Fibromyalgia: from fiction to fact and to the future - Andrea Nicol

good morning and it's Kansas how do y'all we were having a discussion the other day about how Europeans are people from other countries what make American accents it's neither like surfer dude or cowboy and most people here seem to do cowboy okay I'm not even gonna attempt an Irish accent because I'm just not good at accents so thank you so much for coming today and I'm so just thrilled and honored to be here thanks Vic Rania and Ursula and Brian for just reaching out to me and I remember getting the email and being like you want me to talk I was looking around for like what's that was that you know just sent to me cuz I'm I'm a young female kind of early in my career but I've made it my passion to not only treat fibromyalgia patients in my clinic but also research the condition because I it's about 80% of what I do clinically and it has really inspired me and I'm gonna go ahead and get started the title of my talk is fibromyalgia from fiction to fact into the future so briefly the objectives of the the talk today I don't want to call it a lecture because I feel like lectures are for doctors for boring people talks are for fun people like patients so what is fibromyalgia we're gonna kind of go over I know that Ursula just did a great job outlining fibromyalgia but we're gonna dig a little bit deeper in terms of some of the research that's out there to support the mechanisms we're gonna explore that evolution and of the concept and diagnosis of fibromyalgia look at some of the current medical understanding of how people develop fibromyalgia and discuss old and new treatment therapies I need my pointer alright before I get started and thank you again for that wonderful introduction I'm gonna just tell you a little bit about my journey because I find it best to just talk to you like I'm a person yeah I'm a doctor whatever I'm also just Andrea and I think that it's important you get to know a little bit about me before I share some more medical information so Who am I how did I get here well they they were correct I did get my my degree from the University of Kansas this is this isn't actually a real bird I'm just gonna throw that out there this is called a Jayhawk and that's the mascot of the school that I went to so it's a mythical beast a little mythical bird but we love Jayhawks I mean they're all over my house and and it's super fun but that's where I went for undergraduate studies where I got a BS in human biology and I also did my medical degree at the University of Kansas and as young people do they decide they want to go away from where they grew up you know I'm just gonna rebel and go go away from my parents I also kind of fell in love with a dude who lived in California so that's how I ended up in Los Angeles and there I did my training in anesthesiology and I got a fellowship in pain management there and I also did my research degree as well interestingly though and I don't know how it is here in Ireland but I've had a chance to talk to people it it sounds to me that pain physicians people who are trained in pain medicine are similar to how I was essentially reared in terms of pain medicine techniques do you guys know what this picture is this is a picture of a spine injection this is an epidural injection this is what I was really trained to do so when I you know join my pain fellowship program I've literally thought that for the rest of my career I'd be sticking needles in people's spines to try and make their pain better from like a disc herniation it wasn't really until I started seeing patients on my own as an attending that I started seeing more and more patients with fibromyalgia and when I was trained it was kind of like I'm just gonna say it was like the f-word right pain doctors are frightened of fibromyalgia because it's challenging it's complex and you know what doctors just think when they don't understand something or they don't know how to treat something their ego gets a little bit bruised and they just don't want to take it on because doctors always have to be the smartest person in the room right that's kind of what how we are I'm not but I must be some sort of unicorn I don't know anyways what I'd like to tell patients is I didn't find fibromyalgia I wasn't out looking to treat this condition it found me and I'm so glad it did I do feel that it is my destiny to take care of patients with fibromyalgia and research this condition and learn more about how patients why they're suffering and how to treat it because as we all know at the current state there's no cure for this and right now doctors really in their toolkits don't even have that much to be able to help this condition nor are we guided by any sort of principles on how to treat each person individually how many of you have been to a doctor and they're like well you have fibromyalgia we might as well try this one drug right and then when that doesn't work what do they say we'll try another and we'll try another we'll try another and we'll try another fibromyalgia patients are not there's not there's not like a cookie cutter that makes you guys right you guys all have fibromyalgia for different reasons and so we need to learn through research how to look at a patient understand why that individual has fibromyalgia and then treat them with personalized care so that you don't feel that you're on this never-ending rolling down the hill of a snowball of trying to figure out how to treat yourself the process of trying one drug and trying another and try to try to try aren't you guys it exhausts you right what you're just trying to get relief and after trying drug after drug after drug some people give up hope and I see a lot of patients in my clinic who are literally like I've tried everything and I'm still not better what can you do for me and I hope that I can inspire you today with what we're gonna be talking about how you can advocate for yourselves in your physicians offices with information and so there's good information in this talk I'm also going to provide to our three desire land and fibro Ireland some handouts and journal articles that hopefully can upload