00:00good morning and it's Kansas how do
00:07y'all we were having a discussion the
00:11other day about how Europeans are people
00:14from other countries what make American
00:15accents it's neither like surfer dude or
00:18cowboy and most people here seem to do
00:21cowboy okay I'm not even gonna attempt
00:24an Irish accent because I'm just not
00:26good at accents so thank you so much for
00:30coming today and I'm so just thrilled
00:32and honored to be here thanks Vic Rania
00:35and Ursula and Brian for just reaching
00:38out to me and I remember getting the
00:40email and being like you want me to talk
00:43I was looking around for like what's
00:46that was that you know just sent to me
00:47cuz I'm I'm a young female kind of early
00:50in my career but I've made it my passion
00:52to not only treat fibromyalgia patients
00:55in my clinic but also research the
00:57condition because I it's about 80% of
01:03what I do clinically and it has really
01:05inspired me and I'm gonna go ahead and
01:10the title of my talk is fibromyalgia
01:12from fiction to fact into the future so
01:16briefly the objectives of the the talk
01:19today I don't want to call it a lecture
01:21because I feel like lectures are for
01:22doctors for boring people talks are for
01:24fun people like patients so what is
01:27fibromyalgia we're gonna kind of go over
01:29I know that Ursula just did a great job
01:31outlining fibromyalgia but we're gonna
01:33dig a little bit deeper in terms of some
01:34of the research that's out there to
01:36support the mechanisms we're gonna
01:38explore that evolution and of the
01:40concept and diagnosis of fibromyalgia
01:42look at some of the current medical
01:44understanding of how people develop
01:45fibromyalgia and discuss old and new
01:49treatment therapies I need my pointer
01:50alright before I get started and thank
01:54you again for that wonderful
01:55introduction I'm gonna just tell you a
01:56little bit about my journey because I
01:59find it best to just talk to you like
02:01I'm a person yeah I'm a doctor
02:03whatever I'm also just Andrea and I
02:07think that it's important you get to
02:09know a little bit about me before I
02:10share some more medical
02:12information so Who am I how did I get
02:15here well they they were correct I did
02:17get my my degree from the University of
02:19Kansas this is this isn't actually a
02:22real bird I'm just gonna throw that out
02:24there this is called a Jayhawk and
02:27that's the mascot of the school that I
02:30went to so it's a mythical beast a
02:32little mythical bird but we love
02:34Jayhawks I mean they're all over my
02:35house and and it's super fun but that's
02:37where I went for undergraduate studies
02:39where I got a BS in human biology and I
02:42also did my medical degree at the
02:43University of Kansas and as young people
02:46do they decide they want to go away from
02:49where they grew up you know I'm just
02:51gonna rebel and go go away from my
02:53parents I also kind of fell in love with
02:55a dude who lived in California so that's
02:58how I ended up in Los Angeles and there
03:00I did my training in anesthesiology and
03:02I got a fellowship in pain management
03:04there and I also did my research degree
03:07as well interestingly though and I don't
03:10know how it is here in Ireland but I've
03:11had a chance to talk to people it it
03:13sounds to me that pain physicians people
03:16who are trained in pain medicine are
03:19similar to how I was essentially reared
03:22in terms of pain medicine techniques do
03:25you guys know what this picture is this
03:26is a picture of a spine injection this
03:29is an epidural injection this is what I
03:32was really trained to do so when I you
03:36know join my pain fellowship program
03:38I've literally thought that for the rest
03:40of my career I'd be sticking needles in
03:43people's spines to try and make their
03:45pain better from like a disc herniation
03:47it wasn't really until I started seeing
03:51patients on my own as an attending that
03:53I started seeing more and more patients
03:55with fibromyalgia and when I was trained
03:59it was kind of like I'm just gonna say
04:02it was like the f-word
04:04right pain doctors are frightened of
04:08fibromyalgia because it's challenging
04:11it's complex and you know what doctors
04:14just think when they don't understand
04:16something or they don't know how to
04:17treat something their ego gets a little
04:19bit bruised and they just don't want to
04:21take it on because doctors always have
04:23to be the smartest person in the room
04:24right that's kind of what how we are I'm
04:27not but I must be some sort of unicorn I
04:30don't know anyways what I'd like to tell
04:34patients is I didn't find fibromyalgia I
04:38wasn't out looking to treat this
04:40condition it found me and I'm so glad it
04:44did I do feel that it is my destiny to
04:47take care of patients with fibromyalgia
04:49and research this condition and learn
04:51more about how patients why they're
04:54suffering and how to treat it because as
04:57we all know at the current state there's
04:59no cure for this and right now doctors
05:02really in their toolkits don't even have
05:04that much to be able to help this
05:07condition nor are we guided by any sort
05:09of principles on how to treat each
05:12person individually how many of you have
05:15been to a doctor and they're like well
05:16you have fibromyalgia we might as well
05:18try this one drug right and then when
05:21that doesn't work what do they say we'll
05:22try another and we'll try another we'll
05:25try another and we'll try another
05:26fibromyalgia patients are not there's
05:29not there's not like a cookie cutter
05:31that makes you guys right you guys all
05:33have fibromyalgia for different reasons
05:35and so we need to learn through research
05:38how to look at a patient understand why
05:41that individual has fibromyalgia and
05:44then treat them with personalized care
05:47so that you don't feel that you're on
05:50this never-ending rolling down the hill
05:52of a snowball of trying to figure out
05:54how to treat yourself the process of
05:58trying one drug and trying another and
06:00try to try to try aren't you guys it
06:04exhausts you right what you're just
06:06trying to get relief and after trying
06:08drug after drug after drug some people
06:12give up hope and I see a lot of patients
06:13in my clinic who are literally like I've
06:15tried everything and I'm still not
06:17better what can you do for me
06:19and I hope that I can inspire you today
06:21with what we're gonna be talking about
06:22how you can advocate for yourselves in
06:26your physicians offices with information
06:29and so there's good information in this
06:30talk I'm also going to provide to our
06:32three desire land and fibro Ireland some
06:35handouts and journal articles that
06:37can upload to their website for you to
