Neha Pathak, MD, FACP, DipABLM: Welcome to the WebMD Health Discovered Podcast. I'm Dr Neha Pathak, WebMD's Chief Physician Editor for Health and Lifestyle Medicine. Today we're gonna talk about fibromyalgia. This condition affects approximately 4 million U.S. adults, which is about 2% of the adult population. While the cause of fibromyalgia is not known, it can be effectively diagnosed, treated, and managed.

And that's what we're gonna get to the bottom of today — what fibromyalgia actually is, why it can be so hard to diagnose, and how it shows up in everyday life. We'll also clear up common misconceptions, like the idea that fibromyalgia is made up, not a real condition, or just all in someone's head. And we'll explain the science that validates patients' experiences.

We'll also take a step-by-step approach to diagnosing this condition, including the tests that are helpful and those that aren't, and where to start if you suspect you have it. We'll break down treatment goals, medication classes that can help specific symptoms, and we'll also talk about how to partner with your primary care team if you've faced skepticism. Then we'll dig into what's on the horizon for improved diagnostics and therapies.

First, let me introduce my guest, Dr Kevin Hackshaw. Dr Hackshaw is a board-certified rheumatologist in UT Health Austin's Rheumatology Clinic with 30 years of experience. He specializes in fibromyalgia and other conditions that comprise central sensitivity syndromes.

Additionally, Dr Hackshaw is an associate professor and serves as both the Associate Chair of Research and the Chief of the Division of Rheumatology for the Dell Medical School Department of Internal Medicine. Welcome to the WebMD Health Discovered Podcast, Dr Hackshaw.

Kevin V. Hackshaw, MD: Thank you very much. It's a pleasure to be here.

Pathak: We're very, very happy to have you and to dig into our topic today around fibromyalgia. But before we start exploring the topic, I'd love to ask you about the questions or issues that your patients are privately bringing up in discussions with you in the clinic.

Hackshaw: Oftentimes, one of the things that patients will ask me about is what's new on the horizon. Many of the patients are quite well-read in terms of fibromyalgia. They might belong to support groups or things of that nature, and often they have been on many of the FDA-approved medications for fibromyalgia already.

So they wanna know what's new, what's on the horizon, what's maybe in the pipeline. Other things that they often ask — and it's just because of the prevalence in our society now — is they wanna know about the overlap between fibromyalgia and long COVID. I think it's very unusual when we encounter an individual today who hasn't had COVID at least once, and they will frequently attribute many of the symptoms that they have to long COVID. So the question comes up: is this long COVID, or is this fibromyalgia, or is it both?

Pathak: So before we jump in further, let's take a step back and help us define — what is fibromyalgia? How is it medically defined?

Hackshaw: So fibromyalgia has been around for many years, and it's defined as a chronic pain amplification syndrome. And by that, what we mean is that individuals with fibromyalgia experience chronic pain, but there's not actual tissue damage.

Now, there may be nerve damage underlying, but we can't visually see that. So it’s a pain amplification — it’s chronic — and it is also characterized by other systems that are typically awry. For example, the autonomic nervous system might be hampered, sleep disruption might be ongoing, and fatigue is seen in 70% to 80% of individuals. Accompanying these chronic symptoms, you will often have individuals with cognitive dysfunction as well.

Pathak: So I'd love to get at an underlying misconception just from the get-go of our conversation, which a lot of people that don’t suffer with fibromyalgia hold. There’s sort of this running idea that this is something that's exaggerated, made up, or not a real condition. Where do some of these misconceptions come from in your experience, and how do you respond to them?

Hackshaw: Unfortunately, this is one of the reasons why many individuals with fibromyalgia are frequently doctor shopping — because they don't get validation of their condition with the prior doctor. They're searching because they know they have these symptoms, but they hear that it's all in their head.

Well, the validation for fibromyalgia comes from some landmark studies that came about first in the 1970s and subsequently in the late ’80s and early ’90s. Just to name a few: a study by Moldofsky in the late ’70s looked at individuals who had sleep disruption and found that that sleep disruption was strongly correlated with global pain symptoms all over.

