By Donna Gregory Burch
When I stumbled upon my first podcast with Dr. David Brady last year, I knew I had to bring his important message to the fibromyalgia community here at National Pain Report and to my readership at my blog, FedUpwithFatigue.com.
Dr. Brady’s message is one that I wish I had heard years ago when I was struggling with my first fibromyalgia symptoms, and it’s a message that hit me personally last spring when I was diagnosed with chronic Lyme disease.
So, what is this critical message? Based on the research and Dr. Brady’s many years of expertise, it’s incredibly likely that you don’t have fibromyalgia. Yeah, you read that right. According to at least one research study, up to two-thirds of us may have been misdiagnosed with fibromyalgia.
How it that possible? The fibromyalgia diagnosis criteria are so general that lots of people have been labeled with fibromyalgia when they actually have other conditions.
Think about the implications of that. What that means is that millions of us who have been diagnosed with fibromyalgia may not be receiving the correct treatment and we may even be living with treatable conditions.
The rampant misdiagnosis of fibromyalgia is one of the focuses of Dr. Brady’s new book, “The Fibro Fix.”
So, I bet you’re wondering: If you don’t have fibromyalgia, what else could it be? Read on for my interview with Dr. Brady. In our interview, we’ll discuss why fibromyalgia is so prone to overdiagnosis, and he’ll identify some of the most common conditions mislabeled as fibromyalgia. He’ll also explain the characteristics of true fibromyalgia and best practices for treatment.
I’ll warn you: The interview is long, but it’s well worth the read!
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National Pain Report: You mentioned in a recent podcast that the diagnostic criteria for fibromyalgia make it prone to overdiagnosis. Can you elaborate on that?
Dr. Brady: The original diagnosis criteria for fibromyalgia [came out] in 1990, and it was established by an expert panel of rheumatologists with what was considered to be the best training and knowledge of fibromyalgia and global pain syndromes. It was called the ACR criteria for the American College of Rheumatology, and they basically locked a bunch of experts in a room and said they’re not coming out until they come up diagnostic criteria for this thing called fibromyalgia.
This panel of experts tried to codify what is fibromyalgia, what are the minimum criteria, and that’s where you got that first situation where the 18 points had to be challenged with pressure, and 11 out of 18 had to be positive [for a diagnosis of fibromyalgia]. It really was a negotiation in a conference room of how many points should you test, how many should be positive out of the number you tested, and it was not a very scientific process.
It basically resulted in criteria where people for various reasons who may have a lot of pain, particularly pain in the muscles around the body – even if it was caused by problems actually in the muscles themselves [like] some sort of myofascial pain syndrome or some sort of orthopedic or musculoskeletal problem – easily fit into that criteria. It was appreciated very early on that this criteria was very prone to overdiagnosis.
Then in about 2010, new modified criteria was again published by the American College of Rheumatology. It was subsequently modified a little bit in 2011, and the biggest change was they took away the requirement for the doctor to go around and challenge or push with pressure on all of these specific areas of the body. Instead they relied on a questionnaire where the patient checked [off] if they had pain in those areas, which is prone to even more overdiagnosis because it’s a subjective questionnaire.
The criteria did bring in a lot of the associated or concomitant issues that you see in fibromyalgia like depression, anxiety, unrefreshed sleep, irritable bowel syndrome, headaches, that the disorder had to be long-standing and chronic, meaning it had to be several months at least in duration, and that it couldn’t be explained by another medical condition.
Some people say it was a leap forward, and that’s what publishings by the American College of Rheumatology … suggest, although other studies suggest this criteria was also extremely prone to overdiagnosis. In a large study by [Mary Ann] Fitzcharles, one of the fibromyalgia experts in the world, using the original criteria, they found that if you had subjects who were diagnosed or labeled with fibromyalgia by family physicians, internal medicine doctors and even rheumatologists, when they were then sent to an expert panel of fibromyalgia rheumatologists, they only supported the original diagnosis of fibromyalgia about 33 percent of the time. What that means is 66 percent of patients diagnosed with fibromyalgia really didn’t have it! They had some other condition which was responsible for their symptoms. That’s worse than a coin flip, right? You’d be better off flipping a coin to determine if someone had fibromyalgia or not, so clearly it’s just not a good enough criteria.
Now there’s a brand new criteria that just came out in 2016. It’s only a mild tweaking of the 2011 criteria. It’s still prone to vast overdiagnosis. There’s still a lot of people who think they have fibromyalgia who do not. Saying that, I don’t want it to be misinterpreted that I’m doubting the sincerity of these folks and that I’m doubting that they have real problems because generally they do. Despite what some doctors might think, these people have better things to do in their lives than just make up these symptoms. They have real problems. They just don’t necessarily have fibromyalgia.
