“Fibromyalgia: A Unifying Theory” Dr. Andrew J. Holman

well I didn’t know there was a top ten list it must be Letterman’s list though but uh but thank you for ever put me on that list you know in my office we have a saying when I see patients it’s got to be something you know you come to see me you’ve been everywhere I’m completely sure you’re telling the truth and I’m sure it’s something so we kind of start with that and be honest with you even with all the science that’s one of the best ways to start that I that I know of I was asked to provide pretty much the comprehensive pathogenesis of fibromyalgia it it’s tough going last but when you’re last you’re not taking up anybody’s time so we’ll be done by 8 9 o’clock tonight don’t worry so no but this is this is the abridged version but but you know I don’t study chronic fatigue by find it fascinating and I was fortunate enough to be asked to speak here two years ago and I had a chance to listen to patients on a panel talk about what they felt like and and I got interested in I’m in no way an expert on it but I find it fascinating I certainly hope that that more could be done to help patients with chronic fatigue as I listen to the lectures this morning and as I bring some new data over the last two years I noticed that some of the themes are really starting to overlap I’m not at all a fan that chronic fatigue and fibromyalgia are the same thing and I’ll try to make an argument for that counter to what you’ve heard about chronic fatigue I’m I stick my neck way out there I think we know what farm alta is and I think we know what to do about it and as we’re finding out what it is and what to do about it we’re finding out that many people have it have something else and that may strike you as quite unsettling and it usually does to the patients until I give them the evidence so what I’ll do the best I can is I’ll give you my view and and how I put it together and how I helped help patients with it I’ve taken care of patients with five miles about 15 years and I see two to three new patients every day and I work five days a week so that’s a lot of people and they get the credit for this not me they keep coming back and saying what else do you have to make me say and and you can’t stop trying when people do that so the credit goes to them so let me tell you what they’ve taught me now first I have a couple other disclosures just because we want to be upfront about everything I’ve been advising baron gringo Hyman I actually have the chief scientific officer for two small companies that actually work on this problem since there isn’t any money for us we have to find our own money the objectives here are to look at fibromyalgia from a comprehensive point of view and to begin to discuss a few things that haven’t been brought up today and some that have one is the the issue of benign hypermobility syndrome autonomic dysregulation has been discussed and I’ll go over that sleep stage architecture out a few details on that dopamine which I’m known for is it neurotransmitter and this issue of cervical instability so here’s how we’re going to do it I’m trying to connect the dots patients are complicated but I think the dots can come together I’m going to try to link fibromyalgia with sleep stage architecture based on evidence studies linked the sleep stage architecture with restless leg syndrome and bruxism grinding teeth talk about how restless leg syndrome is linked to autonomic dysregulation how the autonomic dysregulation is linked to benign hypermobility which runs in families and is certainly genetically associated how autonomic dysregulation is controlled by dopamine in the limbic system and don’t worry it’s not as complicated as the last few slides and and finally hahas autonomic dysregulation have anything to do with cervical instability and what what exactly is cervical instability now I don’t need to go over what fibromyalgia is I think everybody knows what that is chronic widespread pain and and we’re a little fussy about it we like people to really be tender and there are patients who come in and they don’t have tenderness everywhere and we know it changes from day to day and that’s actually important to understand why it changes from the day but you pretty much have to have surface phenomena to have fibromyalgia and it should be global and it would be nice if the tenderness on the outside was as bad as the pain on the inside and the story fits with the exam and many times it doesn’t and I’ll bring up why I think that’s an important clue for clinicians we’ve been looking at a lot of problems this way this is from Stanley block from Portland Maine 1993 rheumatic disease connects you know everybody’s trying to help patients with five miles at least if they’re committed and and and doctors that aren’t too lazy and so the ENT is looking at the TMJ the sleep experts looking at this sleep the cardiologists looking at the unexplained palpitations and chest pain you get the idea I’m gonna try to make a case for the big picture so we’re going to start with sleep architecture about everything else I believe that Harvey madoski was right more than Harvey mold Oski even thinks he was right and Harvey mold offski is a sleep physiologist who just didn’t buy it that people had pain because of the psychiatric cause and he was a psychiatrist ill a psychiatrist and he’s quite famous and I believe he did the first pivotal study the problem was it was in 1975 it was only six patients and it was before the official criteria of fibromyalgia but what he did was he took six subjects he put it in a sleep laboratory these were college students you know I paid him I don’t know twenty-five dollars a night and he he hooked them to the EEG and those of you who have had a sleep so you know what this is all about and you can go through the different sleep stages the light Stage one and to sleep on the EEG the stage three and for deep sleep kind children get and back up and down and REM sleep and you can see this while people are sleeping and what he did is he disrupted Stage four sleep so they’re sleeping he gets a baseline they go to school they come back the next night and pretty much without telling him much as they’re going into