July 10, 2025 • 52 mins
In this episode of the Healthy, Wealthy, and Smart Podcast, host Karen Litzy welcomes Dr. Linda Bluestein, a recognized expert in hypermobility disorders and founder of Hypermobility MD and Bendy Bodies Podcast. Dr. Blustein shares her journey with hypermobility, detailing how health issues impacted her early aspirations of becoming a ballet dancer. After years as an anesthesiologist, she discovered her connection to connective tissue disorders, which led her to focus on this patient population. Together, Karen and Dr. Bluestein dive into the complexities of hypermobility disorders, the importance of research, and the support available for individuals affected by these conditions. Tune in for valuable insights and information that can help those navigating hypermobility disorders.
Time Stamps:
[00:01:27] Personal journey to hypermobility focus.
[00:05:00] Joint hypermobility disorders explained.
[00:10:43] Generalized joint hypermobility assessment.
[00:12:22] Ehlers-Danlos syndrome overview.
[00:15:52] Patient education on EDS concerns.
[00:19:40] Connective tissue and its importance.
[00:25:08] Research funding for EDS.
[00:29:27] Misconceptions about hypermobility and talent.
[00:30:59] Forced hypermobility in dancers.
[00:34:27] Chronic pain and validation.
[00:38:20] Treatment for connective tissue disorders.
[00:42:05] Importance of recognizing hypermobility.
[00:47:40] Believe in yourself.
[00:48:42] Self-compassion and personal growth.
More About Dr. Linda Bluestein, MD:
Dr. Linda Bluestein, MD, is a multifaceted professional renowned for her expertise in hypermobility disorders. As the founder of Hypermobility MD, she offers specialized medical care to individuals grappling with these conditions. Additionally, Dr. Bluestein is the driving force behind Bendy Bodies, a worldwide coaching practice aimed at empowering and supporting individuals with hypermobility.
Her influence extends beyond clinical practice. Dr. Bluestein is the founder and host of the esteemed podcast, "Bendy Bodies with the Hypermobility MD," where she shares valuable insights and resources, enriching the lives of her audience. Dr. Bluestein's dedication to advancing knowledge and awareness of hypermobility disorders is evident in her extensive publications and international lectures. Notably, she contributed two chapters to the influential book, "Disjointed – Navigating the Diagno
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:02):
Hey everybody, welcome back to the Healthy, Wealthy, and Smart Podcast. I
am your host, Karen Litze, owner of Karen Litze Physical Therapy
in New York City. And today I'm really excited
to talk about hypermobility disorders. We
did an episode on this last year and I really, so
many people reached out to me to thank me for doing an
(00:25):
episode about hypermobility disorders. So
today I'm thrilled to have Dr. Linda Blustein. She
is a recognized expert in hypermobility disorders and
founder of the medical practice, Hypermobility MD.
She also leads Bendy Bodies, a coaching service
supporting individuals with hypermobility. Dr. Blustein
(00:46):
hosts the bendy bodies with the hypermobility MD podcast,
sharing insights within with the community. She
advocates for hypermobility research serving on
several advisory boards. So Dr. Blustein, welcome
to the podcast. Thank you so much for having me. Like
I said, I got so many emails and
(01:08):
so many positive responses the last time we
did a podcast on this topic. So I'm really excited
to dive in. But before we do that, I would love
for you to tell the audience why you decided to
Yeah, it was kind of decided for me, like with a
(01:30):
lot of us. So I grew up wanting to be a ballet dancer and
started to get more and more health problems. Was able, though,
to finish my medical training residency, worked as
an anesthesiologist for over 20 years in the operating room.
But then I started to get more medical problems again. And somewhere along
the way, I stumbled upon connective tissue disorders. And I started
doing more reading and research. And I thought, wait a minute, this could literally explain
(01:54):
my entire life, which a lot of people come
upon this the exact same way, like, wait a minute, they kind of figure it
out for themselves. And at that point, I
later like, you know, couldn't really work in the operating room anymore. I had bone
grafting surgery in my wrist, and I got CRPS. And it's kind
of one thing led to another. And so I needed to figure out, you know,
(02:14):
what am I going to do now? And I, my youngest
son was gonna be going off to college, I knew that I would be very depressed if
I didn't have something to do. So I thought, well, maybe I
could write about hypermobility disorders. Maybe I
could focus on pain management in hypermobility disorders.
And then one of my colleagues, my mentor, Dr. Pradeep
(02:37):
Chopra, he said, you need to open a clinic. And I was
like, really? And he said, you're an anesthesiologist. You
understand. you know, cardiac physiology, respiratory,
you know, musculoskeletal neurology, like you have a very broad basis
of medical understanding. And there's desperately lots
and lots of people who need help. So you need to do this. So
(03:00):
he talked me into it. And so I ended up opening a
clinic and then starting my first podcast, then
a second podcast, which is currently the bendy bodies podcast. So
yeah, it kind of evolved from there. It was not something that was a
Yeah, like you said, it usually never is, but somehow it
finds you, right? It finds us somehow. Now,
(03:23):
how much information did you get
on hypermobility disorders in
So you have to keep in mind I graduated from medical school in 1990. So
what I can remember was maybe like a sentence or
two. I hope that it's a little bit more now. I would
(03:45):
love for it to be a lot more now, but I know for a fact that it's not. But
I think I literally got a sentence or two about hypermobility disorders
and maybe Marfan's might have been rolled into there, like connective
Right. Right. And I've heard a lot of that
similar description of
(04:06):
how much pain science. Yes. Physician.
So you've kind of been able to combine both of them. Now, as an anesthesiologist, you
might get more than the average. Physician,
Right, right. Because we had to rotate through the pain clinic. So
we all had to do that. And then I
actually did pain medicine. I did like epidurals and
(04:29):
celiac plexus blocks. And I did a variety of procedures like
that when I first finished my residency at my very first
job. But then I went to a practice where
they already had enough people doing the pain clinic. So I worked just
in the OR then for the next 15 plus years. Got
I've had a couple of epidurals myself. Have
(04:51):
you have had a few? Um, okay. So let's
get into now the joint hypermobility disorders.
So why don't we start with some definitions? Sure.
