 2 other conditions that have a 1% frequency and even though it's not technically impossible for me to have 3 rare diseases it is extremely statistically unlikely!!!
** Remind me to play the lottery!**
Anyway, AS is a condition caused by an autoimmune disorder that causes the abnormal degeneration and fusing of your spine. It also has a strong correlation (especially in women) of peripheral arthritis (ankles, knees and hips). So, after nearly 20 years - they have the diagnosis!!
I finally got approved for Enbrel which is an immunosuppresant injection I'll take once a week to handicap my immune system and [hopefully] stop it from destroying my body! I'm going to the doctor today to be taught how to take it and should start today! It can take anywhere from 1-6 weeks to feel the effects and up to 3 months for the full effect.
Since steroid injections, physical therapy, and pain medications don't work on me, it is seriously my last resort. My doctor says there are 2 more medications in the same category I can try if this one doesn't work, but that's it. I know I'll probably never be pain free, but I need to be functional. I'm 27 and have spent 9 years in school trying to get my Bachelors. I have 2 semesters left to get a degree in Psychology (I had to give up nursing because of all the pain) and I don't even know if I'll ever be able to work again. Immunosuppressants carry very serious side effects, because I'll be immuno-compromised and vulnerable to everything. But at this point, I'll gladly risk it if it means I can have my life back.
I hate to put all my eggs in one basket, but that's the situation. So here's hoping this stuff works wonders and I can at least live a somewhat functional life!