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. Donna Gregory Burch Dr. So, what is this critical message? Based on the research and Dr. 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. Read on for my interview with Dr. This article contains affiliate links. You mentioned in a recent podcast that the diagnostic criteria for fibromyalgia make it prone to overdiagnosis. Can you elaborate on that?
The original diagnosis criteria for fibromyalgia [came out] in , 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 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 , new modified criteria was again published by the American College of Rheumatology. It was subsequently modified a little bit in , 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.
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.
They had some other condition which was responsible for their symptoms. 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. 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. 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. What are the most common conditions misdiagnosed as fibromyalgia? 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.
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.
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. 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. 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. The Fibro Fix, by Dr. 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. There are diagnostic criteria. I have some presentations there. 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? What that means is the problem is in how you process pain [and other sensory information coming into the body]. 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.
You generally are profoundly fatigued, mainly because of the sleep dysfunction, and you have a hard time thinking straight. They often had difficult childhoods. 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 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]. We also have to clean up their diet. We have to get them eating whole, fresh foods. De-emphasize inflammatory, processed foods. We do various kinds of tests to find those things.
It may be gluten, it may be dairy, it may be other things. 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. 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.
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.
Can you explain what functional medicine is and why it might be beneficial for a fibromyalgia patient to work with a functional medicine practitioner? 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 look at their function across the spectrum from total health all the way to disease. There are many shades of gray between those. Functional medicine doctors are probably the best positioned to be able help you through that.