Out of the 133 people who’ve taken my survey so far, 26 of them said they didn’t know of any other condition that is contributing to their chronic pain. Another 23 respondents left that field blank. So that leaves about 63% who have learned, or at least suspect that they’re dealing with multiple health problems. In the medical universe those are called comorbidities.
Anyone who has Sacroiliac Joint Dysfunction (SIJD) will tell you that getting a firm diagnosis is very difficult. But those who have SIJD along with other comorbidities will tell you that it seems next to impossible. I am one of those people. In addition to my long history with SIJD, I have collected a handful of other diagnoses over the years: Fibromyalgia, Hashimoto’s Thyroiditis, Sjogren’s Syndrome, Degenerative Disc Disease (complete with four bulging discs) and facet syndrome at L5.
This is how I wish these diagnoses looked in my life.
But in reality, they’ve looked more like this.
And I’ve spent 30 years trying to untangle them. I’ve long given up the notion that someday I’m going to be 100% pain free. That’s unrealistic for several reasons. First, if you have three autoimmune illnesses, permanent pain-free is a pipe dream. You don’t get rid of the illness; you manage it. (And since this isn’t a blog about autoimmune disease, I’ll not get too much in to that.) Second: I’m in my fifties. And that’s enough said about that. Getting older ‘aint for sissies. (Notice I didn’t say old.)
It’s not that people with comorbidities will never be able to sort it all out. It’s just that it can take a lot longer because symptoms overlap. Consider this: whichever doctor you go to first is going to focus on their own specialty. And following their protocol is going to take some time (and if you’re paying them and they give you a diagnosis and a treatment plan, you’re going to give it a try, right?) Tick tock, tick tock.
But what if the first doctor you go to isn’t untangling the most important piece of yarn (or the one that will result in the most relief for you at this stage of the game?) Of course they think it’s the most important piece of yarn, and you can’t really blame them. They’re doing what they’ve been trained to do. And in all fairness, they may not know which piece is the most important until they start ruling other things out. Though medicine is a science, it’s also an art (and even trial and error.)
Sometimes the panic comes from the knowledge that even you don’t know what the most important piece of yarn is. And honestly, why would you? They’re the professionals. Can’t they tell you? Only if you’re lucky enough to find a doctor who can help you untangle the whole ball of yarn. And in my experience, they’re few and far between. In twenty-first century medicine, things are highly specialized. And usually hurried. Very hurried.
I’ve had chronic pain since the early 1990’s. My number one complaint has been back pain. My first doctor was a chiropractor (a very bad one.) He talked about subluxations and made measurements in pencil all over my X-rays. I can’t remember the exact diagnosis but it was very official sounding. He told me he could fix my problem, and I desperately wanted him to be my savior. I spent a year and several thousand dollars going down that road with him, and instead of getting better, I got worse. To add insult to injury, when the chiropractor couldn’t admit that not only was he not helping me, he was making me worse, he shrugged and recommended that I see a urologist.
Yes, he said he’d once known somebody that couldn’t empty his bladder fully and that was causing his back pain. Being young and naive I made an appointment with a urologist and I’ll never forget how dumbfounded he was when I told him why I was there. “That’s the most ridiculous thing I’ve ever heard,” he said.
Needless to say, the chiropractor didn’t unravel the ball of yarn for me. He gave it a few more knots, because after repeated chiropractic adjustments that left me in horrendous pain, my body went in to an inflammatory pain cycle that I’ve yet to fully come out of. (And lest you think I’m slamming chiropractors, know that I’ve been with my current chiro for more than 20 years. He’s wonderful.)
From there I saw a D.O. who diagnosed Fibromyalgia and put me on antidepressant meds to “turn down the volume of the pain.” They helped. Several doctors and a host of prescription NSAIDS later, I got functional enough that I could limp through life (not always physically, but definitely figuratively. The back pain handicapped me 24/7.)
Later on I was diagnosed with Hashimoto’s and most recently (2014) with Sjogren’s. I have a daughter who has Lupus. We are auto immune-y people. I have significant pain in most of the Fibromyalgia trigger points. I know that Hashimoto’s and Sjogren’s are contributing to my overall inflammation and fatigue. But my back. Ohhh, my low back. That has always been screaming the loudest.
The orthopedists I saw in the 1990’s all pointed to my degenerating discs and my lumbar facet joint said, “Well, that might be your problem. We don’t know.” And after a host of injections and lots of imaging, they said, “Do you want to fuse them? We don’t know if that will help, but it’s all we got.” I said no. I thought it was my SI joint but nobody would listen to me. Sadly, I wrestled with the idea that I was wrong.
If you follow my blog, you know how it all played out. In 2015 I researched SIJD like crazy, I found the doctors I was most comfortable with, got the diagnostics that I needed to make my best decision, and then I had surgery in January 2016. The yelling, screaming, belligerent, nasty, throw-daggers-at-you back pain that has dogged me for 30 years is 80% gone. Yes, I know it’s too early to say, “It worked!” Save your admonishments. But after 30 years, I think I can safely say, “It’s better. Much better.” And I have hope it will only get better from here. Even if how I feel at three weeks out is as good as it gets, it was worth it. Totally worth it.
In case you’re interested, here’s a list of the “comorbidities” that others listed on my survey.
Femoroacetabular impingement (FAI)
Undifferentiated Connective tissue disease
Chronic Fatigue Syndrome
Tarsal Tunnel Syndrome
Low vitamin D
Type 1 Diabetes, Asthma, Ulcerative Colitis, Pernicious Anemia
Radiculopathy and a Conversion Disorder
I think some comorbidities muddy the SIJD waters a little more than others do. A couple that come to mind are Ehler’s Danlos Syndrome and Ankylosing Spondylitis. When those are present, it’s a bit harder to tell where the pain is coming from and what the best remedy is. Regardless of which surplus diagnoses you have, in all likelihood at some point you’ll find yourself at the intersection of chicken and egg. Which came first? Which is driving the pain train?
So if you have comorbidities, you’re in good company. You just need to learn how to advocate for yourself. It’s a requirement if you don’t want to get lost in the shuffle—nobody but you is going to sort it out for you. And you can do it. That’s what I’ll be talking about in my next post: self-advocacy and daring to trust yourself.
If you’d like to keep up with this ongoing story and conversation, you can scroll up to the top of this page and subscribe.
** Special thanks to Karli and Mary at Gauge in north-central Austin. They warmly welcomed me into their gorgeous shop and gave me the resources to let me take the yarn photos. Pay them a visit!