Aside from the diagnostic criteria, which is obviously flawed, are there other reasons people are way overdiagnosed with fibromyalgia?
Some of the symptoms that make up the profile of a fibromyalgia case are extremely ubiquitous in our population, meaning they are extremely common, like long-term persistent fatigue, achiness in the muscles, vague gastrointestinal complaints, mild depression, mild anxiety, insomnia. These things, taken individually, are extremely common. Therefore, when people tend to have a multitude of those problems that gang up on them, particularly if they are a woman in middle age, which is the prime potential person afflicted with fibromyalgia, there’s often a jumping to conclusions … that this person has fibromyalgia before they actually do a systematic workup … to really tease out … why are they fatigued, why do they have pain or achiness, why do they have insomnia, why do they have gut problems.
If you don’t run down all of the other causes for it, you really can’t diagnose fibromyalgia because one thing has been consistent among all the criteria over the years is it’s a diagnosis of exclusion. What we mean by that in medicine is that you have to first rule out every other potential cause of the symptoms before you would ever label it as fibromyalgia. Certainly, the layperson doesn’t do that, and unfortunately most physicians don’t do that before they put that label on somebody.
What are the most common conditions misdiagnosed as fibromyalgia?
I talk about what I call the triad of fibromyalgia masqueraders in my book, “The Fibro Fix.” The first one is actually an undiagnosed problem with thyroid function. It’s usually a hypothyroidism. It could be based in an autoimmune thyroid condition like Hashimoto’s disease, but it’s not always an overt, classic hypothyroidism that might be picked up by your family physician or by a conventional lab test just looking at a TSH level or a T4 level. Sometimes you have to dig a little deeper and look into thyroid physiology with a more complex understanding of it, on how the hormones are converted and how they work with the receptors.
A second one is when you’re having trouble in the cells of your body making energy or the currency of energy called ATP, or adenosine triphosphate, you’ll be energy deficient. Your cells will be starving for energy, and this occurs in little organelles in the cell called mitochondria. The mitochondria are like the little energy plants of the cells. They can be really damaged by things like long courses of antibiotics. Certain types of antibiotics, like the fluoroquinolone class of antibiotics, like Cipro, for instance, are really poisonous to mitochondria, but many other medications are harmful to mitochondria, including cholesterol-lowering drugs called statin drugs. They can really do a lot of damage to the mitochondria and the biochemistry of the mitochondria because they can cause profound CoQ10 deficiency, which is really important in mitochondrial biochemistry for energy production.
[Other causes for mitochondrial dysfunction include anemia and respiratory issues, like COPD.]
No. 3 is actual problems in the muscles themselves – what we call myofascial pain syndrome [and other musculoskeletal conditions]. This is where the problem actually resides in those somatic soft tissues around the body. Wherein true, classic fibromyalgia, even though you may be achy in the muscles, the problem is not in the muscles; the problem is in the brain. It’s in how your brain and the central nervous system interprets sensory information and sort of overexaggerates or amplifies the information. If you really have fibromyalgia, therapies directed toward the muscles or the body – whether it’s massage or chiropractic manipulation or physical therapy or ultrasound or acupuncture – generally don’t help at all. The problem is not where they’re treating. The problem is deep in the brain.
If you have myofascial pain syndrome, those kinds of therapies do help a lot of people. If you really feel better and respond to those hands-on therapies, then your problem is not likely to be fibromyalgia. It’s more likely to be myofascial pain syndrome. And you’re not as likely to have things like anxiety, depression, unrefreshed sleep, even irritable bowel syndrome, as much.
[There’s a] fourth one I’ll throw in because it’s about to rise to the other three. [It’s the] misdiagnosis of Lyme and other tick-borne illnesses. These organisms can cause a lot of symptoms that can make someone be inappropriately labeled with fibromyalgia.
If someone is having fibromyalgia symptoms, what advice can you give to help them get the right diagnosis?
If you think you may have fibromyalgia, you have no choice other than to become a very informed healthcare consumer. You have to become essentially your best health advocate for yourself because the [healthcare] system generally is not going to do you much justice. You’re probably going to get mistreatment, misdiagnosis, [based on] what the averages say.
So I would start, and I say this honestly, not in a self-serving way, but I would probably start by reading my book, “The Fibro Fix,” because I wrote it just for this reason to educate people to be their own best health advocate.
If they think they might have fibromyalgia, [the book will help them] have a greater understanding of what fibromyalgia is, what it isn’t, what are the characteristics of real, classic fibromyalgia, what are the other things it might be and how they can start to differentiate for themselves what bucket or camp they might be in. We do that through a series of questionnaires and making you self examine your situation, your past medical history, your stress situation and many other things to help you make that determination.
We try to guide you toward ways to find the right healthcare practitioner if you need help navigating this further. We give examples of what kinds of tests you might want to have them run and things to try on your own. The book is really about self-empowerment and everything you can do on your own to help recover from this situation that you find yourself in.
