Day 26 - In the loop.
I finally had my rheumatologist appointment today. First, let me say, Dr. Gauthier was great. She really took the time to explain everything in a way that made us not only understand, but laugh. She said that there is an amazingly high number of false positive ANA tests. Something about the technology behind the test being totally inaccurate which results in over 98% of positive ANA's being false! Further, my family history may provide me with a higher than normal ANA, resulting in a positive test when I in fact do not have any autoimmune disorder. So, she is having the University rerun my test which could take up to three weeks but it will be accurate.
Dr. Gauthier explained that she is almost certain that I do not have anything wrong with autoimmune response which means no lupus but that I do have hypermobility syndrome which means I am extra flexible. Big deal, right? Anyone who knows me knows that I'm a bendy person, even in adulthood. But, did you know, when I was a teen I danced and did gymnastics and that I was so flexible I could do both the moves pictured (yes, that is me in 9th grade in the lower picture) and I could also roll all the way through both the middle and right legged splits.
My hypermobility has never been in my arms or hands like most peoples is but is primarily in my back and hips, which is why I was never good at tumbling and instead danced through early college. It has also never caused any problems. Sure, I can pop both my hips out of their sockets (or float them) but it's never hurt - except when they pop and lock, that f-ing hurts. But for the most part, why should flexibility be bad?
Because, hypermobility syndrome combined with three pregnancies equals bad news. Essentially the prolactin released during pregnancy makes you more flexible which is great because you need to push a baby out but it is not so great if you are already flexible to begin with. What happens is that your ligaments get so loose that your joints do not bend properly, but you don't know because you've been like that your whole life. You only start to notice when it starts to do damage (like running did) or if you lose muscle mass (like when you are on bedrest).
The doctor explaining it by saying she is like the workhorse and I am the arabian thorough breed; she would work out on the farm and I would dance ballet; etc. She said, if we were to remove all muscle from out skeletons, her's would still be standing and mine would just be bones on the floor; that, without my muscles, my ligaments are not strong enough to support my body. Therefore, my joints rub together, dislocate and lock and I may not even know. This being the cause to all my joint pain over these last five years.
So, what do we do? First things first, we have to get my hip fixed. It's looking more and more like that is a tear in the cartilage and that it would need orthoscopic surgery to repair. Further, I have a long road of physical therapy ahead of me. I have to rebuild the muscles I basically no longer have, it'll be a process that will probably take over a year. I have to teach my body how to function again properly. I also can never get overweight and I have to always keep my muscle mass at high levels to balance out my lack of support from my ligaments. When I am older, my joints will stiffen (like all people's do with age) but mine will stiffen to the elasticity of a normal person before old age, I will probably never get stiff joints like a typical older person.
So, will I ever run again? Honestly, probably not. It may be over a year before my doctors will even clear me to run again and even that is no guarantee. I have to build all the muscles up again but I may never be strong enough to really run like I'd like. Dr. Gauthier explained that running is the hardest exercise on your joints and, though she won't say it's out of the question, it is not advisable, even down the road. Instead she suggested water aerobics.
After recovery is over I will probably become really active in biking instead. It will still get me outside but with much less strain on my joints, I can still race but I'll be training for much longer distances. As I said, I'll need to keep my fitness for the rest of my life or it will cause major problems so I don't have the option of just sitting around and not doing anything, unless I want to totally blow out my joints before the age of 50.
Next step, get to the orthopedic doctor on Thursday and get a plan for this freakin' hip. I may still have weeks of pain ahead of me and I know I have months of hard work but I do see a light at the end of the tunnel. Who would have though a bit of extra flexibility could lead to all this?