Right. So We've got, of
course it's medicine, right? So we use a lot of abbreviations. So
let's start with HSD, which stands for
(05:14):
hypermobility spectrum disorder. So can
you define what that is and how one might present with
So I definitely can describe that. Can I back it up one
notch though and start with J-H-M? So
J-H-M stands for joint hypermobility. And
(05:35):
that means that a joint or a group of joints has greater
than expected range of motion. And we should be looking at norms
for that age, sex, race, et
cetera, because that does impact how much joint range
of motion is expected. But we should start with that. And
then hypermobility spectrum disorders is when you have joint
(05:56):
hypermobility and you have symptoms that may be related
to your joint hypermobility, but you don't have a
condition, another condition to explain your symptoms. So
you don't have, for example, Down syndrome. A lot of people forget that
people with Down syndrome have joint hypermobility. So
if somebody has that, then you don't diagnose them with another
(06:19):
condition because you have an explanation. So joint hypermobility
is kind of the foundation that I like to think of, even though
joint instability is probably even more important. You're
a physical therapist, you're probably very used to assessing joint instability
and joint hypermobility, but for someone like me who didn't do a physical
(06:39):
therapy type of training program, you know, assessing
for joint hypermobility is easier for us. Learning to
use a goniometer is easier than learning how to assess joint
Right. And actually that goes right into my next question
is how does one, how do you diagnose
(07:00):
what are some valid and
reliable observations
or diagnostic tools that
physicians, physical therapists, et cetera, might
be able to use to help us diagnose some of these,
(07:23):
Right, so the BITEN score is something that probably a lot of
people are very familiar with. I don't like the BITEN score, but it
is unfortunately, you know, very well known. The
nice thing is it's super quick and easy to learn and
memorize and use and apply in the clinic setting. So it's
not a bad thing to assess for, but we should always remember that this is just
(07:43):
one small piece of information. It's not the be all and end all.
So kind of almost regardless of what that number is, you're going to want to
look at other joints. So, so basically, oftentimes we
start with the biting score, which is, you know, can you touch your thumb to your forearm?
Can you bend, you know, when you bend back, when you extend your fifth finger, does it
extend by more than 90 degrees? And for that, you're looking
(08:04):
at, you know, the, the first metacarpal, uh, you're looking
at the fifth finger, um, and you're looking at this angle here.
You're not looking at the tip of the finger, right? So that's an important point. So
those are the first two maneuvers and you're looking at right and left and you get a point
for each maneuver. And then you're looking at elbow hyperextension. Is
it greater than 10 degrees? If it's 10 degrees or less, it's considered
(08:26):
within the normal range. And obviously this is going to vary again by
age and surgeries and arthritis and all kinds of
things like that. And then we look at knee hyperextension. Do
the knees hyperextend by more than 10 degrees? And then the last maneuver
is can you put your hands flat on the floor without bending your knees? So
the first four maneuvers are bilateral, right? And then the last
(08:49):
one is, you know, just one point. So you look to see what that score is,
and then you look at what their age and what the number
is. And then you also want to look to see, you know, what are their other
joints like? Do they have hypermobility and other joints? And I will often ask,
you know, do you have party tricks that you do? And- That's a
good one. Yeah, yeah. So that way I can, I usually
(09:10):
tell them, I usually say, wait, let me get my video camera ready, assuming
that they've signed the consent form for photos and videos. And then I
ask them to do that party trick for me and I videotape it. And I say, okay, now
don't ever do that ever again. And I put
the video on their patient portal so that way they have access to
it. So that way they can show other doctors if they're questioning the
(09:30):
diagnosis, if they're like, no, no, I don't believe you. They don't have to keep doing that
trick over and over and over again. Videotape it, keep
the video, have it labeled in your phone so you can show people, but
you don't have to keep doing it over and over again and having that wear and tear on your
joints. Right, right. So that makes sense. Yeah. So
that's what I like to start with. And then, you know, again, looking at
(09:51):
other joints, whether you know, it's okay, what other joints do you have
either that you can do party tricks with or that they're painful, they
feel loose to you, they feel unstable. and
kind of assess that way. And then also there's another tool that's really helpful
called the five-point questionnaire. So the five-point questionnaire
asks the first two points, just like the BITEN score, you know, can you
(10:12):
now or could you ever touch your thumb to your forearm? Can you now or could you
ever put your palms flat on the floor without bending your knees? And then the last three
questions are, as a child, could you contort your
body into strange shapes or do the splits? And then the
next one is as a child or teenager, did you dislocate your shoulder or
kneecap on more than one occasion? And then the last question is, do
you consider yourself double jointed? So on the five point questionnaire,
(10:36):
if you answer yes to two or more of those questions, it's highly likely
that you have generalized joint hypermobility. So
it's important to distinguish between generalized joint hypermobility and
localized or peripheral joint hypermobility. So
peripheral joint hypermobility is when it's in the hands and
the feet, but not elsewhere. If you have localized joint
(10:59):
hypermobility, you have hypermobility in perhaps like your hips,
maybe you have hip dysplasia or something even to explain that. So
if you have localized joint hypermobility, it's just in a couple of joints. If
you have generalized joint hypermobility, it's in multiple areas
of your body. And if you have historical joint hypermobility, that
means you were hypermobile in the past, but you're not anymore. Oh,
(11:22):
And as the practitioner and
someone, you're taking people through these
questionnaires and observation, what
are you starting to build in your head? I
know that's like a broad question, but can you take
us through your sort of differential diagnosis in
(11:44):
your head that you will then kind of
Yeah, yeah, definitely. There are people who
think that they are hypermobile and they're not. I
mean, that's rare. That's really quite rare. But there's people who suspect
or are worried about that. And not only are they not hypermobile now,
they have like zero on the five point questionnaire and like none of
(12:07):
their joints are hypermobile. I've literally had this happen to like,
you know, a sister of somebody who's a patient of mine and they're like, oh, I'm worried that
this is me too. And it's like, no, you have diffused arthritis
and that's why you're in pain, but you don't have, Ehlers-Danlos,
that's very clear. But anyway, so what I'm looking for is the
triad of things that you see with the Ehlers-Danlos
(12:29):
syndromes. So Ehlers-Danlos syndromes are the most common hereditary
disorder of connective tissue and there are 14 different subtypes and the most
common subtype is the hypermobile type. So what we're looking for there
is does the person have joint hypermobility, Do
they also have changes in their tissues, like their
tissues are weak, maybe they have abdominal hernias, they've
(12:51):
had pelvic organ prolapse and
areas where their tissues are clearly weak. And then also the
other third part is, do they have changes in their skin? So they
might have mildly stretchy skin, they might have soft velvety skin,
they have abnormal scarring where their scars are wider
than you would expect them to be but also thin. So
(13:13):
we're looking for those kinds of things and that's what I'm starting to put together
in my mind is, you know, are these... Does
this person present with mostly musculoskeletal problems? So
maybe they have joint dislocations, subluxations, tendinopathies, you
know, bursitis, joint pain, or
do they have those things and also have, you
(13:33):
know, some of these other signs that we look for with the
Ehlers-Danlos syndromes. And what are the red
flags, if there are any? Oh yeah,
there's definitely red flags. So the vascular form of
EDS is the most life-threatening form. So people
have died of the hypermobile type of EDS, but
(13:54):
it's usually related to like other sequelae. they
end up having a bowel perforation and get septic and
that's something that can happen but it happens less often with
hypermobile EDS than with vascular EDS where the blood
vessels are very, very fragile and that person
can can pass away at a very young age from rupture of
(14:15):
the aorta for example. So we definitely want to be screening for
vascular EDS. There are certain things that we look for like spontaneous
pneumothorax, so that's where air gets between the lung pleura
and the chest wall cavity. So that's something that
we might see. might see dislocated hips at birth, club
foot. Those people tend to have more peripheral joint hypermobility.