stage three and for deep sleep he plays an auditory arousal about 90 decibels startles them into light sleep but he’s very clever he doesn’t play it long enough to wake them up he so they try to drift back into deep sleep naturally does it again this is all night long well he did this for three nights and pay in the subjects basically developed non restorative sleep fatigue a sense of stiffness and aching and eventually they felt like a truck ran over their whole body no tender everywhere now that strikes me as important okay and they stopped the study and within three nights it all disappeared so that’s interesting certainly it sounds like an inducible process we know we torture people by well I don’t but we torture people by sleep deprivation right all right that’s why some of these some of these some of the funding for Fire Mountain research is actually through the military and the CIA and so forth they know what happens to people when you torture them by sleep deprivation you can even make people psychotic you can really mess up their brain madoski did the same study with REM sleep he disrupted the REM sleep instead of the deep sleep and it didn’t cause any of these muscle skeletal or fatigue problems he also did it in our ROTC recruits you know very fit young men women and it didn’t do it either but if you go to the VA I teach at the VA and you meet people who’ve been POWs have been tortured they don’t like to talk about it but if you talk to about it they know at five miles of fields life and they describe something very reminiscent and certainly they were in peak physical condition when they were abused like that unfortunately madoski did it didn’t ly take off everyone was still fixated on this psychiatric issue and and every time you gave anybody anything for Stage four sleep like amitriptyline they would say see it’s a it’s an antidepressant it’s a psychiatric problem and so forth but Carol Wentz at the University of Washington of all places in the nursing school repeated Moldoff ski study in 1999 this time in forty year old women and it same thing happened in the middle of this though in 1997 John Russell who’s very famous five novel researcher tried to reproduce mold osseous study but also look at neurotransmitter levels at the same time and he found that he couldn’t do it but I got a chance to talk to John and if you look at the papers you’ll see something very interesting the arousal that fragments Stage four sleep that madoski is was a noise the computer generated startled me list some of the kitchen where as Russell asked the patient’s pick the music you might pick to wake up in the morning now if they picked my kids music that would be a startle reflex for me but but it was it suggested the nature of the arousal particularly its startling ability to fragment and wake you or at least irritate your sleep may be as important as the lack of stage for sleep as well so this so it looks like you can cause fire melted by disturbing stage for sleep so far well what about Stage four sleep and restless leg well this is a k alpha wave complex slow wave sleep in a burst and then rapid and then back to fly us and again you saw these already the activity you saw them with restless leg this was for mold our skis paper this is what it looks like when you play that noise it’s also been described to me that if you’re a normal individual and you’re sleeping and someone drops a book you’ll get one of these on the EEG it might not wake you up but that’s what they’ll see in the sleep lab sounds a lot like me like a startle reflex and what is the startle reflex an autonomic sympathetic person okay if they’re also seen with the restless leg which restless leg and periodically movement are seen more commonly among patients with fibromyalgia this is Muhammad Yunus 1996 British Medical Journal fibromyalgia patients this is RLS here 31% in this group two percent in controls which I think we’d all agree that’s a little low but still the points there and even 15% in RA but you know what 50% of people with rheumatoid arthritis have five miles or two so if we’re going to talk about sleep and restless leg and K alpha wave complexes and arousal then in half the patients of RA and then maybe you can see half as much RLS well so basically looks like something’s going on there that we can ask about then the question is well what is RLS what is it well know if you ask the neurologists say we don’t really know what it but if you ask Jules Lavigne in Montreal who studies this and bruxism grinding teeth which people with far enough to do all the time breaking teeth left and right it appears that it’s an autonomic issue let’s see the other issues this kind of goes over some old information you got this morning but the issue of fibromyalgia and it’s linked to autonomic dysregulation so you have this housekeeping function your autonomic nervous system get the sensory the motor yah turn on everything you don’t want to think about is controlled by your autonomic nervous system sleep of court arousal running from the lion epinephrine adrenaline metabolic rate temperature regulation sweat glands heart rate blood pressure vagus nerve bowel motility GI acid production bladder function sound familiar a lot of these things from the fibromyalgia brochure they have nothing to do with mold our skis first study with sleep but is everything to do with autonomic these are just a few references in case people wanted to look some things up but I won’t go over it again but in one of them simply use tilt table testing picture Frankenstein you know the tilt table testing to see if patients can maintain their blood pressure one of the fundamental issues of the autonomic nervous system is to is to Bajor constrict as you stand I’ve always thought that maybe we should do five other studies in giraffe because they’d have the toughest time maintaining the blood pressure you have to think about that for a second so other issues with with with dishonor no Mia is that 24-hour heart rate variability is a very important thing for you to know about there are 90 300 references on MEDLINE for this this is a well documented tool to measure sympathetic and parasympathetic function in the brainstem as a affects