Disease can differ greatly from patient to patient

Host Amber Smith: Upstate Medical University in Syracuse, New York invites you to be The Informed Patient, with the podcast that features experts from Central New York's only academic medical center. I'm your host, Amber Smith.

Fibromyalgia does not have a cure, but treatments are available for this disorder, which is characterized by widespread musculoskeletal pain with fatigue and sleep, memory and mood disorders.

Today we'll learn more about fibromyalgia from my guest, Dr. Alex Hensel. He's training in family medicine at Upstate.

Welcome to "The Informed Patient," Dr. Hensel.

Alex Hensel, MD: It's good to be here.

Host Amber Smith: Can you first describe what fibromyalgia is?

Alex Hensel, MD: Fibromyalgia is, a syndrome. It's a collection of symptoms. I wouldn't think of it as a single disease or a single disorder, but more, it's a way for us to describe how this collection of symptoms presents.

And like you mentioned on the introduction, it usually has a couple features to it. Diffuse pains in several parts of the body, as well as systemic, bodywide, different symptoms that you'd feel: fatigue, low energy state, kind of these vague, overwhelming effects it has on the body.

Host Amber Smith: How does it typically present?

How does someone learn that they have this, or does it come on gradually?

Alex Hensel, MD: It typically is something that's present for months or years, and it's an ongoing process. It tends to develop in middle adulthood to later adulthood when it first develops, and currently it's identified solely on clinical criteria. That means we look at the picture, we discuss with a person, and we get part of their history to see if it fits the pattern, if it fits the story, for fibromyalgia.

We don't have any reliable blood tests. We don't have any tests or any imaging or anything that can really say yes or no to fibromyalgia.

Host Amber Smith: What part of the body is most impacted by fibromyalgia?

Alex Hensel, MD: So it can be very diffuse. That means it can affect different people in pretty substantially different ways. Most often when people are having symptoms, or they think of it, it's with weakness or aching-type feelings in their extremities: the arms, the legs, sometimes the neck.

That's where people tend to notice it the most, but it can affect even the abdomen, even an upper back. You can have vague, diffuse feelings of aching, feelings of soreness, at those sites. Really, the rule with fibromyalgia is that you have these diffuse symptoms that can be all over the body, but they come and they go.

Host Amber Smith: Are there other conditions that someone with fibromyalgia might also have, other medical conditions?

Alex Hensel, MD: Yeah, there certainly is, and there is quite a bit of coincidence. People who have fibromyalgia, we also see more of an incidence, more of a happening, of other chronic inflammatory, other chronic irritation, conditions.

And that's part of why diagnosing fibro is difficult. We have blood tests that can tell us, yes, your body's inflamed, but is that because of fibromyalgia or is that because you have rheumatoid arthritis? So we can't use those types of blood tests to say it's fibro without anything else.

Host Amber Smith: Well, I want to talk to you more about how the disease is diagnosed, because if someone comes in, or they go to their primary care provider, with musculoskeletal pain, fatigue, maybe mood issues, how do you go about determining what it is that's causing it?

Alex Hensel, MD: And that can be difficult. There oftentimes isn't a clear and absolute picture with a disorder like fibromyalgia. There are a couple tools, clinical questionnaires, basically, that ask a series of questions and ask a series, kind of, of steps to go through for the medical provider to kind of arrange how things are presenting.

And those clinical questionnaires have a score that's associated with them, so then you add up the answers to that score. Some of the older types, they then have to multiply and do some other things. Some of the newer types of scoring metrics, you basically just add the numbers together, and if you're above a certain threshold, it suggests fibromyalgia is part of what you're looking at.

Host Amber Smith: Are there conditions that you have to rule out that maybe look like fibromyalgia, and you want to take care and make sure that it's not one of those things?

Alex Hensel, MD: Historically, a lot of conditions were referred to as rule-out conditions, where you'd want to make sure it's not X, Y or Z before you could say it is this definitive, final condition. Medicine in general has moved more and more away from the rule-out conditions, and part of that's because you can have fibromyalgia on top of rheumatoid arthritis.

If you have rheumatoid arthritis, we drive our treatment after that, and we just ignore the possibility of fibro while we're not comprehensively managing what your clinical situation is. So no, we don't really use rule-out, but there is coincidence.

Host Amber Smith: This is Upstate's "The Informed Patient" podcast. I'm your host, Amber Smith.

I'm talking about fibromyalgia with Upstate family medicine resident Dr. Alex Hensel.

Let me ask you, do we know what causes fibromyalgia?

Alex Hensel, MD: Definitively, no. There's a couple ideas, a couple theories, as to what it is and what causes it. We know that there are a couple things that if they're present, they make it more likely, they make it more possible, for a person to develop fibromyalgia later in their life.

And some of that is genetic patterning. If you have a family history of fibromyalgia in one or two parents, that increases the chance that you will develop it later in life. But some of those things are also situational or lifestyle or driven by exposures. People who've had severe trauma, PTSD -- post-traumatic stress disorder -- or, even if they don't develop PTSD, if they had a severe traumatic event, they have an increased risk of developing fibromyalgia later in life. And that's part of what we're learning, new things about it, year on year, about why it happens and why some brains develop it and some don't.

Host Amber Smith: Is it true that more females have fibromyalgia?