(14:39):
So you would see the hypermobility in the hands and the feet. You
see significant bleeding and bruising. So,
you know, a lot of people with hypermobile EDS do have more easy
bruising and maybe a little bit more easy bleeding, but this is like, bleeding,
you know, not just a little bit more bruising
and that kind of thing. There's also some typical or
(15:02):
classic facial features that we might see. So you
see like a thinner nose, very thin lips, sometimes
you see lobeless ears. So those are some of the things
Right. So you're, as your patients in front of you and you're, you
know, doing your whole evaluation, all of this is going into
(15:23):
your mind and you are kind of making this diagnosis.
So how do you speak to the patient about this?
They're coming to you. They know they're a little stretchy, a
little bendy, and I, maybe they're having pain and
they've been having some other things that
maybe they can't explain. Right. I'm sure that comes to you a lot. So
(15:44):
how do you speak to them
Well, the thing is, most of my patients
have already done a lot of research and they are very, very
knowledgeable. They teach me things every single
day. And I'm not just saying that just to be cute or clever. They
(16:07):
really, really do. very, very wise. And
so usually they already know about vascular EDS. They
know about Marfan syndrome. They know about these conditions that are
life-threatening. And oftentimes they're really, really worried
about it. And what's challenging is, you know, I
had a I had a client the other day, somebody that was coaching. I
(16:28):
wasn't seeing them as a patient. But they had done a
genetic test, and they got back a variant of uncertain significance
in a gene that can be related to Louie Dietz, which is another connective
tissue disorder. So they did what all good patients do.
they googled Louis Dietz, right? And they were like looking
to see what are the list of symptoms that are associated with Louis Dietz. And
(16:52):
they went check, check, check, check, check, like they had a
lot of the symptoms, right? But they didn't have the
more specific symptoms. They had a lot of the much
more vague symptoms like joint hypermobility, you
know, the tendinopathies, joint pain, you know, these things that are not very
specific. So that's why some of these really, really specific
(17:12):
like, you know, organ rupture, These
are very, very important findings that you see with the vascular form
of EDS. So usually when I
have patients that are worried about vascular EDS I'm already looking for
these things and I'm listening for these
very, very serious... medical
(17:33):
problems that they likely have already had. And
if I'm not hearing any of those things, you know, a lot of times they still want
genetic testing to be done, but I usually try to
explain to them that, you know, you don't have anything that
worries me about vascular EDS. I feel very confident that
you don't have one of the more rare types either, which, you
(17:54):
know, those have their own very specific findings. And
that's where it's tricky because the hypermobile type is probably fairly
common. The classical and vascular types are the next most common,
but then the rest of the subtypes are actually quite rare.
So most of the people that I see have either hypermobile EDS
Yeah. And this may be a
(18:17):
silly question, but I'm going to ask it anyway. Are
all of these, all of the things that we're talking about, joint hypermobility and
various forms of EDS, are they all
That is not a silly question at all. At first
I think the teaching or the thinking was that hypermobility spectrum
(18:40):
disorders was maybe, you know, people were hypermobile, we weren't
really considering those connective tissue disorders, but then I noticed a
shift in the way like the Ehlers-Danlos Society was speaking
about these conditions and I literally sent Dr. Hakeem, who
is their medical director, I sent him an email and I said, I'm
confused because I thought that we were thinking that HSD
(19:01):
was more like a musculoskeletal condition and not a
disorder of connective tissue. And he wrote back
and he said, no, we're kind of considering it still under the umbrella of
connective tissue, but not necessarily like a hereditary disorder of
connective tissue, like Marfan's, Louis Dietz, and EDS.
Got it, got it. And when we're talking
(19:24):
about connective tissue, Would you mind
listing what the body's connective tissues are
just so that people who are watching that maybe they aren't in
Sure, so connective tissue connects everything to
everything else. We actually only have four types of tissue
(19:47):
in the body, believe it or not. So we have connective tissue everywhere.
So it's, you know, our tendons, our ligaments, you
know, it's in the walls of our intestines, you know,
our skin. I mean, it's everywhere. And really, The
other way to think of it is it's our extracellular matrix. We
used to think that these were, quote-unquote, collagen disorders, but now
(20:09):
we know that it's not simply collagen. It can
be anything involved in the extracellular matrix. So
Which is a lot, right? Which is a lot, yeah. So to your point,
under that umbrella are some of these joint hypermobility and
EDS, but it might also be like rheumatoid arthritis
(20:32):
or maybe lupus or scleroderma, right?
Which is, I guess we would say the opposite maybe on
the opposite end of the spectrum as hypermobility.
Actually, because it's the connective tissue, your joints can
(20:53):
actually still be hypermobile, but
Yeah. I'm not sure about that combination, but those are, those
are what you just listed. Those are all acquired connective tissue disorders, right?