He was able to induce this type of process in a laboratory where he placed 12 or 13 medical students, monitored them via sleep EEGs, and just prior to them getting into what's called deep or slow-wave sleep, he woke them up with a buzzer. After three days of doing this, 12 out of the 13 students had global pain all over — just like patients with fibromyalgia.

So this was an important early study showing that regular, restorative sleep was very important in the pathogenesis of fibromyalgia. Another landmark study was from Russell and colleagues — this was in the 1990s, 1994 specifically — where they showed that individuals who met a diagnosis of fibromyalgia consistently had elevated levels of a certain neuropeptide called substance P in their cerebrospinal fluid. This was compared to non-pain controls, and this finding has been repeatedly shown.

So this was evidence that earlier generations didn’t have — showing that individuals who complain of chronic pain, but whose pain is unseen because you don’t see any actual physical changes, do have measurable changes in neurochemicals. That was substance P.

And one other study that I’ll mention — by Gracely and others — looked at what we call functional magnetic resonance imaging (fMRI). What they were able to show is that in pain centers in the brain, specific areas involved in understanding pain signals showed changes in blood flow in patients with fibromyalgia during times when they experienced pain, compared to normal controls.

So with more novel testing over the years, we've been able to actually document that, yes indeed, when patients with fibromyalgia complain of pain, there are true neurochemical and blood flow changes occurring in pain processing centers that validate the symptoms they’ve been describing for decades.

Pathak: So then, can you help talk us through some of the very common complaints, common symptoms, and what that typical journey looks like for a patient before they even know they have fibromyalgia — and what brings them to you?

Hackshaw: So pain is probably number one on the list. Patients will complain of global pain. And when we think about global pain, we're thinking about pain in all four quadrants. So if you think of the body as two arms and two legs, that's your four quadrants, if you will. And typically, when we examine patients, we are able to show evidence of what we call hyperalgesia. What does hyperalgesia mean? It means that when you press in a particular area, you experience or display an exaggerated response to normal pressure in those areas. So patients have pain all over, and that is one of the, I would say, defining concepts of fibromyalgia.

Global pain as opposed to localized pain, because if patients have localized pain, we don't call it fibromyalgia. Instead, we use the term myofascial pain syndrome if someone has pain in just the shoulder girdle or the hip girdle, but nowhere else — that's a myofascial pain syndrome. And local pain should be treated locally, but global pain we have to choose as global discomfort.

Now, in addition to that, patients can have a whole list of other complaints, including sleep disruption and autonomic dysfunction. So with autonomic dysfunction, you can have irritable bowel, alternation between diarrhea and constipation. You can have an irritable bladder, such as burning when you urinate, but not actually an underlying urinary tract infection. Typically, it falls into the category of what we call interstitial cystitis. Patients can have temporomandibular joint dysfunction, where they're having difficulty in the TMJ joints, repeatedly, maybe associated with some teeth grinding or things of that nature.

Other associated symptoms include a lot of what we call central sensitization syndrome — so itching, migraines, dyspepsia, cognitive issues like cognitive processing problems, amongst others. Sleep disruption, of course. And the sleep disruption can lead to fatigue and things of that nature. So there’s a laundry list of complaints that patients with fibromyalgia will experience, with the key focus being pain, but then with the other symptoms that are more associated with this dysautonomia that they experience.

Pathak: In terms of a typical journey before a patient comes to your office really seeking this diagnosis for fibromyalgia — is this something that might take years given all of the different sorts of symptoms, some of them being somewhat vague? Can you tell us about the typical journey of someone getting to your office? How long does that usually take?

Hackshaw: Yes. So there are many studies that have looked at this, and some patients do indeed have to search for years. That’s because fibromyalgia is often considered a rule-out condition. Many patients, for example, might be concerned that they have something with a great deal more morbidity than fibromyalgia.

For example, a common one is patients are concerned that they may have multiple sclerosis. They are trying to cover all the bases, and then when I tell them that fibromyalgia appears to be the case, sometimes there’s not satisfaction with that diagnosis. They want more. So more studies lead to higher healthcare costs, and that leads to a bigger burden on society, of course. So that is probably, more than anything, what adds up in terms of the years of time, and it really attests to the reason why a specific biomarker for fibromyalgia is essential — to cut down on this search for other answers.