06:39get more information I have a really
06:41great article that's written by my my
06:43mentor my research mentor his name is
06:45dr. Daniel claw at the University of
06:48Michigan he has a wonderful wonderful
06:50article that was published in the best
06:52journal in the United States called the
06:54Journal of the American Medical
06:55Association or JAMA that article I
06:59literally print it out bring it to your
07:02doctor it outlines everything that they
07:05should be looking towards treating you
07:06with so all right now we're gonna get
07:09into some science is that okay with
07:11everybody okay enough about me let's
07:14talk about you guys so what is
07:16fibromyalgia as Ursula explained so well
07:19it's a chronic pain syndrome that is
07:21essentially a seen with widespread pain
07:25as well as associated symptoms and those
07:27associated symptoms are things like mood
07:29alterations depression or anxiety as
07:31well as sleep describe disruption who
07:34here has trouble sleeping I do too but
07:38it's because I have like two crazy
07:39children and then cognitive difficulties
07:43and honestly sleep is one of the most
07:45important problems to manage because we
07:48all know that with good restorative
07:50sleep our brain is helping kind of
07:52replenish these neurotransmitters that
07:54are known to be helpful in combating
07:57pain so sleep helps actually treat pain
08:01from a very molecular standpoint but if
08:03you're not getting that restorative
08:05sleep then it feeds into the pain and it
08:07turns into a vicious cycle so I'm really
08:09glad to hear that they're doing
08:10workshops for you guys today on sleep
08:12and sleep hygiene so a little bit more
08:18information so who here was diagnosed by
08:21a Rheumatologist okay most people so
08:25it's considered a rheumatologic
08:27condition which is why most
08:29rheumatologists are those who that that
08:32diagnose it and treat it but as we'll
08:35talk in the coming site that's not
08:36really a rheumatologic condition it can
08:38coexist with it people who have lupus or
08:41rheumatoid arthritis or other autoimmune
08:43conditions can get fibromyalgia but if
08:46you look at the etiology of fibromyalgia
08:50autoimmune or rheumatologic condition
08:53but it's the second most common
08:55arthritis is obviously the the number
08:58one rheumatologic condition the
09:00prevalence is reported at about two to
09:02eight percent of the population and
09:04patients with fibromyalgia typically
09:06have lifelong histories of chronic pain
09:09anywhere throughout their body it may
09:12start in childhood with migraines or
09:14abdominal pain and then progress as you
09:17get older to more widespread pain that's
09:19very typical for this condition and who
09:23here has migratory pain where one week
09:25it's in your back the next weeks worsen
09:27your neck that's the knee very very
09:30common so it's very common for it to
09:34migrate and have it not be in one place
09:37all of the time so we're gonna move on
09:40and talk quickly about risk factors so
09:42patients will come to me and I spend a
09:44lot of time trying to garner their
09:47history of pain and I spend a lot of
09:49time asking about the family and the
09:51reason is is that there's a lot of
09:53patients who maybe have that aunt or
09:56that grandma who had really horrible
09:58pain but this was like before
10:00fibromyalgia was recognized and oh yeah
10:03I remember so-and-so like they always
10:05had chronic pain it was hard to treat
10:06but you know they just had it and that
10:09so I always ask about family members but
10:12one of the main things is if you have a
10:13first-degree relative with fibromyalgia
10:16you yourself are eight times more likely
10:18to develop the condition so there is a
10:21strong genetic component to this and
10:23they've actually looked at twins you
10:25know identical twins they share the same
10:26makeup you would think they share the
10:28same genetic makeup they both should
10:31have the condition will be found that's
10:33not the case it's about 50% genetic and
10:3550% environmental risk factors so women
10:40are more likely than men to develop this
10:43condition if you look around the room
10:45mostly ladies and I don't know if the
10:47men here actually have fibromyalgia
10:49themselves or if they are here to
10:50support their partner but I want to say
10:52like I'm gonna salute the dudes in the
10:54room especially those who came here to
10:57support your spouse I think that's just
10:59I it can develop at any age who here had
11:03it in childhood or adolescence
11:04since who developed it as like a young
11:07adult around University age who
11:10developed it later on in life around
11:12menopause so you can see it can happen
11:16at any time I hope you guys are okay
11:19with that I like a really interactive
11:20talk here I don't want to feel like I'm
11:22talking at you and if at any time during
11:23the the talk you want me to clarify
11:26anything please just shout it out and I
11:27will clarify we do know however that's
11:31something called secondary fibromyalgia
11:33can occur so there are people who have
11:34primary fiber bruh fibromyalgia which
11:37comes on really without you know having
11:40any history of it or having any of the
11:42risk factors but secondary fibromyalgia
11:44is about ten to thirty percent of people
11:46with autoimmune conditions like lupus
11:49rheumatoid arthritis those types of
11:52syndromes develop fibromyalgia we call
11:54it secondary because it's usually
11:56related to the underlying rheumatologic
11:59condition who here has stress yeah
12:06and we in America are like super
12:09stressed out but it's mostly because of
12:11our president um I had to don't you guys
12:18feel like you just don't know with an
12:21American like which side they're on just
12:26have to you guys know what side I'm on
12:28is anyways stressed stress can cause
12:33fibromyalgia and it definitely worsens
12:35the condition so stress management is a
12:38very very important part of taking care
12:40of yourself and managing the pain and
12:42that can be psychological stress but can
12:44also be physical stress as well um
12:47severe acute pain episodes so some
12:49people get fibromyalgia because they
12:51have a really significant physical
12:53insult or injury there are people I've
12:56seen who were in horriffic car accidents
12:58and ended up having like 10 or 11
13:00surgeries to fix the broken bones and
13:03all of the other things that have
13:04happened as a result of the car accident
13:06and people can develop fibromyalgia
13:08after that if you think about it broke
13:09your whole body had to have all these
13:11surgeries that's nothing but tons and
13:14tons of pain hitting your brain and
13:16spinal cord all day long for however
13:18long that initial injury is occurring
13:20that in and of itself can cause the