to their website for you to get more information I have a really great article that's written by my my mentor my research mentor his name is dr. Daniel claw at the University of Michigan he has a wonderful wonderful article that was published in the best journal in the United States called the Journal of the American Medical Association or JAMA that article I literally print it out bring it to your doctor it outlines everything that they should be looking towards treating you with so all right now we're gonna get into some science is that okay with everybody okay enough about me let's talk about you guys so what is fibromyalgia as Ursula explained so well it's a chronic pain syndrome that is essentially a seen with widespread pain as well as associated symptoms and those associated symptoms are things like mood alterations depression or anxiety as well as sleep describe disruption who here has trouble sleeping I do too but it's because I have like two crazy children and then cognitive difficulties and honestly sleep is one of the most important problems to manage because we all know that with good restorative sleep our brain is helping kind of replenish these neurotransmitters that are known to be helpful in combating pain so sleep helps actually treat pain from a very molecular standpoint but if you're not getting that restorative sleep then it feeds into the pain and it turns into a vicious cycle so I'm really glad to hear that they're doing workshops for you guys today on sleep and sleep hygiene so a little bit more information so who here was diagnosed by a Rheumatologist okay most people so it's considered a rheumatologic condition which is why most rheumatologists are those who that that diagnose it and treat it but as we'll talk in the coming site that's not really a rheumatologic condition it can coexist with it people who have lupus or rheumatoid arthritis or other autoimmune conditions can get fibromyalgia but if you look at the etiology of fibromyalgia it's not a true autoimmune or rheumatologic condition but it's the second most common arthritis is obviously the the number one rheumatologic condition the prevalence is reported at about two to eight percent of the population and patients with fibromyalgia typically have lifelong histories of chronic pain anywhere throughout their body it may start in childhood with migraines or abdominal pain and then progress as you get older to more widespread pain that's very typical for this condition and who here has migratory pain where one week it's in your back the next weeks worsen your neck that's the knee very very common so it's very common for it to migrate and have it not be in one place all of the time so we're gonna move on and talk quickly about risk factors so patients will come to me and I spend a lot of time trying to garner their history of pain and I spend a lot of time asking about the family and the reason is is that there's a lot of patients who maybe have that aunt or that grandma who had really horrible pain but this was like before fibromyalgia was recognized and oh yeah I remember so-and-so like they always had chronic pain it was hard to treat but you know they just had it and that was it so I always ask about family members but one of the main things is if you have a first-degree relative with fibromyalgia you yourself are eight times more likely to develop the condition so there is a strong genetic component to this and they've actually looked at twins you know identical twins they share the same makeup you would think they share the same genetic makeup they both should have the condition will be found that's not the case it's about 50% genetic and 50% environmental risk factors so women are more likely than men to develop this condition if you look around the room mostly ladies and I don't know if the men here actually have fibromyalgia themselves or if they are here to support their partner but I want to say like I'm gonna salute the dudes in the room especially those who came here to support your spouse I think that's just wonderful I it can develop at any age who here had it in childhood or adolescence since who developed it as like a young adult around University age who developed it later on in life around menopause so you can see it can happen at any time I hope you guys are okay with that I like a really interactive talk here I don't want to feel like I'm talking at you and if at any time during the the talk you want me to clarify anything please just shout it out and I will clarify we do know however that's something called secondary fibromyalgia can occur so there are people who have primary fiber bruh fibromyalgia which comes on really without you know having any history of it or having any of the risk factors but secondary fibromyalgia is about ten to thirty percent of people with autoimmune conditions like lupus rheumatoid arthritis those types of syndromes develop fibromyalgia we call it secondary because it's usually related to the underlying rheumatologic condition who here has stress yeah and we in America are like super stressed out but it's mostly because of our president um I had to don't you guys feel like you just don't know with an American like which side they're on just have to you guys know what side I'm on is anyways stressed stress can cause fibromyalgia and it definitely worsens the condition so stress management is a very very important part of taking care of yourself and managing the pain and that can be psychological stress but can also be physical stress as well um severe acute pain episodes so some people get fibromyalgia because they have a really significant physical insult or injury there are people I've seen who were in horriffic car accidents and ended up having like 10 or 11 surgeries to fix the broken bones and all of the other things that have happened as a result of the car accident and people can develop fibromyalgia after that if you think about it broke your whole body had to have all these surgeries that's nothing but tons and tons of pain hitting your brain and spinal cord all day long for however long that initial injury is occurring that in and of itself can cause the brain in the