Update, Jan. 2018: Hi everyone– I’ve learned a ton since I wrote this post. Please be sure to check out my other site, My Sacroiliac Joint Saga, for more!
And now, the original post:
So, let me start out by saying that I feel totally crazy writing some of this.
Most of what I write about has a good deal of scientific research to back it up. I take this very seriously, because the internet can be a such cesspool of conspiracy theory and misinformation. The last thing I would ever want to do is be the kind of blogger who adds to that.
But I don’t really have many scientific facts to back up this post with. And it’s not for lack of trying.
Since this ordeal has started, I’ve seen one orthopedist, five physical therapists, and two physiatrists (the word is confusing, but their specialty is Physical Medicine & Rehabilitation, not Psychiatry).
I’ve also spent a long time trying to find information about the sacroiliac joint online. Google searches turn up next to nothing. And searching the publicly accessible scientific databases such as the National Institutes of Health only turns up articles about people who seem to have different problems than me.
So I’m just going to write this based on my own experience.
***
This post picks up after where I left off in “How a physical therapist helped me through my lowest point, Part 8.” In that post, I talked about how I was developing chondromalacia patella in my right knee, and that it was made worse by the fact that my physical therapist told me the pain wasn’t significant and that I could try to ignore it.
After a few months, things had gone from bad to worse and I was limping almost all of the time.
And, after weeks of limping, came the first time one of my sacroiliac joints locked up.
I was walking along, just minding my own business, when I felt this strange sinking feeling in the back of my left hip. The sinking didn’t hurt, but it was followed immediately by a “catching.” And the catching did hurt.
And once whatever it was that was caught had caught, I could barely lift my leg. Like, I could barely get it off the ground high enough to put it down in front of me. Going up stairs normally, even small ones, was out of the question, because I literally could not get my left leg high enough to place it on the next step, let alone put any weight on it once it was up there.
I had been seeing a chiropractor for a while at that point, because all the exercises I’d been doing in PT had made my lower back to start to hurt.
I went in that day, and he told me right away that it was my sacroiliac joint. I’d only heard of this joint in passing before—just one more word on the diagram in my anatomy and physiology class. It hadn’t even seemed like an important enough joint for us to talk about it at all in class.
It didn’t take him much time at all to click away with his activator and get the joint to fall back into place. I was able to walk out of the office normally, although it was a day or two before I was brave enough to try using that leg normally on stairs.
***
A few weeks later, the same thing happened on the right side. I was getting ready for a quick chiropractor visit before I had to drive to class that night when I experienced the same sinking and catching feeling. I felt as though I had a stilt under one leg, although which leg felt like it had the stilt under it kept changing.
I rushed off to the chiropractor, only to have the secretary tell me he was running late. I realized I didn’t have time to wait for him and still make it to class in time, so I burst into tears in the waiting room. It was pretty embarrassing.
Luckily, he came out from the treatment room he’d been in and saw me in tears, so he fit me in.
***
This was the beginning of the absolutely crazy pattern I’ve been caught in for the past few years.
I feel crazy, because I’ve fallen into the exact kind of trap that so many people with chronic health problems fall into, and it usually isn’t productive.
I’ve come to count on one type of health professional to help me—and it’s not one that is generally well-respected by mainstream medicine. And I’m not getting the same explanation from him that I’ve gotten from all the others.
But in this case, the thing is… I didn’t really get an explanation at all from any of the others.
And I don’t feel like I was asking them anything super outlandish. Again, this is a joint you’ll find on a basic diagram of the skeletal system. Like, anatomy 101.
I wasn’t asking them to give me their opinion on specific acupuncture points, or the merits of reflexology. This joint is something they’re supposed to be able to help people with.
But it seems like most of the literature and treatments that I found in my attempts to find scientific information with have to do with a sacroiliac joint that is painful. Or inflamed. Or “unstable,” which is the term that means the ligaments that are supposed to hold it in place are too stretched out to do their job.
I couldn’t find anything about what to when the sacroiliac joint becomes stuck.
The ilium, which is the very back of the hip bone, is supposed to line up perfectly evenly with the sacrum, which is the base of your spine. In my case, assuming my chiropractor is correct, my ilium is getting stuck too far back, behind the sacrum.
