Studies showing that the parts of the brain that process pain signals are lit up like Christmas trees in fibromyalgia, migraine, and other chronic pain disorders indicate that the brain plays a major role in these diseases. Other fibromyalgia studies, which indicate that the habituation mechanism which should automatically reduce pain over time isn’t working so well, also indicate brain involvement.
Findings like these suggest that the central nervous system is the main culprit in fibromyalgia (FM). Sympathetic nerves have also been implicated with recent findings showing small nerve fiber damage in the skin, eyes and perhaps elsewhere in a significant subset of FM patients. Why these nerve fibers are being damaged and/or disappearing is unclear, but some believe that a past or present immune disorder is the culprit.
Two different nerve fibers in the skin exist: one transmits pain signals and the other sympathetic nervous system signals. Since problems in both the pain response and sympathetic nervous system exist (and are likely intertwined) it’s possible that both types of nerve fibers have been damaged in FM. Plus, since the sympathetic nervous system (SNS) or “fight or flight” response is immediately triggered by pain, its potential relevance to FM comes as no surprise. Some researchers such as Dr. Martinez-Lavin believe the pain sensitivity in fibromyalgia is directly triggered by aberrant sympathetic nervous system activity.
The big question right now is if the two findings – central nervous system problems and the skin nerve issues in fibromyalgia – are connected. That’s what the Italian researchers in the study below tried to find out.
Marina de Tommaso, Katia Ricci, 1 Giuseppe Libro, 1 Eleonora Vecchio, 1 Marianna Delussi, 1 Anna Montemurno, 1Giuseppe Lopalco, 2 and Florenzo Iannone 2. Pain Processing and Vegetative Dysfunction in Fibromyalgia: A Study by Sympathetic Skin Response and Laser Evoked Potentials. Pain Res Treat. 2017: 9747148.
In the present study, the Italian researchers attempted to cross the divide between body and brain by assessing two seemingly disparate processes in a single group of patients. A “laser-evoked potentials” (LEP) test was used to determine if the habituation process in the brain which should tamp down pain signals was working in FM. The “sympathetic skin response” test measured whether the sympathetic nerves in the skin were working properly.
Study findings indicating that sympathetic skin response (SSR) is delayed in FM suggest that problems with these nerves in the skin may exist. One research group even proposes that SSR testing could provide the first biological test for FM. Their recent neural network study used the SSR test to very accurately determine (97.7%) who had FM and who didn’t.
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The big question facing this study was whether problems with sympathetic nerves in the body would also be associated with central nervous system problems. A positive answer to that question would heighten the complexity of FM significantly, and cast doubt on the idea that the pain problems in FM arise solely from problems with the central nervous system.
The results revealed a heterogenous group of patients. The FM group as a whole exhibited both a slowed response of the sympathetic nervous system fibers in the skin and a blunted habituation process. The two results tied together brain and body suggesting that fibromyalgia is a disease not just of central sensitization, but which also tends to effect sympathetic nerves.
A third of patients who displayed no results at all on one of the LEP and SSR tests were clearly different. These patients, who turned out to be the most severely affected of all, reported high levels of neuropathic pain. The lack of an SSR response suggested that their sympathetic nervous system nerves may have been effectively trashed in some places. That fact that this same strange pattern – no results measured – also showed up in the LEP test suggested, as did the first part of the study, that something in common may be underlying both the SSR and LEP results.
In fact, a brain network (insular cortex, anterior cingulate cortex (ACC), prefrontal cortex (PFC), posterior parietal cortex (PPC), secondary somatosensory cortex (S2), thalamus, and midbrain) exists which regulates both pain and sympathetic nervous system functioning. Virtually all of these brain areas have been implicated at one time or the other in fibromyalgia.
Another finding, that the habituation pain response was more blunted in FM patients with increased anxiety, was not entirely surprising. Studies indicate that negative mental states such as catastrophizing increase pain sensitivity in FM and other chronic illnesses. (One study, however, found no correlation between anxiety and pain in fibromyalgia.)
The results opened up a nice can of worms. For possibly the first time, problems with peripheral nerves in the body were correlated with central nervous system issues in fibromyalgia. Correlation is not causality, but the finding suggested that an underlying problem – still unnamed – may be producing problems in both the sympathetic and central nervous systems in fibromyalgia.
The authors pointed to a section of the brain which regulates both sympathetic and sensory stimuli processes as potentially a key factor. Immune processes are also potentially a key factor.