Alex Hensel, MD: It is more common. We look at it in terms of a statistic called "incidence," how many new cases, how many new diagnoses, of a condition do we have in a period of time. And the incidence for fibromyalgia is higher in females than in males, so yes, it does happen more often in females than males.

Exactly why, we're not clear about. there is a theory that it has something to do with the estrogenic access or the pro-inflammatory nature. A lot of autoimmune autoinflammatory conditions, such as rheumatoid arthritis or such as Sjogren's syndrome, those are more common in females.

Why?

There's a lot of theories, but I don't think there's a definitive answer to that yet.

Host Amber Smith: In terms of disease management for fibromyalgia, is this a condition that's treated by primary care doctors, or when would a patient be referred to a rheumatologist, say?

Alex Hensel, MD: That is something that's a bit up in the air, I would say, because it is a condition that we are figuring a bit more out about fundamentally what it is.

Historically, it's been lumped in as rheumatologic condition. It was thought that it was really driven by the body attacking itself as an autoimmune process. But some of the theories, some of the work, we've been seeing, it's less likely to be autoimmune driven, to be that kind of disease process. So it really doesn't fit into a rheumatologic model, in which case, rheum (rheumatologists), they can deal with the inflammatory components, but if it's more driven by a central nervous system change, by the brain's chemistry changing, well, rheum really isn't a good fit for that.

I'd argue -- I have a little bias because I'm a family medicine provider -- but I'd argue that it's a good fit for primary care to tackle. But if we get to a point where it's beyond the scope, where it's more extreme than primary care can handle, rheumatology is still in the scope; they're one specialty we could talk to. Another that would be good to consider would be pain management.

Host Amber Smith: Are there effective medications that you can prescribe to someone?

Alex Hensel, MD: There are. There's a handful of agents that we know work decently well, and research is ongoing for other ways to use those or other approaches to them.

The medicines that seem to have the best effect are actually the antidepressant and anti-seizure class medicines. And then specifically in the antidepressants, a class of medicines we call the SNRIs; those are the serotonergic (and) noradrenergic reuptake inhibitors. We don't exactly understand why, but modifying the way that the brain signals respond changes how it perceives pain signals with these medicines.

An example of these would be duloxetine. That one is a fairly widely studied medicine that does have a benefit on fibromyalgia.

Host Amber Smith: Are there lifestyle modifications that you recommend?

Alex Hensel, MD: Yeah, this was actually something I came across when I was doing some research into this subject a little while back.

Just having some education, having an insight and understanding, in how the disease process works, having an educational conference with a provider, and it was a small class of 20 patients. That actually helps people to experience less pain and less lifestyle fatigue and other lifestyle impacts. So just talking, just having an understanding of what the disease, what this process, is and why it happens, that helps with it.

The lifestyle modification that's the most studied and seems to have the biggest impact, though, is exercise. Regular physical activity doesn't need to be particularly strenuous, but something that increases the metabolic activity of the muscles and increases the strain on the joints, not excessively.

Jogging, swimming are great examples, cycling, any of those that increase the heart rate, put some strain on the muscles, that changes the way the brain perceives pain signals, and that really is what fibromyalgia is, in our understanding of it.

Host Amber Smith: Well, let's talk about what life is like for someone who has fibromyalgia.

How much does this disease impact everyday life?

Alex Hensel, MD: That can vary quite a bit, person to person. In some cases, it's something in the background that people just kind of muscle through or push through to live the life that they want to live. In other cases, it can be quite debilitating and can interfere with every activity of daily life.

There's quite a wide spectrum of the impact it can have, but even in mild cases, it is something that affects well-being. So getting it better controlled and having less of a detriment, less of an exhaustion, with it, there is benefit to be had even in those situations.

Host Amber Smith: Are there complications that patients need to be on the lookout for?

How would you know if it's getting worse?

Alex Hensel, MD: It can be a progressive condition where things can get slowly worse as time goes on, and it builds and builds to a more extreme extent.

It's usually not: Suddenly, things get worse. It's progressive; it's slow. It does wax and wane as well, where you have a building of symptoms, a worsening of what you're experiencing, but then that can resolve over the course of a few weeks and get a little bit better. Then it can pick back up again.

It's very individual, the progression and how it impacts people.

Host Amber Smith: What sort of long-term outlook do you see for people who have fibromyalgia?

Alex Hensel, MD: That also varies In most cases, it's not something that you're going to cure. It's not something you're going to eradicate completely. It's a condition, it's a way that a brain is functioning. We can affect that and some the lifestyle benefits, the lifestyle modifications, the exercise, the neuroeducation, the reducing inflammation, in a big sense. Those are the things that have the best long-term impact. Medicines, medications, supplemental approaches: Those do have an impact on disease progression and burden, but they tend to be more time limited.

Medicines work up to a point, and then once this condition, once the sensitivity of the brain, gets to a certain extreme, they stop being as effective.

Host Amber Smith: Well, Dr. Hensel, I want to thank you for making time to tell us about fibromyalgia.

Alex Hensel, MD: No problem. It was nice to be on.

Host Amber Smith: My guest has been Dr. Alex Hensel. He's training in family medicine at Upstate.

"The Informed Patient" is a podcast covering health, science and medicine, brought to you by Upstate Medical University in Syracuse, New York, and produced by Jim Howe.

Find our archive of previous episodes at upstate.edu/informed.

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