Finally had my rheumatologist appointment today. Got the official diagnoses of Ankylosing Spondylitis. No big surprise, but I supposed it's nice to get a dx in some ways. No, ankylosing spondylitis (A.S.) is not the name of a dinosaur. "Ankylosing" means stiff or rigid. "Spodylitis" means inflammation of the spine. So ankylosing spondylitis is a chronic arthritic disease that causes the joints and ligaments along the spine to become inflamed. If left untreated, the spine can completely fuse, causing the person to lose mobility (hence, the "Ankylosing" part of it). A.S. is most common in men in their 20s. The cause is not quite known, but it appears to be genetics (HLA-B27 gene) combined with a trigger event (probably some sort of gut infection). Most people with A.S. have HLA-B27, but only about 10% of people with HLA-B27 have A.S. So the environmental trigger factor is a large role. Their is no cure for A.S., but it can be treated into remission. Exercise, NSAIDs, DMARDs, and anti-TNF meds seem to be all there is at this point. The exercise is important to keep the joints mobile. Move it or lose it. Swimming is best for obvious reasons, and running is often frowned upon because of the jarring (but for the record my doc said that running is okay if it doesn't hurt). NSAIDs treat the symptoms by killing the inflammation, but does not stop progression of the disease. They also tend to tear apart the stomach and fry the liver if taken for a long time. DMARDs (Disease-modifying anti-rheumatic drugs) can slow down disease progression, but haven't been shown to be terribly effective with A.S. Kind of a hand-me-down from big brother rheumatoid arthritis. Anti-TNFs (tumor necrosis factor, biologics) suppress the part of the immune system that is attacking the body. Biologics can repress or completely halt the disease, and seem to be the most promising for A.S. However, they also increase the chance of infection, and perhaps even some types of cancer. Diet has also helped a small percentage of people deal with A.S. to varying degrees. Low-starch and No-starch diets are definitely on the fringe of the treatment, mostly (IMO) because there is no money for doing non-drug research, plus pharmaceuticals can't make any money if people just stop eating bread. But the diet has a small but fanatical cult-like following among lay-people. In any case, it is proven that some foods cause inflammation, and some foods reduce it, so it is a safe bet to pursue that kind of diet just for general health and to help things along. Anyway, this is long, but it's as much for my therapeutic benefit as for anything. My symptoms aren't too terribly severe on the grand scale. Judging by x-rays and flexibility tests, I have suffered no joint damage or no beginnings to fusion either. This is good. Since A.S. isn't terribly well-known, most people can go over a decade without getting it diagnosed, and by that time they may have already started to fuse (once you fuse, you can't go back). In my case, I think my hyper-sensitivity to what is going on in my body due to being a runner helped get me into a series of doctors and start asking the right questions and getting the right tests. I can track my A.S. timeline back to June of 2005, so it's been going on for three years at the longest, which is pretty quick for a dx. And it turns out that my clusters of "running injuries" may not be entirely from running, and are better explained as A.S. flares. It also turns out that A.S. often affects muscles and tendons near insertion points, so my plantar fasciits and hamstring tendinitis would also be common A.S. symptoms. Of course, running didn't help most of these things either. And A.S. also commonly causes "sausage toe", which is what it sounds like, and is what I have going on with my feet (currently preventing me from running). Timeline: - 1994 - June 2005: No injuries whatsoever. Nothing, nada. No back pain.
- June 2005 - November 2005: SI pain, lower back pain, patellofemoral pain (runners knee). Ran through most of it, then took a couple months off after St. George.
- December 2005 - February 2006: perfectly healthy, resumed running
- Feb/March 2006 - August 2006: SI pain, lower back pain, patellofemoral pain (other knee), groin strain, plantar fasciitis. No running for 5 months.
- September 2006 - December 2007: pain-free, blissful running
- January 2008 - June 2008 (ongoing): hamstring tendinitis, SI pain, sore/stiff lower back, stiff mid-back, neck pain, swollen toes, swollen forefoot.
So it's been alternating healthy - flare - healthy - flare. I am now in my third flare, by my count. This is definitely the longest, although I don't know that it is more severe than what I went through in 2006. So the A.S. may be ramping up each (bad thing), but I am not sure. It would sure be nice if I left this flare and had another 15 months of quiet. My rheumie thought it would be best to start with a prescription NSAID to wick out the inflammation. Everyone's version of A.S. if a little bit different. If mine follows the pattern of flare - healthy - flare, then I can probably get by with taking NSAIDs as needed. However, if things don't ever get better, and it seems to be progressing, then he will want me do go on an anti-TNF, such as Remicade or Embrel. I'd rather not do this, as it is very expensive (~$20,000/year). With insurance it is something like $100-$200/month, depending on the drug. So now I am taking diclofenac. Ibuprofen is quite effective on me, so hopefully this will be too, and shrink my foot down to a normal size. My next appt is in 3 months, so until then it will just be the NSAID (as needed), exercise, and a healthy diet. Will I run competitively again? Maybe. If I can, I probably will, but if I can't life will go on. I know I can be happy and fulfilled without running, and it is not my identity, but I do enjoy it, so I would obviously like to be able to at least go out and run 6 miles pain-free with myself or with my friends. But this whole ordeal has served to remind me that my hope is not in the present with this broken body, but my hope lies in God and in His promise of a future and an eternal life. 19"Do not store up for yourselves treasures on earth, where moth and rust destroy, and where thieves break in and steal. 20But
store up for yourselves treasures in heaven, where moth and rust do not
destroy, and where thieves do not break in and steal. 21For where your treasure is, there your heart will be also. -Matt 6:19-21 And the great hymn, "Be Still My Soul": Be still, my soul: the Lord is on thy side. Bear patiently the cross of grief or pain. Leave to thy God to order and provide; In eve - ry change, He faithful will remain. Be still, my soul: thy best, thy heavenly Friend Through thor - ny ways leads to a joyful end.
Be still, my soul: your God doth undertake To guide the future, as He has the past. Thy hope, thy confidence let nothing shake; All now mysterious shall be bright at last. Be still, my soul: the waves and winds shall know His voice Who ruled them while He dwelt below.
Be still, my soul: the hour is hastening on When we shall be forever with the Lord. When disappointment, grief and fear are gone, Sorrow forgot, love's purest joys restored. Be still, my soul: when change and tears are past All safe and blessed we shall meet at last. | 