I was ecstatic when I first learned that there were Facebook support groups for those who suffer from sacroiliac joint dysfunction (SIJD). Listening in to the conversations that others were having about their experiences was not only enlightening, it was also deeply affirming. I’d never met anyone who knew what it was like to live with the chronic pain associated with SIJD. Facebook gave me instant access to hundreds of people who had a story very much like my own.
Before long, I jumped in and started asking questions. But I had to keep going back through all the posts if I wanted to revisit one or remind myself of what someone had said. At one point I thought, “How great would it be if I could gather some basic info in one place?” And that’s how my informal survey came to be.*
I put the poll out there hoping to learn more about how people navigate the medical maze that most SIJD sufferers have to try and find their way through. I also hoped to gather info on current trends in SIJD diagnosis and treatment. After three days I had 120 responses, which is a teeny-tiny sample when you consider how many folks have si joint problems. But it was still enlightening. Many of those who participated chose to remain anonymous, and none of the questions were mandatory, so not every person answered every question. But for the most part, the results were well populated. I’ll be sharing the results over a series of posts, but here’s the first round.
In response to the question “How long have you suffered from problems related to your sacroiliac joint?” here’s how it broke down:
1 year or less: 7.41%
2-3 years: 23.15%
4-5 years: 20.37%
6-10 years: 19.44%
More than 10 yrs: 29.63%
In case you missed it: the majority of respondents—nearly thirty percent— say they have been dealing with this for more than a decade.
Physical Therapist: 25.23%
Medical Doctor: 53.15%
I figured it out myself: 9.01%
Many of those who say they figured it out themselves subsequently went looking for a practitioner to confirm their suspicions, and then often placed themselves under a clinician’s care.
One particular question on the survey yielded answers that were both validating and distressing to me. Validating, because they made me feel less alone, but distressing because it’s clear that many others are getting the same erroneous, or at least incomplete, diagnoses.
I asked, “If you were misdiagnosed, what did the practitioner say your problem was?” Several of the answers were familiar to me, meaning that some of the same diagnoses have graced my own patient chart at some point in time. But here’s the snag: I actually do have some of those things. And I think they probably do contribute to my own overall pain problem. But they’re not the only problems. One of my upcoming blog posts will be about comorbidities (simultaneously having two or more chronic diseases or medical conditions) because I think comorbidities are major players in the “Why-can’t-I-get-well?” game. But for now, here are the answers from the misdiagnosis question on the survey:
Osteoarthritis of the spine
Regional Pain Syndrome
Anterior Compartment Syndrome
Growing pains (!)
Schmorles Nodes Syndrome
Pelvic Girdle Pain
Fractured or bruised sacrum
Degenerative Disc Disease
“You’re just getting old”
Bone length difference
Broken pain system in body
“It’s all in your head”
That last diagnosis is perhaps the most heartbreaking (and infuriating) to me. One respondent sought help for her chronic pain after a work accident. Her doctor tried a variety of treatments, none of which took the sacroiliac joint into consideration, and none of which helped her get better. When she insisted that she still had pain that wasn’t being addressed, the insurance company labeled her a “malingerer” and sent her for a psychiatric evaluation. (Don’t even get me started, or I’ll lose the focus of this post. We’ll talk about the “It’s all in your head” thing soon.)
In the overwhelming majority of cases, I think that doctors and other practitioners mean well, and are doing the best they can to try and pinpoint the problem. But most are steeped in old ideas and beliefs, and for whatever reason haven’t ventured outside of their own paradigm to learn about recent developments in SIJD diagnosis and treatment. Two survey respondents said their doctors finally admitted to them, “I don’t know what it is.” To me, that’s kind of refreshing. I suspect that a lot of doctors feel that way, but can’t bear the thought of sending a patient away empty handed. So they either make their best guess, or recite what little they know about treatment options.
Western medicine has become so incredibly specialized. Even doctors within a broad category often limit their practice to one particular thing. For example, in orthopedics, more and more I’m finding physicians that only do knees or hips or shoulders. Those areas of expertise are extremely common, and as such they are accompanied by a lot of standard protocol, research data, and emergent technologies. Not so for the sacroiliac joint. I’m not saying they’re don’t exist, but I’ve never come across a doctor who only specializes in sacroiliac joint dysfunction.
I guess my point is this: We don’t have the luxury of assuming that all doctors are equipped to detect sacroiliac joint dysfunction. Nor can we assume that all doctors who diagnose SIJD are aware of/believe in all possible solutions to your pain. Quite often, they don’t. If we want to get better, we must somehow find the practitioners who have their heads firmly in the contemporary game.
Next up: a synopsis of my story.
(*If you haven’t done so already, please register your voice by taking the survey here.)
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