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- June 2018 Facebook Blog – DGMEFM Network - […] Fibromyalgia Researcher & Doctor Asks “Chronic Pain: Is It All in Your Head” (Hint: It’s N… […]
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Allyn Archer
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Former occupation: Architect, Professor of Architecture
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Cort, I REALLY dislike how you title articles like this one, the last heading anyone with fibromyalgia need is “Is it all in your head”….Why? THe article is.o.k. , but honestly I don’t even want to give it a thorough read because of the articles title.
I understand your discomfort with the title. I didn’t particularly like it myself. I think we’re honestly way past that with regard to pain. I used to it because it was the title of the talk and I couldn’t think of what else to title it. Titles can be hard to come up with.
well, I guess if that was the title….sorry to shoot the messenger!
Very nice of you JL 🙂 Thanks.
I tell patients when I refer to this video that it is titled” Is in in the head” because that is where the brain is located and FM is a CNS ( brain disorder).
People with FM have mostly come across a health practitioner who has implied it is a psychological condition, So addressing this issue up front allows me to correct the inappropriate and erroneous comment.
I totally agree!! I would think this site would know better than any other to not use something so sensitive to us sufferers.
Sorry for the upset: I added this “(Hint: It’s Not Psychological)” to the title. Appreciate the communication.
Really, Really??? Cort is just trying to pass along information. You have much more to worry about then a title…for crying out loud….
Headlines are usually misleading.
The media does it for the Shock Value.
Sensationalism sells.
I do not have FM,I have severely ME/cfs and my pains but I find it discusting for FM patients to all simply saying it is in the brain while there has to be done so much more research to help these poor peopleliving in criply pain. Probebly even with FM there will be subsets and hopefully also personalised testings and treatments in the future.
I think there probably is more to fibromyalgia then the brain. I agree with that. Most of the fibromyalgia research has been on the brain and it’s certainly a very important aspect of it but I agree there’s probably more. Stay tuned for more studies on small fiber neuropathy.
Telling us it is in our heads – and a whole profession being involved in this – is like a form of psychological abuse that is likely to cause psychological problems even if they were absent in the first place.
I think something the medical profession will have to get some belated humility about, is the ability of human beings to discern when there IS something physiologically amiss inside them, especially pain. I now believe (after decades of experience and research and hypothesizing) that MOST pain held by the medical profession to be of “nervous” origin, has been physiological. Millions and millions of patients have been ill-served by the establishment.
Yes, the CNS is heightened in FM. News flash: if bombarded with relentless non-stop pain signals (especially when there are dysfunctions that mean that muscles are refusing to relax to minimise the pain) the CNS will end up heightened.
But THIS is a step in the right direction:
“…This suggests that FM is not an either/or condition but is found in a kind of continuum across the population…”
Medical research is slowly discovering more and more to fill a colossal gap in its knowledge relating to the fascia, intersticial spaces, and intersticial fluids and their dynamics. The best online source of information on this line of research is Russell Schierling’s site. Dr Schierling himself is a believer in the same hypothesis as myself. The pain is real, and originates from the fascia, and is due to issues with the fluids that are meant to keep it lubricated and tactile.
The fascia is full of nerves and propriceptors.
The intersticial fluids are implicated in a wide range of general human health issues including cancer. Intersticial fluid testing would probably have more diagnostic power than blood testing, for many conditions. The fascia is right on “the front line” for intersticial fluid pathologies.
The fascia is directly implicated in most chronic and unresolved local post-injury pain; alternative treatments that are successful (often after years of suffering) are successful because they re-mobilise the fascia at the location. Qi Gong massage, “myofascia release”, trigger point therapy, needling; if they work, it is fully explainable by the “fascia” hypothesis.
Dr Schierling is absolutely correct that some people have a body-wide dysfunction that means that they have fascia adhesions all over the body, and these are not responsive to the hands-on therapies that work for the local chronic problems. Prolonged de-toxing is necessary to restore the health of the intersticial fluids and allow the fascia’s tactility and lubrication to be restored by very gradual hands-on and movement therapy.
I have faith that the mainstream of medical science will come up with effective and rapid cures once it starts looking in the right direction. Those of us who have achieved it the “alternative” way have taken years; the rate of improvement is perhaps 20% per year, “diminishing” (i.e. 80/64/51.2 etc).
The implications for cancer alone, means that the intersticial fluids are about to become a hot research topic.
Hopefully FM will benefit from the new understanding too.
When I say I agree that “FM” is on the end of a continuum that applies to the entire population, I mean that the intersticial fluid and the fascia obviously can have degrees of pathology and dysfunction. People can be a little bit unhealthy because of it, or anything right up to major diseases. People with “some degree of FM” maybe just lack limb range of movement and flexibility relative to others. The children who are clumsy at gymnastics, for example.
I hold that what makes the condition “FM”, is when it has become so bad that the CNS has become heightened, which creates a vicious feedback loop where muscles are permanently tensed and hence fascia adhesions multiply. This is also consistent with the hypothesis that multiple factors usually combined to tip the patient into this condition; always including stress (muscle tension) but often including factors that will have elevated the intersticial fluid toxicity. Infections, toxic elements, renal system dysfunction.
Thank you.
Usually I agree with you Phil but I disagree here.
Numerous studies in FM and other pain disorders show derangements in pain processing pathways occur in both the spinal cord and central nervous systems. What does that have to do with psychology? Should we ignore that?
I agree that we need to look more deeply in the body but ignoring the evidence of brain issues isn’t a great approach either. I didn’t put the following in there because the blog was long enough but one of Clauw’s recent animal studies suggests that the central sensitization in the brain could be causing the small fiber neuropathy in the body.
Pain Rep. 2017 Apr 15;2(3):e590. doi: 10.1097/PR9.0000000000000590. eCollection 2017 May. Reduced intraepidermal nerve fiber density after a sustained increase in insular glutamate: a proof-of-concept study examining the pathogenesis of small fiber pathology in fibromyalgia.