Plus, about a third of FM patients with more neuropathic pain and disability were different. These patients exhibited no results on one of the tests suggesting that significant nerve damage may be exacerbating or causing more pain in them. The authors called for more studies of neuropathic pain in FM.
That small nerve fiber problems are present in FM is clear. The big question is why they’re present, what do they mean for the other issues in FM, and how to treat them? This study presents the preliminary but intriguing possibility that the issues in the brains and bodies of FM patients are connected.
Next, we’ll look at a potentially ground-breaking study which suggests that treating the small nerve fiber problems with an immune modulator may, in some FM patients, be very effective indeed.
“…intriguing possibility that the issues in the brains and bodies of FM patients are connected…”
Do any of these researchers following a hypothesis that the CNS is “responsible for FM patients pain” have an explanation for the deformations in actual muscle tissue, and the pain and extreme sensitivity to pressure, of the lumpiest spots – every massage therapist and hands-on therapist with experience with FM patients, can tell you about these.
Ignoring the patently obvious possibility that the CNS dysfunction is a consequence OF actual biomuscular deformations and dysfunctions (and not devoting research resources to looking for a further-upstream cause of these in dysfunctional body biochemistry) is incompetent, arrogant, and is consigning millions of people to a state of hopelessness.
I am not saying there are not CNS dysfunctions observable, I am saying that finding a “cure” for the CNS dysfuntion will be the ultimate example of suppressing a symptom while the actual condition goes untreated, and it is entirely likely that sufferers will be further harmed. I am 100% skeptical that “curing the CNS” will result in resolution of the muscle-tissue deformities, which are almost certainly the result of myofascial adhesions, which in turn are almost certainly the result of loss of “ground substance” lubricity.
If anything, people with these issues have lost sensivity to the chronic pain emanating from these spots all over the body, as the CNS has burned out under the load, especially as muscles do not obey automatic CNS commands to relax to relieve the pain. The agony experienced on applying pressure to these spots is NOT “because the CBS is hypersensitive”, it is because those spots are literally like a raw injury!!! What kind of medical experts would proceed with the hypothesis that the agony of pressing on a raw wound, has a CNS “cause”???
Now excuse me while I go scream and smash things for a few minutes.
I share your dismay that this issue isn’t being looked into more. The fact is is that funding for fibromyalgia is in the pits and most of it is probably going to brain scan studies, exercise and behavior management.
How can we raise more money and awareness? I am 63 and have had FM for 23 yrs but I know people with fm and they are not like me. It also seems to have morphed. I have doubts that Drs are diagnosing correctly. I think many don’t care. Feels hopeless. What can I do?
Being a researcher in the field of both ME/FM has proven to be time and again a mine field. Results often were unreliable, unreproducible or had to be renounced later on. That is devastating to ones research career.
I can imagine that using an MRI is an attractive way out of this situation: it is seen as an almost mathematical tool that yields objective results one can’t argue with. One can interpret the correlation between the MRI data and the disease wrong, but one can’t argue with the validity of the data (as long as the tool works well, which is out of the field of the doctor). That must be more reassuring to a young researcher than having to rely on counting knots and lumps on ones fascia (no disrespect meant! it’s a practical concern).
MRI tools also are very expensive and underused in many hospitals. I could imagine some hospitals more then welcome researchers with government funding to use them if there are open slots to be filled… That’s not a negative, I think MRI is a great additional tool to investigate both ME and FM. But it is limited in what parts of this systemic disease it can help uncover so overemphasis brings with it not looking nearly enough in perhaps more urgent matters.
Having more highly reliable diagnostic markers for both diseases probably is the way out. Then and only then will looking into hard to quantify things like knots and lumps be seen as not too risky as at least researchers will have hard data on the small but important matter as to who for sure has this disease.
Having both uncertainty about who is ill and to what degree as well as the use of debatable markers such as amount of hard to quantify tissue damage is too much of an uncertainty for researchers. It’s a near sure shot to put one into the eye of a storm.
The most advanced “fascia” researchers (Robert Schleip and colleagues) are finding out more and more things that the medical profession did not know before about the fascia, but there is no communication between them and Fibromyalgia researchers who are plagued by that precise lack of knowledge! The fascia researchers seem to be blissfully unaware that there is a large cohort of people with a debilitating condition that involves a system-wide fascia dysfunction! These researchers are shedding great insights on healing from injuries and from surgery, where the fascia is involved, but this is at localized spots, not system-wide.
