Over the past few weeks, my Facebook feed has been inundated with an article entitled, “Fibromyalgia mystery finally solved! Researchers find main source of pain in blood vessels.”
I didn’t think too much about it at first because I knew this was an old news article from 2013. As far as I knew, nothing had ever transpired as a result of the research.
But then, the article kept showing up again and again and again. I even had a few readers and friends email it to me, asking if it was legit.
The short answer is yes and no.
I’m sorry to disappoint, but no, researchers have NOT solved the mystery of fibromyalgia. If they had, you would be seeing news articles about it in the New York Times, USAToday and similar mainstream publications. Instead, the “mystery solved” article is being circulated on numerous clickbait sites, which plagiarized the original article from 2013 and are now circulating it as if it’s new information. Undoubtedly, these sites are making some hefty advertising dollars off desperate fibro warriors who are clicking on the article in hopes of finding a cure. (Click here to read more about how these clickbait sites are targeting the chronically ill.)
After I started seeing the plagiarized article so much, I decided to reach out to two of the actual researchers, Dr. Frank Rice and Dr. Phil Albrecht from Integrated Tissue Dynamics (INTiDYN), to see if they’d followed up on their initial study. As expected, I learned the “mystery solved” article oversimplifies and overexaggerates the researchers’ findings, but their study is still interesting and worth a second look.
In the original article, the reporter writes, “…but scientists have now revealed that the main source of [fibromyalgia] pain stems from a most unlikely place – excess blood vessels in the hand, legs and foot. … There is a direct link between these nerves and the widespread body pain that fibromyalgia sufferers feel.”
The truth is it’s too early to say if there’s a “direct link” between these “excess blood vessels” (which is technically inaccurate) and fibromyalgia pain. The small 2013 study involved biopsying a small section of skin from the hands of 24 female fibromyalgia patients and nine healthy controls.
“What the team uncovered was an enormous increase in sensory nerve fibers at specific sites within the blood vessels of the skin in the palms of the hands,” read an INTiDYN summary of the study. “These critical sites are tiny muscular valves called arteriole-venule (AV) shunts, which form a direct connection between arterioles and venules. The discovered pathology involving the nerve endings to the shunts provides a logical explanation not only for extreme tenderness in the hands but also for the widespread deep pain and fatigue symptomatic of fibromyalgia. … Of perhaps more importance, the excess sensory fibers on the AV shunts could interfere with the regulation of blood flow throughout the body including [in the] deep tissues [and] … muscles.”
Following the publication of the 2013 study in the journal Pain Medicine, “we did some limited initial follow-up work … investigating potential roles of the estrogen receptor system, which are known to impact the sensory innervation we described as pathologic in our [fibromyalgia] cohort,” Albrecht explained. “A portion of that data was presented [to] the Society for Neuroscience in 2014 but received little attention at the time and remains as unpublished findings.”
Unfortunately, research on the potential AVS/fibromyalgia connection has stalled due to lack of funding.
“We have tried to get funding from NIH [National Institutes of Health] to extend the study to male fibromyalgia patients in collaboration with the Pain Research Center at the University of California San Diego, but were unsuccessful with two attempts,” Rice said. “At this point we are still trying to raise the necessary funding.”
Rice believes funding has been stonewalled because of previous research linking fibromyalgia to a malfunctioning central nervous system.
“Our discovery received two opposite responses,” Rice said. “It was embraced by patients as well as many in the pain research community who were open to new ideas and discoveries. But the other reaction was resistance by many of the experts on fibromyalgia who had dedicated years of research to this disease and who were convinced and insistent that fibromyalgia was the flagship example of pain that is solely due to a central nervous system (CNS) disorder referred to as central sensitization.”
The three drugs approved by the U.S. Food and Drug Administration – Lyrica, Cymbalta and Savella – all affect the CNS in some way. If it was found that fibromyalgia is not a CNS disorder, then that would eliminate physicians’ reasoning for prescribing these drugs. It would also help to explain why they help only about one-third of fibro patients.
(Ironically, Eli Lilly and Company, the maker of Cymbalta, helped to fund the 2013 study.)
“There is still a lot of additional data yet to be analyzed from the study, which exists in our hands, particularly the alignment of clinical symptoms with the vascular pathology,” Albrecht said. “Those types of analysis work are being done as we can get to it. However, other time and financial priorities delay research on that front.”
“We have been chipping away and have some new information on fibromyalgia but haven’t had much to publish since our first study,” Rice added. “We will have something before the end of this year. … Our only limitation for fibromyalgia [research] is funding.”
INTiDYN specializes in skin, nerve and pain research. The company just recently completed a major study on diabetic neuropathy and will release findings from a study on postherpetic neuralgia later this year. The company is also partnering with the University of Indiana to study how marijuana can ease pain.