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“Wow, I heard that now there is a test of the bacteria in your poop that can diagnose fibromyalgia!”
That was in a recent Facebook post from a person who has been suffering from fibromyalgia and got excited by a blog she had seen. It linked to a report about a report about some research, and said there was a new way to diagnose fibromyalgia. (The problem was, that yes, it was a report about a report).
The truth that got distorted came from a research study published in 2019 showing distinct differences in intestinal bacterial composition and metabolism in women with fibromyalgia, compared to women without fibro.Â
But we have to think carefully to understand what that means for people with fibromyalgia. Unfortunately, we can’t diagnose fibromyalgia with a stool test.
Sometimes writers with good intention distort the meaning of research because they donât understand how to interpret the data. Or perhaps they want to get attention and donât care so much about the truth. So they write compelling but misleading headlines.  So if you donât have a science background, it can be really hard to know whatâs real and whatâs distorted info-mercial.Â
The title of the article was “Altered microbiome composition in individuals with fibromyalgia”[1] in the journal Pain. June 2019. Â It’s a great study, and very important to the scientific understanding of fibromyalgia.
“Microbiome” is the name of the overall ecosystem of microbes (bacteria, yeast, and viruses) that live in your body. In the past 10-20 years there has been an explosion of research demonstrating how vast and important is the microbiome. The part of the microbiome that gets the most attention is the microbiome in the gut–the intestinal microbiome. That’s what this research studied.
Itâs the first time that it has been proven that people with fibromyalgia have different bacteria in their poop. And these bacteria are associated with differences in metabolism and important immune-modulating compounds in the blood of the subjects. These metabolic changes could be related to the symptoms of fibromyalgia.Â
It also showed that those differences correlated with the severity of fibromyalgia symptoms. Important difficult things like pain intensity, fatigue, sleep disturbance, and cognitive impairment.
Those are the basic research findings. Itâs really important and good news, as I will discuss later in this article. But it doesnât add up to diagnosing fibro.
Even the authors of this study say easy-to-misinterpret things like “furthermore, these results suggest that the composition of the microbiome could be indicative of the diagnosis of FM.” So to someone who really wants an objective test for fibro, they might think, “oh yeah, here it is, I’ve been walking around with an invisible illness and now we can get a definitive diagnosis!”.
Not so fast.
The authors said, âcould be indicativeâ. Thatâs research-speak for âwe have no firm conclusions, but I want to say something optimistic about the meaning of this researchâ.
The research compared people with fibromyalgia to healthy people. It tells us that something substantial and important is different about the biome of people with fibro compared to healthy people.   And together with a ton more research, this kind of test may be used to diagnose fibromyalgia, and yield effective treatments for fibromyalgia that even conventional MDâs will be willing to discuss.Â
It also adds credence to the notion that there are actual physiological abnormalities in fibromyalgia, and its not âjust all in your headâ.  We have plenty of evidence of real physiologic changes in fibromyalgia. But some boneheads are still stuck in the past and think itâs all psychological.Â
But the research didnât distinguish fibromyalgia from other painful conditions that might have similar symptoms with fibromyalgia.Â
Itâs kind of like showing that people with pneumonia have elevated white blood cell count. OK, so I know there is an infection. But an elevated white count doesnât help distinguish pneumonia from other things with elevated white blood cell count, like soft tissue infection, or kidney infection.Â
In the same way, these research findings donât distinguish fibromyalgia from neuropathy, arthritis, chronic myofascial pain, or other conditions that cause chronic pain and may well have changes in the biome.
The good news is that the research lends support to our understanding of fibromyalgia, and the way that many pro-active doctors and patients already treat and heal from fibromyalgia.Â
Alterations in the biome can be associated with a number of other physiologic changes, leading to inflammation, oxidative stress, mitochondrial dysfunction, and the symptoms of fibromyalgia. Many people with fibromyalgia will get significantly better when they do functional and lifestyle steps to correct dysbiosis and the intestinal permeability[2] that often accompanies it[3]. That kind of treatment rests on the assumption that dysbiosis is part of the problem in fibromyalgia. Now we have evidence to support that assumption. Thatâs good news!
This study provides evidence for one piece of the complex puzzle that is fibromyalgia.