Schleip hypothesizes that the fascia is a fully integrated “organ” like the human skin, and there are flow-on effects from problems in one part, to other parts of the system. There are too many observations to include here, but everything I have learned from reading his work on the fascia, is confirming of my own hypothesis and my own experience. For example, he specifically gives “cycling” as an example of an activity that places little demand on the fascia, compared to other sports – hence cyclists are prone to development of fascia-immobility issues, and people with fascia issues can often cycle better than otherwise expected given their other evident limitations! Totally my experience!
But Schleip and his colleagues never seem to mention FM or the alternative diagnosis of Myofascial Pain Syndrome, as if they are completely missing this cohort of potential patients! It should be called something stronger than “Myofascial Pain Syndrome” too, because it is not a “mysterious pain” at all, but pain associated with palpable deformations.
It also makes sense that so many people who get FM, did so following surgery of any kind (I had a Varicocele vein operation). Combined with already-existing elevated toxicity issues, and with a stressful life (and related parasitic muscle tensions), the fascia’s normal healthy functioning seems to finally collapse when cut into absolutely anywhere! Schleip discusses how surgeons and post-op-recovery personnel might need to learn vital things about the fascia to avoid long-term dysfunction – however he relates it to the spot of the incision and flow-on effects to adjacent parts of the system, rather than the possible triggering of a system-wide dysfunction.
Can we do anything to break through these obstructive silo-isations of medical research??
And can researchers somewhere be induced to do a proper study to prove my protocol hypothesis in the case of a proper size study sample? Wigers and Finset (2007) is the best so far, but this work needs to be built on, not lost down some kind of institutional memory hole.
By the way, Starlanyl in her excellent book says that researchers at the Mayo Clinic have “imaged” muscle-tissue deformations of the kind we are talking about, but what they are doing with the information is another question. Read all Starlanyl’s comments in the discussion thread on THIS article:
Only looked at this for a few seconds. Would these changes show up on scans e.g. MRI?
Any histology showing changes in small nerves?
Studies have shown changes in MRI’s but this study did something different – a laser evoked potential which measures, I believe, the speed of a response. I don’t believe its a scan.
Thus far biopsy studies have indicated that about 40% of FM patient are losing small nerve fibers or the size of the nerve fibers is diminishing in their skin and in their eyes.
“A third of patients who displayed no results at all on one of the LEP and SSR tests were clearly different. These patients, who turned out to be the most severely affected of all, reported high levels of neuropathic pain.”
I, a combined ME/FM patient, am probably in that subgroup. I do have decreased pain sensitivity rather than increased just like for example Phil. That means very strong FM pain, mainly neuropathic pain and agonizing pain shoots, but remarkably reduced “common” pain levels from things like bee stings, cut wounds, dental filling without sedation…
The first thing that helped was improving blood flow to the head by doing gentle exercises to reduce tension in neck and shoulder area. That reduced neuropathic pain, pain shoots and even things like brain fog. It however only marginally reduced exhaustion levels if at all.
MarthaLauren recently described a similar experience in https://www.healthrising.org/blog/2017/12/01/looking-glass-cerebral-spinal-fluid-leaks-ehlers-danlos-syndrome-alternate-reality-mecfs/. She obtained comparable results as me with a comparable technique. She interestingly however approached/developed it from an entirely different EDS/autoimmunity angle compared to my poor blood flow/low oxygen/reperfusion injury/inflammation angle. Somehow both different approaches yielding similar results provides a tentative weak link between EDS/autoimmunity and poor blood flow/lack of oxygen/inflammation.
She experienced the typical backlash in the beginning. I do not think that “in order to improve one has to get worst before”. I believe it’s mainly an overdosing even if one starts *really* slow. We are so weak that may be too much. Going even slower and seeing potential progress as something that grows over many months is my favored route. So far it worked often to yield improvement over time without the disturbing backlash at the beginning.
The second thing that helped with my FM was doing gentle exercises of the limbs themselves, in order to slowly improve local blood flow (and hart prefill). It seems that unblocking the neck region first helped me well to get this one working (with a blocked neck area all other movements were more difficult/clumsy). That improved pain mainly in joints, tendons and muscles. One thing I still remember is another patient on this forum that argued that it is increased virus counts, caused by poor blood flow, around nerve points that cause the pain rather than direct damage from the reduced blood flow itself. That still makes sens to me and could provide a link between poor blood flow, (auto)immunity and virus caused nerve damage (small fiber neuropathy).
