05.30.2017

No, the mystery of fibromyalgia is NOT solved! | An update on the “fibromyalgia is caused by excess blood vessels in the hands” study

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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.

Fibromyalgia Mystery Solved Update | Fed Up with Fatigue

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.

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Comments

  1. Hi Donna, I’m rather new to your wonderful web site but not knew to fibro. I wanted to ask you if you ever tried any of the green juice that is supposed to be the answer? I don’t want to go out and buy a juicer just to find another failure. I feel fortunate that although I have all the pressure points but the worst pain is in my hips. So severe that it makes me sick to my stomach when I keep pushing myself to finish a project. I can last maybe twenty minutes before I have to sit down so the pain will go away. The neuropathy in my feet continues to worsen but I can handle that much better than the pain in my hips. Thank you for all the work you do and share with the world.

    • Donna Gregory/FedUpwithFatigue.com says:

      Oh boy, Judy, I know some people aren’t going to like what I’m about to say, but this is my honest opinion: I don’t think juicing is that good of an option for fibro, and here’s why…Juice is loaded w/ sugar, and sugar is inflammatory. My preference is to just eat whole, fresh fruit. That way, I’m getting the vitamin benefits but still getting the fiber, which is stripped out via juicing. That’s just my own opinion. I know others will disagree, and that’s ok. As you know, this fibro thing is very unpredictable. What works for one of us won’t work for all of us, so we all have to experiment and figure out what helps us individually. I know they sell a lot of really nice juice products now in the produce section, and that may be a way to test it out for a few weeks before investing in a juicer. Regardless of whether you go the juicing route or smoothies or whole fruit, I always try to buy organic when I can afford it b/c they are treating our produce w/ so many nasty chemicals now.

  2. Ray Sylvester says:

    I really thought there might be some connection. I had a severe hand laceration injury and corrective surgery in 2011 and it seemed my fibro symptoms ramped up exponentially immediately afterward.

    • Donna Gregory/FedUpwithFatigue.com says:

      There could be. They need some funding to be able to continue their research to figure it out.

  3. Lisa Radelet says:

    I don’t really know what the researchers mean that their theory explains the “extreme tenderness in the hands” of fibromyalgia patients. I’ve never had any hand pain or tenderness. And none of the 18 diagnostic tender points are in the hands. My hands are one of the few places that don’t hurt! LOL

    • Donna Gregory/FedUpwithFatigue.com says:

      I had the same thoughts. I’m speculating that maybe if we have these extra nerve fibers in our hands, then we might also have them throughout the body. I guess that could be a factor in fibro, maybe. It would be nice if they could get the funding to continue their research and find the answers.

      • Grant says:

        We are definitely different in numerous areas and it’s not even that there are no medical science studies out there indicating such, there are, even in this early stage of discovery. It won’t just be nerve fibres. Our medical system has become almost completely removed from the realisation this organism and all it’s systems are interactive and complex almost beyond imagination. Attempts to continually segregate and hence be able to develop one single drug able to address one single area for economic gain has in many ways inhibited the real ability to conceptualise and theorise regarding the entire complex organism. We feel more because we are designed so. Eventually science will discover we have small brain variation in numerous areas. Our sympathetic, parasympathetic, neural and all other systems will be found to have variances from the “normal” or “mean” population group. I am an extreme example. Some doctors over here in Australia call me “HORSE” not for any “fanciful” reasons but because in their own wordsI “produce so much adrenaline during operations we have to give you veterinary doses to keep you under.” I’ve woken up during so many operations I used to think everyone must. We all over adrenalize in response to placing the organism under stress, maybe not all to my extant but all Fibro sufferers over adrenalize. That requires first a heightened physical ability to detect threats and then a heightened physical ability to produce the extra chemicals, placing extra strain on all the systems involved in that production. If such a system is at the heightened level enough eventually the organs (not only adrenals and thyroid but all organs) all of which have a limited campaign life (else we’d never die or age) suffer early production level degradation. It is happening at levels still barely detectable by medical science but happening across the entire spectrum of systems creating the compounded effects that cause Fibromyalgia. Imagine an organism genetically built to be highly sensitive and react. Nerve fibres are just the beginning. We feel more, cry more, hurt more because we are genetically formed to do so. Living in todays society with such genetics then places constant strain on the organism operating at these heightened level. Eventually it breaks down.

        Mark my words, in centuries to come science will start detecting these genetic variances at or before birth. What society decides to do with that information will go through various stages of development itself. There will be attempts to genetically engineer the “problematic” variances out as they inhibit working productivity. Others will argue such individuals could be directed down different paths ensuring much less stress exposure (physical and mental) whilst still being productive. Our heightened abilities to sense and react could even be capitalised on in certain circumstances in the future I expect. This may all seem far reaching and futuristic but no medical scientist I have spoken with doubts we are all genetically different, even within the “norm”. It is not such a great leap to realise there will of course then be others who are further genetically different then most. That is us, we are different. Recognising it as early as possible and living life accordingly is the absolute key to stopping the “drain” having roughly 5% of the world in constant chronic pain places on society. It is a massive economic cost only now leaders within the scientific and political spectrum are starting to comprehend.