So that's the, that's the significant difference. And those are autoimmune conditions,
but we now think that the immune system is probably very
(21:16):
important in the hypermobile form of EDS and
that's why we've had so much difficulty finding a gene or a group
of genes responsible for this phenotype. Phenotype
meaning clinical picture. And speaking of phenotype, there
was a fascinating study that was done recently that looked at, I
believe it was It was psoriatic
(21:37):
arthritis, rheumatoid arthritis, I
think it was maybe classical EDS, hypermobile EDS and
HSD and maybe one or other category of
patient. And they did like western blot analysis and
they actually found that the fingerprint... Yeah,
basically the chemical marker for hypermobile EDS
(21:59):
and HSD in these groups of patients were
basically the same. So for these other conditions they
looked different, but people that had been labeled as having hypermobile EDS
and those that had been labeled as having HSD had a very, very
similar set of markers. So it's
very, very possible that we're making this very, very artificial distinction,
(22:22):
but they're not actually different conditions. And of course in medicine this
is what we do, right? We look for patterns, we make up names, we
pick criteria for that condition and then we change our mind a few years later and
we change up the criteria and then it takes a bunch of years for
everyone to get caught up. So it's not like we...
had some higher power that told us this is what these things are. We
(22:44):
humans are trying to sort all this out. Sure, sure.
And with improved research comes
different thoughts and outcomes and things like that. Now,
what is the research like around these disorders? I
mean, is there a lot of money pouring in
(23:05):
to have better research? Like what is the status?
Well, let me first tell you what I think is a pretty funny story.
I was writing an article on the perioperative care of
EDS with my mentor, Dr. Pradeep Chopra, and I'm
an idealist. I had these fantasies, this is going to be in the New England
(23:25):
Journal of Medicine, like this is going to be this amazing paper, because
I'm thinking back to when I was working as an anesthesiologist and how little
I knew about these conditions and how important they are. When
you're positioning somebody for surgery, if they have a connective tissue disorder,
You're much more likely to have a nerve entrapment or nerve compression
and have some kind of post-op complication. You're much more likely to
(23:47):
sublux or dislocate a joint. You're much more likely to have
a problem with instability of the cervical spine, so you need to
be much more careful when you're doing intubations. And after you
put somebody to sleep, like their jaw is going to be looser and
all of these problems that are really, really significant.
So I'm thinking, this is going to be huge. Like, you know,
(24:07):
everyone's going to want a piece of this. Oh my gosh, I was so wrong. We
could not get it published in like the smaller journals and
we ultimately did get it published, but it took It
took a lot of attempts on his part of
submitting it to different journals. And ultimately, we had to pay to get it published, which
I used to think that if you had to pay to get your article published, it was junk. But
(24:29):
now having gone through this process myself and knowing that he and I were very,
very diligent about our research and everything, No,
that's absolutely not the case. Anyway, that was a small digression, I apologize. But
it's that we don't have the kind of funding that
we need to have, especially because these conditions affect a
lot of young people and deprive them of many, many years
(24:51):
of productivity. And especially now with COVID, like we need
people in the workforce. I mean, this is a practical public
health concern. And so we really should be dedicating
a lot more research dollars to these conditions, especially because when
you consider hypermobile EDS, HSD, mast
cell activation, POTS, which is one form of dysautonomia or
(25:13):
dysfunction of the autonomic nervous system, and long
COVID, ME, CFS, like you're talking a
huge percentage of people that if you can get them functioning better,
like they can actually have a much better quality
of life and contribute to society. Whereas if we don't take
care of these people, what are they going to do? They're going to be on disability, they
(25:34):
won't be able to take care of themselves, they're going to have mental health problems. I
mean, it's just a huge, huge problem. So while
we are making some progress with research, we desperately
need more funding for research when it comes to these
Yeah. Yeah. And speaking
of, well, can I just digress? Do you mind if I digress for
(25:58):
Because you had mentioned POTS and I feel like people,
that is another one of those diagnoses that Not
many people are very, um,
what's the word? Uh, like, well, yeah,
well versed, knowledgeable, and it can sometimes take
(26:19):
many years or for that to be diagnosed. So
before we go on and talk about myth busting, would you
mind just giving a little, like a quick definition on pots and
Yeah, absolutely. POTS stands for postural orthostatic tachycardia syndrome.
And basically what that means is when you go from laying down to sitting
(26:42):
up or sitting up to standing, that your heart rate increases
quite dramatically and you have inadequate blood flow generally to
the brain. It's not a blood pressure problem, it's a heart rate problem. If
you stand up and your blood pressure drops, that's orthostatic hypotension and
yes, you would normally get a little bit of rebound tachycardia. but this is
a heart rate problem and we believe that it's probably a final
(27:04):
common pathway, that there's multiple different ways that you can get POTS.
Some cases it's definitely immune-mediated, so a
lot of people who have POTS get an infection, could
be COVID, And after they get the infection, whether it's
influenza A, B, COVID, whatever it might be,
they never recover. And their vasculature and
(27:26):
their neurologic system doesn't
recover sufficiently to be able to give enough blood
flow back up to the brain. So there's
been lots of studies looking at cerebral blood flow in these patients and
it is definitely diminished. You don't have to faint in
order to have POTS, that's a very, very important distinction. And
(27:46):
the cutoff is 30 beats per minute for adults and
40 beats per minute if you're age 19 or younger. Like
I said earlier though, we came up with these numbers. It's not like
some higher power said it's going to be 30 and 40. we
just made those up. So if someone has a heart rate that
goes up by 29 beats per minute and it's sustained, and
(28:09):
you have to have the symptoms for at least three months by the way, so this is not just,
you know, I didn't drink enough fluid one day, I stand up and I'm dizzy, you
know, this is sustained symptoms going on for several months. And
there's other associated symptoms with this, it's not just a
heart rate phenomenon, it is a systemic disorder just
like EDS and HSD are systemic disorders. Things
(28:31):
like temperature intolerance, you see gastrointestinal problems,
like gastroparesis or slow gastric emptying is very, very common. It
affects your ability to sweat and
things like that. So your autonomic nervous system is responsible for
all the things that we don't normally think about. And if your autonomic
(28:54):
Then you have to, you got a lot of things to think about. Yes.