All of the papers I read, after describing problems that I didn’t sound like mine, concluded with the phrase “further research is needed.” It was clear that the authors didn’t feel like their results were definitive enough to make a clear pronouncement about the sacroiliac joint, one way or another.
***
I’ve spent so much time living with this problem, I can feel it the second my SI joint starts to lock up.
Once in a while it will turn out to be a false alarm– I’ll move in a way that sets off the old familiar pain, and I’ll freak out, but an hour, I’m still able to walk normally.
But all too often, it’s not a false alarm– I feel the catching sensation, and then no matter what I do, I’ll be limping for days, until I finally give up and go back to the chiropractor.
***
So this is the trap I’m in. I still go to a chiropractor several times a month. Once my hip has become caught in that peculiar way, a chiropractic adjustment is the only thing I’ve found that can make it become unstuck.
Meanwhile, I’m reading all these other blogs by people I really respect, who’ve turned out to be right about a lot of other things, who all say that chiropractors are at best misguided, and at worst, con artists.
I’m still waiting to find out that I’ve been completely wrong about the whole thing. That maybe my chiropractor was wrong, and that I didn’t feel exactly what I’ve been feeling.
That maybe the “sticking” feeling isn’t always coming from the joint itself. That maybe my muscles are just tight, and something about the chiropractic adjustment is loosening them.
That’s why, from time to time, I check in with other medical professionals. But surprisingly, none of the people I saw told me to stay away from chiropractors. Both of the physiatrists I saw actually expressed admiration for someone who had enough expertise to be able to manipulate a joint that was, to them, still quite mysterious.
***
The only helpful article I’ve found about the sacroiliac joint, EVER, is this one by Roger Cole.
He explains that in many people, the sacroiliac joint becomes fused as they age. This is particularly true for men, starting around age 30. By 50, almost all men’s sacroiliac joints have become fused.
This means that the two bones, the sacrum and the ilium, fuse and become one bone. The joint no longer moves at all.
But in women, particularly younger women, as well as people who’ve retained a lot of flexibility through yoga (which, he points out, might not actually be a good thing) this joint tends to remain unfused.
This is one reason why the medical profession might not have a good handle on this joint. Up until recently, it was pretty much only men studying anatomy, contributing to medical textbooks, and practicing medicine. And by the time they’ve actually become successful doctors and surgeons, these men’s own sacroiliac joints have completely fused.
And even for women like me, it seems like most of us need to have some kind of precipitating event to have issues with this joint. My web research tells me, at least anecdotally, that it seems to most commonly affect women during and after pregnancy.
I don’t think any of my readers will be too surprised that a problem that disproportionately affects women might not have received enough attention from the medical establishment.
***
So basically, my plan now is just get stronger.
It’s actually my main chiropractor, Dr. K., who first convinced me to join a pool and stop working out land.
For months, after I had first come to him with a locked up sacroiliac joint, he started telling me that getting stronger would be the only way I’d get better, and stop this problem from happening.
I had all kinds of reasons why I didn’t want to join a pool, but in retrospect, this problem would not have gone on for nearly as long if I’d just stopped the land exercise and joined a pool the minute my knees started hurting.
So for those who are inclined to think of chiropractors as con artists, Dr. K. really got on my case about joining a pool. He made it clear to me that his adjustments would only help in the short-term, but in the long run I was going to have to get stronger. And that the only way he saw me doing that was in water.
Over time, he got progressively more emphatic:
“Just go online and see what gyms around here have pools.”
“Just make one phone call about joining.”
“Just go in person and check out one pool.”
Finally I did, and I’m still kicking myself (or I would be, if my joints could move) for not doing it sooner.
***
Since I’ve been working out in water for about a year and a half now, I am a million times better. I haven’t completely stopped my SI joints from “sticking,” but now that I am stronger, they don’t “stick” quite as badly. It also just doesn’t bother me quite as much when they do, because I have more strength in other areas of my body to compensate with.
So I am not out of the woods yet, but at least I feel like I am learning.