Harte SE1, Clauw DJ1, Hayes JM2, Feldman EL2, St Charles IC1, Watson CJ1.
It says…
Check this out:
Could the fascia problems to be some the result of some sort of compensatory behavior? Muscles tightened up in order to reduce pain – as you suggest?
Thanks, Cort; I am referring to the “FM is an attitude problem” approach that I am very familiar with in my own story. The fact that “Cognitive Behavioural Therapy” is still so popular makes one suspicious that a lot of important people in mainstream medicine still think this way.
No, I am not saying that muscles are tightening “to relieve pain”. I am saying that pain relief would normally be available by the muscles relaxing, but the muscles cannot relax. When I was first diagnosed with FM, the doctor was prodding muscles here and there and telling me “relax this muscle”. I couldn’t do it. The muscles were involuntarily tense and could not relax them even by focusing on doing so.
I agree, and said so, that the CNS is implicated in this once someone has “FM”. But when looking for the initial cause that tipped the patient into this vicious-circle condition, there is so much anecdotal evidence from patients, of contributory factors such as toxins, infections, accidents and operations. The fact that there are measurable alterations in the CNS does not mean that these came first. Proving this, would require tracking healthy patients who eventually succumb to FM. The changes to the CNS are perfectly consistent with the CNS suffering physiological-origin overload in the first place.
I would be interested in an explanation of my own improvement from a “CNS first” perspective. I believe I have restored my fascia function through detoxing and hydration. Palpable deformations have resolved and once-tense muscles are relaxed. This has been a gradual, mappable process. Hands-on therapies have resolved local issues one at a time.
If the problem came from my head first, I don’t see why I succumbed to FM at a point when I thought I was invincible, fit and athletic; and I have recovered at a point in time where most of my life has passed me by. Even the fact that I did road cycling as my chosen sport when I was fit and athletic, is consistent with developing a vulnerability to fascia issues. I wonder if anyone who does a lot of dancing succumbs to FM – other than post-injury?
A patient survey of a large sample group, looking for the right factors, might be very helpful.
There is a further possibility for excess muscle tension- and that is dysfunction in the vestibular system- causing excess guarding to cover for expected instability.Such dysfunction can come from neck instability or from eye coordination issues (multiple causes here – but minor TBI is one). Either of these problems cause a sensory mismatch which renders the vestibular system dysfunctional (garbage in- garbage out). This sort of problem also gives rise to dysautonomia (how do you adjust blood flow for change of posture when you are not really sure where you are in the first place?)
Thankfully this sort of problem is something we can work with now- if you are lucky to find the right practitioner.
I know that people are wary of the “functional label” but really what it means is there is nothing broken- the system is just locked in a dysfunctional cycle and does not know how to unhook itself. That is good news.
Traditional medicine is very much locked into a model of finding permanent pathology and offering medications to ameliorate the problem. It is what we have been used to and we don’t look much further than our immediate colleagues.
I have had a chronic pain syndrome e(right side of body and neck with significant neurocognitive features for25 years, but over the past 9 months iIhave been lucky to come across enough evidence to understand and break the loops. The changes were intermittent at first, but Have been as good as pain free for almost a month. Equally I live with someone who has overt fibromyalgia (my peak score would have been about 15 for several years)
It has been an enormous change of thinking, and a bit of a comedown for a conventional practitioner like myself to actually shut up and listen to these neurology chiropractors. However they know their neurology very well- (right up to fuel delivery issues affecting the neurone (ie toxins and dysautonomia) and I can’t argue with the references they keep shoving at me.
In all of these conditions, once dysautonomia is established there is a cascade of other neurotoxic events such as diabetes, and autoimmune problems. Logiclly it makes much more sense to see many of these changes like small fibre neuropathy as secondary to the main problem.
I know that “functional disorders” have a bad name, but that is largely to the sloppy nomenclature of psychiatrists. In truth, functional disorder means “nothing irreversibly damaged”. Think about it– it sounds rather promising from that angle.
As to “it being in our heads” that just shows how philosophically naive the psychiatrists are. The whole world exists as a representation in our heads. None of us know for sure that is really out there 🙂
Thanks Andrew. Thanks in particular for explaining the term “functional”. That makes much more sense to me and I think it probably is accurate – systems working improperly rather than an organ breakdown – let’s hope so!
Phil Hayward, just one other comment i would make– our physiology is driven and operated from within our heads. I don’t think that the medical profession is fully au fait with that fact.
thanks for adding the sub title…I think I am just ultra sensitive to all this “could I just be imagining my pain? stuff…after 10 plus years it gets so old as I’m sure you know…
Today is a “I can’t brain today, I’ve got the dumb” day…HOWEVER…this article is right on the money! Have been methodically distributing copies of your articles to any professionals who appears slightly open-minded. This one joins that stack to be distributed.
You continue to amaze me with the depth and breadth of your reporting. It isn’t easy pleasing everyone, but truthfully THATS NOT THE POINT. Informing, being a catalyst for dialogue, thought, debate, and information gives us what was lacking in the early years of this malady. INFORMATION, COMMUNICATION, OPPORTUNITY. The rest is up to us. I appreciate almost all of the responses. Your posts are not meant for agreement, but to inform, and oh how they do.
I regard my soon to be 28 year journey with this crappy illness, a giant jigsaw puzzle that truly only I can put together. It takes persistence, as I’m NOT patient, courage when I wonder how much more I can take, and compassion for myself and others when I run into ignorance aplenty.
To those having a rough day, when you want to take a bite out of something, anything, anyone… remember, like gas, this too will pass.
All IN YOUR HEAD… yes, I understand in brain function yet solutions remain the usual, drugs that don’t work. Not much help.
Yes, the drugs are same – Clauw is pretty conservative but he does state in the video that he sees MANY FM patients who weren’t able to handle the FM drugs because they weren’t taking them in the correct manner. Hopefully that will help some people reading this blog find some relief.