respiratory cardiac respiratory cardiac rate so as we inspire our filling pressure changes and the variability is there this will change based on whether you lean more parasympathetic or more sympathetic and the sympathetic nervous system is a pacemaker in the brainstem okay and how much your pacemaker is on or off genetically there’s no different than whether you’re faster runners slower runner taller shorter see this is varies among the population that’s an important point but look you’ll see more and more in the future use of heart rate variability to actually measure sympathetic and parasympathetic activity it sounds like in crack fatigue research and also in five miles of course so Josephine would say in Montreal that restless legs and breakfast is Ammar dishonor nam ik that these are just expressions of autonomic arousal you can probably imagine a few others child gets up mill a night think somebody’s in the closet won’t sleeve what do you do give them the drug no calm them down try to turn off that sympathetic fight-or-flight response right bucks ISM and restless legs and more things you can ask of your patients why do not all patients have this if this is such a fundamental issue I don’t know but it is it is helpful to at least ask and then it appears that the K alpha wave complex is probably an expression of the of an autonomic burst that’s probably why everybody has these it’s just depends how many you have when they come if they fragment your stage for sleep you’re in trouble so the next link is okay so we’ve got madoski causes this by lack of stage for sleep the mechanism is to disrupt state for sleep with this noise which sounds like turning on a startle reflex which and it also appears that these reflexes expresses restless leg and Brecht is Ammar common among patients with five miles already what’s going on with hypermobility well hypermobility has criteria and one of the authors is dr. Rodney Graham a chance to medium he’s in London he’s older fella and he has done some interesting work looking at these individuals trying to figure out why they have such unusual things to say sometimes now hypermobile people we’re not talking about the Cirque de Soleil people or the Chinese acrobats we’re not talk about that we’re talking about benign hypermobility I eventually say there’s a very large percentage have it in this room it’s very common it’s like blue eyes it’s a trait it’s not a disease but they tend to get flat feet Conner Malaysia patellae so kneecap pain go up and down stairs unusual spine injuries there’s a little more flexible certain occupations pay the bills with people with high permeability for diet chiropractors very common helping people who have this trait because they can get into trouble and need some help we see them as well in the medical community but sometimes we don’t recognize them because we’re not looking for this basically people have high permeability 25% of u.s. population have evidence of sympathetic over activity naturally not to a pathologic level but that pacemaker seems beyond a little bit more this is not five miles event this is high permeability so what roddy did is it took 48 patients with joint hypermobility 20 controls is a controlled study looking for sympathetic linked questions like syncope pre syncope passing out palpitations unexplained chest pain guess who gets that people who are flexible fatigued heat intolerance temperature dysregulation that type of thing he also took 27 patients in 21 controls and they went they did autonomic testing they did cardiovascular vagal and sympathetic function orthostatic testing and basically what they found is that orthostatic hypotension postural orthostatic tachycardia syndrome pot and other forms of orthostatic intolerance were seen in 78 percent of patients with joint hypermobility and 10 percent of control now these people aren’t going to the doctor saying I’m falling down every day what he’s showing is that they’re different that they lean towards autonomic dysregulation and that’s really the important point here if they eat lean towards autonomic dysregulation and increased sympathetic tone I find that useful to know who can touch their toes and who can and I usually look at wrist extension of cervical rotation because by the time you get to me you’re pretty stiff and you’re not very comfortable but you can look for PES plainness and and you can ask for things were you in gymnastics dance and your kids do have flexible children there’s things you can ask just to kind of get a feel for this and if you know that they have that trait and which runs through all their family then you have to watch out that maybe you’re dealing with somebody who has the potential to increase their sympathetic tone a little bit quicker and faster than some you can also do a little experiment I tell the patients look at a group of people you know you know you know well look for that person who goes the extra mile tries the hardest most dependable reliable empathetic thoughtful multitask go-go-go helps others before themselves they all touch their toes unless they have a bad day look at your staff when you get back to work okay this trait is over-represented in some occupations I’m convinced that most doctors have it although for somebody’s that look like they do certainly nurses do I take care of more teachers and principals you can imagine engineers have it artists have it certainly high level Olympic athletes all have it and I we joked that you can’t even get an interview at Microsoft unless you can touch your toes because they want that fast rapid brain and and people the menses society also bend all over so again there’s a lot of people these are the doers the multitaskers okay so so basically with that background this is how I think of it so here’s my model so you’ve got hypermobile patients all over the place there I got to watch out for them because we already know that they can get Conner Malaysia patellar PES planus they get plantar fasciitis unexplained chest pains there’s a lot of argument with much about Philips and I don’t want to go into that but it’s possible so they’re out there and I’m worried that that Rodney Graham’s right these folks tend to develop autonomic