spinal cord to become more sensitive to pain eye lines disease as you mentioned previously has been linked to fibromyalgia I see a lot of our veterans so if you weren't may be aware for like the last 10 years America's been at war we see a lot of these young young men who've been overseas and deployed to Afghanistan and all of the Middle East coming back with similar symptoms so I see a large male fibromyalgia population but their fibromyalgia is coming from essentially trauma PTSD from what they've seen when they've been at war and then something that we kind of explored on the tweet chat the other nan-oh if any of you guys were on the tweet chat but lifetime history of trauma and I get into this with all of my patients I don't need to know specifics but I asked throughout your lifetime have you ever been traumatized we see it more with childhood trauma and it can be physical emotional or sexual abuse neglect just being in a house and not being recognized that's very stressful on a young developing person or even growing up in a chaotic home environment where maybe there's drug or alcohol abuse being given done by the caretakers so we know based on human and even animal research that early life stress or even stress during adulthood can cut our trauma can cause fibromyalgia who here was touched on these points to get their diagnosis a good majority of you guys yeah this is the 1990 American College of Rheumatology criteria for fibromyalgia diagnosis you have to touch on all these points if you get 11 or more than yeah sure you have fibromyalgia back then this was like in the 60s and 70s when they were starting to recognize this they called it fibro Myositis or fibrous itis or even worse psychogenic rheumatism which essentially this was a bunch of white old men doctors saying you ladies are crazy right so not cool back then they really didn't know what was causing this and they did they did their best they thought well we see this a lot in our arthritic patients this must be inflammatory but we know over time that that's actually not the case so since about the late 1980s we know that this is not a condition at least not in those who don't have a coexisting rheumatologic or autoimmune condition that fibromyalgia primary is not associated with widespread inflammation it's chronic widespread pain if you look at these points on the previous slide if I touch those points on me it hurts I mean everybody has pain in these areas these are just more tender spots for everyone but people with fibromyalgia they hurt wherever you touch them it doesn't matter which point you touch any of that it's basically like circle the body touch anywhere on here and I'm gonna hurt but what we know now with good research we're about to get into it is that fibromyalgia is essentially a final common pathway wherein your pain is actually being generated and maintained by your central nervous system and by the central nervous system I need your brain and your spinal cord and it's not just pain we know now that everybody with fibromyalgia has other symptoms it's more than just pain it's sleep disruption it's cognitive difficulties who's heard of fibro fog right I have patients come in and they'll be like I just can't tell you the word I'm looking for the word or I've had patients who are like I got lost in target and I don't know if you know what target it is but targets kind of like a big fun store where you go and you spend too much money went there for milk and you come out with like 200 dollars worth of stuff they do it on purpose what we know now is that fibromyalgia is a fairly well understood condition and process that's independent okay from psychological factors I'm gonna make that very clear you are not making this up and it is not being caused because you have depression or anxiety okay those are downstream effects of the pain so I'm going to use the term centralized pain syndrome I don't even really like the term fibromyalgia just because it insinuates that something's wrong in your muscles and your fibers and we know that's not the case centralized pain syndromes as I discussed earlier are those types of pain syndromes where in your central nervous system is doing one of a couple of things it's either taking input from your peripheral nervous system which is all the nerves outside that go to your arms and your legs and all of your intestines and your your organs it takes that and then the brain amplifies it so that's one way you can have a centralized pain syndrome another one is that your brain and your spinal cord could actually be generating that pain in that part of your body without anything going on out there so we call the kind where it starts out here and your brain amplifies it we call that bottom-up centralization when the brains making the pain down there and nothing's going on in your knee or in your back or your hip that's top-down so there's two different types and research is actually ongoing right now to try and figure out how we as physicians can delineate what type a person has as you can see here I really love this Venn diagram all of these conditions are known to co-exist and have the same type of ideology so if you are a fibromyalgia patient you likely have one of these or more other conditions things like interstitial cystitis which is now being called painful bladder syndrome and Demetrios as' irritable bowel syndrome temporomandibular disorder migraines all of these things are have been shown with good research to be similar in how they are perpetuated and maintained to fibromyalgia alright I kind of stole this from Dan claw again he's like to me he's like the the guru kind of like this said wise sensei of fibromyalgia and this is how I explained it to patients in my clinic how many of you when you saw your doctors felt that they did a good job explaining to you your condition a couple that's good most don't I try and use an analogy of an amplifier and your body being a guitar to explain this to people so amplifiers can be turned up or down or they can kind of just be off and not doing anything but your body I said the pink guitar and I'm being a little sexist tinkas fibromyalgia body okay blue is just a