Pathak: So can you tell us then a little bit about how you diagnose fibromyalgia?

Hackshaw: I would say most rheumatologists lean heavily on the American College of Rheumatology criteria. It has gone away from simply using tender points for evaluation of fibromyalgia and instead uses two indexes. One is called the Widespread Pain Index, and the other is the Symptom Severity Index.

The Widespread Pain Index lends itself to the previous pain tender points that we would commonly, characteristically use, and individuals need to have pain in greater than seven areas. And then, with regard to the Symptom Severity Index, we are asking other specific questions. For example, do they have cognitive issues? Do they have itching? Do they have temporomandibular joint dysfunction? Do they have bladder issues? Bowel issues? Do they have migraines, amongst others?

And so, a compilation of both the Widespread Pain Index and the Symptom Severity Index together will give us a global picture of whether someone meets the threshold for what we classify as fibromyalgia or not.

Pathak: So can you tell us a little bit about what types of blood tests, if any, are available? You mentioned that there were tests of fluid, which seem more like research studies — tests of cerebrospinal fluid — but that is probably not available to the general public. So what tests are available, and what do you see on the horizon?

Hackshaw: So currently, there are no tests that are available. I mentioned earlier about functional magnetic resonance imaging that shows changes in blood flow to portions of the brain. That is obviously something that is only done on a research basis. Similarly, we don’t do spinal taps looking at cerebrospinal fluid levels in patients with fibromyalgia.

There are ongoing studies aimed at trying to develop biomarkers with minimal blood. For example, there is a process called vibrational spectroscopy, where small amounts of blood can be assessed via infrared or Raman spectroscopy to see whether there are certain vibratory patterns in the proteins that would yield what’s called a characteristic metabolic fingerprint for individuals with fibromyalgia. Those studies are ongoing. It’s not something that is globally available yet, but in the future, that’s a possibility. And if it were something that achieved its end in point-of-care testing, then that would be something useful even at the bedside — to definitively tell if someone has fibromyalgia versus other similar conditions like long COVID, chronic fatigue syndrome, or many others that mimic these types of symptoms.

Pathak: So if someone suspects that they have fibromyalgia, how should they start in terms of accessing the healthcare system? Where should they go? What’s their first point of contact?

Hackshaw: Their various point of contact should always be their primary care physician. Then you can proceed to a next step, such as going to an internist or a specialist.

Pathak: How do you find fibromyalgia impacting patients mentally and emotionally, given, as you said, it's an unseen condition? There aren’t really biometric tests available currently. How do you find patients with regard to mental and emotional concerns?

Hackshaw: Fibromyalgia, like many chronic pain conditions, will have a higher prevalence of depression and anxiety than you might see in the normal, non-pain population. So you will have a fair amount of comorbid depression, a fair amount of comorbid anxiety as well, and that needs to be treated in addition. Although we’ve been talking about fibromyalgia in a primary sense, any individual with another chronic condition is more prone to develop secondary fibromyalgia as well, and the treatment of that secondary fibromyalgia oftentimes is not simply to treat the primary disorder. Secondary fibromyalgia has to be treated as well.

And I would say that the treatment of that secondary fibromyalgia is often the biggest pain driver for that individual. So, for example, in an individual with rheumatoid arthritis, we as physicians are treating the rheumatoid arthritis the best way we know how with our various disease-modifying agents or biologic treatments, and we see no joint swelling, but the patient continues to have global pain all over. The correct answer is not to increase the immunosuppression, but instead to specifically target the fibromyalgia, and that is with those fibromyalgia-specific medications.

Pathak: And can you talk to us a little bit about the treatment options currently available for fibromyalgia itself?

Hackshaw: There are several treatment options. First and foremost, however, would be getting the patient on an exercise program that is suited to them. We have to be very careful that we are not overexerting individuals, because many patients with fibromyalgia will experience what’s called post-exertional malaise.