dysregulation quicker than other people okay most of our very functional are doing fine but they can have this stress response sort of rev up a bit that autonomic dysregulation can affect the GI tract GERD and irritable bowel sir it can affect basil motor instability Raynaud’s phenomenon sweat glands I shake someone’s hand and I know what we’re going to talk about people have clammy hands because they’re kind of worried they’re going to see a doctor and not sure what I’m going to say but a lot of these folks have been lots of doctors and I’m not really scaring them and and I know we’re we talking about autonomic issues and then we’ll try to figure out why and what we’re really going to talk about the other thing that’s really not talked about much but I’m interested in is how does the autonomic nervous system the fact expression behavior of panic disorder well it is a fight-or-flight response it’s a regulatory function the reason you have a panic attack in the middle of safely is because the regulatory mechanisms that control that are not controlling it very tightly and it turns on blacks and at the wrong time does it have an effect in post-traumatic stress disorder well I would think so how about palpitations I’ll explain chest pains ADHD there’s a lot of discussion about autonomic issues in a TV ad d and the panic disorder and then I think we can probably agree that it can inhibit restorative sleep and if it does I think madoski is showing what you get so this is the way I look at the world I don’t try to make people sleep I try to let them sleep try to turn off the arousal that fragments their sleep the arousal appears to the autonomic where all the new stuff is what turns on the autonomic nervous system which leads me to what controls the autonomic nervous system and that’s this issue with the limbic system this is from Patrick wood patrick wood is a very fine author young up-and-coming researcher from LSU who’s done some remarkable work on explaining to the rest of the world how dopamine works in the limbic system in the central brain basically I’m interested in this spot right here because Patrick told me to be interested in this spot this is the hippocampus and the hippocampus has a job then here’s the thalamus as well phallus affected from the pain perception issues that I’m not going to go into it with my mother the hippocampus works this way lion jumps out from the tree what happens you see it you’re scared to death your brainstem fires heart rate goes up blood pressure goes up you run like crazy hopefully you’re surviving okay you get away why does your heart rate come down from 200 eventually because if your hippocampus your hippocampus is in charge of the inhibition of the brainstem stimulation adrenaline response okay if the hippocampus isn’t working you’re in trouble so let’s say the next day the hippos up you’ve seen a lion the memory you have experience the brain adapts the brainstem turns on quicker the hippocampus turns off quicker you run quicker else gets eaten again now you’re more likely to be a survivor what happens when the tenth lines there well pretty much the hippocampus is off and you’re ready for a lion at every moment you think there’s lines everywhere but you are going to survive probably the problem is we have many people live in abusive situations where they sleep on the page with the line and what Patrick tells me is that the hippocampus is not functioning in farm algin based on MRI it’s atrophy based on functional MRI it’s not working and based on PET scan data which he just did it doesn’t make any dope Amin and the hippocampus runs on dopamine dopamine has been very important in Parkinson’s research but this is another area and people have five mouths don’t necessarily get Parkinson’s although Parkinson’s patients can get farm algin again if you just not sleep normally what this is is it takes the discussion to another level all these areas here in the limbic system these are areas that are dopamine deficient compared to normal controls this is a controlled trial so this is very important this was published about five months ago of when I was involved with unknown know not knowing about Patrick Lee is that we were looking at restless leg syndrome as an inhibitor of normal sleep and trying to find a way to block it so that maybe you’d sleep a little better and this is what it led to crowd pecks all is same as mere fact and again none of this is fda-approved so just don’t do anything I tell you but at least at least I’ll show you I just present evidence so pramipexole is now FDA approved for the treatment of restless leg with the last ten years it’s been available on every doctor in the sleep lab to use it but so we use low doses and we found that it started to make a difference in the rest is leg somebody in Tacoma of all places just south of me looked at health assessment questionnaires in our in RLS patients and found that fatigue quality of live musculoskeletal stamina all got better with three restless leg I was interesting I think he’s measuring early part Malta by the way and so we start developing this medication it’s interesting crowd parks all stimulates the dopamine three receptors so now we’re gone from dopamine down to the dopamine three receptor not dopamine one four five six actually the sector seven now has a little effect on the two receptor we’re actually talking about specific receptors for the note transmitter and guess where they are they’re not everywhere they’re hardly anywhere they’re in the hippocampus yeah that’s for the no I didn’t know that until I found out so I’m going to review the study that you have in your handout it’s very important if you’re interested in this topic to read the whole paper especially the method section please because there’s some important issues here basically this was a we did two preliminary studies then we did honest-to-goodness randomized placebo-controlled trial and the way it was designed is this this was an escalating dose of cram packs all up to four and a half milligrams at that time the dose for restless leg is 0.5 to 1 okay down here but we had already tested up to 10 milligrams again I’m not suggesting to do that I just think we did and then there was