He, of course, agrees that we need better drugs.
Nah. I don’t buy it. Activated astrocytes and microglia can contribute to pain, but it’s not as simple as that. What about dorsal root ganglionitis in ME autopsy results? This would account for various sensitivities and pain. I don’t think we can discount the peripheral nervous system or, as you mention, small fibre polyneuropathy.
My major worry here is that this seems to be a major land-grab (yet another!), where one very tiny group of researchers is trying to lay claim to every condition they can. Suggesting GET as a treatment for ME, for instance, is a major warning flag which you haven’t even bothered to critique.
Many studies have found that mild exercise is helpful for FM and although that NIH did lump ME/CFS in there, the blog was really about FM. I think central sensitization is present in both diseases -stimuli problems and problems with pain are also commonly but not always present in ME/CFS.
But who knows how far the CS goes? As you note with the dorsal ganglionitis there’s obviously much to be learned. I do believe that Clauw is a bit too quick to draw conclusions.
With regard to the SFN – what if the small nerve fibers both in the skin and inside the body are damaged? That could change everything.
Before getting all bent out of shape about the title I would suggest readers listen to the talk. It is sensitive to FM patients and in no way disrespectful. In the context of the presentation the title makes sense.
I’m sorry about the upset about the title but I agree that the talk and Dr. Clauw is quite sensitive to FM patients. In fact, Clauw was speaking out for people with FM -arguing that this is a real and serious disease – for many years when others weren’t.
I’m surprised he didn’t mention EDS (type 3).
I’m someone who scored over 25 on the FM questionnaire but most of my bones (including every rib and most of my vertebrae) partially dislocate throughout the day and I have more muscle knots than any of my 15 physical/ massage therapists have seen. One tiny muscle had over 50 individual knots, and my nerves are trapped in these knots.
I can reduce my pain my doing trigger point release on myself, but it takes 2+ hrs and needs to be repeated multiple times a day.
I’ve also had vulvodynia for 7 years (I’m 28). I didn’t respond to any gaba or ssris, in fact they gave me depression, which resolved within 2 weeks of being off them. I consider my vulvodynia 95% cured now.
The thing that fixed it was a compounded estrogen/ testosterone cream.
Also realizing that my pH is severely abnormal causing yeast infections 12 times a year on the same day each month. I’m on a maintenance dose of flucanazol each month, which prevents that issue. Any more than once a month and I develop BV, which immediately triggers the vulvodynia (my original vulvodynia started with a bacterial infection).
So, for vulvodynia at least, I do not agree that it’s just an abnormal pain response. I think it’s a normal pain response to an abnormally large pH change in the tissue, caused by infection and/ or lack of hormones.
I agree that EDS should be in there and we shall see about problems in the body. The weight of the evidence is in the central nervous system but suspect as you do that there’s more going on in the body than Dr. Clauw believes. That said, although, the presentation was two hours long it was a general presentation to patients. It would be interesting to hear what Clauw thinks about the EDS and the POTS connection for that matter, to FM>
Doctors diagnosing “FM” absolutely should also test for EDS. They should all know about this.
It should be this simple: if someone has all the FM painful spots; THEN test their limb mobility. People with FM will have limited mobility. People with EDS will have excessive mobility.
Someone with EDS misdiagnosed as FM, will eventually be diagnosed correctly because of the trajectory of this condition. But a lot of time was wasted meanwhile.
I agree with that.
Phil Hayward re Misdiagnosis– I believe that the correct way to view FM in the context of EDS- is that it is a complication of EDS in a reconditioned individual. You can find many EDS individuals who are fit and happy. Many of them work as contortionists and are spectacularly fit. However, should they sustain a bad injury and become reconditioned they do badly.
Andrew, your comments are very interesting. So people can have EDS and not FM? But you suggest an injury can have severe consequences. So many of us with FM, succumbed to it following an operation, others following an accident where wounds were involved. I hypothesise that there is a disruption to “flows” of some kind at the location of the cut or torn fascia, which tips the system into a negative feedback loop of effects including sensitization of the CNS. But not everyone who has an operation or accident gets FM, so obviously there are other inputs involved as well – genes, life stress, occupation, diet, existing toxicities etc.
It is the likely combination of inputs that leads me to think the disruption is a disruption to fluid dynamics, which leads to adhesions. I really appreciate your comment above about chiropractors understanding neurology to such an extent that mainstream doctors should listen to them; there is a similar focus that mainstream professionals need to learn from, in a very small group including Robert Schleip, who are learning everything they can about the fascia. Interestingly, Russ Schierling is a Chiropractor, and I know of no other person’s site where there is so much research assembled.
I agree with your viewpoint that in FM, the system is locked in a negative feedback loop of effects and doesn’t know how to unlock itself. The involuntarily tightened muscle fibres maximise adhesion formation, which makes relaxation of the muscles even more intractable. Proneness to injury because of the stuck and inelastic fascia, sets up a syndrome of “movement avoidance”, and bad postural and muscle-deployment habits are entrenched. And you are quite right about all the “co-morbidities” such as disrupted proprioception. There are so many points at which an “expert” can come into the patient’s condition and leap to a conclusion that “aha! FM is…..”
If only it was fully accepted just how comprehensive a set of dysfunctions FM is once the cascade or loop has set in, patients might start getting the sympathy they really deserve, and maybe the research attention.
One way injury (due to car crash, overstretching too far in EDS, surgery) could cause FM and fit into Phil’s fascia theory is my “two component glue” idea. Fascia liquid contains a sort of protein that is useful in wound healing and sealing. I had looked it up somewhere and can do so again if someone desires so. The thing is it is generally present, so not only at injury. But it doesn’t form scabs, sealing or highly viscous stuff under normal conditions. So it requires “something special, additional”.