That is, as a result of overusing muscles that are not able to be overused, they experience an exacerbation of their symptoms that can last weeks or longer. Post-exertional malaise is most frequently seen in an analogous condition, myalgic encephalomyelitis, or chronic fatigue syndrome, but you see it as well in fibromyalgia and in long COVID. So we have to be very careful about how the exercise is prescribed, but exercise should still remain the base.

What I typically tell patients is I give them several exercises to work on, and I ask that they do at least 30 minutes a day, six days a week. And I emphasize to them, I’m not trying to get them ready for the Olympics; I’m just simply trying to get them moving every day, moving their muscles so that they are not becoming too overly sedentary.

So that’s number one. After, if someone has been faithfully adhering to that type of a pattern and they are still having symptoms of pain, fatigue, et cetera, that’s when we start talking about the various medications. My emphasis to patients is that they should expect these medicines to improve symptoms by about 50%. We don’t have anything that can improve it 100%, but we try to get to a point where individuals are able to self-manage and adjust the medications as necessary.

There are now four FDA-approved medications for fibromyalgia. We have medications that target serotonin and norepinephrine reuptake inhibition, and that medication would be duloxetine. Another one in that category of SNRI is milnacipran. Both of those are FDA approved.

What that means is that they did enough studies in the fibromyalgia-specific population and were able to show statistically significant improvement compared to a control group. It doesn’t mean that they are the only medications in that class that might work in this type of condition.

Other medicines that are FDA approved include agents in the voltage-gated calcium blocker category, and the specific agent that has been FDA approved is called pregabalin. These and similar-acting medicines are agents that we use in treatment. However, other medicines have been shown to be helpful.

So tricyclic antidepressant-type agents have been used. Generally speaking, what we call SSRIs—selective serotonin reuptake inhibitors—are generally not as helpful because they are not as effective for the pain component. One other medicine that has been recently FDA approved for fibromyalgia is a muscle relaxant. That particular medicine has been around for many years. Structurally, it looks very similar to tricyclic agents, but the medicine is basically cyclobenzaprine that is now administered sublingually.

So, over the years we have had this available, but it has been administered as an oral tablet. There are more medicines that are coming out and are available for use.

Pathak: It’s interesting to know that there are tools in the toolbox, and it’s also interesting with regard to the 50% symptom improvement being the initial goal that you’re heading toward. Is that symptoms of all kinds? Is that just predominantly the pain symptom that you’re looking for improvement on? Or are you also going to sort of see all of those symptoms improve together—that constellation of symptoms improve together?

Hackshaw: So one of my main goals when I treat patients is to try and make their expectations realistic. I mentioned that I focus on four domains: pain, fatigue, sleep, and cognitive. And I ask patients what area is most distressing to them. Then, based on the tools in my toolbox, I use medicines that might be specifically geared toward helping in the particular domain that the patient identifies.

So if it was pain and fatigue, then perhaps an SNRI dosed in the morning might help with the pain and might give them a boost throughout the day. If it was a sleep problem, then perhaps a tricyclic agent geared more toward sleep later at night might be what I would propose. But I ask them to focus on the specific domain.

And when I’m asking them about 50% improvement, it is in the domain that we targeted. Sometimes we have to use a second agent, but my goal is always—if I am having to prescribe—to target the domain that the patient identifies as the most troublesome for them.

Pathak: That’s very, very helpful. So how do you talk to your patients about the long term? You mentioned sort of expectation setting, but how do you talk to them about living over the next 10, 15, 20 years with the condition?

Hackshaw: That is a question that comes up quite frequently, and I explain to patients that fibromyalgia is a chronic condition. I also explain that fibromyalgia should not be decreasing their life expectancy at all, and so the emphasis is always on trying to make the patient self-independent, given the tools that we provide them—where they can adjust their exercise, perhaps adjust their medications within certain parameters to help with the ups and downs of the symptoms as they go along.

For example, if someone was on a tricyclic agent and they were dosing it at nighttime, and we had a barometric pressure change or they had a stressful event that exacerbated their pain symptoms, I usually will give my patients a window of 10 to 20 milligrams that they can adjust up in dosage for a set period of time. When the symptoms come back under control, they can adjust it back down to where they had it previously, and that’s something that they can do on their own.