Although I do not perceive lumps and knots on my fascia as Phil does, our experiences align quite well. I believe I have plenty of tissue damage too but rather huge amounts of microscopic sized damage.
Once again, trying to even slowly increase blood flow caused near immediate flare-ups in pain and inflammation like experiences. So I once more had to chose the very slow route that provide better improvement over time with fewer side effects.
Now I am gradually reducing pain medication. Even with lower meds, I have easily 5 times lower pain now then before this approach. Taking account for reduced pain meds that may be a factor 10. It isn’t a silver bullet and sure ain’t no cure. It may help or not depending on a lot of patient specific things. But maybe it can help others; such a reduction in pain and some reduction in brain fog is well worth the daily effort it does cost me ;-).
Dejurgen, thanks as always. The knots and lumps relating to fascia adhesions, will manifest most dramatically if a therapist uses glass suction cups. The first time a therapist tried these on me (massage with these cups is a specialty of hers) she was horrified by the deformations that were evident, which she had never felt before on any other patient.
Massage therapists of all kinds are familiar with knots and lumps relating to specific locations and injuries, and usually one particular therapy is successful in releasing the adhesions and the patient is cured. But patients with FM have these lumps and knots all over their body and they do not respond to treatment. Treatments are painful and ineffective.
A wholistic, multi-disciplinary protocol is necessary to commence a virtuous circle of healing, including gentle mobilisation, detoxing, avoiding inactivity, avoiding over-exertion, stress reduction, diet, supplementation etc. I do not believe that “magic bullet” therapies or medications have worked for anyone on their own – everyone who says that “Trigger Point Therapy” or Guaifenesin, or whatever, cured their FM, was also doing other things that were right for them, even if they did not understand this.
The most important thing, common to everyone who “got better”, is that they were “avoiding both inactivity and over-exertion”. Inactivity allows the fascia adhesions to worsen. Over-exertion adds to the toxic soup causing the adhesions (lactate, etc). “Muscle strengthening” creates new adhesions along with muscle mass.
One of the most unfortunate aspects of the work of Starlanyl and those her work is based on, is their use of the term “trigger point” for lumps that are the result of adhesions in the fascia. They should be called “adhesion nodules” or something like that. Trigger points, to most practitioners, are spots that refer pain to some other part of the body, irrespective of health, usually as part of a treatment. Mainstream medical people hearing the term “trigger point” in relation to FM pain, are immediately dismissive and derisive. Read John Quintner’s comments on the discussion below this article:
Thank you too for helping me learn so much from your experiences ;-). I still only understand the basics of the fascia; absorbing new information goes so slow… A book is still far too much with those dancing, floating and blurring letters…
I agree that one thing does not do the trick. It can work a bit or be then “main” component of some improvement. I do for example link the reduction in pain mainly to the better blood flow. Increases in energy I link to other things I do. It’s hard to separate but I try to have a stable baseline before changes, change only one thing at a time and leave sufficient time to evaluate (additional compared to baseline) results and stability of results.
But indeed that is after doing all the previous changes I have done. Just doing this one thing only would very likely yield significantly weaker results or even fail to deliver any positive results at all.
I agree with “dejurgen” regarding hot spots. Not all patients respond but I have not read anything about how many are in this category. I do know that I was dediagnosed (if that isa word) because I did not respond to any of the 15 or so points. As a result my pain was attributed to my lower back problems and my brain fog to, he is just slow, on top of me being an Owl made morning work ‘hell’ if you will excuse my English. On other hand my daughter responds to some of the hot spot tests. All this adding fuel to idea of FM being complex but possibly having a common basic issue.
I am confused about why excessive activity – walking, standing, sitting, swimming, talking, etc- can cause excruciating delayed pain. But some exercise is essential. I was not aware of the neck-blood for idea. I do neck muscle stretching when required. My neurologist keeps telling me to do it regularly but also add strengthening exercises. I guess I will have to get going and do what he says. Thanks dejurgen for adding to my crazy life style!?
“I do neck muscle stretching when required.”
I tried stretching the neck and other muscle too. While I can see it being beneficial and I sometimes did feel quick benefits I find it very difficult to get stable improvements with stretching. My personal experience is that any kind of stretching is very taxing to my body. It’s just so much more demanding to my body to for example lightly stretch my legs a few times then it is to walk a few hundred of meters.