Think of the yellow/orange liquid that is not blood that emerges when small undeep wounds are made to the skin. It does not bleed but it is sticky and dries up as a hard thin sort of crust yet different then scabs. Here it is easy to think up of potential differences to trigger the wound liquid to solidify like exposure to different temperature, oxygen…
It is harder to imagine what could trigger the wound healing proteins to activate in the fascia… until you think of two component glue. One component is ever present in the fascia and thus always makes contact with the muscle fiber. The other component is present in the muscle cells/fibers. When the cell walls are good, the two make no contact. When injury happens due to a dramatic event the muscle fiber cells get damaged and the two components make contact. Result: sticky glue that over time becomes semi solid stuff. If the damaged muscle cells stays too long in contact with the same fascia fiber both might become glued together.
Once that happens on a big enough scale, movement of the muscle will become restricted, muscles will be tight (“unable to relax ;-)”), small initial deformations of the muscle/fascia will appear (initially unnoticeable) and pain arises.
Everyone having had this yellowish skin “sealers” (that also contain sterilizing chemics) knows what happens when you try (too early) to scratch them away: the wound is reopened, new yellowish liquid covers the wound and the whole damaged area further increases and becomes more painful. Now think what happens if you would have these “fixing” parts of your muscles and fascia and you exercise trough pain: more extensive wounding and scab-like structures. And as your muscles move with semi-detached semi-solid scab-like structures grinding to all things in their path new damaged sites emerge.
After time, so much damage is present along the line of movement of the muscle that very small force and movement does cause further damage and pain. At each of these sites inflammation rates increase. And with so much “glue dots” between muscle fibers and fascia it’s normal that muscles are tight and “unrelaxed”. Kinda sounds like FM doesn’t it? Also many patients say they feel double pain when there is a sudden drop in air pressure. Kinda makes sense in this idea. There are enough leaks or poor quality solid seals that could easily leak. Pressure in the cells probably goes down slower then the fast dropping air pressure due to for example weather changes. More leaks occur all over the place so there is sudden massive mixing of component B of the cells with component A in the fascia liquid… and muscles feel very “stuck” because they simply are partially glued together with microdots of 2-component glue spread over the entire muscle.
This idea is also in line with how pacing and Phil’s (and to a lesser extent mine) exercises could help improving FM. It’s like in real scabs: tearing them off in one quick go is not a good idea. Doing nothing at all ain’t the quickest way to get rid of them too. In FM this matters because getting your muscles too long stuck creates a toxic environment that creates it’s own set of problems and weakens the muscle too… leading to easier new scabe-like structures. So how could we attempt to reduce it? Like scabs heal better with regular soft massage and tiny movements FM muscles might do just as well. Just my 2 cents.
I agree with much of what you have said. I don’t have vulvodynia but I do have EDS. I find much of the article non-applicable to myself. And–long term opioids DO work for my pain and the TCAs, SNRIs and ‘pentins’ do not.
The take home for me here is that the doctor thinks he knows what is going on–but I suspect he really does not know the full picture.
I suppose the caveat in the fibromyalgia ‘test’ is that it excludes ‘exact areas’ with ‘definite causes’ (like in EDS). So if your pain in somewhat ‘diffuse’ well–you get a maladaptive score (I’m being a bit facetious)…
The best researchers look closely at where their theories DO NOT work.
Hi Cort,
At first I found the title offensive also. However I know you provide very valuable information so I felt it was beneficial to not jump the gun and read the article.
Thank you
Thanks Marsha. I understand how seeing that title could be painful. I didn’t particularly like it myself but brain was tired and I just went with the title of the talk. I did, however, amend it with this “(Hint: It’s Not Psychological)”. which in retrospect was an obvious thing to do.
ME/CFS patients have plenty of pain too. Many have both ME and FM. Dr. Naviaux has shown that ME patients mitochondria shut down on a grant scale. At the current state of the art in medicine the question is not “Is the pain these patients feel all in the head?” but rather “How on earth are these patients still alive to feel the massive dysfunction and pain this must cause?”.
It might be very interesting to see the results of the equivalent study to be done on severe FM patients. I guess it would be RIP it’s all in the head.
Agreed, when severe body wide dysfunction cannot be solved and even worsens then a healthy response of the brain is to further increase fatigue and pain levels. I believe in many patients this happens, and in a significant subgroup a dangerous adaptation to tolerate more fatigue and pain happens. Extreme fatigue and pain do there unpleasant job: very strongly reduce activity in order to reduce additional damage to the body and reserve resources for attempts at reparations.
So: amplification of pain in FM? That would be the healthy response *when actual underlying problems and sources of pain cannot get solved*. As far as I know at the very least there is strongly increased oxidative stress around the body in FM. When will doctors learn to appreciate that if “mere” heat, cold, pressure or cuts can cause pain, severe chronic oxidative stress might just as well?
Dr. Jarred Younger, a researcher of Fibromyalgia and CFS/ME at UAB, says Fibro could be an auto immune disease of the brain. He’s also mentioned the Small Fiber Neuropathy. I don’t agree with the article saying pain medications don’t work. Of course, almost none of us can find a Dr. to really help.
Please read the article again. Clauw doesn’t say that pain medications don’t work. Clauw lists quite a few pain medications that he says can work while making it very clear that the pain meds do not work as well as other drugs for other diseases. As to opioid pain killers Clauw doesn’t like them but even there he acknowledges that they do work for some patients and that they can be helpful for dealing with flares. He doesn’t believe that long term consistent use of them is generally beneficial and studies agree – in general long term chronic use of opioids is not usually effective for chronic pain.
This statement is only partially true, “Clauw’s brain studies show that the opioid producing system is upregulated in FM. In fact, it is so amped up that Clauw believes the brain is being flooded with opioids, leaving no place for opioid drugs to work on. But LDN works by blocking the body’s own internal opioid system. (Naloxone – which LDN is derived from – is used in opioid overdoses.)”
LDN does block the body’s opioid system/endorphins, but only temporarily. Then that temporary block actually causes the body to increase the amount it produces.