normal healthy person when you plug in the pink guitar to the amplifier and you strum the strings and the strumming of the strings could just be you sitting around it could be you know someone trying to give you a hug it could be stubbing your toe in it or it could be having surgery a fibromyalgia brain or amplifier has that volume knob turned up way high and so letting a lot of sound through someone who has a blue guitar who has a normal brain and central nervous system those people if their strings get strummed or they have some someone hugged them the the amplifiers not going to pick that up so do you does that make sense your volume knob on pain in your brain is just cranked way up so treating it is about turning the knob down it's that easy but not I know I could totally like win the Nobel Prize I'd like a figure that out okay so I like this distribution here the ice I took again I took this slide actually from my mentor we all exist on a bell-shaped curve of how sensitive we are to painful stimulus I personally I'm kind of a wimp like I am very sensitive to pain I've actually done the quantitative sensory testing techniques to see what my pain thresholds are and I'm kind of pain sensitive so I I'm probably like kind of around here meaning that this percent of the population if you look at this this is tenderness the higher it is the more people are like that so people over here on this right side are typically what you would say our fibromyalgia patients so these are people who have a heightened pain response to a painful stimulus or as some of you may experience you actually have pain from non painful stimulus someone's shaking your hand someone giving you a hug or even just kind of grabbing your arm to get your attention that that can hurt that is that is that amplification okay that's that knob being turned way up we know now that it's likely set by genes or genetics as well as being modified and again I can't go into it in too much detail but your body's stress response system is continually activated in patients with fibromyalgia so what we know about patients have you ever heard the term fight-or-flight that sympathetic response it's like on for fibromyalgia patients all of the time it's why sleep is so difficult you can't tap into that thing that's you know brings you to the Zen Zen place right so the higher your volume control setting the more pain you will experience irrespective of what that peripheral input is who here is seen this yep it can be any type of stimulus yep and what we're learning what we're learning from yeah what we're learning from good research right now is that it's a global hypersensitivity so pain is just part of it a lot of good researchers I've been working with are looking at how people with fibromyalgia have ohed like they're very sensitive to smells like for perfumes and things like that they have very much sensitivity to bright lights or flashing lights and and sounds can bother them and I like I'm a noisy American I tend to like talk a little too loud and you know like the annoying person at the airport right people with fibromyalgia tend to I've had to kind of tone down my voice when I see patients with fibromyalgia and talk in a much more gentle soft voice because people with fibromyalgia are definitely more sensitive to that loud boisterous noise so this here is actually how your doctors should be diagnosing fibromyalgia okay this is the 2010 American College of Rheumatology fibromyalgia surveyed criteria and it's essentially a survey that you can take yourself you don't need to be touched to have the diagnosis of fibromyalgia given to you what matters is that you have widespread pain and that you have the Associated symptoms we've talked about so much and I'm gonna this comes in that article from the Journal of American Medical Association you can actually take the survey yourself score it yourself and find out what your number is in order to meet criteria for fibromyalgia you have to have a score of 13 or more you get 12 total points from the top of this you get 19 total points from the widespread pain index it gives you a score range from 0 to 31 and unfortunately it's cutting off but it should say fibromyalgia miss yes it's a real medical term it's actually been published in articles it means how fibromyalgia are you are you a little fibromyalgia a lot fibromyalgia I like to joke it's not really a joke but I like to say everybody has a little bit of fibromyalgia in them and I've taken this survey I take it regularly because I like to see where I fall compared to my patients and if I'm stressed out or if I'm anxious or have going through some you know personal stuff that might not be fun I take this survey and there are times that my score has been as high as 10 because I'm stressed because I'm starting to have symptoms yes I'm going to send it to arthritis Ireland and fibre Island and they're going to be hopefully uploading it on their website you are very welcome so anyways this number gives you a sense of where you fall on this continuum of fibromyalgia but what's important to note is that fibre mal just kind of the tip of the iceberg because as I mentioned people can take the survey and have evidence of centralization of their pain but not meet criteria for fibromyalgia so firstly touch on it a little bit but I spend a lot of time talking to my patients about how their pain from their fibromyalgia affects them you guys all look delightful right you look healthy people look at you and they say you don't hurt and they say well why do you hurt so bad you look fine who cares feels isolated from friends and family or from anybody really because people don't look at them and understand that's hard it's really really hard and I hate hearing those stories about patients who their family members you know say don't come to the party because we don't want people to bring you down you know you to bring people down with Payne I mean that that's just it's really sad and I think as a physician like I said I was trained to just come in and be like yeah you have a disc herniation yeah we can get you an injection and maybe I'll feel better that was how I was trained I've had to