13:23brain in the spinal cord to become more
13:25sensitive to pain eye lines disease as
13:28you mentioned previously has been linked
13:30to fibromyalgia I see a lot of our
13:34veterans so if you weren't may be aware
13:37for like the last 10 years America's
13:38been at war we see a lot of these young
13:42young men who've been overseas and
13:45deployed to Afghanistan and all of the
13:47Middle East coming back with similar
13:50symptoms so I see a large male
13:52fibromyalgia population but their
13:55fibromyalgia is coming from essentially
13:57trauma PTSD from what they've seen when
14:00they've been at war and then something
14:03that we kind of explored on the tweet
14:04chat the other nan-oh if any of you guys
14:06were on the tweet chat but lifetime
14:09history of trauma and I get into this
14:11with all of my patients I don't need to
14:13know specifics but I asked throughout
14:15your lifetime have you ever been
14:19we see it more with childhood trauma and
14:23it can be physical emotional or sexual
14:25abuse neglect just being in a house and
14:28not being recognized that's very
14:31stressful on a young developing person
14:33or even growing up in a chaotic home
14:35environment where maybe there's drug or
14:37alcohol abuse being given done by the
14:40caretakers so we know based on human and
14:44even animal research that early life
14:47stress or even stress during adulthood
14:49can cut our trauma can cause
14:51fibromyalgia who here was touched on
14:56these points to get their diagnosis a
14:59good majority of you guys yeah this is
15:02the 1990 American College of
15:05Rheumatology criteria for fibromyalgia
15:07diagnosis you have to touch on all these
15:10points if you get 11 or more than yeah
15:14sure you have fibromyalgia back then
15:18this was like in the 60s and 70s when
15:20they were starting to recognize this
15:22they called it fibro Myositis or fibrous
15:24itis or even worse psychogenic
15:27rheumatism which essentially this was a
15:30bunch of white old men doctors saying
15:32you ladies are crazy right so not cool
15:39back then they really didn't know what
15:41was causing this and they did they did
15:43their best they thought well we see this
15:44a lot in our arthritic patients this
15:46must be inflammatory but we know over
15:49time that that's actually not the case
15:53so since about the late 1980s we know
15:57that this is not a condition at least
15:59not in those who don't have a coexisting
16:02rheumatologic or autoimmune condition
16:03that fibromyalgia primary is not
16:06associated with widespread inflammation
16:08it's chronic widespread pain if you look
16:11at these points on the previous slide if
16:14I touch those points on me it hurts I
16:17mean everybody has pain in these areas
16:19these are just more tender spots for
16:21everyone but people with fibromyalgia
16:23they hurt wherever you touch them it
16:26doesn't matter which point you touch any
16:28of that it's basically like circle the
16:32touch anywhere on here and I'm gonna
16:34hurt but what we know now with good
16:36research we're about to get into it is
16:38that fibromyalgia is essentially a final
16:41common pathway wherein your pain is
16:44actually being generated and maintained
16:47by your central nervous system and by
16:49the central nervous system I need your
16:50brain and your spinal cord and it's not
16:53just pain we know now that everybody
16:56with fibromyalgia has other symptoms
16:58it's more than just pain it's sleep
17:00disruption it's cognitive difficulties
17:02who's heard of fibro fog right I have
17:05patients come in and they'll be like I
17:07just can't tell you the word I'm looking
17:09for the word or I've had patients who
17:11are like I got lost in target and I
17:13don't know if you know what target it is
17:14but targets kind of like a big fun store
17:16where you go and you spend too much
17:17money went there for milk and you come
17:19out with like 200 dollars worth of stuff
17:21they do it on purpose what we know now
17:25is that fibromyalgia is a fairly well
17:28understood condition and process that's
17:30independent okay from psychological
17:32factors I'm gonna make that very clear
17:34you are not making this up and it is not
17:37being caused because you have depression
17:39or anxiety okay those are downstream
17:43effects of the pain so I'm going to use
17:48the term centralized pain syndrome I
17:50don't even really like the term
17:51fibromyalgia just because it insinuates
17:54that something's wrong in your muscles
17:56and your fibers and we know that's not
17:58centralized pain syndromes as I
18:01discussed earlier are those types of
18:03pain syndromes where in your central
18:05nervous system is doing one of a couple
18:08it's either taking input from your
18:10peripheral nervous system which is all
18:12the nerves outside that go to your arms
18:14and your legs and all of your intestines
18:16and your your organs it takes that and
18:19then the brain amplifies it so that's
18:21one way you can have a centralized pain
18:23syndrome another one is that your brain
18:26and your spinal cord could actually be
18:27generating that pain in that part of
18:31your body without anything going on out
18:33there so we call the kind where it
18:36starts out here and your brain amplifies
18:38it we call that bottom-up centralization
18:41when the brains making the pain down
18:43there and nothing's going on in your
18:45or in your back or your hip that's
18:48top-down so there's two different types
18:50and research is actually ongoing right
18:52now to try and figure out how we as
18:53physicians can delineate what type a
18:56person has as you can see here I really
18:59love this Venn diagram all of these
19:01conditions are known to co-exist and
19:04have the same type of ideology so if you
19:07are a fibromyalgia patient you likely
19:09have one of these or more other
19:12conditions things like interstitial
19:14cystitis which is now being called
19:16painful bladder syndrome and Demetrios
19:19as' irritable bowel syndrome
19:20temporomandibular disorder migraines all
19:23of these things are have been shown with
19:25good research to be similar in how they
19:29are perpetuated and maintained to
19:31fibromyalgia alright I kind of stole
19:36this from Dan claw again he's like to me
19:39he's like the the guru kind of like this
19:41said wise sensei of fibromyalgia and
19:45this is how I explained it to patients
19:47in my clinic how many of you when you
19:49saw your doctors felt that they did a
19:51good job explaining to you your
19:53condition a couple that's good most
19:58don't I try and use an analogy of an
20:03amplifier and your body being a guitar
20:08to explain this to people so amplifiers
20:12can be turned up or down or they can
20:14kind of just be off and not doing
20:15anything but your body I said the pink
20:19guitar and I'm being a little sexist
