The Challenges of Diagnosing FM


Experts offer clinical experience on why fibromyalgia (FM) is challenging to diagnose and how they rule out other chronic pain disorders.


Wendy Wright, DNP, ANP-BC, FNP-BC, FAANP, FAAN, FNAP: I'm going to throw this out to you all, but I'm going to start on my end first and I'm going to kind of jump in on the question first and then I'm going to ask you, what makes diagnosing fibromyalgia so challenging? As a primary care provider for 31 years, many offices, the average primary care visit is 16 minutes, and the patient brings in six items that they want to talk with you about. And those are their 6 items, not the items we need to speak with them about. In primary care, we've heard a couple of you already say there's no laboratory testing, but for us in primary care, it's the shortness of the visits as well and just the sheer volume of the work that the primary care provider is doing, that makes it hard. And the last thing I would say about that is primary care we're responsible for over 6,000 guidelines. Keeping up with all those guidelines is tough to do. What about you all, any thoughts on what makes it so difficult to diagnose?

Kostas Botsoglou, MD: One of the things we've mentioned a bunch of things, but it's people don't find it that rewarding to diagnose because they aren't comfortable treating it.

Wendy Wright, DNP, ANP-BC, FNP-BC, FAANP, FAAN, FNAP: It's interesting.

Kostas Botsoglou, MD: Because it's almost like, 'Why am I going to give someone that diagnosis when I don't really know what to do for someone that has fibromyalgia?'

Benjamin Natelson, MD: It takes too long to figure out because the patient wants to be heard and I as the provider need to be heard. I don't see how we're going to solve that problem, Wendy, except perhaps as you pointed out, giving them some guidelines or a questionnaire. That's why I continue to use the 1990 case definition because it's so easy to do.

Kostas Botsoglou, MD: As Wendy mentioned, time is the limiting factor, and these patients want to be heard. And when they come into the exam room with a list of pages of symptoms, sometimes we may lose focus when they mention all these problems and having just the opportunity to listen to them and perhaps to bring them back more frequently so then we can make that diagnosis. But I agree with Dan that the satisfaction of making the diagnosis isn't as high as making a rheumatologic autoimmune disease diagnosis.

Wendy Wright, DNP, ANP-BC, FNP-BC, FAANP, FAAN, FNAP: Like insomnia, you open Pandora's box if you ask about it, because then you must do something about it. But I also think that people just aren't well equipped to make the diagnosis in primary care. So, I think there are some challenging factors. Do you have any idea how long it takes the average person with fibromyalgia to be formally diagnosed? Any numbers out there?

Daniel Clauw, MD: The studies are old, but it was 7 or 8 years, about ten or 15 years ago when the studies were done. I doubt that it's much better now myself. It certainly it takes a long time.

Benjamin Natelson, MD: I agree. Doctors are looking for specific symptoms that fall into syndromic chunks that make diagnostic sense to them. And when someone complains of body wide pain or in my practice horrible fatigue, which makes them have to rest, the doctor almost doesn't hear it.

Wendy Wright, DNP, ANP-BC, FNP-BC, FAANP, FAAN, FNAP: Do you think it's a diagnosis of exclusion?

Benjamin Natelson, MD: By all means. At least chronic fatigue syndrome is. You want to be sure. Well, FM, there are no exclusions and there's primary and secondary. Dan can talk about that. And chronic fatigue syndrome, we don't make the diagnosis if we can find any medical cause responsible for the fatigue and cognitive problems.

Kostas Botsoglou, MD: When a new patient presents to our clinic with diagnosis of fibromyalgia, my role is to make sure to rule out any autoimmune inflammatory diseases first. And that's where we work them up for either rheumatoid arthritis, lupus. More frequently the diagnosis especially in women of Non-radiographic axial spondyloarthropathy is gaining traction as many of these women were labeled as fibromyalgia, and in fact they had an inflammatory process in their axial spine. Indeed, we want to rule out treatable autoimmune or inflammatory processes first. Because if we do make that diagnosis of fibromyalgia and we don't treat the underlying cause, their symptoms will never fully recover.

Wendy Wright, DNP, ANP-BC, FNP-BC, FAANP, FAAN, FNAP: And what is your process, if I may ask for our audience tonight, for ruling out that spondyloarthropathy?

Kostas Botsoglou, MD: Well, a careful history and physical. Classically, patients will complain of morning stiffness. That's one of the hallmark features lasting up to an hour if not longer, back pain that is aggravated with rest and relieves with stretching and movement, a good response to NSAIDs. Usually there's a family history of an autoimmune disease, maybe not necessarily the same disease, but something similar perhaps like an inflammatory bowel disease or psoriasis. And it might have physical exam features like enthesitis, dactylitis as well. That lab work imaging, I'd like to get an MRI of the pelvis or SI joint as well as a trial of NSAIDs.

Wendy Wright, DNP, ANP-BC, FNP-BC, FAANP, FAAN, FNAP: Dr Clauw, anything you want to add into this about other diagnoses that we need to consider in these patients?

Transcript edited for clarity.

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