learn over time on my own how to assess and treat fibromyalgia through reading and through talking with mentors and experts but I think what me being a fibromyalgia specialist has allowed me to do is become more of a human and have more compassion when I see my patients and it's so important for me to understand on a very human level more than just pain and where does it hurt and trying to figure things out understand how that pain is really really as a human affecting my patients and even sometimes how it affects me when I'm seeing patients I think for you guys and for most fibromyalgia patients it's really hard to find the right provider I've been informed that most people here get treated by rheumatologist is that correct so in the United States rheumatologists won't even see it anymore let our own Rheumatology clinic at my hospital if they get a referral for fibromyalgia they won't schedule it how sad is that I'm the only person in the Greater Kansas City area who will see fibromyalgia patients I'm a pain medicine doctor most pain medicine doctors like I said they want to do the injections they want to just see the patients it's like if I a veritable factory of you know seeing people and making money I would rather personally take my time with patients so I'm very lucky that my institution has supported me in my mission to make sure that fibromyalgia patients get seen and get heard and by being heard it means you get time and how many of you feel like your doctors don't have time for you and I think that's just kind of an overarching problem right doctors have a lot of pressure to see more patients and do more but I think it's an honest - service to patients and again as I said before many practitioners are challenged because they don't understand it and they don't know how to treat it and it's very challenging and difficult and a lot of them aren't up to date on the current research and this is just a little summary box of kind of what we already talked about but I think in the interest of time I'm gonna keep going so pathophysiology is a fancy medical word for what's actually seen that's causing the pain okay so what we know about patients with fibromyalgia using quantitative sensory testing techniques so these are like little machines that can actually elicit pain from the patient it allows us to measure a threshold for how sensitive you are so it's not fun to do but we have learned from good research that patients with fibromyalgia have lowered pain thresholds on sensory testing compared to healthy controls and then as I'm going to show you in a little bit there's actually a lot of research going on where they use imaging techniques using MRI scans to basically elicit pain and a fibromyalgia patient inside of an MRI scanner and watch how the brain gets activated so we'll talk a little bit about that later a lot of the abnormalities that we see not only the pain but the depression the trouble sleeping come from altered neurotransmitters such as norepinephrine and serotonin in your brain and that is why that you're having problems with those things is because typically there's a lack of those neurotransmitters who's been told this right my patients tell me that all the time and it actually is it's in your brain okay this was the seminal paper that proved that fibromyalgia brains process pain differently than people who do not have fibromyalgia this legitimizes your condition no one can look at you and say that you don't have fibromyalgia if they take an MRI of your brain and press on your thumbnail while you're in the scanner and make you hurt your brain regions that are propane will light up like a Christmas tree compared to someone who doesn't have fibromyalgia also your brain the the processing of it will reduce the amount of neural transmission to the anti-pain regions so your brains just like I said that volume knobs cranked up it's doing everything it can to promote pain and that's why the treatment of fibromyalgia is to help turn down that hypersensitivity or that volume knob this was just a more recent study and really to use just kind of like a pretty picture but this is a brain and what they did is they looked at that same scale that fibromyalgia in this scale that gives you the score from 0 to 31 and they found that the more severe your score meaning them your fibromyalgia ms is high that you actually had more activation of your brain so there's actually correlates with how severe your pain is - how much your brain is being activated in those pro-pain regions so just to summarize the brain findings a little bit what we see is that brains of patients with fibromyalgia amplify pain signals by sending more blood flow and more neural activity to the parts of the brain that increase pain and less blood flow and less neural processing to the areas of the brain that actually fight pain or anti pain alright who wants to take a little quiz did you guys think you were going to come here and take a test I'm gonna give me one all right these are knees these are x-rays of knees this is a normal x-ray of a knee and this is bone on bone severe osteoarthritis of the knee which of these two people do you think has pain if you think it's the left side raise your hand if you think it's the right side raise your hand it's a trick question y'all it's both okay we actually know that about 40% of people with this x-ray will have no pain and this is what we're taught in medicine is if you see something on x-ray well it must be causing the pain but we know from epidemiologic studies that about 40% of people with severe osteoarthritis may not feel pain in that joint but you can be sure as heck that a fibromyalgia patient might have a normal x-ray of the knee but boy is their knee hurting so that's this is a trick question and this is why x-rays can't guide us a lot of the times when it comes to treatment for fibromyalgia because you can have a perfectly normal knee on x-ray but your fibromyalgia is making your knee hurt okay so what what is why is all is so important why am I telling you about this fibromyalgia in a scale and centralized pain and it's because it influences treatment that's why imagine you you have this