20:21tinkas fibromyalgia body okay
20:23blue is just a normal healthy person
20:27when you plug in the pink guitar to the
20:30amplifier and you strum the strings and
20:32the strumming of the strings could just
20:34be you sitting around it could be you
20:37know someone trying to give you a hug it
20:39could be stubbing your toe in it or it
20:41could be having surgery a fibromyalgia
20:44brain or amplifier has that volume knob
20:48turned up way high and so letting a lot
20:51of sound through someone who has a blue
20:55guitar who has a normal brain and
20:57central nervous system those
20:59people if their strings get strummed or
21:01they have some someone hugged them the
21:04the amplifiers not going to pick that up
21:07so do you does that make sense your
21:11volume knob on pain in your brain is
21:14just cranked way up so treating it is
21:17about turning the knob down it's that
21:19easy but not I know I could totally like
21:24win the Nobel Prize I'd like a figure
21:27so I like this distribution here the ice
21:30I took again I took this slide actually
21:32from my mentor we all exist on a
21:36bell-shaped curve of how sensitive we
21:38are to painful stimulus I personally I'm
21:41kind of a wimp like I am very sensitive
21:44to pain I've actually done the
21:46quantitative sensory testing techniques
21:48to see what my pain thresholds are and
21:51I'm kind of pain sensitive so I I'm
21:55probably like kind of around here
21:56meaning that this percent of the
21:59population if you look at this this is
22:01tenderness the higher it is the more
22:03people are like that so people over here
22:05on this right side are typically what
22:07you would say our fibromyalgia patients
22:09so these are people who have a
22:11heightened pain response to a painful
22:14stimulus or as some of you may
22:16experience you actually have pain from
22:19non painful stimulus someone's shaking
22:22your hand someone giving you a hug or
22:24even just kind of grabbing your arm to
22:26get your attention that that can hurt
22:28that is that is that amplification okay
22:32that's that knob being turned way up we
22:35know now that it's likely set by genes
22:37or genetics as well as being modified
22:39and again I can't go into it in too much
22:41detail but your body's stress response
22:44system is continually activated in
22:47patients with fibromyalgia so what we
22:50know about patients have you ever heard
22:52the term fight-or-flight that
22:53sympathetic response it's like on for
22:56fibromyalgia patients all of the time
22:58it's why sleep is so difficult you can't
23:01tap into that thing that's you know
23:02brings you to the Zen Zen place right so
23:06the higher your volume control setting
23:09the more pain you will experience
23:12of what that peripheral input is who
23:17here is seen this yep it can be any type
23:27of stimulus yep and what we're learning
23:39what we're learning from yeah what we're
23:43learning from good research right now is
23:45that it's a global hypersensitivity so
23:49pain is just part of it
23:50a lot of good researchers I've been
23:52working with are looking at how people
23:54with fibromyalgia have ohed like they're
23:57very sensitive to smells like for
23:59perfumes and things like that they have
24:02very much sensitivity to bright lights
24:04or flashing lights and and sounds can
24:07bother them and I like I'm a noisy
24:10American I tend to like talk a little
24:12too loud and you know like the annoying
24:14person at the airport right people with
24:17fibromyalgia tend to I've had to kind of
24:20tone down my voice when I see patients
24:22with fibromyalgia and talk in a much
24:23more gentle soft voice because people
24:26with fibromyalgia are definitely more
24:28sensitive to that loud boisterous noise
24:30so this here is actually how your
24:34doctors should be diagnosing
24:35fibromyalgia okay this is the 2010
24:39American College of Rheumatology
24:42fibromyalgia surveyed criteria and it's
24:45essentially a survey that you can take
24:47yourself you don't need to be touched to
24:50have the diagnosis of fibromyalgia given
24:53to you what matters is that you have
24:55widespread pain and that you have the
24:57Associated symptoms we've talked about
24:59so much and I'm gonna this comes in that
25:01article from the Journal of American
25:03Medical Association you can actually
25:05take the survey yourself score it
25:07yourself and find out what your number
25:10is in order to meet criteria for
25:12fibromyalgia you have to have a score of
25:1513 or more you get 12 total points from
25:19the top of this you get 19 total points
25:21from the widespread pain index it gives
25:25from 0 to 31 and unfortunately it's
25:28cutting off but it should say
25:30fibromyalgia miss yes it's a real
25:35medical term it's actually been
25:36published in articles it means how
25:39fibromyalgia are you are you a little
25:42fibromyalgia a lot fibromyalgia I like
25:45to joke it's not really a joke but I
25:48like to say everybody has a little bit
25:51of fibromyalgia in them and I've taken
25:54this survey I take it regularly because
25:56I like to see where I fall compared to
25:58my patients and if I'm stressed out or
26:01if I'm anxious or have going through
26:02some you know personal stuff that might
26:05not be fun I take this survey and there
26:08are times that my score has been as high
26:09as 10 because I'm stressed because I'm
26:13starting to have symptoms yes I'm going
26:18to send it to arthritis Ireland and
26:21fibre Island and they're going to be
26:22hopefully uploading it on their website
26:24you are very welcome so anyways this
26:28number gives you a sense of where you
26:30fall on this continuum of fibromyalgia
26:33but what's important to note is that
26:35fibre mal just kind of the tip of the
26:37iceberg because as I mentioned people
26:40can take the survey and have evidence of
26:43centralization of their pain but not
26:45meet criteria for fibromyalgia so
26:50firstly touch on it a little bit but I
26:53spend a lot of time talking to my
26:54patients about how their pain from their
26:56fibromyalgia affects them
26:59you guys all look delightful right
27:03you look healthy people look at you and
27:07they say you don't hurt and they say
27:12well why do you hurt so bad you look
27:14fine who cares feels isolated from
27:18friends and family or from anybody
27:21really because people don't look at them
27:23and understand that's hard it's really
27:27really hard and I hate hearing those
27:29stories about patients who their family
27:31members you know say don't come to the
27:33party because we don't want people to
27:35bring you down you know you to bring
27:37Payne I mean that that's just it's
27:40really sad and I think as a physician
27:42like I said I was trained to just come
27:44in and be like yeah you have a disc
27:45herniation yeah we can get you an