Also on my website, FibroFix.com, there are a lot of resources. There are questionnaires. There are diagnostic criteria. In the media tab, there’s also a lot of different interviews where I had time to go in-depth on some of these [issues]. I have some presentations there. I have articles and even medical papers I’ve written to help people learn as much as they can.
Also, last June I did a weeklong in-depth dive into fibromyalgia called the Fibro Fix Summit. I had about 35 experts from around the world in healthcare and also some patients who have a connection to fibromyalgia. Many of these experts are not only experts in fibromyalgia, but are experts in things that get misdiagnosed as fibromyalgia. I have experts in Lyme, I have experts in mitochondrial dysfunction, I have experts in thyroid, I have experts in myofascial pain syndrome. The Fibro Fix Summit is still available [via] digital access …or to order it on a flash drive.
How do you define classic fibromyalgia?
Classic fibromyalgia is …a central pain processing disorder. What that means is the problem is in how you process pain [and other sensory information coming into the body]. In fibromyalgia, it’s not processed correctly. It’s sort of amplified, if you will, and over interpreted. Things that would not normally be interpreted as painful are painful, and things that would be mildly painful would be interpreted as significantly painful.
In classic fibromyalgia, the way this information is processed is fundamentally flawed deep in the brain and the central nervous system. There are many hypotheses on why that can happen over time, but the classic fibromyalgia patient also has these other elements that are a signature of a central sensitivity disorder. A lot of times we use the word hypervigilance, meaning their nervous system is hypervigilant to impending threat or harm. Their nervous system is always in a sort of fight or flight emergency panic mode, and over time everything amplifies and becomes catastrophic.
You see not only upregulation in pain perception, but you see things like anxiety, panic attacks, inability for the nervous system to rest during sleep, to go through all the normal sleep cycles, including restorative stage 3 and 4 delta-wave sleep. People with fibromyalgia may sleep for 14 hours, but they wake up feeling like they’ve never slept because they never go into the deep, restorative stages of sleep because their nervous system won’t rest enough and be secure enough to go into those restorative stages of sleep.
[In classic fibromyalgia, it’s also common to have] an upregulated motility or down regulated motility of the bowel, so you get irritable bowel syndrome. You get gassiness, bloatiness, constipation, diarrhea, or an alternation of constipation/diarrhea is very common.
You generally are profoundly fatigued, mainly because of the sleep dysfunction, and you have a hard time thinking straight.
We look for all of those things in classic fibromyalgia, and generally there’s also a significant stress history. It’s not uncommon that these [patients] with classic fibromyalgia have had significant stress, trauma or difficulties in their early life when their nervous system was learning to deal with their environment. They often had difficult childhoods. They’re children of acrimonious divorces or [had] substance-abusing parents. [There was a lot of] yelling [or abuse]. [They often had] authoritarian parental figures … or sometimes they’re victims of verbal abuse, physical abuse, sexual abuse. I don’t mean everyone with classic fibromyalgia is an abuse victim, but they have a much higher incidence of not exactly the most secure, loving, safe, idyllic upbringing as others.
How do you treat classic fibromyalgia?
You have to put together a whole plan, and I go through that in my book. You have to deal with it on a multitude of fronts. You have to deal with the hypervigilance of the nervous system. We use meditation. We use things like guided imagery or deep breathing exercises. Sometimes we actually use real-time EEG brain-wave analysis where we, through audio tones and different kinds of relaxation techniques, teach the person how to retrain their brain into more calming states of brain-wave function. We sometimes use heart-rate variability training to help calm the mind and nervous system. That can be done in office on different systems, but also now on apps through your [cell phone or tablet]. Sometimes we have to use some sort of therapeutic intervention with a counselor or psychologist, particularly if there’s been a history of abuse.
We also have to clean up their diet. We have to get them eating whole, fresh foods. De-emphasize inflammatory, processed foods. De-emphasize things that they may have a unique immunological intolerance to where it’s fueling inflammation. We do various kinds of tests to find those things. It may be gluten, it may be dairy, it may be other things. It’s really somewhat individualistic.
We also then have to work biochemically on the nervous system itself. We use things to normalize or optimize some of the neurotransmitters and hormones. We have to optimize thyroid function. We have to oftentimes rebuild and rejuvenate the stress response and adrenal function.
We almost always in classic fibromyalgia have to take a look at and balance out some of the neurotransmitters like serotonin, like GABA, like dopamine. We can do that in various ways with natural interventions with botanicals, nutraceutical precursors, amino-acid therapy. Sometimes we resort to prescription medications in various classes, but usually we try to avoid that.