at this x-ray of your knee and you go see you know your GP sends you to an orthopedic surgeon and think maybe you need a knee replacement right and the surgeon comes in and he's like yeah your knee hurts I can fix it with surgery however I see this all the time what if this was the patient what if this was the patient what if that orthopedic surgeon took the time to find out more about the patient and say well your knee hurts but so does everything else I mean there's I wish I could leave this up here for a long time because it's actually really funny like some of the things like orgasmic headaches and it's it's actually really afraid this is actually a real patient from one of my colleagues at the University of Michigan but this highlights that doctors are very siloed in our treatment right so if you see a surgeon for a knee that has arthritis he's gonna be like you have arthritis I will fix it without taking the rest of you into consideration so differentiating pain that is more centralized just like the person I just showed you that intake form could provide some important information on how that person should be treated and there is actually some really good research coming out of the University of Michigan where they're looking at people who have that x-ray and go see a surgeon and get told they need a knee replacement so they took these people and they enrolled them into a study and they did extensive questionnaires to try and get a picture of all the global things about fibromyalgia so they get the fibromyalgia skirt surveys they find out their fibromyalgia nests depression surveys functioning surveys catastrophizing surveys all of the things that come in that picture of the fibromyalgia phenotype they do the quantitative sensory testing and they do the functional neuroimaging and in this study they had two particular outcomes of interest so they looked at the people before surgery determined their fibromyalgia nests and then followed them after surgery for six months and they were looking at how much pain medication because in the United States I don't know if you know but we have a major major opioid crisis going on 115 people in America die each day from an opioid overdose it is astounding it's it's sad there are some morgues like in Ohio a morgue as you use that word here okay in Ohio in West Virginia where it's so many people were dying everyday that they didn't have room to put the bodies it's that bad so opioids are a big big thing that we're studying now because we're trying to make sure that we treat people the right way I don't think in any other country wheat they use opioids the way we do in America so they looked at post-operative opioid consumption so this is actually a the distribution of the patients in the study and their fibromyalgia survey scores so zero means they have no fibromyalgia nests 31 obviously means that they have a lot of fibromyalgia nests and as you can see this population this red line here is the cut point for a diagnosis of fibromyalgia so everybody to the right of their line does not or does meet criteria for fibromyalgia and everybody to the left does not so most of this population did not meet criteria for fibromyalgia but they were kind of distributed in this what you would call sub fibromyalgia range what they found doing some statistical analyses that for every one point increase in that fibromyalgia nough score they would use 9 milligrams more of morphine during their hospitalization and that they would have a 20 to 25 greater likelihood of not getting any significant pain relief from that knee surgery which is astounding because you would think this person has me on you know bone-on-bone knee osteoarthritis you remove the joint you put in a new one they should be fixed right what this is telling us is that the amount of centralized pain or fibromyalgia fibromyalgia is that someone has doesn't even mean that they meet criteria for fibromyalgia that they are less likely to respond to these surgical interventions to treat things out in the periphery and they found that it was actually independent of classical psychological factors again heralding that thing that this is about this is a brain pain disorder this is it not all influenced by depression or anxiety again signalling that this is in your head it's just in your brain okay you're not making this up so we're gonna move on to treatment integrated approach I know that Ursula kind of touched on this that it's not just about the pills it's not just about the physiotherapy it's not just about complementary you have to do them together you need a comprehensive and multidisciplinary approach to treating this and that's why I say pharmacologic I use the medications in my practice all the time but I typically am doing it alongside a whole host of other things such as physical therapy exercise meditation pain psychology and I find that it takes a little bit of cheerleading on my part because by the time the patients come to me they're downtrodden they seem like eight different doctors who don't know what they're doing and they're literally like I've had patients come in the room and just kind of look at me like this like what's this lady gonna do for me that's different than everybody else well you just happen to walk into like doctormick personalities you know I I'm a cheerleader for people because a lot of people are so downtrodden and they've lost their support networks that they don't feel motivated to even try and get better anymore because they've had so many tries of trying to get better and then the doctor just shoves them aside when they can't get better that sometimes all you need is like a hug from a lady from Kansas to feel better right I mean I think hugs give you a little boosts of that that Boxey Tosun hormone like you know when you're breastfeeding your baby or you're like you know having a really it's just that human touch is so important but I find that those patients who are enthusiastic and motivated and inspired to get better are the ones that do but the most important piece of information is that the change can't happen overnight and I tell my patients this is not a sprint or yeah it's not a