Pain is difficult to quantify.
“On a scale of one to 10 how bad is your pain right now?”
Only problem with that metric is that my eight and your eight might mean totally different things. And what I call an eight today I might call a seven or a six on a different day, because the pain in my lumbar spine is somehow different than pain in my shoulder. Or maybe I didn’t sleep last night, and what would’ve been a six after a good night’s sleep actually feels like a nine because I’m super tired. You get the idea.
But one thing I’ve found among my fellow SIJD friends is that as a group we seem to be very interested in how our symptoms measure up with those of everyone else. I think the main reason we ask, “what does this feel like to you?” is because all too often we’re trying to diagnose ourselves. After years and years of seeking solutions and seeing a multitude of doctors, we’re not getting better. But we’re out of money and we’re out of fingers to count the number of doctors we’ve seen. So we do the best we can to keep a stiff upper lip and try to accept our limitations. We take drugs we don’t want to take. We undergo painful procedures that in the end don’t provide significant relief. And then eventually we cycle back to a mindset of, “There’s got to be someone out there who can figure out what is causing this chronic pain!” So we start sleuthing around on our own again, trying to connect the dots.
Of course we can’t really be the ultimate diagnosticians; the best we can do is shore up our courage and once again fiercely advocate for ourselves. One important component of my own self-advocacy has been listening to and learning from the experiences of others. And lately, I’ve had several people ask me what my symptoms were. Since others have kindly obliged my request for the same, I’m going to try and take a stab at describing mine here.
Let me say up front that I don’t think there’s an official list of symptoms that’ll tell you once and for all that your sacroiliac joint is a major part of what’s causing your back pain. It presents differently in different people, for a variety of reasons. First of all, person (A) may just have SI joint problems. Person (B) may have SI joint issues along with lumbar complications. Person (C) may have SI joint involvement but also has a genetic or autoimmune condition like Ehler’s Danlos Syndrome, Ankylosing Spondylitis or fibromyalgia. The combinations are seemingly endless. When you have several issues at once, they’re called comorbidities. So persons (A), (B) and (C) may have some of the same symptoms but they also may have symptoms that stem from their own unique comorbidities, and it’s hard to tell what condition is causing what symptom. So it’s rarely an apples-to-apples comparison. Keep that in mind.
That said, here are some of the hallmarks of my 30-year struggle with SIJD.
I couldn’t stand in one place for more than a few minutes without my low back and sacrum locking up. And even during those few minutes I’d be shifting from one leg to the other.
Sitting in one position for any length of time wasn’t an option. I was constantly shifting from butt cheek to butt cheek, crossing and uncrossing my legs. When I was on a couch or other larger surface I’d constantly arrange and rearrange my body – one foot up on the couch, one down. One foot folded under my butt, the other one on the ground. Both legs on the couch, folded in front of me, etc.
Sitting on a hard surface for any length of time always left my low back and sacrum locked up.
I always had a bad ache just over and under my right iliolumbar ligament. The affected area was like a triangle. The ligament always felt taut and tight. Lots of inflammation.
Bending forward without shifting to isolate and incapacitate my right side would result in a very sharp, spasmy pain. In other words, I couldn’t bend straight over. I’d bend to a certain point, shift to the left to get past a certain angle, and then could fold forward.
Hamstrings were always tight, and the right one was almost always aching, burning and seemingly yanking my pelvis. Sometimes my piriformis muscle was involved, sometimes it wasn’t. The intensity of this depended on how active I’d been. And sometimes it didn’t depend on anything; it just seemed to come out of nowhere.
Hot burning and tightness in my right butt cheek. Sometimes it felt like someone had positioned a hot fireplace poker it into my right glute, and was holding it there for hours on end.
Though it was intermittent and varying in degrees, the right side of my pelvis would twist or “drop” to the point that my right leg was ½ inch functionally shorter than my other leg. When that happened I felt lopsided. I’ve heard practitioners say, “It’s impossible for your SI joint to “go out.” To that I say: “Whatever.” That’s how it felt to me, and that’s how I choose to describe it. And my chiropractor will tell you that when I laid down on the drop table my right leg was a good ½ to ¾ inch shorter than the left. And that after adjusting me they were even. When the “fix” worked, I knew immediately after getting up from the table. It may’ve lasted for five minutes or five weeks. But it never worked forever and ever amen.
I had a lot of other symptoms on my right side: chronic knots in my shoulder girdle, neck problems, and occasional mid and upper back spasms.
A signal that I was about to have a major flare: the right side of my pelvis and my right neck felt like they were pulling my body into the shape of the letter “C.” This happened a lot.
Chronic ankle sprains on the right; even fractured it once.
I routinely walked and stood with my right foot rotated out about 15 degrees.
Chronic right knee instability and knee pain.