27:46injection and maybe I'll feel better
27:48that was how I was trained I've had to
27:50learn over time on my own how to assess
27:55and treat fibromyalgia through reading
27:57and through talking with mentors and
27:59experts but I think what me being a
28:02fibromyalgia specialist has allowed me
28:05to do is become more of a human and have
28:08more compassion when I see my patients
28:11and it's so important for me to
28:14understand on a very human level more
28:16than just pain and where does it hurt
28:18and trying to figure things out
28:19understand how that pain is really
28:22really as a human affecting my patients
28:26and even sometimes how it affects me
28:29when I'm seeing patients I think for you
28:32guys and for most fibromyalgia patients
28:34it's really hard to find the right
28:36provider I've been informed that most
28:38people here get treated by
28:39rheumatologist is that correct so in the
28:44United States rheumatologists won't even
28:47see it anymore let our own Rheumatology
28:50clinic at my hospital if they get a
28:51referral for fibromyalgia they won't
28:54schedule it how sad is that I'm the only
28:57person in the Greater Kansas City area
28:59who will see fibromyalgia patients I'm a
29:02pain medicine doctor most pain medicine
29:05doctors like I said they want to do the
29:06injections they want to just see the
29:08patients it's like if I a veritable
29:09factory of you know seeing people and
29:13I would rather personally take my time
29:16with patients so I'm very lucky that my
29:18institution has supported me in my
29:20mission to make sure that fibromyalgia
29:23patients get seen and get heard and by
29:25being heard it means you get time and
29:27how many of you feel like your doctors
29:29don't have time for you and I think
29:32that's just kind of an overarching
29:34problem right doctors have a lot of
29:36pressure to see more patients and do
29:38more but I think it's an honest -
29:40service to patients and again as I said
29:42before many practitioners are challenged
29:44because they don't understand it and
29:46they don't know how to treat it and it's
29:48challenging and difficult and a lot of
29:50them aren't up to date on the current
29:51research and this is just a little
29:54summary box of kind of what we already
29:56talked about but I think in the interest
29:57of time I'm gonna keep going
30:00so pathophysiology is a fancy medical
30:04word for what's actually seen that's
30:06causing the pain okay so what we know
30:08about patients with fibromyalgia using
30:11quantitative sensory testing techniques
30:13so these are like little machines that
30:15can actually elicit pain from the
30:17patient it allows us to measure a
30:19threshold for how sensitive you are so
30:22it's not fun to do but we have learned
30:26from good research that patients with
30:28fibromyalgia have lowered pain
30:30thresholds on sensory testing compared
30:32to healthy controls and then as I'm
30:35going to show you in a little bit
30:36there's actually a lot of research going
30:38on where they use imaging techniques
30:40using MRI scans to basically elicit pain
30:44and a fibromyalgia patient inside of an
30:46MRI scanner and watch how the brain gets
30:49activated so we'll talk a little bit
30:53a lot of the abnormalities that we see
30:56not only the pain but the depression the
30:58trouble sleeping come from altered
31:00neurotransmitters such as norepinephrine
31:02and serotonin in your brain and that is
31:05why that you're having problems with
31:07those things is because typically
31:09there's a lack of those
31:10neurotransmitters who's been told this
31:17right my patients tell me that all the
31:21and it actually is it's in your brain
31:26okay this was the seminal paper that
31:30proved that fibromyalgia brains process
31:34pain differently than people who do not
31:36have fibromyalgia this legitimizes your
31:40condition no one can look at you and say
31:43that you don't have fibromyalgia if they
31:46take an MRI of your brain and press on
31:48your thumbnail while you're in the
31:50scanner and make you hurt your brain
31:51regions that are propane will light up
31:55like a Christmas tree compared to
31:57someone who doesn't have fibromyalgia
31:59also your brain the the processing of it
32:03will reduce the amount of neural
32:07transmission to the anti-pain regions so
32:10your brains just like I said that volume
32:13knobs cranked up it's doing everything
32:14it can to promote pain and that's why
32:18the treatment of fibromyalgia is to help
32:20turn down that hypersensitivity or that
32:22volume knob this was just a more recent
32:26study and really to use just kind of
32:28like a pretty picture but this is a
32:30brain and what they did is they looked
32:33at that same scale that fibromyalgia in
32:35this scale that gives you the score from
32:370 to 31 and they found that the more
32:39severe your score meaning them your
32:42fibromyalgia ms is high that you
32:46actually had more activation of your
32:48brain so there's actually correlates
32:50with how severe your pain is - how much
32:54your brain is being activated in those
32:56pro-pain regions so just to summarize
33:01the brain findings a little bit what we
33:03see is that brains of patients with
33:05fibromyalgia amplify pain signals by
33:09sending more blood flow and more neural
33:11activity to the parts of the brain that
33:13increase pain and less blood flow and
33:17less neural processing to the areas of
33:20the brain that actually fight pain or
33:22anti pain alright who wants to take a
33:26little quiz did you guys think you were
33:28going to come here and take a test
33:29I'm gonna give me one all right these
33:35are knees these are x-rays of knees this
33:38is a normal x-ray of a knee and this is
33:41bone on bone severe osteoarthritis of
33:44the knee which of these two people do
33:47you think has pain if you think it's the
33:49left side raise your hand if you think
33:52it's the right side raise your hand it's
33:55a trick question y'all it's both okay we
34:00actually know that about 40% of people
34:03with this x-ray will have no pain and
34:06this is what we're taught in medicine is
34:08if you see something on x-ray well it
34:10must be causing the pain but we know
34:12from epidemiologic studies that about
34:1740% of people with severe osteoarthritis
34:19may not feel pain in that joint but you
34:22can be sure as heck that a fibromyalgia
34:25patient might have a normal x-ray of the
34:27knee but boy is their knee hurting so
34:30that's this is a trick question
34:31and this is why x-rays can't guide us a
34:34lot of the times when it comes to
34:36treatment for fibromyalgia because you
34:38can have a perfectly normal knee on
34:39x-ray but your fibromyalgia is making
34:42your knee hurt okay so what what is why
34:46is all is so important why am I telling
34:47you about this fibromyalgia in a scale