sprint okay it's a marathon and there are times that I've had to work with people for up to over like a year slowly baby steps pacing yourself you know I have a lot of patients who want to get back to like running a 5k or doing whatever because they used to not recognizing that tomorrow I'm gonna ask you to walk from here to there and we're gonna start with that the next day I want you to walk a little bit further and a little bit further and it's gonna hurt at first but I call it the good hurt when you have not been exercising you've been sedentary for so long your body's muscles do something called atrophy they get smaller so you do have to work on kind of slow baby steps towards getting better so you can condition your body again and once you do you will find that you can do more and more so I like this chart because a lot of patients with fibromyalgia especially those who are aging can have more than just centralized pain going on you know we do get those knees that look like that and it could be causing the pain in fibromyalgia patients so this chart is really nice because it puts pain into three different buckets nociceptive pain neuropathic pain and centralized pain so knows the septic tank comes from inflammation or damage neuropathic pain comes from nerve damage or entrapment and then centralized pain as we've talked about already I'm not going to go over it again but you can see that the treatment options for each different type of pain are very very different and you can have one of them you can have two of them you could have all of them so it's very important as a patient that your doctor tries to delineate which bucket or buckets you live in and treat them accordingly otherwise your doctor is doing your you a grave disservice in my opinion so it's a rather busy slide I'm gonna try and go through these are all the different neurotransmitters that can influence pain so on the left side here you can see that these are things that generally facilitate pain transmission glutamate is an excitatory neurotransmitter so it's substance P and nerve growth factor and serotonin what we know about patients with fibromyalgia doing studies is that all of those are increased so essentially if you have an increased level of these neurotransmitters you're going to facilitate or make more pain on the right side is things that generally inhibit pain transmission and this is related to what you're called you're descending anti nociceptive pathways so your brain has the ability to amplify pain but it also has the ability to dampen it or make it less so in patients with fibromyalgia things like norepinephrine even endogenous opioids which are things we call like endorphins are less in patients with fibromyalgia although there's some new emerging research that patients with fibromyalgia actually they think maybe have an excess of endorphins and that sounds strange right because the north UNS make you feel good but we're thinking too much of a good thing is actually a bad thing and we'll talk about it in just a second so doctors can choose treatments that target all of these different alterations and I'm just gonna point out one of them here is called low dose naltrexone and I know I think I know that least one person in the room who's taking it has anybody else taken this medication this is a really new and emerging therapy based on that kind of idea that there's too much opioid in the body that the body is making too much of its own opioids because what now trek zone does is it actually blocks opioids and again just kind of a summary slide here strong evidence means that there's a lot of literature and good research to support it and it's generally favorable and positive so these are things that are like antidepressants try cyclic antidepressants amitriptyline has anybody in here been amitriptyline causes all sorts of side effects huh yeah it's pretty gnarly there are newer versions of amitriptyline that may be available such as nortriptyline or does for me that your doctors could look into selectively nor NERP and nephron reacting inhibitors can be used things like duloxetine or cymbalta is that available here in this country do you guys have Sibella or min mil nasa cran so it's like the newer like sister drug of symbol totes available in the united states but it's very very costly and then venlafaxine which is affects her gabapentin oi pre Gavilan also known as lyrica which for some people can be helpful but some people not and then gabapentin which is kind of like its older brother drug it's been around for a really long time and these are typically anti-seizure medications but they worked on reducing that hypersensitivity because they're what we call a membrane stabilizer so they're trying to stabilize the act the overactive firing of the nerves in your body modest evidence for tramadol and low dose naltrexone cannabinoids is that available here cannabinoids now we wacky people in the united states are starting to legalize it everywhere strangely enough it's reducing opioid use but it's increasingly car accidents and other stuff silly Americans okay we got weak evidence for these right here and then there's no evidence for at least four standalone fibromyalgia for things like opioids are taking chronic steroids so we've kind of discussed about that low dose naltrexone and why that has been thought to be helpful for fibromyalgia and they've actually been doing some studies looking at MRIs of the brain and what they found is that patients with fibromyalgia have less receptors to take in the opioid and bind it and cause pain relief so this may be why I don't know if any of you've ever had a surgery where they did give you some pain medications that are opioids they work less effectively in fibromyalgia patients because you just have less of the dange receptor for the drug to go into that's why the low dose naltrexone is hoping because it's helping actually block your endogenous opioids and help you more receptors so if you have more receptors you could fight more pain so it's pretty cool emerging research these are just some great non pharmacologic therapies I don't know why it got cut off here but education physical therapy