Yes, but that proves Clauw’s point doesn’t it? LDN temporarily blocks the opioids – removing them from The receptors – thus providing them the opportunity to work when they increase again
Putting Endometriosis in the same category as a “pain disorder” demonstrates the expansive ignorance of the medical profession. As a female who suffered from DEEP INVASIVE ENDOMETRIOSIS and the bowel resections, hysterectomy, multiple surgeries after hysterectomy and hormonal drugs that are used to “treat” this disease…I strongly encourage all the men to Google DEEP INVASIVE ENDOMTRIOSIS and then explain to me how ENDOMETRIOSIS is “all in my head”. I also have suffered from CFS/ Fibro for most of my life. Because Endo, CFS, Fibro, migraine etc, etc, are predominantly “female” diseases and are still referred to misogynisticly by the medical field, these diseases have been dismissed…this has been the case for the 65 years I have been on this earth…no progress has been made in my lifetime. It does not advance our cause to keep perpetuating myths like this in articles like this…Dr. Clauw is hardly the end all expert…
Please someone out there who can cure fibromyalgia or block the pain receptors at least so we can function. If you do you will be a billionaire, so many people in chronic pain.
You’re not kidding. Chronic pain is one of the most common conditions. The economic costs are immense and the treatments not very effective. Whoever can come up with a really effective pain drug will reap billions. Look at Lyrica – a cash cow for its maker – and it only helps some who are effected and can have significant side effects.
Check out a new initiative the federal government has engaged in called “Heal” – its throwing much more money at understanding how pain is caused so as to come up with treatments – https://www.healthrising.org/blog/2018/04/09/the-opioid-painkiller-crackdowns-silver-lining-for-fibromyalgia-the-heal-initiatives-to-end-chronic-pain/
I’ve had FMS symptoms since 1952. In 2014 I went to the Brain Treatment Center in Newport Beach, CA. The doctor that runs the place, Dr. Jin, looked at a scan (might have been an MRI) of my brain and said the nerves were overactive and he was surprised I wasn’t climbing the walls. After one, that’s right ONE, treatment with the magnetic resonance therapy device, my body wide pain was gone and has never returned. I still have FMS, still have huge rubbery lumps where there should be normal muscles, and my movements are restricted, but it doesn’t hurt any more. I went ahead and stayed for the whole 3-week therapy, and some other benefits appeared throughout, but just to be out of pain was the best. I understand the same thing can be accomplished with an audio visual entrainment device, but it takes a year of using it every day for 30 min.
Wow….Congratulations and thanks for sharing that. My understanding is that TMS changes the connections between the different regions of the brain. Since as Dr. Clauw notes some of those connections are over active in FM TMS could, if its directed properly, calm those down. I’m a little surprised that he didn’t mention TMS.
Your pain is gone but you still have some other symptoms is that right? Is your functioning back to normal?
Not sure what you mean, but I’d have to say no. If I over-use the muscles, which doesn’t take much, they knot up and there can be some minor pain for a day or two, just like normal people. Also, I might add I’ve always had a high pain threshold, which does help, as well. But the difference was very dramatic from that first TMS treatment four years ago, until today.
That is incredibly interesting; you say you are still aware of malformed tissue and dysfunction and limitation and low-level pain but the MRT removed the chronic pain? I don’t know how much you have followed of my commenting here for the last few years, but I have had success with the opposite approach; I have slowly managed to restore the muscle tissue towards normality at a significant cost in daily time and money, and the chronic pain has diminished in tandem with the resolution of the muscle tissue issues.
What I wonder is, the elimination of the chronic pain by way of MRT, may make it a whole lot easier to gain the physical improvement if you would like to try. I would certainly leap at the opportunity to get the MRT treatment even though a different, “long way around” approach has helped me.
The therapy as Dr. Jin uses it is not available anywhere else that I know of. Other psychiatrists use it for depression. Dr. Jin goes through a different diagnostic method to determine exactly where on the patient’s head to place the device and also determines the best frequency to set it at for each patient. Doctors who use it for depression all put it in the same spot and on the same frequency.
There is a vital distinction to be made between the problem being “in your head” and the problem being of a psychological origin.
The issue is that we have two different pain pathways, the lateral pathway( which diverts through the lateral thalamus to the somatosensory area, which is more concerned with the “where” of acute pain and more responsive to opioids) and the medial pathway, which diverts through the medial thalamus, the anterior cingulate and the insult, and is more concerned with evaluating the potential threat of the pain. One of the issues with this pathway is that it receives interoceptive input (which includes information about the stress response) and it also can produce a stress response if the pain is evaluated as threatening.
So it is easy to see that there is enormous potential for a positive feedback loop here- and a feedback loop which is entirely subconscious and is not related to any psychological mechanisms.
Equally the medical profession has not been good at recognising that many of us have a pre-existing elevated tone of the sympathetic nervous system due to physiological mechanisms (subtle balance impairments and mild orthostatic intolerance are common and often give rise to issues with anxiety or ADHD- in my case, or they might just give rise to a very driven, wound up personality).
My own experience has been of a regional pain syndrome involving upper back, shoulder and neck in association with severe fatigue (which at times looked more like a FM pattern, and at other times looked more like a dystonia), in conjunction with a long standing ADHD pattern- which was not recognised until my mid 40s). I’ve had to go through quite a process to identify and address the causes of the pain syndrome- but in the end found functional neurology approaches more effective than any medication.
One of the more noteworthy aspects to the problem is that the medial pathway is largely free of opioid receptors. Another interesting aspect is that part of the problem is a dominance of the part of the anterior cingulate gyrus that attends to pain over the part that attends to vibration. This can be addressed through complex exercises that divert attention more to cold. There area number of videos addressing this technique and related ones on You Tube– look up Dr George Kukurin and Fibromyalgia (or Tone Pacer).
I was very surprised to see how well this exercise worked.