34:49and centralized pain and it's because it
34:53influences treatment
34:55that's why imagine you you have this at
34:59this x-ray of your knee and you go see
35:01you know your GP sends you to an
35:03orthopedic surgeon and think maybe you
35:05need a knee replacement right and the
35:08surgeon comes in and he's like yeah your
35:12knee hurts I can fix it with surgery
35:20I see this all the time what if this was
35:26the patient what if this was the patient
35:28what if that orthopedic surgeon took the
35:30time to find out more about the patient
35:32and say well your knee hurts but so does
35:35everything else I mean there's I wish I
35:38could leave this up here for a long time
35:39because it's actually really funny like
35:41some of the things like orgasmic
35:42headaches and it's it's actually really
35:47afraid this is actually a real patient
35:48from one of my colleagues at the
35:50University of Michigan but this
35:53highlights that doctors are very siloed
35:56in our treatment right so if you see a
35:58surgeon for a knee that has arthritis
36:00he's gonna be like you have arthritis I
36:04will fix it without taking the rest of
36:06you into consideration so
36:10differentiating pain that is more
36:12centralized just like the person I just
36:14showed you that intake form could
36:17provide some important information on
36:20how that person should be treated and
36:23there is actually some really good
36:25research coming out of the University of
36:29Michigan where they're looking at people
36:31who have that x-ray and go see a surgeon
36:34and get told they need a knee
36:36replacement so they took these people
36:39and they enrolled them into a study and
36:40they did extensive questionnaires to try
36:43and get a picture of all the global
36:45things about fibromyalgia so they get
36:47the fibromyalgia skirt surveys they find
36:50out their fibromyalgia nests depression
36:52surveys functioning surveys
36:54catastrophizing surveys all of the
36:56things that come in that picture of the
36:58fibromyalgia phenotype they do the
37:01quantitative sensory testing and they do
37:03the functional neuroimaging and in this
37:06study they had two particular outcomes
37:08of interest so they looked at the people
37:10before surgery determined their
37:12fibromyalgia nests and then followed
37:14them after surgery for six months and
37:16they were looking at how much pain
37:18medication because in the United States
37:20I don't know if you know but we have a
37:21major major opioid crisis going on 115
37:26people in America die each day from an
37:28opioid overdose it is astounding
37:32it's it's sad there are some morgues
37:34like in Ohio a morgue as you use that
37:37word here okay in Ohio in West Virginia
37:41where it's so many people were dying
37:42everyday that they didn't have room to
37:44put the bodies it's that bad so opioids
37:48are a big big thing that we're studying
37:50now because we're trying to make sure
37:51that we treat people the right way I
37:53don't think in any other country wheat
37:55they use opioids the way we do in
37:57America so they looked at post-operative
38:00opioid consumption so this is actually a
38:03the distribution of the patients in the
38:05study and their fibromyalgia survey
38:07scores so zero means they have no
38:10fibromyalgia nests 31 obviously means
38:14that they have a lot of fibromyalgia
38:16nests and as you can see this population
38:18this red line here is the cut point for
38:20a diagnosis of fibromyalgia
38:22so everybody to the right of their line
38:24does not or does meet criteria for
38:27fibromyalgia and everybody to the left
38:28does not so most of this population did
38:32not meet criteria for fibromyalgia but
38:34they were kind of distributed in this
38:36what you would call sub fibromyalgia
38:38range what they found doing some
38:41statistical analyses that for every one
38:44point increase in that fibromyalgia
38:46nough score they would use 9 milligrams
38:50more of morphine during their
38:52hospitalization and that they would have
38:56a 20 to 25 greater likelihood of not
39:00getting any significant pain relief from
39:03that knee surgery which is astounding
39:06because you would think this person has
39:09me on you know bone-on-bone knee
39:10osteoarthritis you remove the joint you
39:13put in a new one they should be fixed
39:14right what this is telling us is that
39:17the amount of centralized pain or
39:20fibromyalgia fibromyalgia is that
39:22someone has doesn't even mean that they
39:25meet criteria for fibromyalgia that they
39:28are less likely to respond to these
39:30surgical interventions to treat things
39:32out in the periphery and they found that
39:35it was actually independent of classical
39:37psychological factors again heralding
39:39that thing that this is about this is a
39:41brain pain disorder this is it not
39:45all influenced by depression or anxiety
39:49again signalling that this is in your
39:52head it's just in your brain okay you're
39:54not making this up so we're gonna move
39:58on to treatment integrated approach I
40:00know that Ursula kind of touched on this
40:02that it's not just about the pills it's
40:04not just about the physiotherapy it's
40:06not just about complementary you have to
40:09do them together you need a
40:11comprehensive and multidisciplinary
40:13approach to treating this and that's why
40:15I say pharmacologic I use the
40:17medications in my practice all the time
40:19but I typically am doing it alongside a
40:22whole host of other things such as
40:24physical therapy exercise meditation
40:26pain psychology and I find that it takes
40:33a little bit of cheerleading on my part
40:36because by the time the patients come to
40:37me they're downtrodden they seem like
40:41eight different doctors who don't know
40:43what they're doing and they're literally
40:45like I've had patients come in the room
40:47and just kind of look at me like this
40:49like what's this lady gonna do for me
40:52that's different than everybody else
40:55well you just happen to walk into like
40:57doctormick personalities you know I I'm
41:01a cheerleader for people because a lot
41:03of people are so downtrodden and they've
41:05lost their support networks that they
41:08don't feel motivated to even try and get
41:11better anymore because they've had so
41:13many tries of trying to get better and
41:15then the doctor just shoves them aside
41:17when they can't get better that
41:19sometimes all you need is like a hug
41:21from a lady from Kansas to feel better
41:23right I mean I think hugs give you a
41:26little boosts of that that Boxey Tosun
41:28hormone like you know when you're
41:30breastfeeding your baby or you're like
41:31you know having a really it's just that
41:34human touch is so important but I find
41:37that those patients who are enthusiastic
41:38and motivated and inspired to get better