Lets unpack the assumptions and principles that underlie this âfunctional and lifestyleâ approach to treating fibromyalgia. The past few decades have seen development of a few lines of research that support the approach, even if itâs not yet accepted by mainstream doctors. Research has shown that:
As you can see, itâs a pretty complex picture. This research demonstrates that people with fibro have dysbiosis. And that fits with these other abnormalities that can cause the characteristic symptoms. Hopefully further research will complete the picture so that more doctors see the multifactorial nature of fibromyalgia and other chronic diseases.
We can see how fibromyalgia is a multisystem dysfunction. How does it get started? Various genetic and early-life experiences can set the stage. Later in life, various events can âpull the triggerâ and start or accelerate one or more of these vicious cycles. And certain physiologic changes and lifestyle habits can perpetuate the process.
Based on those principles, there is an often-effective path of fibromyalgia treatment.   Itâs for people who are suffering and donât want to wait 20-40 years until we have a rock solid mechanistic picture and therapies that are proven in randomized controlled trials. They want to take reasonable, safe, and rational action based on the best currently available evidence. Does that sound like you?
Many of my colleagues and I accommodate that desire. Rather than just treating the symptoms with sleep medications or nerve-pain medications like Lyrica or Cymbalta, we take a multifactorial approach to address the dysfunctions described above. (Of course, sometimes symptomatic treatment with medications is appropriate. Each case is different.)Â
We evaluate various antecedents, triggers, and perpetuating factors that can contribute to the physiologic changes and symptoms of fibromyalgia.  We look at fibromyalgia as a complex systems process that develops over time, like water flowing downstream.  Treatment involves addressing those physiologic changes directly, going âupstreamâ as far as possible toward the actual roots of the physiologic dysfunction.
Summing up, the new data about biome changes in fibromyalgia support the role of dysbiosis and intestinal permeability in fibromyalgia. It doesnât yet help us diagnose fibromyalgia.  More research is needed to definitively understand these issues. In the meantime, evidence from small clinical trials, basic science, and much anecdotal evidence support a multifactorial approach to correcting underlying physiologic issues, and improve symptoms and quality of life in fibromyalgia.
Iâll be discussing this approach to âheal the gut and reduce inflammationâ, as well as other aspects of fibromyalgia management in future blog posts. You can sign up to get notification of future posts by clicking here.
[1] âAltered Microbiome Composition in Individuals with Fibromyalgia:â PAIN 160, no. 11 (November 2019): 2589â2602. https://doi.org/10.1097/j.pain.0000000000001640.
[2] âAltered Intestinal Permeability in Patients with Primary Fibromyalgia and in Patients with Complex Regional Pain Syndrome.â https://doi.org/10.1093/rheumatology/ken140.
[3] âAn Insight into the Gastrointestinal Component of Fibromyalgia: Clinical Manifestations and Potential Underlying Mechanisms.â https://doi.org/10.1007/s00296-014-3109-9.
[4] Intestinal permeability â a new target for disease prevention and therapy. https://doi.org/10.1186/s12876-014-0189-7
[5] Intestinal Permeability and Its Regulation by Zonulin: Diagnostic and Therapeutic Implications. https://doi.org/10.1016/j.cgh.2012.08.012
[6] Increased serum IgA and IgM against LPS of enterobacteria in chronic fatigue syndrome (CFS): Indication for the involvement of gram-negative enterobacteria in the etiology of CFS and for the presence of an increased gutâintestinal permeability. https://doi.org/10.1016/j.jad.2006.08.021
[7] Cytokines, Inflammation, and Pain: https://doi.org/10.1097/AIA.0b013e318034194e
[8] Neuroinflammation and Central Sensitization in Chronic and Widespread Pain. https://doi.org/10.1097/ALN.0000000000002130
[9] Mast cells, glia and neuroinflammation: partners in crime? https://doi.org/10.1111/imm.12170
[10] Reduced Pro-Inflammatory Cytokines after Eight Weeks of Low-Dose Naltrexone for Fibromyalgia. Biomedicines 5, 16. https://doi.org/10.3390/biomedicines5020016
[11] Palmitoylethanolamide in Fibromyalgia: Results from Prospective and Retrospective Observational Studies. Pain Ther 4, 169â178. https://doi.org/10.1007/s40122-015-0038-6
[12] Â Mind-Body Medicine: State of the Science, Implications for Practice. https://doi.org/10.3122/jabfm.16.2.131
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