        • Donna Gregory/FedUpwithFatigue.com says:

          I’m guessing you have heard the expression of “canary in a coalmine”? That is us! I agree that for some reason our bodies are overly sensitive. I know I always feel amped up and stressed out even though I have no obvious stressors in my life. The question is WHY is that happening. What’s the underlying cause? Like you said, I’m sure genetics has a role in it, but I suspect we’re being triggered by environmental factors, too – the pesticides they put on our food, air pollution, water pollution, chemicals in our household products, chemtrails (yes, I believe in them b/c they spray over my house every week), radiation (Fukishma, which NO ONE is talking about), EMF, etc. Plus, the common stressors, like work, relationships, etc. I think it’s just too much for our bodies, so we become the canary in the coalmine.

          • Being genetically/physically built to be more sensitive than the average population does indeed mean we are more sensitive to everything on your list, in fact to everything period. Therefore the condition itself is brought on by the combination of genetic and external factors. It is why the criticality of early detection cannot be over stated. We are centuries away (if ever) from being able to engineer and correct the genetic variances, let alone overcoming the moral implications of such. Therefore the management or elimination of the external triggers is absolutely vital. Diagnosing the genetic predisposition early and managing or eliminating the organisms exposure to the external triggers will be the key to preventing Fibromyalgia development in future organisms (our children).
            Unfortunately the treatment options for those already suffering will remain very limited. The damage is done, the organs and nerves have effectively used a “lifetime” worth of production early and are now compromised. We still have no ability to reverse premature aging. We can supplement, assist, reduce exposure, etc but we cannot reverse the premature reduction in functionality. The stem cell possibilities are there perhaps in the distant future, but I suspect as this is a genetic/physical characteristic affecting every organ, nerve, cell in the organism it will possibly create more issues via attempting to regenerate one area and consequently throwing the rest further out of balance (I admit it could also provide incremental improvement initially, I am unsure in this area). Suffice to say these developments will be long after you and I have departed this realm.
            All this means the treatment for current sufferers must be , as we already know, holistic, covering everything because basically, everything is affected. This is known to science now. The multi faceted nature affecting multiple systems is acknowledged in innumerable studies already and also acknowledged as making treatment extraordinarily difficult.
            This cannot and will not change, it is physically impossible as every cell is affected not just by external factors, but by design.

        • Have you ever checked out CPTTS? For instance in YouTube film by Richard Grannon?. I think stress from childhood combined with (physical) stress later in life could have a major effect.
          Not sure if this is design – nature or nurture- since stress responses or problems can run in families for decades.
          I have a facebook page called Fibro Science where I “store” all scientific articles on fibro I can find. If you would like to contribute, great!
          But this is a great page as well!

          • Donna Gregory/FedUpwithFatigue.com says:

            Hi Wendy, I “liked” your page on Facebook. Looking forward to seeing your links!

  4. The reality is science has barely touched the tip of the iceberg regarding this condition. The excess nerve fibres in hands are discovery should be seen for what it is. Just the start of the realisation that the entire organism (fibromyalgia sufferers) is physically formed to be what medical science refers to as “hypersensitive”. Rather then wasting millions of dollars trying to pin the condition precisely to these excess fibres science should be asking itself this question. If this group of over sensitive organisms has excess fibres here, where else might an organism physically different to the “norm” vary in physical/ chemical formation. In time it will be discovered our entire interlinked systems are physically formed to be ready for flight/fight and more responsive to potential threats to the organism. That requires the organism to be genetically superior (or inferior or different depending on your interpretation) then the “normal” organisms that are not so genetically developed. You know why we keep seeing in so many studies, the HPA access is affected, the neural system is affected, the sympathetic system is affected, the parasympathetic system is affected? Simply because the all are. They are all correct. It will eventually be discovered we have excess nerve fibres in other areas, we produce more adrenaline then the norm, we drain the cycle life of organs earlier trying to keep up with higher production levels of a myriad chemical reactions because we are genetically designed so. Medical science is still not capable of measuring the small variations that exist across every interlinked system which combined and compounded together lead to the early degeneration of organ production capabilities and nerves etc. Not only are our systems designed to be over sensitive, if such an organism has been exposed to high levels of stress (physical or mental or both) for an extensive period, the extra drain on the organs inhibits the organisms ability eventually to keep producing at the levels required to function. The organism now enters a state of negative feedback to prevent further depletion and damage including inhibitory pain signalling. There will be no cure for Fibromyalgia until Epigenetics develops to such a level the genetic characteristics can be “engineered away”. That is centuries away and the world is yet to even have the moral debates around such. Management is the only option. Catching it early (ie early diagnosis) and early intervention is an absolute imperative to slow the degradation. We must find a way to cease the damaging process of multiple years required for current diagnosis. By then the damage is often too great to address the condition with any meaningful management options. The absolute next key development is a recognised, relabel early diagnostic tool.