Couldn’t lie on my back with legs stretched out for more than about 30 seconds without discomfort. The longer I stayed, the worse it got.
As my symptoms got worse, I couldn’t sleep on my right side anymore (which left me only one sleeping option—on my left side.)
Groin pain, right where my leg meets my torso. Aching, pulling.
Frequent urination, especially at night. Now I know that that’s often a symptom of SIJD because the dysfunction of the pelvis irritates the nerves that serve the bladder.
Pain on the outside of my hip/pelvis. Probably a result muscular imbalances or some sort of bursitis.
Sometimes my right iliolumbar region was swollen and hot to the touch.
Intermittent sciatic leg pain and tight IT band.
Sometimes even at rest, it felt as though my right foot was trying to flare laterally, away from my leg.
Though I never had an entirely pain-free day, there were moments, brief spans of time where I didn’t feel the majority of symptoms, and I’d question myself: Do you really have this condition if you’re standing here without pain? Maybe it is all in your head.
I was not constantly bedridden (though I’ve had days where I had to stay in bed.) I often wrote checks my body couldn’t cash, meaning I knew I shouldn’t do certain things but was stubborn enough to do them anyway, knowing that I’d pay dearly. Example: go to a theme park with my children (though I’d avoid rides that would exacerbate my pain. No rollercoasters or anything else that would jerk me around. I made it from bench to bench, and sat on the railing or on the ground when we were “standing” in line, etc.)
I will talk about this more in a subsequent post, but I made a decision that I would not let this condition completely rob me of the life I wanted. I worked as a writer/photographer. I traveled and attended conferences, went on tours, accepted assignments that sent me to press junkets, concerts, and a wide variety of activities and locales. (Rather than list them, you can see examples here.) I stayed active by riding my bike or working out on the elliptical at the gym or swimming laps. I even did a Danskin triathlon in 2004, which is a sprint distance, or beginner/entry level triathlon. (I have never been able to run due to the pelvic/low back issues, so I walked the running part.) But I always, always brought my pain with me. I didn’t let it win, but it fought me tooth and nail 24/7. The fear of not being able to keep up, the fear of incapacitation or what this physical expenditure would cost me in the following days was always with me. Always. Yes, there were times my pain and disability won the battle. But I refused to let it win the war. I wondered, “If I am able to do all this, do I really have SIJD?” Today I would answer an unequivocal “yes.” SIJD doesn’t just have one face. It has many. And you can’t let it win (more on that later.)
My symptoms got better and then ultimately worse over 30 years. In the nineties, before I started taking anti-inflammatories and antidepressants to turn down the volume of my pain, I was horizontal a great deal of the time. I had three young children and had to work around my responsibilities as a wife and mother. The drugs helped me get in the game more, but they never came close to fixing the problem.
But as I got older, the symptoms got worse. In my thirties I was able to walk for exercise—several miles at a time. But as the years passed, walking wasn’t a good form of exercise for me. It made my pain worse because all the compensations I had to make to walk straight put a lot of stress on other muscles and joints in my body—places that weren’t designed to take that stress. Though even two years ago I could ride 12 or more miles on my bike several times a week, I got to where the only exercise I could do was swim. For about five years I could do yoga several times a week (top level: Hatha I.) But it got to the point that I could barely make it through a gentle yoga class. (I always wanted to do restorative yoga, but I couldn’t stay in one position long enough to benefit from it.) I kept trying to do yoga up until one week before surgery.
None of this was easy. I often had to fight myself to get up and do it, despite the pain.
My take on the whole exercise thing is this: I pushed myself to get up and move because I didn’t want to turn in to the Tin Man from The Wizard of Oz. The endorphins helped. But sometimes I overdid it and ended up in more pain. It was a tradeoff that I was willing to accept. And in the end I think it has served me well.
I never had any particular tenderness over the SI joints themselves. No major pain with palpitation either. This also made me wonder if I had SIJD.
I’m tempted to search for more symptoms that I am forgetting about (and I’m sure there are some) but I’ll stop for now. I am not quite three weeks out from a right sacroiliac joint fusion, so it is way too early to call the whole thing a failure or success. But I will tell you this: I can already sit without significant pain (the other day I sat in one position for a couple of hours before shifting. I was shocked when I realized it!) I would say that 75% of the low back pain that constantly stalked me is gone. The chronic ache in my right iliolumbar ligament area is gone. The sharp pain I felt when folding forward is reduced by about 80%. (I am still pinching myself about this. It is so amazing to be able to move more freely without the threat of stabbing pain!) My right foot points straight forward, without my having to consciously make it so. What does this mean? I have no idea. I’m just reporting the facts. And though I’m slowly getting back into walking for light exercise, for the first time in as long as I can remember, I feel like I can do it without it making me worse off afterward.
But alas, I am not pain free. I’ll talk about that in my next post: Comorbidities.
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