Understanding Fibromyalgia; How Experts are Diagnosing and Treating Their Patients - Episode 2

Why FM is Often Misunderstood

Published on: 
, , ,

Experts offer their clinical experience on why fibromyalgia (FM) is often misunderstood by patients and practitioners.


Wendy Wright, DNP, ANP-BC, FNP-BC, FAANP, FAAN, FNAP: Why do you think it is that this is such a misunderstood diet disorder?

Benjamin Natelson, MD: In medicine we're always looking for something we can hold in our hands. Some abnormal tests, and we don't find that in fibromyalgia, in irritable bowel, and migraine headache, et cetera. We must make the diagnosis based on what the patient tells us, using some kind of clinical case definition. And that makes practitioners uncomfortable because they'd like it to be tight and square.

Kostas Botsoglou, MD: Additionally, we lack objective diagnostic testing. As I mentioned, there's no specific lab test or imaging that can help definitively confirm the presence of fibromyalgia. And as mentioned, we like to have something in our hands. In addition, the symptoms can be subjective, and maybe overlap with any other conditions. As a rheumatologist, we also want to rule out any other inflammatory diseases.

Benjamin Natelson, MD: And let me ask my rheumatologic colleagues, Wendy said that fibromyalgia patients have problems with sleep and fatigue and several other things. And fibromyalgia is a spectrum illness where some patients do not have those problems, they really have, for the most part, diffused body wide pain, which may in fact affect their sleep. And we know that shortened sleep time reduces pain latency. And disturbed sleep, of course, could be responsible for some cases of pain.

Wendy Wright, DNP, ANP-BC, FNP-BC, FAANP, FAAN, FNAP: I agree with you, sometimes it's what comes first, right? The chicken or the egg. Is sleep causing their fatigue? Is the pain causing their fatigue and worsening their sleep? I do know that I've seen studies where there's abnormalities in different phases of sleep-in patients with fibromyalgia. And while that may not be everyone, what I often hear from them is, no matter how many hours a night I spend in bed, I just am never feeling like I'm restored. I'm just wondering, what can we all do besides something like this to improve our overall understanding or to help our colleagues to improve their overall understanding of this condition?

Daniel Clauw, MD: We already know a lot about these conditions. The general providers don't. But from a research standpoint, using things like functional brain imaging and quantitative sensory testing, there's reproducible abnormalities in these individuals. It's not like you can't identify anything wrong with them or that there's no consistent findings. It's just that these are not tests that are available clinically for people to order. And that does make it more difficult for people to get a foothold on. But there's a lot of clinical conditions that we're comfortable diagnosing that there are not objective tests for. And again, I think people just need to get over it a bit. There are a lot of conditions for which there are no objective diagnostic tests, but look at this symptom complex, multi-site or widespread pain with fatigue, memory problems, sleep disturbances. That's the syndrome. And like Ben says, not everyone has all the elements. And we also know there's a subset of people that with chronic fatigue or post COVID who have all the other stuff, but not much pain. When you look more broadly at this entire syndrome.

Kostas Botsoglou, MD: Additionally there's been historical stigma and gender bias often dismissed condition. And helping our colleagues recognize that this in fact predominantly affects women. And to help perhaps minimize that gender bias and challenges in gaining recognition and understanding.

Benjamin Natelson, MD: And our job as physicians is to help patients relieve their suffering and improve their health-related quality of life. I don't think it's good to be judgmental about this isn't- and for years in these illnesses, there were arguments. Is this psychiatric? Is this medical? We know the answer to that question now, but the bottom line is a physician cannot dismiss a patient's complaints because that patient may be severely affected and in fact, disabled by the severity of his or her pain.

Transcript edited for clarity.