When it's not working. Well, thank you for that because I have
close friends whose children were diagnosed with POTS after
years. Yes. Years. And
I know it can be so frustrating. So thank you for shedding some
(29:15):
light on that. Okay, let's get into some common
misconceptions. And the first one, I just, I
love it so much. So when
we think about people's joint hypermobility issues or
matters, we always think every, that's a
perfect person to be a ballerina. Like all dancers
(29:39):
have this, right? So do those two go hand in
Yeah, and actually I've been seeing more and more lately people saying,
oh, they're so hypermobile and talented, like as
if the hypermobility just automatically means that they're talented. And
if they're not hypermobile, then they must not be talented. Like, how does
that work? Yeah, hypermobility does not equal
(30:01):
talent. But anyway, so yes, a lot of
dancers are hypermobile, especially if you look at certain groups. So
if you look at elite ballet dancers, the percentage
of elite ballet dancers that are hypermobile is very, very high,
like 90 plus percent in some studies. If you look
at contemporary dancers, modern dancers, hip hop, other
(30:22):
forms of dance, it's maybe going to be a little bit less, but it is
still going to be fairly high. Well, why is that? Is
it because it makes them hypermobile or is it because they're
drawn to those forms of dance because of their hypermobility? And
I think it's probably... It's probably more the latter. You
can succeed at something like ballet if you are hypermobile because
you can achieve those gorgeous aesthetic lines. You have
(30:45):
the banana foot and this gorgeous
S-shaped leg that you can achieve these gorgeous lines
with. So I think that it's mostly that, but there
is also forced hypermobility. So a lot of dancers are
doing things like the over splits. They're putting their
foot like on block, like a yoga block. And
(31:07):
then they have somebody push down on their knee to try to force
them into that over split and that creates tremendous strain
on the back of the knee, it's terrible. Terrible, terrible thing to
do. So forced hypermobility is a term that I
first heard from my Bendy Bodies podcast co-host,
especially for the first few seasons, Jennifer Milner, who is a
(31:28):
Pilates instructor and former professional ballet dancer.
And she was like, these people are forcing themselves into hypermobility.
That is just terrible. Okay. So
that's one common misconception. How about that?
If you have symptomatic joint hypermobility, that
(31:58):
Yeah, that's a really, really common one. And it's so frustrating because, you
know, we're kind of taught in medical school that
if somebody comes in and they have complaints in every bodily system
or they have more than, you know, five complaints or whatever it might be,
that they must be, you know, making it up, it's in
their head. you know, they're being melodramatic or
(32:19):
something like that. And so we're not taught to look for things
that could explain symptoms in multiple different bodily systems, yet
these conditions do exist. And if you think about connective tissue, it makes sense.
It's everywhere in the body. So it's going to affect our
blood vessels and our digestive tract. And the
ability to do various different things in
(32:41):
our life, like fatigue is a huge, huge problem for people. And
it makes sense if you think about it. Number one, a lot of people have POTS
or another form of dysautonomia, which does often come with
fatigue. And they're having to work so much harder to
have their joints cooperating and get their muscles to
activate properly. And we also think that there's probably,
(33:02):
at least in some people, secondary mitochondrial
dysfunction that happens because a lot of us develop kinesiophobia. I
know I sure did. So once you hurt yourself
doing a lot of like really simple things, then you're afraid to move. And
some people unfortunately move less and less and less, and
therefore then they start to get some secondary problems related
(33:25):
Right, right. I don't even think about the kinesiophobia, but
Yeah. When I first saw that term kinesiophobia, I was writing my
first paper about pain management in joint hypermobility.
When I first saw that term kinesiophobia, I was like, oh my gosh, I
have kinesiophobia. Then I read about pain catastrophization. I'm
(33:50):
Yeah. Yeah, yeah, yeah. And they often go hand in hand, you
You were like, well, if I do this and this is going to happen and this is going to happen, I'm
going to be in so much pain and I'm not going to be able to go to work and then I'm going to lose my
job and then I'm going to be homeless and... Yep. Typical
pain catastrophization. Yep. I'm really good at that.
Or I should say I was really good at that. Yeah. That's yeah. That's better.
(34:14):
Okay. So it doesn't only affect the joints. Like you
said, it's that connective tissue is everywhere. How
about it's not painful. You're just really bendy.
Yeah, yeah. Unfortunately, I still
see notes from colleagues that say that this person has,
you know, quote, benign joint hypermobility syndrome. And
(34:37):
it's like, I mean, I know if you want to say benign versus cancer, okay, I
get that part. But, you know, there's nothing benign about these
conditions. If you have symptomatic joint hypermobility, you
probably have quite a bit of pain. And a lot of people are
used to being in a lot of pain all the time. So they kind
of, you know, it's funny because we kind of get sensitized to it at the same time
(34:58):
that we learn to just push it in the background. So I feel like, you know, quote unquote,
normal people, you know, have more of a pain switch where
they're either in pain or they're not, whereas we're just kind of
used to like having pain most all the time. But
that also then can often cause allodynia and
hyperalgesia, which is where things that are normally not painful cause
(35:19):
pain or things that are normally only slightly painful, cause more pain.
Yeah. And these are the people that I see quite
a bit of because I work with a lot of people with chronic pain. So
I'm seeing those people with allodynia and hypersensitivity and
trying to explain to them like what that means. And
I do find that when you find as
(35:40):
the patient, when you find the person that can help
explain things, like I'm sure you do, it does
turn the dial down. And so maybe they will
have less pain like Laura Mermosley and David Butler. I'm
So that's what they talk about in their sims and dims. So
(36:02):
you're danger me and your safety in me. So going to a doctor could
be a danger if it's a doctor like, Oh, it's just, you're
fine. You know, it's all in your head. Just go exercise. Or
they can go to someone like you, where you'll explain. And then, then
it becomes a SIM or a safety in me and can actually turn
the dial down. So, you know, it's, It
(36:24):
makes such a huge difference to educate your
patient and to help them when things are
Yeah. And I try to really enforce and
reinforce what I should say. with my colleagues that
you don't have to become an expert in these conditions. Of course, it would be great if
you do, right? But if nothing
(36:46):
else, if you validate their concerns and if you believe
them, listen to them and believe them, that's actually doing something.