So mostly I stick to exercises that resemble a light warm up for a person with ME/FM. That means: my warm up is even lighter then my low amounts of activity. But I feel that even if my activities are so low I still benefit well from doing a warm up before every single physical activity like walking, electrical cycling or just getting out of bed. After activities I tend to do well with a warm down too.
The idea of the warm up before exercising is to get the blood flow slowly increased before doing exercise so that I do not exercise on cold muscles with poor blood flow. Doing so on cold muscles gave me time and again more pain and inflammation-like upflares.
The idea of the warm down afterwards is to let blood flow slowly reduce in the muscles at work in order to not create local blood pooling in these muscles. ME (and FM?) patients have clearly decreased blood flow to many parts of the body after exercising including to the head. I believe this is part of initiating PEM. Having blood pooling at this same moment at any place will not improve that. Another part of the idea is that quickly stopping energy demand creates (in healthy persons) oversupply of intermediate products in the mitochondria (Krebbs cycle) and lead to increased ROS production. I dislike that idea.
Doing sort of warm up exercises during the day when not exercising is in order to not let pool (“get stale”) blood in the muscles and to use the “leg blood pump” to temporary increase hart prefill and blood flow to the brain. It should also help getting waste products out of the muscles in small bits. It gives me small but noticeable reductions in stiffness in the “warmed up” locations. I consider that a good thing.
I have one stretching exercise I do daily: stretching the “arm to chest” muscles as my PT insisted a lot that that improves chest breading and these muscles were totally blocked. I however started *very* slow as the “very very light” version of stretching she proposed felt like a knife was put in my chest and used as a lever to pull it open. Didn’t believe that could be any good. So I reduced it to a even far smaller version of that stretch. Now 6 months later I am at the point I could do the original stretch. What helps me is to only do this stretching at moments of “low inflammation”. For me, that’s when I wake up at around 3 o’clock at night. I never ever do stretching before any warm up. At moments of low inflammation (with me that means also lower body temperature) that is even more important.
As to “I do neck muscle stretching *when required*.” In my case, when I feel stretching is required (like the neck being a little blocked) I learned it is the worst time for me to do a stretching. If stretching is too much when the neck is fine, it definitely is when it feels not fine. Then I do an even lighter version of the “warm up” with less movements per warm up but more of these warm ups spread over the day.
Commencing my regaining of mobility, from when I was at my worst, I started by doing very gentle stretches while in a spa pool (at a public swimming pool complex). Warmed up, and with body weight supported by the water. This alone would not be sufficient, I also was most importantly, doing the right amount and intensity of activity daily, dieting, supplementing and detoxing. I have progressed gradually to doing full Yoga in group classes (but I still use spa pool regularly as a tool to further explore my limits of flexibility).
Elevated body heat is also bad in FM, so I always follow my spa session by a period in the swimming pool itself, to cool my body down. But one of the benefits of doing stretching and exercises in water, is that otherwise, muscles supporting the body weight in many of the postures one must assume during these routines, are overloaded and more harm is being done, than the good being done to the muscles being stretched.
” I was not aware of the neck-blood for idea.”
I believe the neck-blood thing is so important as the neck arteries (or veins, translation…?) are the most “flexible” in the entire body by a large margin. That means that they can adjust their diameter far more then any other in the body. It makes sens as for example quickly standing up or laying down causes immense flow changes to the head/brain.
So having good ability to adjust blood flow to the brain is essential for good health. It can be done by adjusting the diameter of the main artery in the neck. But for being able to do so at best physics requires that the diameter of this artery is “set” on average so that blood flow can be both sufficiently increased and decreased from this “starting point”. As cross section of a pipe goes up with the square of the pipe diameter, “average flow” occurs at more then half the diameter.
So in order for this artery to be able to adjust blood flow well it has to be open relatively well in rest. But we ME/FM patients are reknown for having tight muscles. Those squeeze the blood vessels and restrict flow like a person standing on a water hose, just like in so many cartoons. When standing up, pressure drops due to gravity and it gets even worse. That (and personal experience) is why I believe having more relaxed and flexible neck and shoulder muscles (these help pulling on the neck muscles) is so important. MarthaLauren has found other additional reasons.
I am 78 years old and have had fibromyalgia for over 30 years, starting with migraines with the onset of my menstrual period. Fibromyalgia set in my 30s. Recently, I had an MRI and was diagnosed beginning stage alzheimers. I wonder if there is a connection with fibro fog or just a progression of fibromyalgia. Has there been any research done in older fibromyalgia patients?
Hi, good article.
Thanks for sharing, keep it up good work.