a placebo group here and we followed them for 14 weeks eight visits okay we use proton pump inhibitors to block nausea we found that before we could help anyone with five miles with pain or fatigue we could at least help them with their nausea so we incorporate that into this one important thing this is the only part novel study you will see where the placebo was calcium carbonate most placebos are lactose which strikes me as a very odd thing to do in a fibromyalgia study because the GI issues so people who had any kind of GI side effect they had it on the placebo even though it was tums the other issue is this is the only five miles of study that allowed patients to take other drugs the reason so hard to get these stays done is people have to stop all their medications so who you going to get in the studies the people who have the mildest disease we’re willing to stop their drugs 50% of people on this in this study were on chronic narcotics 30% were disabled these are people who’ve never be allowed into the lyrica studies that duloxetine stays much less would ever go you had to have five miles or at least six months you had to have pain at least five out of ten on a digital analog score so me you know care about me and this very important you could not be in the study if you had cervical pain with extension it’s really important or if you’re on a placebo rather than 12 which is a screen test for sleep apnea we don’t have enough – do sleep apnea scream I wish we did but there it is basically what happened red is the drug this is the visual on pain score they started off about seven eight improved statistically significant by the higher doses this is the placebo through here this was the primary outcome it looks modest because I think I’m the only person and puts the whole scale on here if you put just this than this it looks really big but I thought I didn’t want to do that because I didn’t want to hype it but there it is it helped a lot of people in fact I’ll compare it with some other drugs in a moment this is comparing pain relief scale where patients were asked at the end of the study did you have no pain relief a little moderate a lot of complete now the red is the active and the dark is the placebo so you see there are some placebo people got better and there’s some people on active didn’t get better but it tends to skew towards a response this is the famous fibromyalgia impact questionnaire which also measures psychiatric benefits and all kinds of things that dopamine three receptor agonist for Parkinson’s and restless leg isn’t likely to do much for but even with this the active group with the typically improved just to be just to be thorough there were some things that didn’t seem to change much compared to the placebo group you’ll notice here the tender points score went down 50% in the active drug but went down 35% in the placebo group you know so you get what you get the global score was significantly better in the active group so was the fatigue score a function score Hamdi is the Hamilton depression score it wasn’t much this that looks like a difference but it wasn’t statistically significant neither was the back anxiety so depression and anxiety didn’t seem to make a big difference but if you look at other studies like duloxetine am tripling non-nasa pram all these other things they treat depression so you’re gonna see some benefits there as well that might be helpful for patients I’m gonna go over this more tomorrow but this is and I is in your other hand out there’s another paper review on all the different drugs you can use even some you can’t for fibromyalgia and there’s once say it’s not in there that just came up last week but it basically if you want to compare drugs do it this way subjects with greater than 50% reduction of pain so that threshold when you do a study for osteoarthritis they’re looking at 25-30 percent decrease pain by the way well we’re looking at 50% decrease pain and you want to compare the active arm how many people taking the drug we’re able to get at least 50% decrease pain versus how many people in the placebo because there’s always going to be some placebo responders and what you’ll see is a pre gavel and this is the lyrica 29% had that 50% decrease pain 11 percent of placebo this is the mill massive Pam study that’s it you can’t get that yet but they’re doing a lot of work on barb Malaga this is the duloxetine which is lyrica this this one they had men in which showed some Bennett that didn’t quite meet statistical significant this one they kicked out all the men which that’s that’s that’s discussed in the paper and I believe that for you guys to read and they did much better this is sodium oxalate which is called diagram which is used for narcolepsy ongoing phase three trials there this is not 50% decrease it’s 20% but I wanted to put it in just for completeness this is the this is for pinroll which is the other dopamine agonist 45% achieved this decrease 50% but the placebo responders did really well and so it wasn’t statistically significant and this is the pramipexole one the spreads pretty good so and then this is the reference you happen so I think you’ll find interesting they the authors gave me a lot of leeway to sort of give my opinion so and I don’t work for any pharmaceutical I’ll be so I gave it so the last one is probably the most important issue and it finishes up you notice in the mirror in the pramipexole study I said you couldn’t be in the study if you had pain with cervical extension have you ever seen that in any study for Fire Mountain I’ll answer for no nobody ever thought of it and nobody ever do here’s why I was at the National fibromyalgia Research Association meeting in 2002 it was like a think tank doctors talking to doctors and only doctors the crazy ideas were allowed to come and it was before there was any evidence on dopamine agonists at all Patrick wood got to go the next time but I got to go this time so and then there were and I don’t throw stones because I live in a glass house I mean there were some really odd ideas there but so I’m listening to these two guys Michael rosin and Dan have Fez they’re talking about how people with with five miles and chronic pain have often