I actually went to this training for a course called The
Healer's Art and it was taught by Dr. Rishi who
is this amazing physician and they
teach you that. And at first I didn't really understand because I started
(37:07):
that training before I opened my clinic. And once I opened my clinic and I realized
even just listening to somebody, like you said, it calms down their nervous system
and it completely changes things. And instead if
they're gaslit, if they go in and the person... either accuses them
directly or just implies that they are making this up
or that they're lazy or crazy or there's something wrong with them or whatever,
(37:30):
that's going to increase their stress and anxiety. And we know that
psychological stress activates mast cells and mast cells release
pro-inflammatory mediators which also increase pain. So
there's truly an actual mechanism whereby stress increases
Yeah, absolutely. Oh my God, I could talk all day. Could talk
all day about it. Okay, moving on though. How
(37:52):
about the myth that if you have these
connective tissue disorders or joint hypermobility matters
that, oh well, no treatment, you just have
Yes, so first of all that makes me crazy because I
hear people say, well, there's no cure. How many things in
(38:15):
medicine can we actually cure? Not that many. So
why would you say let's not bother diagnosing these conditions because
we can't quote-unquote cure them? There's so many things that we can do
to help mitigate symptoms and I have an acronym that I use for
this and I talk about it a lot like in my Substack newsletter and on my Bendy Bodies podcast.
Men's PMMS and the letters stand for Movement, Education, Nutrition,
(38:39):
Sleep, Psychosocial Modalities, Medications and Supplements. And
that just kind of helps me to remember the eight different components of
a person's comprehensive treatment plan. And sometimes they
come back and we're discussing things and I'm trying to figure out, okay, what can
we work on next? And I go through those eight different things and I think, okay,
let's work on this, let's work on that. It's just kind of
(39:01):
a way for me to remember I came up with that
acronym a number of years ago for the
Yes, I would be happy to. So it's MENS, P-M-M-S, and
it stands for Movement, Education, Nutrition, Sleep,
(39:24):
Psychosocial, Modalities, Medications and
That's great. And I love the fact that you
included sleep and nutrition because
the more research that I've done into pain and
you realize, well, wait a second, these are two factors
(39:45):
that we have some pretty decent control over.
And by the way, they can kind of make a
Yeah, and are very much underappreciated. And as a
physical therapist, I want to make sure that I point out, because I think you'll appreciate
this, if you notice in this acronym, there's three M's.
It's very intentional how they're sequenced. The first M is movement,
(40:07):
because that is the most important thing. And then the last M
is medications, because while medications can be helpful, you
can't just give someone a pill and expect them to feel better. You need to
Absolutely. Oh, I love it. OK, so are
there any other common myths that we missed
(40:32):
Boy, I think you hit the really, really big ones. The
last one that I want to point out is some people think that
all hypermobility is EDS. I remember
during the Olympics, people were like, oh, that person has EDS and this person
has EDS. It's like, first of all, you can't tell by watching someone on
TV. What do you mean you can't tell? So
(40:56):
stop diagnosing people that are on TV. I mean, and
it's also really harmful to the community at large because
already there's so much stigma, right? Like there's doctors that are like,
oh, this is the TikTok disease or something like that. And it's like,
we need to be very, very thoughtful of how we use these terms and make sure
that we are getting properly evaluated and following
(41:18):
guidelines and also using common sense though,
because with the 2017 criteria that came out, it starts with
the BITEN score. And while I think the BITEN score is a great tool, if
somebody doesn't have a high enough score on the BITEN, I
still will go on and assess for the other things. I will look for the pyosogenic
papules, I'll look for the arachnodactyly, ask
(41:40):
them, do they have a high narrow arched palate and some of these other, these
other things, because, you know, just because somebody isn't as hypermobile
as they used to be, doesn't mean that they don't potentially have
All excellent points. And now as we start to
wrap up, what are the big takeaways that you
would like the listeners to come away with from our discussion today?
(42:05):
I think the first one would be to look for hypermobility because
it is so important and so many people don't know
that they're hypermobile. And even if they have no problems, it's
still really, really helpful to know that a person has joint
hypermobility because it affects their proprioception or knowing where their body is
in space without looking. It can affect their risk of injury or
(42:26):
their ability to heal from that injury. And a lot of people do
go around doing party tricks and not realizing that they don't hurt
now, which is fine, but they might hurt in the future. And
once they start hurting, they might not be able to get them to stop hurting. So
I think that, you know, the first thing is if you're a physical therapist
listening or, you know, an ordinary person, you
(42:47):
know, think about hypermobility. I can't tell you how many times I've
been out to dinner you know, kind of like a relatively random group
of people. And then you're talking a little bit about what you do. And then they're
like, Oh, you mean like double jointed like this, like this. And next,
next thing we know, we're talking about their health problems, because they're like, Oh, my God,
nobody's ever been able to figure this out. And, and they're like, the
(43:07):
light bulb goes off, they're like shocked, you know, and they're
like, Oh, my God, this is a thing. I've had people literally like sobbing in
tears, because they're like, Yeah, because they're like, I blame myself all
these years. I thought that I was just weak or whatever. So I
think it's just so important for all of us to have this on our radar. So
I think that's the first thing. And the second thing is I'm so,
(43:29):
so passionate about people having access
to resources. Because this whole myth that there's
no treatment, so why bother? It's just so harmful to people. It
doesn't do anything in terms of helping their psychological
state and helping them feel like,
(43:50):
no, I know my body. We're basically saying to them,
you don't know your body. You don't know what's going on in your body. But they do. People
really, really do. They're experts in
their own body. So we should listen to them, validate them,
and offer them resources and, and treatment options.
And then speaking of resources, where can people find you, your
(44:13):
podcast, your website, they want to work with you, whether it be coaching or
finding, grabbing an appointment as a patient, where can they
Sure, so I have two companies and basically like
kind of three main things that I do. So my medical practice is
called HypermobilityMD and that website is hypermobilitymd.com. And
(44:34):
then my podcast is called Bendy Bodies and that website is bendybodiespodcast.com.
And I talk about all things hypermobility and
connective tissue disorders and we had an episode on sleep lipedema,
and all kinds of like related topics, mast cell activation, we talk about
that a lot. And then I also have a sub stack newsletter
(44:57):
that has really been getting a lot of traction lately. And I
love it because you know, if you're doing a social media post, you know, you're
limited to like what 2000 characters or something on Instagram. So
you really just can't say a whole lot, right? But
through these Substack newsletters, you can really share a lot more detailed
information. So I'm really enjoying that a lot. And then the last thing
(45:18):
is the Bendy Bodies coaching that I do. So I started getting
messages from people all over the world that were just so desperate
for help. And it was just really hard because, you
know, I'm not medically licensed in, you know, All
over the world. All over the world, yeah, yeah. I'm medically licensed in
Colorado and Wisconsin and that's it. So
(45:40):
if people come to see me in Colorado or Wisconsin, from
anywhere in the US and actually now recently I've said anywhere
in the world, I do now see international patients. So
if somebody can come see me for that first appointment in person and
establish care as a patient, but then they have to do follow-up, The
(46:00):
sitting in Colorado or Wisconsin, that's the sticking point. So
they have to be sitting in Colorado or Wisconsin. It
could be virtual, but they have to be sitting in those states. So that's the sticking point.