41:41are the ones that do but the most
41:45important piece of information is that
41:47the change can't happen overnight and I
41:51tell my patients this is not a sprint or
41:54yeah it's not a sprint okay
41:57it's a marathon and there are times that
41:59I've had to work with people for up to
42:01over like a year slowly
42:04baby steps pacing yourself you know I
42:08have a lot of patients who want to get
42:10back to like running a 5k or doing
42:12whatever because they used to not
42:15recognizing that tomorrow I'm gonna ask
42:17you to walk from here to there and we're
42:19gonna start with that the next day I
42:21want you to walk a little bit further
42:23and a little bit further and it's gonna
42:25hurt at first but I call it the good
42:27hurt when you have not been exercising
42:30you've been sedentary for so long your
42:32body's muscles do something called
42:34atrophy they get smaller so you do have
42:37to work on kind of slow baby steps
42:40towards getting better so you can
42:42condition your body again and once you
42:44do you will find that you can do more
42:46and more so I like this chart because a
42:50lot of patients with fibromyalgia
42:52especially those who are aging can have
42:55more than just centralized pain going on
42:57you know we do get those knees that look
43:00like that and it could be causing the
43:02pain in fibromyalgia patients so this
43:04chart is really nice because it puts
43:06pain into three different buckets
43:09nociceptive pain neuropathic pain and
43:12centralized pain so knows the septic
43:15tank comes from inflammation or damage
43:17neuropathic pain comes from nerve damage
43:21or entrapment and then centralized pain
43:23as we've talked about already I'm not
43:24going to go over it again
43:25but you can see that the treatment
43:27options for each different type of pain
43:30are very very different and you can have
43:33one of them you can have two of them you
43:36could have all of them so it's very
43:38important as a patient that your doctor
43:41tries to delineate which bucket or
43:44buckets you live in and treat them
43:47accordingly otherwise your doctor is
43:50doing your you a grave disservice in my
43:53opinion so it's a rather busy slide I'm
43:58gonna try and go through these are all
44:01the different neurotransmitters that can
44:03influence pain so on the left side here
44:06you can see that these are things that
44:08generally facilitate
44:11pain transmission glutamate is an
44:13excitatory neurotransmitter so it's
44:15substance P and nerve growth factor and
44:17serotonin what we know about patients
44:20with fibromyalgia doing studies is that
44:22all of those are increased so
44:25essentially if you have an increased
44:27level of these neurotransmitters you're
44:29going to facilitate or make more pain on
44:31the right side is things that generally
44:34inhibit pain transmission and this is
44:37related to what you're called you're
44:39descending anti nociceptive pathways so
44:42your brain has the ability to amplify
44:43pain but it also has the ability to
44:46dampen it or make it less so in patients
44:49with fibromyalgia things like
44:51norepinephrine even endogenous opioids
44:54which are things we call like endorphins
44:57are less in patients with fibromyalgia
45:00although there's some new emerging
45:02research that patients with fibromyalgia
45:04actually they think maybe have an excess
45:07of endorphins and that sounds strange
45:10right because the north UNS make you
45:11feel good but we're thinking too much of
45:13a good thing is actually a bad thing and
45:15we'll talk about it in just a second so
45:17doctors can choose treatments that
45:20target all of these different
45:22alterations and I'm just gonna point out
45:24one of them here is called low dose
45:26naltrexone and I know I think I know
45:29that least one person in the room who's
45:30taking it has anybody else taken this
45:32medication this is a really new and
45:35emerging therapy based on that kind of
45:38idea that there's too much opioid in the
45:41body that the body is making too much of
45:43its own opioids because what now trek
45:45zone does is it actually blocks opioids
45:51and again just kind of a summary slide
45:54here strong evidence means that there's
45:57a lot of literature and good research to
45:59support it and it's generally favorable
46:01and positive so these are things that
46:04are like antidepressants try cyclic
46:06antidepressants amitriptyline has
46:08anybody in here been amitriptyline
46:10causes all sorts of side effects huh
46:13yeah it's pretty gnarly there are newer
46:16versions of amitriptyline that may be
46:18available such as nortriptyline or does
46:20for me that your doctors could look into
46:23selectively nor NERP and nephron
46:25reacting inhibitors can be used things
46:27like duloxetine or cymbalta is that
46:29available here in this country do you
46:32guys have Sibella or min mil nasa cran
46:35so it's like the newer like sister drug
46:38of symbol totes available in the united
46:40states but it's very very costly and
46:42then venlafaxine which is affects her
46:45gabapentin oi pre Gavilan also known as
46:48lyrica which for some people can be
46:51helpful but some people not and then
46:53gabapentin which is kind of like its
46:55older brother drug it's been around for
46:57a really long time and these are
46:58typically anti-seizure medications but
47:01they worked on reducing that
47:03hypersensitivity because they're what we
47:05call a membrane stabilizer so they're
47:08trying to stabilize the act the
47:10overactive firing of the nerves in your
47:12body modest evidence for tramadol and
47:16low dose naltrexone cannabinoids is that
47:20available here cannabinoids now we wacky
47:23people in the united states are starting
47:25to legalize it everywhere
47:27strangely enough it's reducing opioid
47:30use but it's increasingly car accidents
47:34and other stuff silly Americans okay we
47:39got weak evidence for these right here
47:41and then there's no evidence for at
47:43least four standalone fibromyalgia for
47:46things like opioids are taking chronic
47:49steroids so we've kind of discussed
47:53about that low dose naltrexone and why
47:55that has been thought to be helpful for
47:56fibromyalgia and they've actually been
47:58doing some studies looking at MRIs of
48:01the brain and what they found is that
48:02patients with fibromyalgia have less
48:04receptors to take in the opioid and bind
48:08it and cause pain relief so this may be
48:11why I don't know if any of you've ever
48:13had a surgery where they did give you
48:15some pain medications that are opioids
48:17they work less effectively in
48:19fibromyalgia patients because you just
48:21have less of the dange receptor for the
48:22drug to go into that's why the low dose
48:25naltrexone is hoping because it's
48:27helping actually block your endogenous
48:29opioids and help you