cervical problem that needs surgery and they’re talking about the key our discussion where people compress their cord with the cerebellum that squeezes down through the frame Magnum and I haven’t seen that much but they were talking about it but they showed me this MRI we looked at the neck in different position now chiropractors are way ahead of us they look at position they’re interested in movement we just getting them Ryan to ask you to hold still right but if you look at the my on different positions you see that this dynamic structure the neck moves and when things move they change shape and he was making the point that the MRI may look pretty good in neutral but they look pretty bad in another position and that we’re missing something important here I thought that was interesting I knew that people with prior knowledge that had a previous trauma many times I thought maybe a few people might benefit from expanding the MRI and looking a little differently at it so I’m waiting my turn the next guy to talk is this pal here dr. Kraft oh he doesn’t take care of people he takes care of rats and what he does is he studies the rat spinal cord and what he shows is that if you have a lesion in the spinal cord at a certain dermatome and you sleep deprived the rat the pain is really brought in more into it’s okay if you don’t sleep deprived it makes sense it’s like the textbook it’s not amplified but the other point he made though isn’t it in an anesthetized rat if you touch the cervical cord you don’t hurt it you don’t crush it you don’t injure it you just touch it just bump it it activates the sympathetic nervous system the effects heart rate and blood pressure well that was a big thing to me because I’m the next guy talking about how the sympathetic nervous system may be fragmenting sleep and causing state and causing fibromyalgia and I’m thinking how many people are hitting their spinal cord and bumping it pretty much how damaging it is bumping it we kid we don’t know and and if this rat data is true then maybe it’s a mechanism by which you can activate the sympathetic nervous system and then fragment the sleep and cause fire mountain again one more domino to knock them all over and sure enough that’s probably what’s going on Lucy’s best I can see so this is a neutral MRI and I don’t know how how many people here read MRIs anybody there’s a few okay let me walk you through it’s not so bad so so they’re obviously looking that way these are the discs these are the vertebral bodies like here and I unfortunately it’s not too bright from my direction these are discs here look like little pillows this is the spinal cord in dark and fluid it shows up as light here also factors of his white but this is fluid normal discs you can see that the space here is such that well if that helped me so what you can see is the space here that protects the cord the cords designed to float and suspended within this tube just like the brain is designed to float it’s not designed to bang into the side of your skull let’s call it concussion and so as you move your neck forward in a normal person the core the canal opens just a little and as you extend it tends to narrow for your design no matter which way you bend you never bump into the cord okay as we get older or injured you may find that a disc bulges out here if this black here is more black out here and there is here and you’ll see that this takes up some space and there’s less fluid but they’re still fluid here’s a bulging disc here this would be considered very mild so this person had horrible pain and if this is a if we have done a regular MRI that’s what we get and we’d say don’t worry a couple of minimal bulging discs don’t worry about well this is what happens when you look in a flexion view okay now nobody does this there’s five centers in the United States that do this now two in Europe which I’ll tell you about later so you bend forward and you actually can see there’s plenty of fluid around the cord it doesn’t look like it’s in distress in any way here’s the extension view there’s no fluid here this dis bulge is much more and more importantly this here that’s the ligamentum flavum so this here and it’s buckling okay it’s buckling and pushing in unfortunately it’s pushing in on the spinal cord so if this were a rat their heart rate and blood pressure go up but this is a person so this appears to be evidence of intermittent spinal cord abutment now we can’t get in there and look at the cord there’s no cord signal there’s no injury of the cord most the time the courts fine just when you look up this is what we get from our radiologists and it’s very helpful to go over this with the patient so we get the views you just saw and then we get the views with the numbers that I’ll show you right now so here’s that same regular neutral view and what her fence tells me is I want to see at least one centimeter of diameter he’s quite strict on this and he believes that most people are about 1.2 1.3 1.4 so 1.4 of nice nice well little boys we’re down to one Oh 3.94 he would not like that but I gotta admit I see fluid I mean I gotta say what I see inflection see how large the numbers get they get bigger and also the cord is tethered so it stretches comic Gumby I mean it it does actually the caliber shrinks down that has been studied by the way but they never looked at the canal so you’ll see that the cord isn’t isn’t fine shape here and then here you’ll see that my radiologist got this down to 0.74 we’ve seen people as far down as point four five walking around been everywhere neurologists seen everybody nobody else with problem now if you take this and you send it to the neurosurgeon they’re gonna say okay I believe but if they don’t have this they can check nerve test nerve conduction studies it doesn’t show a thing okay it’s not injured its irritated and it’s the irritation that activates the sympathetic nervous system so there’s that that is that view again doesn’t look good to me so basically I’ll go over some the data data what we’ve done just to finish up is we’ve done a pilot study to say okay can we get the news out there so people go out there and study this so we looked at two random months and we said who comes to