“We’re all chasing unicorns to find a diagnosis, a specialist, a treatment, anything that will relieve the pain.”
— Lisa S., from Virginia
I recently polled a group of people who suspect that they have Sacroiliac Joint Dysfunction (SIJD.)** One question I asked was, “What else should people know about those who suffer from SIJD?” I loved Lisa’s metaphor because it explains something I’ve been doing for more than half of my life: searching for something that doesn’t seem to exist.
They say you get what you pay for, but I’ve spent tens of thousands, (if not hundreds of thousands) trying to figure out why my right hindquarter has been on fire since the 1980’s. You’d think that would buy me a bulls-eye diagnosis and a guaranteed fix. But no. I’m in the same pain I was back then, only I’ve learned how to better manage it. It’s gotten progressively worse, but as is true for everyone, age and gravity take their toll.
Most people probably aren’t even aware that they have sacroiliac joints. I say that because when I tell people I believe one of mine is a major source of my back pain, they usually say, “Sacro-what?” I’ve learned not to offer a comprehensive tutorial on the subject. The Laura Jenkins Cliff Notes version usually suffices:
“The sacroiliac joint is where the sacrum meets the ilia (pelvic bones.) Of course where two bones meet there’s a joint, and one type of sacroiliac dysfunction happens when there’s abnormal movement in the sacroiliac joint—either too much or too little. Mine is hypermobile.”
At that point I usually change the subject and they’re happy to move on.
Much has been written about the pathology, diagnosis and treatment of SIJD, so I’m going to leave the textbook definitions to those who make their living studying and treating it (check out my resources page for a few sites that may serve as a springboard for more in-depth research.) I am, however, an expert on one thing: living with it. And so are many of you.
Approximations vary, but I’ve heard estimates of anywhere between 5% and 30% of all low back pain may be sacroiliac joint related. And when you consider that Americans spend at least $50 billion each year on low back pain, and that it’s now the number one cause of disability worldwide, you have to admit: that’s a lot of people—even if you just stick with the lowest estimate of 5%.
Despite growing awareness of the sacroiliac joint’s role in musculoskeletal stability, it doesn’t seem to be on many doctors’ radar. I’ve read countless theories as to why that is. To paraphrase popular hypotheses, it seems that somewhere in the early/mid 20th century, the collective medical mind honed in on disc problems. And as a result, lumbar discs and the nerves that accompany them became the go-to suspects in the evaluation of low back pain. Meanwhile, the sacroiliac joints got sent to their room. Cue unicorns.
But there is some good news: we seem to be coming out of the dark ages in terms of bringing SIJD back into the back pain conversation. Some have been fortunate to find a doctor who understands SI joint issues right off the bat. But in my experience, most doctors don’t even mention it, or if they do, they say not much can be done about it. This may be a wrong assumption, but it would make sense that that’s a reflection of what most were taught in medical school. If so, those thinking differently about the sacroiliac joint are, by necessity, pioneers.
Regardless of why SIJD isn’t a well- or widely-understood condition, there are a lot of people who are stranded in a never-ending state of excruciating pain, frustration and despair. They spend most (if not all) of their money and untold years of their lives working their asses off to get better. But instead they keep ending up back at square one. Over and over. Like the movie Groundhog’s Day, except much more torturous and cruel. And to make matters worse, when they get back to square one people sometimes tell them that they’re not trying hard enough. Or they tell them that they’ve been looking for help in all the wrong places—that they have the 411 on what will really make them well. And so the cycle goes.
Though I’ve spent decades searching for answers, I’ve devoted the last six months to closely researching this dreadful malady, as in, it was nearly a full time job. In addition to the hordes of practitioners I’ve seen in my own neck of the woods (Texas), I’ve traveled to two different states to see doctors, have scoured volumes of articles and periodicals, and have deliberated it all with anyone who will listen. This in no way makes me a medical expert. All it means is that I’ve researched the hell out of this to try and make informed decisions for myself. That, and I’m also a member of the herd who happens to have a particular passion for reading, writing, digging and conversing about it. Over time, I’ll probably turn these posts into an article or series of articles that I’ll pitch to various publications, in an effort to raise awareness for both patients and practitioners. But writing about this also serves another purpose: it’s really cathartic for me to get this painful odyssey out of my head and onto the page.
I’m actually having surgery on January 28, 2016. I did not make this decision casually or carelessly (I’ll get to that soon — it deserves its own post.) But regardless of my surgical outcome, I’ll be chronicling the whole experience here.
Next up, I’ll be sharing some stats from the aforementioned survey. After only three days I had 120 responses to a host of questions, and let me tell you, reading them was enlightening. And heartbreaking. And a little hilarious. I laughed out loud when one anonymous participant chose “other” under the heading: “Please select all non-surgical treatments you’ve tried” and wrote in, “Everything but Satanism.”
I totally get it.
** If you haven’t taken the survey and would like to, you can find it here.
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