  5. Catalina says:

    Hi,Donna!
    The truth is that fibromyalgia is a disease as a consequence of EBV…I’ve been in pain immediately after mononucleosis and since then I’m like this..my mother had EBV too and now has fibromyalgia. The truth is linked to the fact that is hard to find out you have infectious mononucleosis as an adult and you did not search for it..then it goes dormant and you never find out that it was responsible for your chronic illness..in my case I figured out because I’ve done all my blood tests and I thought also about EBV as I am a medical student. I’d like you to spread this theory that this virus can be responsible for this horrible condition. And you can do your blood test too and see if you have high titers of IgG VCA. I hope you have sufficient relations with doctors from America…as I am from Europe,here it isn’t done any research regarding this condition. I hope one day we’ll have the cure and that day won’t be after we’ll be all dead. All the best! Catalina.

    • Donna Gregory/FedUpwithFatigue.com says:

      I’ve heard the theory that fibro is caused by EBV. I guess it could be, but I’m not convinced. Almost everyone on the planet is exposed to the EBV virus, so why isn’t everyone sick with fibro? I think viruses/bacteria probably play a role in fibromyalgia, but I suspect when they finally figure it out, it’s going to be more complicated than just a single virus.

    • Rachel Smith says:

      I’m 34, and can trace symptoms back to when I was about 10. Never had mono, hadn’t been in any kind of car wreck, never broke a bone, never suffered trauma of any kind other than the usual childhood bike wrecks. The only car wreck I’ve ever been in was last year, and there was no worsening of symptoms after the bruising healed.

      While mono may trigger it in some people, it’s not the blanket cause of it. My mom’s side of the family lends a lot of credibility to it having a genetic component. Her family is large, and she has multiple first cousins with fibro, as well as both her siblings. And she has it too. I’m the only child of hers with it.

      Fibro is a complex beast. I’m one of the lucky ones helped by SSRI anti-depressants. It doesn’t get rid of it completely, but I’m functional and not on opioids for pain management. It wouldn’t surprise me if one day it’s discovered all the theories work together to cause it.

  6. Kathy Haigler says:

    Hi, Donna. I’m a fibro sufferer for 22 years. At least that’s when I was diagnosed. Anyway, nowhere in your article, or the other articles I’ve read on the clickbait sites, does it mention that the condition referred to here, with the “excess blood vessels”, is called small fiber neuropathy. Isn’t that correct?

    • Donna Gregory/FedUpwithFatigue.com says:

      No, this theory isn’t related to small fiber neuropathy. SFN is when the nerves, usually in the feet and hands, are dying – it causes numbness, burning and tingling in the extremities. This theory is different … they essentially found excess nerve fibers in the hands and think that might be linked to fibro somehow.

  7. Diana Forestoj says:

    Kudos on the accolades! Ignore the haters! I loved the name of your blog. I totally agree with you. I’m 11 years fed up, but I’m not giving up either. Stay the course!
    Diana F.

  8. Diana Forestoj says:

    I’m not sure if I agree about the hands and feet study. My hands are arthritic, but not due to fibro. My hands got bad due to age, genetics, but, they didn’t hurt when I contracted my pain. The pain also goes away about 20 minutes later, when I get moving. My body pain has been worse, as of late, due to the wet weather conditions. Strong variations in any weather condition, hurts. I’m working and reading on what I can do, food wise, that effect inflammation in the body. My adrenals, my thyroid. I have to rebuild/reboot myself. It’s not easy. It’s a process. Giving up gluten. Carbs are not our friend. But, I’m having a hard time giving up dairy. I’m trying to go Paleo. From what I read. It’s the best plan for Fibro/thyroid patients. Also, looking into, The Fast Metabolism Diet. I have so much research on Fibro. It constantly changes. But, I thought I’d contact you rather than starting my own blog. Why reinvent the wheel. You seem to be committed to it, like me. Always searching. I don’t put too much faith in the medical community. I dumped so much money into getting better, but I ended up getting worse. Anyway, hope we can connect soon.

    • Donna Gregory/FedUpwithFatigue.com says:

      Hi Diana, you’re welcome to email me anytime. My email address is donna [at] fedupwithfatigue.com or just reply back to any of my emails. Looking forward to hearing from you.

  9. Karen Bunn says:

    Makes no sense. I’ve had these hands, feet and legs my whole life, but have only had fibromyalgia for the last five out of 56 years.

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