exercise cognitive behavioral therapy which is something that like a clinical psychologist or a social work counselor could do all of these have very strong evidence for supporting and helping treat fibromyalgia and at least in the States and I'm guessing here to access and compliance with these things especially the access piece is so difficult I see a lot of patients who are on either federal or state kind of government-funded insurance and a lot of times I have trouble getting this stuff for my patients and it's so sad because they're the ones that need it the most this is actually something you can access yourself and it is free and it was developed by the University of Michigan again I keep repeating University of Michigan but they're like the world experts in fibromyalgia research and I'm lucky enough to get to work with them it's cut off here but it's fibro Guide Med you Mitch DD you and it's essentially a online cognitive behavioral therapy modules so if you yourself can't get to a pain psychologist or a psychologist who can do cognitive behavioral therapy you can go online and access it and they actually did some studies looking at patients who did this versus just conventional management and they found that the patients who use this had 29% reduction versus 8% reduction and their pain scores compared to just usual care so it does seem to be helpful these are some complementary and alternative medicine techniques which I think you guys are gonna learn a bit a little bit about like Tai Chi a little bit later Qi Gong meditation is kind of like a Eastern medicine practice of meditative practice we have a couple studies at my university ongoing looking at that then this is more of just a summary slide I did this to doctors all the time about how they should focus treatment so pharmacologic therapy is should be aimed at the symptoms and then non pharmacologic therapy is to address the dysfunction and when you do all of these together when you have that integrated multiple multidisciplinary care you'll get better because your symptoms are being managed as is your dysfunction if you only focus on drugs you're not gonna address the other things that are causing you difficulties on a daily basis so it really has to be integrated and complementary and then again this is another summary slide with those buckets of nociceptive neuropathic and centralized pain and what drugs have been shown to be beneficial for them and I think in terms of like closings kind of comments here about what I see as being kind of the wave of the future in my specialty is something called personalized analgesia and we think that by taking patients and giving them extensive questionnaires maybe even looking at their genetics in the future this is that thumb squisher I told you about it kind of looks like a gun or I'm not sure but like a joystick but we put people's thumbs in there and it squeezes on them that gives us pain threshold readings but we think that by taking this information about patients that we may be an even the fMRI it's very expensive but we think one day it might be used in clinical the clinical realm that we can then tailor specific therapies for patients based on how they look on all these different measures because right now I stand before you and tell you I'm one of those doctors who still has to say well I guess we'll try this first and I hope that one day I can stand up here and tell you that I have a better way to approach treating patients pain all I know is I give it an integrated approach and that's all I've got right now I think in terms of avenues for further research this concept of traumatic events I think is really important and I'm not gonna make anybody raise their hands in this room to say whether or not they've had a traumatic event but you can think to yourself if you've had and think gee when that had happened if someone had intervened could I have prevented this there's actually good research coming out of Children's Mercy Hospital in Kansas City where they have an amplified pain clinic for children and adolescents and they're actually finding that intense physiotherapy and psychological like cognitive behavioral therapy music therapy yoga acupuncture all of those modalities when they intervene in a young person it gets better so there must be something about when the brain switches from adolescence to adulthood that that ability to really get in there and fix it is gone and so I think that's a huge Avenue for research that is hopefully gonna be you know hashed out in the near future obviously looking at personalized treatment plans and understanding how mono therapy or combination therapy could be better than one or the other and then obviously that impact the societal impact of multidisciplinary care I just like to leave you with some hope I I could come here to Ireland I wish I could treat all of the fibromyalgia patients in the world I'd love to give all of you a hug and just tell you that I'm here and I listen and I care and hopefully you will find a physician here in Ireland that will appropriately diagnose provide referrals and treatment options for you I think the number one thing is maintaining that positive attitude and and remembering dr. niccole's my tier leader even if she lives in Kansas she's my cheerleader find support I think it's so wonderful what Fiber Island and I arthritis Ireland has going here we do not have anything like this in the States the fact that you have this support network and education and outreach with advocacy is honestly inspiring like I might even get a little emotional when I leave here today because this is just really great so keep motivated to reduce your disability and improve your functioning and then I'm going to butcher this I'd like to give a big shout out to Brian Lynch for giving me like the Kansas like pronunciation guide so vishay more people aid bogus inori dumb flower dip Karev my guts you

Channel: Arthritis Ireland

Views: 561,193

Keywords: fibromyalgia, chronic pain, arthritis, health summit, Arthritis Ireland, FibroIreland, Andrea Nicols, University of Kansas

Id: et2yca1g0sM

Length: 55min 18sec (3318 seconds)

Published: Tue Jun 19 2018