We use a lot of things to modulate serotonin like 5-hydroxtryptophan. We’ll use melatonin to help with deeper sleep. We’ll use forms of GABA. We’ll use precursors to calming neurotransmitters like l-theanine. We’ll use things like inositol and phosphatidylserine, and a lot of calming, sedating botanicals like valerian, passiflora and hops. We’ll use German chamomile. There are a lot of combinations of things we’ll use based on a person’s specific situation and their response to things we try.
Why is it important to take a comprehensive approach to fibromyalgia treatment versus just taking pharmaceuticals?
The answer to that is simple: Because the pharmaceutical approach in and of itself does not work. That’s not me saying that out of experience, although I can and I do agree with that. That’s major meta-analyses saying this. [There’s a study that] looked at the two major classes of medications that have FDA approval for fibromyalgia. The two classes are basically the antidepressants – the serotonin and norepinephrine reuptake inhibitors – which two of the approved drugs, [Cymbalta and Savella], are in that class, and the alpha 2 delta ligands, which are basically recycled, repurposed antiepileptic drugs. The other drug approved for fibromyalgia, [Lyrica], is in that class.
Collectively, even if you make the assumption that the patient is diagnosed correctly with classic fibromyalgia, which is a big assumption, the use of these medications only results in statistically significant improvements in their functional state somewhere around 25 percent of the time. Of those [patients] who are lucky enough to have that beneficial effect, in at least 50 percent of those, the benefits basically fade away after several months of use, so you’re left with a high likelihood of side effects with those medications and not a high likelihood of positive effects.
I definitely use those [drugs] in some patients, but to think they’re a viable treatment in and of themselves just goes against all the evidence that we have. There’s no other option than to look at this comprehensively because that’s the only way you get these people better or at least even partially better.
You’re a practitioner of functional medicine. Can you explain what functional medicine is and why it might be beneficial for a fibromyalgia patient to work with a functional medicine practitioner?
Functional medicine doesn’t concentrate only on diagnosing overt end-stage disease and trying to treat it after it occurs. Rather than waiting for the horse to leave the stable and trying to put the horse back in the stable, we really concern ourselves with upstream interventions and upstream analysis of patients based on their own uniqueness, genomic potential, biochemistry and metabolism, and we try to keep them optimally healthy. We don’t wait until there’s such dysfunction that there’s disease. We look at their function across the spectrum from total health all the way to disease. Conventional medicine looks at either you have a disease or you’re healthy, and that’s just not true. There are many shades of gray between those.
In functional medicine, we’re looking at trying to assess you and move you toward your most optimal function, and that’s really what’s required, particularly if there’s a chronic disorder going on like fibromyalgia or another problem that might be inappropriately labeled as fibromyalgia.
Functional medicine doctors are probably the best positioned to be able help you through that. They do a lot more testing. They look deeper under the covers if you will for reasons why things are not working versus seeing you for three minutes, getting your list of things you’re complaining about and throwing drugs at you that may mask those symptoms … in a sort of band-aid kind of way.
I’m not against drugs. I’m glad we have them. I wouldn’t want to live without them, but I just think somewhere along the line we went off the rails, and whether it’s because of economics or the pharmaceutical industry shaping of the medical system, we got to some crazy point where the only solution is a synthetic drug or surgery or nothing.
Functional medicine doctors don’t stop at only those two options. We have a lot more options: life interventions, stress mitigation, changing your diet, making yourself less inflammatory, using a lot of medicinal properties of plants and botanical medicine and amino acids and nutraceuticals and nutritional supplements used at physiological therapeutic levels. There are so many different ways you can nudge the body toward a better state of health short of a synthetic pharmaceutical. We use all of those things when they’re appropriate based on a person’s individual situation.
What’s the best way to find a functional medicine practitioner?
Probably the best way is to go to the website for the Institute for Functional Medicine. There’s a “find a practitioner” tool [where] you can put in your zip code and find various practitioners who have training in functional medicine.
That being said, I’m not trying to imply that every functional medicine-trained physician would have the kind of expertise and knowledge in fibromyalgia that I do because they don’t. However, you’ve got a much better chance they’ll help you navigate through some of this maze than just your standard family physician.
Are you accepting new fibromyalgia patients?
I am in clinical practice in Fairfield, Connecticut, at Whole Body Medicine, and I do accept new patients. I have to see patients in my office the first time and establish them as a patient, and afterwards I can follow up with them remotely through phone, Skype and other types of management.
Donna Gregory Burch was diagnosed with fibromyalgia in 2014 after several years of unexplained pain, fatigue and other symptoms. She covers news, treatments, research and practical tips for living better with fibromyalgia on her blog, FedUpwithFatigue.com. You can also find her on Facebook and Twitter. Donna is an award-winning journalist whose work has appeared online and in newspapers and magazines throughout Virginia, Delaware and Pennsylvania. She lives in Delaware with her husband and their many fur babies.