Thanks Andrew for explaining that. I had never heard of Kukurin. When you mentioned cold I thought of Wim Hoff’s (the Iceman) cold immersion and breathing techniques which are designed to boost autonomic and immune functioning. I wonder if something similar is going on??? https://www.wimhofmethod.com/
The Wim Hof approach is only tangentially related.
I attended a lecture on Skype by Kukurin for the Australian Academy of Functional Neurology last September. What I liked about Kukurin’s approach to lecturing was that he spent 3/4 of the talk outlining the papers that supported his position, and only then explained the proposed treatment that he had devised. Everything he said was based on a solid bed of published science.This one was particularly significant:
Attenuation of Experimental Pain by Vibro-Tactile Stimulation in Patients with Chronic Local or Widespread Musculoskeletal Pain
Roland Staud, Michael E. Robinson, Casey T. Goldman, and Donald D. Price
Eur J Pain. 2011 September ; 15(8): 836–842. doi:10.1016/j.ejpain.2011.01.011.
and this
Recent advances in the treatment of chronic pain with non-invasive brain stimulation techniques
Felipe Fregni, Steven Freedman, Alvaro Pascual-Leone
Lancet Neurol 2007; 6: 188–91
and this
Neuroanatomy and Neuropsychology of Pain
Khalid S, Tubbs R (October 06, 2017) Neuroanatomy and Neuropsychology of Pain. Cureus 9(10): e1754. DOI 10.7759/cureus.1754
Thankfully things are changing and we are getting much closer to getting a handle on these things. I can finally report that I have now virtually resolved my pain issues after 25 years.
Wow. That’s really something. Thanks for the report.
Andrew, this is very interesting. Something that has occurred to me, thinking through the discussion on this thread, is: to what extent could the CNS itself be affected by the presence of toxins or chemical imbalances in the intersticial fluids?
The CNS works at least partly on the basis of chemical reactions, does it not? To what extent are the various parts of the CNS exposed to or immersed in intersticial fluid? Even the spinal fluid is part of the “intersticial” system that has recently had its fluid dynamics mapped.
Is there an over-riding assumption that what goes on in the CNS is completely encapsulated so that no toxins or chemicals out of balance will trigger any dysfunctions?
http://www.doctorschierling.com/blog/is-sciences-latest-discovery-the-interstitium-really-a-new-organ-or-is-it-something-the-fascia-research-community-has-known-about-all-along
Phil, I was first diagnosed with FM (before ME/CFS) while I was still running, biking, and very active. I started feeling as if my legs were tight and made of cement. Could waste products from intense exercise (lactic acid problems) have deposited into fascia after the muscles could not longer store it or clear it out? I have also read somewhere that perhaps fascia is tight in order to help out the muscles (keep us upright and also help with autonomic dysfunction including orthostatic hypotension)? I have a lot of nerve pain and suspect that it’s either tight fascia and/or pain amplification. SSRIs/SNRIs make me sicker so that is never a solution for me. Can’t find anything to help!
I absolutely think that is part of the problem, Tanja. I’ve been commenting on this site for years. Toxicity creates adhesiveness in the fascia, and post-exertion toxins are a likely element in the toxicity. But everyone with FM also has other toxins – get a Hair Tissue Mineral Analysis – and possibly undiagnosed infections. I don’t thing any one thing is “the cause of FM”, but certainly there might be a genetic vulnerability. I think it is a number of factors in combination that “tips” the patient into a spiral or loop of feedback effects – the CNS sensitization is the point at which it is “all over for the patient” – they have full-blown FM. The sensitized CNS keeps the muscles tight involuntarily, maximising adhesions and knots and lumps and bands which are then unresponsive to treatments of all kinds (or relapse quickly after anything temporarily resolves them, such as Cortisone injection).
I pushed FM into remission back in 1997, through a week-long fast. Ketosis corrected my central nervous system hyperactivity. (I suspected the vagal nerves were the cause of the hyperactivity.) Mine was a complex and serious case, encompassing a history of Erythromelalgia, vulvodynia, IBS, EDS-Classic, ME, etc. Myotherapy was a good initial, stop-gap therapy. And, Dr. Clauw put me on Flexeril (took me 9 months to wean-off that wicked drug!) Still, he has given his life to help FM patients and done the most thorough research on FM so, we would do well to listen to him.
That said, I’m not totally convinced about the ‘heightened pain sensitization’ explanation. It seems obvious to me that my over-tight muscles and fascia were responsible for my chronic pain and stiffness. Otherwise, why would a muscle relaxant do anything to address the situation? Anyway, when my week-long fast came to an end, the first thing I noticed was my muscles and skin were soft a supple again, unlike from their typical rock-hard state. It took about 6 weeks, for a complete remission but, FM has not returned, after more than 2 decades. Extended fasting is great for a number of reasons but, I know of no other FM patient who has tried one. Perhaps others can share their experiences with extended fasting?
Congratulations Maureen and thanks for sharing that. I think you demonstrate as does L. Bickford that FM like ME/CFS is a heterogeneous illness. I’ve long known of the benefits of fasting and have tried it but I can’t get past a day or two without having really negative symptoms. Dr. Courtney Craig, an ME/CFS/FM patient, strongly recommends intermittent fasting and ketogenic diets – they have helped her enormously.
How long did you end up fasting for?
Those interested in that kind of fasting might want to check out this blog: https://www.healthrising.org/blog/2014/07/10/craig-fasting-health-fibromyalgia-chronic-fatigue-syndrome/
I invite you to continue to spread the good news and share your recovery story on Health Rising ME/CFS/FM recovery stories page in the gut and diet section – https://www.healthrising.org/forums/recovery-stories/categories/diet-and-gut.128/
That’s interesting Maureen! Just as Cort I too wonder how to fast for a week as an FM or ME patient. When fasting approaches 24 hours my vision gets really blurry and I get totally disorientated. It’s a different feeling then brain fog. Maybe a bit like brain fog combined with a rather strong adrenaline rush.