48:30more receptors so if you have more
48:32receptors you could fight more pain so
48:36emerging research these are just some
48:39great non pharmacologic therapies I
48:41don't know why it got cut off here but
48:42education physical therapy exercise
48:45cognitive behavioral therapy which is
48:47something that like a clinical
48:48psychologist or a social work counselor
48:50could do all of these have very strong
48:53evidence for supporting and helping
48:55treat fibromyalgia and at least in the
48:57States and I'm guessing here to access
48:59and compliance with these things
49:02especially the access piece is so
49:04difficult I see a lot of patients who
49:06are on either federal or state kind of
49:08government-funded insurance and a lot of
49:12times I have trouble getting this stuff
49:14for my patients and it's so sad because
49:16they're the ones that need it the most
49:18this is actually something you can
49:21access yourself and it is free and it
49:23was developed by the University of
49:25Michigan again I keep repeating
49:27University of Michigan but they're like
49:28the world experts in fibromyalgia
49:30research and I'm lucky enough to get to
49:32work with them it's cut off here but
49:34it's fibro Guide Med you Mitch DD you
49:39and it's essentially a online cognitive
49:43behavioral therapy modules so if you
49:45yourself can't get to a pain
49:47psychologist or a psychologist who can
49:50do cognitive behavioral therapy you can
49:53go online and access it and they
49:54actually did some studies looking at
49:56patients who did this versus just
49:58conventional management and they found
50:00that the patients who use this had 29%
50:04reduction versus 8% reduction and their
50:07pain scores compared to just usual care
50:09so it does seem to be helpful these are
50:13some complementary and alternative
50:14medicine techniques which I think you
50:17guys are gonna learn a bit a little bit
50:18about like Tai Chi a little bit later Qi
50:21Gong meditation is kind of like a
50:23Eastern medicine practice of meditative
50:26practice we have a couple studies at my
50:27university ongoing looking at that then
50:31this is more of just a summary slide I
50:33did this to doctors all the time about
50:36how they should focus treatment so
50:38pharmacologic therapy is should be aimed
50:40the symptoms and then non pharmacologic
50:43therapy is to address the dysfunction
50:45and when you do all of these together
50:46when you have that integrated multiple
50:49multidisciplinary care you'll get better
50:52because your symptoms are being managed
50:54as is your dysfunction if you only focus
50:56on drugs you're not gonna address the
50:58other things that are causing you
51:00difficulties on a daily basis so it
51:02really has to be integrated and
51:04complementary and then again this is
51:07another summary slide with those buckets
51:09of nociceptive neuropathic and
51:11centralized pain and what drugs have
51:13been shown to be beneficial for them and
51:16I think in terms of like closings kind
51:19of comments here about what I see as
51:21being kind of the wave of the future in
51:24my specialty is something called
51:26personalized analgesia and we think that
51:30by taking patients and giving them
51:32extensive questionnaires maybe even
51:35looking at their genetics in the future
51:37this is that thumb squisher I told you
51:39about it kind of looks like a gun or I'm
51:42not sure but like a joystick but we put
51:45people's thumbs in there and it squeezes
51:47on them that gives us pain threshold
51:49readings but we think that by taking
51:51this information about patients that we
51:53may be an even the fMRI it's very
51:56expensive but we think one day it might
51:58be used in clinical the clinical realm
52:00that we can then tailor specific
52:03therapies for patients based on how they
52:06look on all these different measures
52:08because right now I stand before you and
52:11tell you I'm one of those doctors who
52:13still has to say well I guess we'll try
52:16this first and I hope that one day I can
52:19stand up here and tell you that I have a
52:21better way to approach treating patients
52:24pain all I know is I give it an
52:27integrated approach and that's all I've
52:29got right now I think in terms of
52:32avenues for further research this
52:34concept of traumatic events I think is
52:36really important and I'm not gonna make
52:38anybody raise their hands in this room
52:40to say whether or not they've had a
52:42traumatic event but you can think to
52:43yourself if you've had and think gee
52:47when that had happened if someone had
52:51could I have prevented this there's
52:54actually good research coming out of
52:55Children's Mercy Hospital in Kansas City
52:57where they have an amplified pain clinic
53:00for children and adolescents and they're
53:03actually finding that intense
53:05physiotherapy and psychological like
53:08cognitive behavioral therapy music
53:10therapy yoga acupuncture all of those
53:13modalities when they intervene in a
53:15young person it gets better so there
53:20must be something about when the brain
53:22switches from adolescence to adulthood
53:24that that ability to really get in there
53:27and fix it is gone and so I think that's
53:30a huge Avenue for research that is
53:32hopefully gonna be you know hashed out
53:34in the near future obviously looking at
53:37personalized treatment plans and
53:38understanding how mono therapy or
53:40combination therapy could be better than
53:42one or the other and then obviously that
53:44impact the societal impact of
53:47multidisciplinary care I just like to
53:49leave you with some hope I I could come
53:53here to Ireland I wish I could treat all
53:55of the fibromyalgia patients in the
53:57world I'd love to give all of you a hug
53:59and just tell you that I'm here and I
54:01listen and I care and hopefully you will
54:04find a physician here in Ireland that
54:06will appropriately diagnose provide
54:08referrals and treatment options for you
54:09I think the number one thing is
54:11maintaining that positive attitude and
54:13and remembering dr. niccole's my tier
54:15leader even if she lives in Kansas she's
54:18my cheerleader find support I think it's
54:20so wonderful what Fiber Island and I
54:23arthritis Ireland has going here we do
54:25not have anything like this in the
54:27States the fact that you have this
54:28support network and education and
54:31outreach with advocacy is honestly
54:34inspiring like I might even get a little
54:36emotional when I leave here today
54:38because this is just really great
54:40so keep motivated to reduce your
54:43disability and improve your functioning
54:45and then I'm going to butcher this
54:50I'd like to give a big shout out to
54:53Brian Lynch for giving me like the
54:56Kansas like pronunciation guide so
54:59vishay more people aid bogus inori dumb