see me okay I don’t see people her neck pain I see little for unexplained pain rotorcraft and so forth and we said how many of these people have evidence of cord compression abutment flattening and at least narrowing to ten millimeters if they don’t get to ten millimeters you gotta at least be narrow and we said how many people have this basically what we saw in two months as we saw thirty two people had to connect the tissue disease remote our prize and so forth fifty three had far from Alta no surprise I you know I studied that and twenty-two had we don’t know what they got they heard all over they sound like fire halogen but they don’t have enough tender points europeans might call them chronic widespread pain and and these are the ages here you’ve gotten in the handout what these are questions that we ask people what does it feel like to sit in a dentist’s chair what does it feel like to have your hair wash and the hairdresser’s saying what does it feel like to look up with a stars actually that’s a new one we didn’t use that one oh we used a grip strength is it weak we wrong feet together eyes closed okay that’s not normal okay and so we look for those clues if you had those I got an MRI if you didn’t have those clues I save you an MRI and work on your room at our threat and so what we found was that oh let me show you what we found is like for instance unsteady gait not big difference between the three groups well look at this Romberg 9% and the people of connective tissue seventy percent of the fair amount of patients that saw those two months nearly 70 percent of the unexplained pain now this is not a Romberg though you fall down this is a Romberg we are unsteady okay so and it’s a Romberg for at least eight seconds with your eyes closed for eight seconds it’s not your typical robber so but it sync pain hardly anybody had saint pain except for the five miles of patients 68% and the unexplained pain 59% these people will tell you they have this if you ask them and if they have it you want to go find out why so basically this is the take-home point only one of the connective tissue people even got an MRI and we have no controlled data here have nobody who is normal we need that study but this is a preliminary pilot study of the five mildest patients I got 49 MRIs 92% I got 91% of the pain people just because of the questions the way they answered their questions and by the definition of abnormal 66% of the f-m patients had abutment compression or flattening of their cord and narrowing below ten millimeters at least one space and 77% they explained pain patients but here’s the reals point the new view was required to show this in 71 percent twenty only twenty nine percent of the patients who had a spinal cord problem showed up on the regular market you’re not even to see it unless you look in extension and so that’s why we nobody’s ever seen it you might also ask about the Kyary we found to found a few some places with flat chord eight people with flat chord didn’t have compression on the neutral view but their cords flat it was on extension but it was on neutral radiolysis in know what to say about that I said well how does it get flat it’s gotta be squeezed you know bore the flat cord they said well we don’t see it well they see it when you’d extend and then we found one case of multiple sclerosis and one of multiple myeloma I was a little scary we also looked at these questions you know how well do they predict who needs an MRI we don’t want to get an MRI and everybody we found that the psych score they tend to have a better psych score and they tended to have higher age but that’s it nothing else was statistically significant and this is really meaningless anyway because there’s no control group there’s no there’s no normal group no one knows if normal asymptomatic people ever bump into their spine a rat data would argue against it this data would tend to argue against it you could think of the adjacent disk as a control disc because it’s not being bumped and the people had surgery who fixed the normal discs usually do very well so there’s plain circumstantial evidence but we don’t have a controlled trial the good news is they’re doing one in London right now and I’m a co-investigator on a barcelona study that’s just about to get started the u.s. study we’re trying to collect money to get it done but so there may be three studies that actually answer the question is this abnormal pathology or just something show-and-tell we found in five miles of patients I think it really matters because there’s a reason why it’s an exclusion criteria in the foot in the cramp axle study it’s an autonomic arousal so sleep apnea if you read that paper don’t give people dopamine agonist if they have untreated sleep apnea or cord compression it doesn’t matter what you do to turn off the sympathetic nervous system the limbic system if the cord is turning it back on at the brainstem or if you need your brainstem to breathe you just can’t treat heart valves that way you can use a depressant you can use antiepileptic you can use analgesics but you can’t fix the dopamine axis that way so so basically I kind of went over these already you know what are we going to do what needs to be done and and we don’t need to know if normals folder or compress their cord these are just questions for the future so basically to take you back to what I fee I know everybody in my office who has hired for mobility or not already patients lupus patients 5-mile the patients everybody because I’m watching out for their autonomic nervous system I’m watching out for this and I’m trying to fix this but now what we know just to add is cervical cord compression increases autonomic dysregulation the rat model hypermobile patients can bend farther more likely to bump into the cord they already have higher risk for ligamentous injuries of the spine after motor vehicle accident anyway and untreated sleep apnea also increases autonomic dysregulation and dopamine agonists decrease autonomic dysregulation so so far that’s my picture so I want to thank you all for your attention hope it wasn’t too much too fast I think there’s a panel so there’s probably time for questions later thank you very much