As I eat very few added sugar and moderate carbs only that should not be the problem. Maybe it could be that I probably digest poorly proteins (recent discovery) and maybe fats?
Do you know what made you able to do such long fast? Did you do a special preparation? Thx in advance.
Sorry Maureen, only now reached your answer below. Thx for the clear discription!
I thought this article was actually really insightful and the title was creative with the irony placed in it. I don’t think most people got it as sarcasm but I did. But that’s ok because it can be a sore spot for many. Hopefully everyone actually read beyond the title because there is great studies and findings in here. I have found flexiril and Valium to be the most helpful out of the many drugs given to me while everything else has worsened my symptoms so it was cool to learn why. I hope more doctors look into these studies and helpful advice. Thank you!
In ’97, a researcher from NY, told me she knew of only 22 other patients who had achieved a remission of FM, like me. After Dr. Clauw confirmed my remission, he said he was interested in doing a study including fasting and/or juicing, which was the protocol I used.
Afterwards, I also did an elimination diet to identify intolerances to common foods or meds. Research at the time, pointed to about 20 intolerances were experienced by patients with FM. (I believe they used an ELIZA panel for testing). In my case, I found I reacted to gluten, lactose, cucumbers and the nightshade family. But, I added histamine to the list since I also have Mast Cell Activation Syndrome.
One thing that hindered Dr. Clauw in ’97, was Georgetown cut their budget and eliminated most of their dietitians so, he couldn’t perform the study. However, he recently told me he’s been doing a study about fasting at the U of MI and, it’s showing promise. So, perhaps he and others will discover that ketosis can help all types of ‘fibromyalgiacs’. Dr. Clauw seems to lean toward natural options, which is better for us all.
I can see there are various types, causes and grades of FM. I have EDS and Dystonia in my mix and a high ACE score (early childhood trauma) which has been shown to predispose people to developing chronic pain conditions. Epigenetics has a huge impact when it comes to triggering symptoms.
I’m a believer that our bodies hold built-in systems for healing and those systems can go a long way to reduce symptoms and also, push some into remission. If we will only work with our bodies to help them heal (or at least not hinder them!) we would be better off. So, I think we need not be enslaved by our genes.
To answer your question, the fast that I used in ’97 included liquids and no solids. I achieved ketosis even though I drank a couple glasses of protein powder drinks and one 16oz. glass of organic celery, carrot and beet juice, every day, for a week. After that, I added one food at a time for about 6 week (an elimination diet). The past 8 months I began doing five-day fasts, every month, to fight back other ailments, that have crept-up over the past 20 years.
I follow the research of Dr. Valter Longo, at UC Davis. He developed a Fasting-Mimicking Diet(FMD). It was the way he helped convince his research subjects to agree to participate for 5 whole days; basically is a kinder-gentler fast that still achieved ketosis. I use a FMD-hack by slowly entering ketosis by eating half my normal calories the first day and thereafter, I eat 2 avocados a day, for the remaining 4 days. I also add electrolytes to avoid headaches and of course, I drink plenty of water.
I typically enter ketosis by the second day and though I can feel cold or tired, I never feel hungry. While the health benefits are amazing, I also enjoy the time and money saved shopping, cooking and eating. You quickly discover that the amount we eat is more out of habit, than need. The first month, I experienced a dramatic remission of erythromelalgia (in feet, hands and face) and a dramatic improvement in my blood work (lower glucose and A1c numbers, etc). Dr. Longo is currently doing studies into fasting/ketosis as a novel treatment for cancer. (Lower glucose does starve tumors.) You can read about his research at this site: https://prolonfmd.com/fasting-mimicking-diet/
Thanks for all the info. Maureen I fully believe in the power of fasts and wish I could do them. I will try in the future. Thanks for the reminder.
I would like to relate an anecdote about a friend of mine who also has FM.
I was trying to encourage him to do the things I have done to get improvement, and I was demonstrating the things I can now do, that I couldn’t before. Such as squatting down, doing a quad stretch, and grasping my opposite elbows behind my back. My friend curiously reached his arms behind him to see what his mobility was like, and immediately winced in pain and quickly brought his arms back in front and started rubbing a spot right in the middle of the biceps, saying “ow! ow!”
I said, “you poor guy, I know exactly where it hurts, and I know there might be a painful pinching sensation there for a week or two now”.
Fascia getting stuck, explains this and numerous other triggered pains in my experience. I saw this other guy trigger exactly the same local “injury” as one (among many) that I was painfully familiar with from the past. How would a problem with the CNS as the cause of FM, do this sort of thing to people?
Hi Phil,
Do you know of any work (maybe by the doctors you refer too) that links your FM/fascia/local injury ideas to actual physics? If so, I’d be very much interested in some resources/links. Having an engineering background I *might* have been able to explain some of your (and some others of mine) experiences to the laws of physics. I have tried to see if I could use them to improve FM pain and it seemed to work (early incomplete observations). That was over a month ago.
Since then I could no longer observe it’s effect as I hit the jackpot with an easy dietary change that netted me a decent overall health improvement; I plan to write something soon about the diet thing, probably in the diet and gut section.
Hi Dejurgen,
http://www.doctorschierling.com/
You can spend hours studying relevant information at that site!
Especially, look at his “Fascia” section.
http://www.doctorschierling.com/fascia.html
The research and article sound interesting and complicated. I have FM plus several of those things that occur with it. What about those people who have always done moderate healthy exercise, mindfulness, yoga and eaten purely—-yet still end up with fm? Also I am happy with my ‘new knees’ they are inserted via surgery and the only part of my body that no longer hurts—ever. I wish I could get a new back, hips, fingers and arms!
I am quitting my full time job so I can go back to taking care of myself full time—like I used to do —so I can cut down on pain, opioids and pill use. Maybe what we need to know is that caring for ourselves with fm is a full time job.