As I’ve promised in previous posts, I plan to be writing more about the specifics of my exercise program, as well as the exercise science concepts that I think are really useful for anyone with chronic pain and biomechanical dysfunction.
Stay tuned!
***
Again, this is an old post! I’ve come a long way since I wrote this, and have so much more to say! Please be sure to check out My Sacroiliac Joint Saga for more.
Hope
May 1, 2014 at 2:55 pmMy SI joint issues aren’t quite the same, but I’ve also struggled to find doctors who have much knowledge about it. I’ve basically given up at this point and just live with the pain, which sucks…but I live in a small town where I’ve gone through all the orthopedists and physiatrists. All they were doing was putting me through useless PT, steroid injections, and narcotic painkillers that make me too dumb to work. It’s easier to just live with the pain.
sunlight in winter
May 2, 2014 at 10:34 amUgh.. I’m sorry to hear that. I feel a bit redundant asking this after my very long post on the subject, but I’m curious if you’ve ever thought about seeing a chiropractor (or maybe you already have?).
The other thing that’s helped me is working out in water– cold water, specifically, because it acts like a giant ice pack. I got much better results once I switched over to a regular (chilly) pool, rather than the heated therapy pool I first started working out in. Just wanted to throw that out there as well…
Hope
May 2, 2014 at 10:44 amI did see a chiropractor for a little while. He was awesome. He did a lot of deep muscle work instead of just getting in there and roughing up my spine like most of them do. He also told me I’ve been standing and walking wrong my whole life, so he retaught me. But my insurance doesn’t cover chiropractic, so I couldn’t afford it long term.
Rachel M
May 1, 2014 at 3:17 pmI’m sorry to hear you’ve had no luck with all the specialists you’ve seen for this. I had neck problems a couple of years ago and it was causing me a great deal of discomfort. I tried seeing an osteopath first just because a friend had recommended them. It was a waste of time. Then I went to a physiotherapist and he was fantastic. He completely solved my problem. The pain still occasionally returns but I know what to do now and can fix it myself. I imagine that not all physiotherapists are as good as he was though.
I’ve never tried a chiropractor or a physiatrist (never heard of this before) but I think you have to do what works and go with that. The pool sounds like a good idea. I hope it helps.
sunlight in winter
May 4, 2014 at 8:08 pmThanks for your kind words, Rachel.
It’s so interesting, the people who end up being able to help us and those who don’t. I’ve had some physical therapists who really helped me with one problem, but then totally failed to help me with another. Same with physiatrists, actually.
I’d like to think that someday, when I have succeeded in becoming a physical therapist, I’ll be great at treating absolutely every condition. However, something tells me I’ll probably end up learning how hard it is to be on the other side of this dynamic.
Glad to know your neck situation is under control!
Carole Ramke
May 1, 2014 at 3:24 pmJust a thought: Have you been tested for vitamin D? The old blood level of 25 ng/mL
may be enough to prevent rickets, but a level between 50 and 100 can do wonders to stop pain as well as prevent many diseases and conditions. According to Dr. Cannell of the Vitamin D Council, 5,000 I.U. per day may be needed by adults since most of us are deficient. I took 10,000 per day for months to get my level up, and have felt better ever since.
sunlight in winter
May 4, 2014 at 8:10 pmHi Carole,
Thanks so much for your comment. I think my PCP must have tested my Vitamin D at some point, but it couldn’t hurt to double check! Glad to hear it worked for you.
playingthehandiwasdealt
May 2, 2014 at 5:22 amHmmm. Have you come across Ehlers-Danlos syndrome (EDS) in your studies/research? It’s not well known and I saw PM&Rs and rheums for years and years. I was finally diagnosed after self-referring to a geneticist, but was told I had fibro for over a decade. The SI joints are a huge problem with many EDSers–primarily the hypermobility type. I have the classical type and had no clue I was hypermobile due to feeling so stiff and achy, but apparently I’m a rather textbook case. My PT can’t figure out if my left SI joint is actually subluxating, but my spastic muscles seem to pull everything out of whack, so it’s not always due to our lax ligaments. Food for thought and best of luck on your quest!
sunlight in winter
May 4, 2014 at 8:16 pmHi there,
Thanks so much for your comment. I had heard of EDS before, though I’d never actually realized the similarities between my own symptoms and what people with EDS go through. It’s something I will keep in mind.