So that's why I started this coaching practice. Through the coaching
practice, I will talk to them. It's a one-on-one. There's
nobody else there. I take a history, I
(46:21):
hear their concerns and then I share with them. It's like I'm writing a
book just for them. I'm writing a journal article just
for them. So I say people with, you know, maybe
they told me that they have itching and rashes and hives and flushing. So people
with itching and rashes and hives and flushing often respond really well
to ketotrophin, which is an antihistamine that is also an
(46:42):
excellent mast cell stabilizer and also very anti-inflammatory. And
this is the subject of a recent Substack newsletter, by the way. It's
one of my favorite medications to prescribe. So through these coaching
sessions, I will share resources with them that are customized to
them, but it's their responsibility, though, also to share these with
their own medical team, because I'm not writing them any prescriptions. I'm
(47:02):
not ordering labs. I can't do that. But I can give them
Amazing. And just so everyone that's listening right
now will have the links to all of those resources in
the show notes. So whatever platform you are listening to
right now, just scroll down a little bit and
you'll get to the show notes and one click will take you
(47:26):
to all of these resources. So, Dr.
Blustein, before we end, last question, it's one I ask everyone,
knowing where you are now in your life and career, what advice would you
I love that question because my
20-year-old self is so different than how I am quite
(47:46):
a few decades later. I think believe
in yourself. I think that'd be the most important piece
of advice because I did get a lot of medical gaslighting along the
way, but that was not as harmful as the gaslighting that
I did to myself. I literally
had a doctor say to me in the doctor's lounge, I looked inside
(48:08):
your knee, there was nothing wrong with your knee. This is like three days after my knee
arthroscopy. I went back to work like literally the very next day,
I'm standing all day. Of course there's inflammation, I just had surgery. And
also, I didn't even think about this at the time. They
can't see inside my bones, inside my ligaments. He's
not looking at it from a microscopic level. I
(48:30):
had a massive bone bruise. I had a nasty fall off a mountain bike and
that bone bruise was there for over a year. Instead
of, yeah. So instead of thinking, well, he's a jerk, you
know, I guess lit myself. And, you know, that was, that
was, that was a dark time for, for me. So I think believing
in yourself is so important and showing yourself compassion and,
(48:55):
you know, really just trying to be loving towards yourself is
And that is great advice. Um, so thank
you so much for coming on. What a wonderful discussion. I
Well, thank you so much for having me. I really enjoyed chatting with you and
I'm so grateful to you for helping get the word out about these
(49:16):
conditions because they affect so many people and, you know,
people are suffering and we need to do whatever we can to help them
and help improve their quality of life. A lot of these people are really, really
young and they have their whole life ahead of them. So we really need
Absolutely. And thank you again. And everyone who's
out there listening, thanks so much for tuning in. Have a great couple
Hey everybody, welcome back to the Healthy, Wealthy, and Smart Podcast. I
am your host, Karen Litze, owner of Karen Litze Physical Therapy
in New York City. And today I'm really excited
to talk about hypermobility disorders. We
did an episode on this last year and I really, so
many people reached out to me to thank me for doing an
(00:25):
episode about hypermobility disorders. So
today I'm thrilled to have Dr. Linda Blustein. She
is a recognized expert in hypermobility disorders and
founder of the medical practice, Hypermobility MD.
She also leads Bendy Bodies, a coaching service
supporting individuals with hypermobility. Dr. Blustein
(00:46):
hosts the bendy bodies with the hypermobility MD podcast,
sharing insights within with the community. She
advocates for hypermobility research serving on
several advisory boards. So Dr. Blustein, welcome
to the podcast. Thank you so much for having me. Like
I said, I got so many emails and
(01:08):
so many positive responses the last time we
did a podcast on this topic. So I'm really excited
to dive in. But before we do that, I would love
for you to tell the audience why you decided to
Yeah, it was kind of decided for me, like with a
(01:30):
lot of us. So I grew up wanting to be a ballet dancer and
started to get more and more health problems. Was able, though,
to finish my medical training residency, worked as
an anesthesiologist for over 20 years in the operating room.
But then I started to get more medical problems again. And somewhere along
the way, I stumbled upon connective tissue disorders. And I started
doing more reading and research. And I thought, wait a minute, this could literally explain
(01:54):
my entire life, which a lot of people come
upon this the exact same way, like, wait a minute, they kind of figure it
out for themselves. And at that point, I
later like, you know, couldn't really work in the operating room anymore. I had bone
grafting surgery in my wrist, and I got CRPS. And it's kind
of one thing led to another. And so I needed to figure out, you know,
(02:14):
what am I going to do now? And I, my youngest
son was gonna be going off to college, I knew that I would be very depressed if
I didn't have something to do. So I thought, well, maybe I
could write about hypermobility disorders. Maybe I
could focus on pain management in hypermobility disorders.
And then one of my colleagues, my mentor, Dr. Pradeep
(02:37):
Chopra, he said, you need to open a clinic. And I was
like, really? And he said, you're an anesthesiologist. You
understand. you know, cardiac physiology, respiratory,
you know, musculoskeletal neurology, like you have a very broad basis
of medical understanding. And there's desperately lots
and lots of people who need help. So you need to do this. So
(03:00):
he talked me into it. And so I ended up opening a
clinic and then starting my first podcast, then
a second podcast, which is currently the bendy bodies podcast. So
yeah, it kind of evolved from there. It was not something that was a
Yeah, like you said, it usually never is, but somehow it
finds you, right? It finds us somehow. Now,
(03:23):
how much information did you get
on hypermobility disorders in
So you have to keep in mind I graduated from medical school in 1990. So
what I can remember was maybe like a sentence or
two. I hope that it's a little bit more now. I would
(03:45):
love for it to be a lot more now, but I know for a fact that it's not. But
I think I literally got a sentence or two about hypermobility disorders
and maybe Marfan's might have been rolled into there, like connective
Right. Right. And I've heard a lot of that
similar description of
(04:06):
how much pain science. Yes. Physician.