21 thoughts on ““Fibromyalgia: A Unifying Theory” Dr. Andrew J. Holman

  1. VERY enlightening! The Benign Hypermobility – (Have FMS) . I have flat feet, knee pain, occas. plantar fasciitis…. but can't touch toes or even kneel with rear to heels… Could this be caused by trigger points (from FMS pain) causing myofascial pain with muscle shortening and stiffness? Also, will treating obstructive sleep apnea with CPAP also treat the alpha intrusion into delta sleep? Where can someone with neck pain get an extension MRI? Thanks again! Wish my docs would see this!

  2. brilliant, why oh why can't the docs see this, seeing this man speak in West Sussex soon, really looking forward to it,

  3. Is there a study about the frequency of Fibromalysia in MS families? Maybe there are two groups of fibro patients. The mainly pain group and the mainly fatigue-migrene-RLS group. But then there are not many studies on fibro all together. Its just so much easier to call it hypochondia and psychologically illnes. After all doctors hate these patiens because they make them feel like they fail, because nobody can help you if you hav fibra. Even as a child I alsways said:  if you are severely ill nobody can help you.

  4. WOW! This is incredible. It is like you read my medical history! ADHD, hypermobility, panic disorder, tachycardia, sleep disruption, restless leg syndrome…… even my flat feet! All the diagnoses you mentioned, I have them all. And it is really freaky that you even knew my personality traits and career choices! This is truly truly outstanding! Now I need to sort this dopamine thing. And a contribution to your research. Thank you so very much. This research WILL save lives.

  5. this lecture is so interesting & informative ! I feel enlightened! I have fibro. and the bates centre is my goto for updates now & forever more ☺ my rheumatologist (@ the U of A) tested my hands for flexibility.. so interesting.. I would luv to get an MRI done on my bent neck..I wish I could be studied.. I just desperately want to be fixed. fibro has ruined me.

  6. Amazing talk. I have fibromyalgia. I am also hypermobile, have restless legs, grind my teeth, I have a long history of SVT, I sleep for 9 hours a night but don't feel rested when I wake up. I am also a qualified teacher and software engineer and I have worked as a professional artist. On top of that I have a cervical neck injury – prolapsed disc.

  7. I think this presentation (or one of his) made me realise that my fibro is caused by sleep issues, and ever since I've been able to regulate some of my symptoms by paying a lot of attention to my sleep, and I've never been in a flare again so bad that I couldn't get out of bed, which used to be something that happened regularly.
    Thank you! This video has helped me more than any doctor's visit in the past 10 years.

  8. I visited institute of TCM in Beijing in china a few years ago, and was explaining my illness fibromyalgia. One of the professor did some routine consultation tests on me.
    His conclusion was, all my medical issues stemmed from my neck.

    I do have neck issues. But am holding surgery at bay, because I've let my docter know, that when i treat myself with reflexology, especially the neck reflexes, my neck issues ease right off.

    From someone who has chronic fibromyalgia, but refuses to give up.
    Very interesting seminar to watch.

  9. I was diagnosed this year with Fibromyalgia, but have been suffering for 3 years. Does anyone else have heart palpitations and high blood pressure issues?

  10. This is incredibly interesting. I believe this 100%! I have fibromyalgia and can’t extend my neck upwards without feeling extreme discomfort in the back of my neck. Having to tilt a glass/bottle of drink for the last bit is difficult as is looking up to do anything. Have unexplained heart palpitations, and low oxygen saturation that doesn’t correlate with my sleep apnea. Heard from Chiros all along about the neck compression and fibromyalgia connection but what about people who can’t afford chiro treatments? Would a simple diy posture correction be of help?

  11. Cerebral spinal fluid leaks and tarlov cyst in the sacrum, That's F.M. in every case ,it has to be that way. Can't feel it, that it's speciality stealth. Won't show on imaging,tarlov will but never does because only 5 doctors know the proper technique for the m.r.i. they don't publicize it. , Tarlov-cyst in the sacrum answer's all questions

  12. That could possibly be true because I worked for 15 years as a manager and I had to wake up every morning at 3am and I developed everything he is talking about. I was a very detail oriented, driven person. I definitely have neck issues. However, any type of massage, physical therapy makes everything become more inflammed but nothing shows up on an MRI. I do wish someone would really find a reason and a cure.
    By the way, I wrote this before I saw the end with the MRI scans of the neck. I guarantee you that my spinal canal decreases when I look up because it is so hard for me to look up, lay in a hairdresser chair, etc. This makes more sense to me than anything I've ever seen about Fibromyalgia

  13. I have fibromyalgia my father has parkinsons disease.
    I have hypermobility, micro vascual angina, disc degenerative in my neck and lower back, my sleep is poor, bruxism, restless leg, pstd

  14. Exciting updates. Between Dr Holman & Dr Wood I have heard a description of my life and symptoms that spans fifty years. I had given up hope that there was anything that could really help. I’m grateful there is excellent research going on and hope new insights will be adopted in treatment settings.

    Wish I could have seen the slideshow.

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