That’s so unfortunate that you were misdiagnosed for a decade. Unfortunate, but sadly not too hard to believe. Kudos to you for taking charge and seeing a geneticist.
playingthehandiwasdealt
May 4, 2014 at 10:29 pmThanks! I just left you a message at my spot. I’m glad you at least have heard of EDS. The big issue I find is that everyone seems to have the hypermobile type (formerly type III), so I literally went to the geneticist thinking 50/50 after reading about human pretzels and dislocations and thinking, “That’s not me!” It was, just a different type of EDS affecting collagen V. My mother and grandfather have/had milder cases, so it was staring me in the face the whole time–as was a typical, EDS scar on my ankle from middle school that I thought was normal. Argh. I so hate unsolicited advice, but please do poke around the EDS forums if you can (watch out for meanies). I really think I wound’t be so debilitated if I’d had good PT starting 13 years ago, and I definitely would have gotten a Dx on my corneal disease ASAP if only I’d known.
Best of luck and kudos for being an educated patient, as well!
Anne
June 11, 2015 at 2:47 amI know it’s a year since anyone has posted here, but just in case! I’ve suffered from SI joint issues for what seems like forever. Constantly going to the chiropractor, massage, yoga. I started physical therapy (PT) last year and it’s become quite apparent that we are not scripted at a young age on what proper core stability is. I mean wow. So anyone looking into this, definitely find a good PT who knows what they are doing to help you strengthen your core correctly. Now, on to the fun part! The easy part! I know right? Nothing’s ever truly easy….except this :).
I just ran across this lady’s blog last night, did the stretch she recommended, and OH-MY-GOSH; haven’t felt this good in forever. Even after getting adjusted and massaged. I did two sets of the stretch, 5 seconds and 10 seconds (I also have a labral tear so have to be very careful). But what a difference it made!!!!!! I can’t even convey how exhilarating it was to get up off the floor, put my thumbs on my sacrum, walk across the room and actually feel my hips move. Beautiful moment. So, she has 2 blogs on the SI joint, here is the one I did: http://bernadettebirney.com/2013/04/stuck-instructions-for-unsticking-a-cranky-s-i-joint-part-2.html#comment-61118
sunlight in winter
June 11, 2015 at 10:09 amHi Anne,
Thanks so much for your comment. Wow, I can’t believe it’s been a whole year since I wrote this post! I have improved somewhat, but still have a ways to go.
That blog post from Bernadette Birney was really interesting. I liked what she said about how, because the SI joint is so irregular, there are multiple points at which it can become “stuck.” I’d never thought about it that way before.
I’m actually kind of surprised to see that stretch has helped you and so many other people. I tend to have really bad luck with stretches/exercises where my weight isn’t balanced evenly through both hips. But I’m curious, so I’ll give it a try 🙂
Best of luck to you!
M.
July 11, 2016 at 12:38 amMaybe try prolotherapy and prokinietic inserts. My SI joints problems aren’t all gone, but wearing the prokinetic insoles have helped so much. Could not even walk before I started on them. Do you have a Morton’s toes?
I’m looking into prolotherapy shots now. So far the research is strong on the effectiveness of these injections. But it’s hard to find doctors in my area who administer prolotherapy. I have lots of issues with loose connective tissue, including pelvic instability, SI joint disfunction and shoulder impingement. Chiropractic has been the most helpful so far with strengthening of my feet and leg muscles in addition to core strengthening.
sunlight in winter
October 24, 2016 at 6:28 pmM., I’m so sorry for the delayed response! (I always try to respond to everyone’s comments– for some reason, I didn’t get a notification for yours). Anyway, thank you so much for commenting on my post. If you’ve been following my blog at all, you know that my SI joint issues are doing a lot better since I started only adjusting my joints myself, and stopped going to the chiropractor. I’m really curious if you ended up going through with the prolotherapy shots, and if they helped. Please let me know! Thanks again!
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