As they live with this condition, they may find certain exercises or certain adjunct treatments such as massage, acupuncture, et cetera, that are helpful in alleviating some of the symptoms, and that’s something that they can also go to. Maybe they found that there are some dietary changes that need to be adjusted, and it’s a very individualized type of thing. That’s something they can make adjustments to, so I try to give them the ownership to make the adjustments because they’re going to be dealing with this long term.

Pathak: What are some of the things that you are most excited about for the future? Are there innovations, whether that is in the space of diagnostics or in the space of treatments, that you're looking forward to learning more about?

Hackshaw: Yes, I'm most excited about innovations in terms of diagnostics. We are learning more and more each day about minimally invasive or noninvasive approaches to both diagnosing and treating fibromyalgia. Things like cutaneous, well, ultrasound-type treatments to certain brain centers.

Some of these treatments are close to being evaluated by the FDA, and they have been found to be relatively noninvasive. This is a delivery of ultrasound to specific brain centers in the brain. There are other things like what I alluded to earlier in terms of vibrational spectroscopy, where minimal amounts of blood can be used to identify a metabolic fingerprint that could become diagnostic.

One of the areas which I think would be particularly helpful is whether some of this technology could not only diagnose fibromyalgia but could distinguish it from its clinically similar, phenotypically similar other diseases like long COVID, chronic fatigue syndrome, or Gulf War illness, and similar types of conditions that are affecting a wide swath of individuals and lead to a lot of frustration for them.

Pathak: Well, in our last few minutes together, I'd love to close the episode by just asking you to share with our audience anything you think I missed asking you about, or any points that you really wanted to highlight for someone who is out there potentially not optimally managing their fibromyalgia — and just your tips to living a better life.

Hackshaw: I think I'd really like to emphasize the role of exercise and mobility and avoiding being sedentary. This is key for individuals with fibromyalgia. I also want to emphasize the prevalence of fibromyalgia. It is a very common condition, and even if you have another underlying disease like lupus or rheumatoid arthritis, don't dismiss fibromyalgia, because fibromyalgia could be the main driver of your underlying pain.

As a result, the appropriate treatment for whatever is ailing you might not be specifically increasing those steroids, et cetera, but maybe giving you more targeted treatment for the fibromyalgia. I think those are my main points.

I know that there might be a significant number in your audience who might have heard of other adjuncts like low-dose naltrexone and things of that nature. There’s a role for those medications as well — they might be helpful in sleep. Some people have found them to be helpful in pain. It's something that you should certainly discuss with your practitioner to see whether that might play a role in your treatment. So I think those are the main points I wanted to make.

Pathak: Thank you so much for your time. I really appreciate this conversation.

Before we close today’s episode, I want to leave you with three key takeaways from this important conversation with Dr Hackshaw about fibromyalgia.

First, fibromyalgia is real, and it’s more than just unexplained pain. We now have decades of research that validate what people have long known. This is a chronic pain amplification syndrome with real, measurable changes in the body.

Second, diagnosing fibromyalgia is still a journey, but there are clear criteria to help guide it. Doctors today look at widespread pain patterns combined with other symptoms like fatigue, sleep disruption, and cognitive changes. While there isn’t a simple blood test to diagnose fibromyalgia, ongoing research into biomarkers could soon shorten the long and frustrating road many patients face.

And third, management is about setting realistic goals and building a personalized plan that works for you. Regular exercise tailored to avoid flare-ups remains the foundation. Medications can help improve pain, sleep, or fatigue by almost 50%, but it’s still important to partner closely with your healthcare team to target the symptoms that are the most impactful in your life.

If you or someone you love is struggling with fibromyalgia, I hope this discussion gave you both validation and practical tools for moving forward.

To find out more information about Dr Hackshaw and fibromyalgia, make sure to check out our show notes. Thank you so much for listening. Please take a moment to follow, rate, and review this podcast on your favorite listening platform.

If you'd like to send me an email about topics you are interested in or questions for future guests, please send me a note at [email protected].

This is Dr Neha Pathak for the WebMD Health Discovered Podcast.