I would love to devise a life questionnaire for a large cohort of people with FM, to try and tease out the factors that were common to all of them in succumbing. I certainly think moderate healthy exercise and yoga should reduce one’s vulnerability; so would dancing, playing squash, trampolining, table tennis – anything that involves a lot of rapid co-ordinated movements and balance.
But maybe there is only so much that one can do to ameliorate the burden of other factors such as a sedentary job with bad postural demands, life stress, environmental toxins, genetic bad luck, etc etc.
Hi Phil,
Are you suggesting “playing squash, trampolining” should help decrease healthy peoples vulnerability to FM??? Or do I read it wrong? Both submit the body to very high shocks at short intervals, ideal to create mechanical damage IMO. Playing squash is renown to be harsh on muscles.
Opioids DO work for some of us. I respect Clauw’s work on fibromyalgia, but disagree that pain medication does not help over time. I have tried almost everything he suggests and more with no relief and some bad side effects. Hydrocodone taken moderately enables me to function. I use it cautiously and have for 16 years. Yet legislators and those terrified of abuse want them removed altogether. Then I will be without any recourse since I already exercise, eat right, and am otherwise healthy.
Thanks for sharing Dr.Dan’s (that’s what us locals call him) talk. I was able to sign up to hear him shortly after being DX with FM and brought my Aunt who was having many of my symptoms. It was interesting to see how his talks change with updates on meds (including off labeled ones too) and latest research. I live in Ann Arbor and go to UMHC where his research center is. I’ve been accepted for 3 of the research studies. I also saw him at another’s city’s support group. He makes rounds throughout S.E.Michigan every year spreading what he knows. Trying Lyrica, Cymblata and gambapentin either side effects of my brain functioning steered me off or after a decade they were no longer working. He has the credentials to show he knows nerves, brains, and the major chronic pain issues. He’s always been truthful of where the grant mineys come from AWA protocol from his employer, nevertheless he is honest on the virtues of cannabinoids LDN and the failings of the “date drug”. Great team of docs and staff that keep us all in their minds when they set up their research components right down to the seating in their conference rooms. I appreciate all the CFPRC at University of Michigan are doing to unlock the mystery. Yes I am now only on cyclobenzaprine and trazadone for my sleep and pacing. I no longer work and am not raising a family. All my On/off bouts with the cormomidities are endured by pacing, resting and learning to let go what I can’t change as yet. I have a huge understanding and empathy to all those out there with far more fatigue and chronic pain than I.
I have CRPS. I’ve been reading all these posts one of my biggest issues is I have severe myofascial pain syndrome. My doctor wants me to do pt a gentle version my body hurts to move but if I don’t move it hurts. My muscle knots is so terrible my whole trapezius Feels Like a Rock and I have nots everywhere that are pinching nerves. I have read that you have to get the myofascial pain syndrome under control before doing PT Botox did not help me that actually made my muscles worse because they will all unbalanced. I am wondering what do I do to get the myofascial pain under control I cannot do Active Release therapy or even massage it’s too aggressive on my body. Does anybody have any suggestions? I really need help I’m really struggling I have structural issues but they’re not warranting surgery. But it’s very hard movement makes everything hurt worse but I moved because I am afraid of losing movement. I need so much to figure out what to do about the fascia my arm Burns and I am in a level of pain that is undescribable but when my doctor asked me what hurts the worst I tell him it’s my muscles being so tight if I could change one thing I could live with the burning because I know that when the muscles are so tight they making the burning worse he says it’s because I’m not moving enough that I have to try medication to help with the pain so I can move better and get occupational therapy after I get some relief for the medicine I believe the fascia has to be addressed I don’t know how to get him to believe me because I’m not a doctor and I don’t even know what should be my next course of action. Maybe someone can help me. It all started with me getting injured and then the CRPS developed and the muscles started to get so so tight I feel like I’m in a straight jacket any advice is welcome I am at my wit’s end.
So how do we address the myofascial pain syndrome I have severe myofascial pain syndrome and CRPS I need to come down before I have PT what can I do I can’t do aggressive massage or art help?
I went to see Dr.Clauw at a seminar too at U of M here in Ann Arbor, Mi. back in 2015, because I was diagnosed with FM in 2013. I thought he was really good at informing/updating us of the issues with FM and chronic pain, but I think I have EM/CFS on top of the FM problem, as I have extreme fatigue/flu-like symptoms that are more severe after some sort of physical activity. My question is can most of these diseases be triggered by a hereditary mutation in your genes? I carry the Fragile X pre-mutation gene that can produce several symptoms (including FM, but mostly in women). Has there been more DNA research looking in to the likely connection between defected genes and FM ME/CFS?
Thanks
Unfortunately the NIH is putting very little money into FM research. I think there is some genetic research going on but am not aware of any focused on the fragile X gene.
Hey Cort, Thanks for the reply. I know they do some research for Fragile X as my neurologist is one of the doctors that specializes in it at U of M, but they seem to be centered on the genetic mutation properties and little on the symptoms that possibly come from it, except for the common signs like tremors, unbalanced gait in carriers and autism/mental retardation in full blown Fragile X. Although on FXS websites,they do mention other symptoms that appear associated with it,but since it is a rare disorder, and little funding as well, there is still a lot that is not known.
Simply Commmandale loved the ideas and the article beautifully explained about the pain.
Hi Cort – Is there some way I can find this article? Thanks, Judith
The title of the video by Dr. Daniel Clauw (on You Tube), “Is It All in Your Head?” is just reflecting what some people think of fibro–that it’s all in our heads. Luckily, there are less people who think that. Dr. Clauw is one who knows that it can be a debilitating condition. Dr. Clauw was just using that statement as a starting off point to discuss the condition. Believe me, he is an ally to all of us with fibro, as he is a leading researcher in fibromyalgia. He was one of the first to show Pet scan proof that there is something going on in the brains of fibro patients that is different from the norm. Dr. Clauw, and others like him, are the hope for a better future with fibro.
Yes, he has been an important advocate for FM for a long time.
For some reason I can’t see any blog….. or video….