So you've kind of been able to combine both of them. Now, as an anesthesiologist, you
might get more than the average. Physician,
Right, right. Because we had to rotate through the pain clinic. So
we all had to do that. And then I
actually did pain medicine. I did like epidurals and
(04:29):
celiac plexus blocks. And I did a variety of procedures like
that when I first finished my residency at my very first
job. But then I went to a practice where
they already had enough people doing the pain clinic. So I worked just
in the OR then for the next 15 plus years. Got
I've had a couple of epidurals myself. Have
(04:51):
you have had a few? Um, okay. So let's
get into now the joint hypermobility disorders.
So why don't we start with some definitions? Sure.
Right. So We've got, of
course it's medicine, right? So we use a lot of abbreviations. So
let's start with HSD, which stands for
(05:14):
hypermobility spectrum disorder. So can
you define what that is and how one might present with
So I definitely can describe that. Can I back it up one
notch though and start with J-H-M? So
J-H-M stands for joint hypermobility. And
(05:35):
that means that a joint or a group of joints has greater
than expected range of motion. And we should be looking at norms
for that age, sex, race, et
cetera, because that does impact how much joint range
of motion is expected. But we should start with that. And
then hypermobility spectrum disorders is when you have joint
(05:56):
hypermobility and you have symptoms that may be related
to your joint hypermobility, but you don't have a
condition, another condition to explain your symptoms. So
you don't have, for example, Down syndrome. A lot of people forget that
people with Down syndrome have joint hypermobility. So
if somebody has that, then you don't diagnose them with another
(06:19):
condition because you have an explanation. So joint hypermobility
is kind of the foundation that I like to think of, even though
joint instability is probably even more important. You're
a physical therapist, you're probably very used to assessing joint instability
and joint hypermobility, but for someone like me who didn't do a physical
(06:39):
therapy type of training program, you know, assessing
for joint hypermobility is easier for us. Learning to
use a goniometer is easier than learning how to assess joint
Right. And actually that goes right into my next question
is how does one, how do you diagnose
(07:00):
what are some valid and
reliable observations
or diagnostic tools that
physicians, physical therapists, et cetera, might
be able to use to help us diagnose some of these,
(07:23):
Right, so the BITEN score is something that probably a lot of
people are very familiar with. I don't like the BITEN score, but it
is unfortunately, you know, very well known. The
nice thing is it's super quick and easy to learn and
memorize and use and apply in the clinic setting. So it's
not a bad thing to assess for, but we should always remember that this is just
(07:43):
one small piece of information. It's not the be all and end all.
So kind of almost regardless of what that number is, you're going to want to
look at other joints. So, so basically, oftentimes we
start with the biting score, which is, you know, can you touch your thumb to your forearm?
Can you bend, you know, when you bend back, when you extend your fifth finger, does it
extend by more than 90 degrees? And for that, you're looking
(08:04):
at, you know, the, the first metacarpal, uh, you're looking
at the fifth finger, um, and you're looking at this angle here.
You're not looking at the tip of the finger, right? So that's an important point. So
those are the first two maneuvers and you're looking at right and left and you get a point
for each maneuver. And then you're looking at elbow hyperextension. Is
it greater than 10 degrees? If it's 10 degrees or less, it's considered
(08:26):
within the normal range. And obviously this is going to vary again by
age and surgeries and arthritis and all kinds of
things like that. And then we look at knee hyperextension. Do
the knees hyperextend by more than 10 degrees? And then the last maneuver
is can you put your hands flat on the floor without bending your knees? So
the first four maneuvers are bilateral, right? And then the last
(08:49):
one is, you know, just one point. So you look to see what that score is,
and then you look at what their age and what the number
is. And then you also want to look to see, you know, what are their other
joints like? Do they have hypermobility and other joints? And I will often ask,
you know, do you have party tricks that you do? And- That's a
good one. Yeah, yeah. So that way I can, I usually
(09:10):
tell them, I usually say, wait, let me get my video camera ready, assuming
that they've signed the consent form for photos and videos. And then I
ask them to do that party trick for me and I videotape it. And I say, okay, now
don't ever do that ever again. And I put
the video on their patient portal so that way they have access to
it. So that way they can show other doctors if they're questioning the
(09:30):
diagnosis, if they're like, no, no, I don't believe you. They don't have to keep doing that
trick over and over and over again. Videotape it, keep
the video, have it labeled in your phone so you can show people, but
you don't have to keep doing it over and over again and having that wear and tear on your
joints. Right, right. So that makes sense. Yeah. So
that's what I like to start with. And then, you know, again, looking at
(09:51):
other joints, whether you know, it's okay, what other joints do you have
either that you can do party tricks with or that they're painful, they
feel loose to you, they feel unstable. and
kind of assess that way. And then also there's another tool that's really helpful
called the five-point questionnaire. So the five-point questionnaire
asks the first two points, just like the BITEN score, you know, can you
(10:12):
now or could you ever touch your thumb to your forearm? Can you now or could you
ever put your palms flat on the floor without bending your knees? And then the last three
questions are, as a child, could you contort your
body into strange shapes or do the splits? And then the
next one is as a child or teenager, did you dislocate your shoulder or
kneecap on more than one occasion? And then the last question is, do
you consider yourself double jointed? So on the five point questionnaire,
(10:36):
if you answer yes to two or more of those questions, it's highly likely
that you have generalized joint hypermobility. So
it's important to distinguish between generalized joint hypermobility and
localized or peripheral joint hypermobility. So
peripheral joint hypermobility is when it's in the hands and
the feet, but not elsewhere. If you have localized joint
(10:59):
hypermobility, you have hypermobility in perhaps like your hips,
maybe you have hip dysplasia or something even to explain that. So
if you have localized joint hypermobility, it's just in a couple of joints. If
you have generalized joint hypermobility, it's in multiple areas
of your body. And if you have historical joint hypermobility, that
means you were hypermobile in the past, but you're not anymore. Oh,
(11:22):
And as the practitioner and
someone, you're taking people through these
questionnaires and observation, what
are you starting to build in your head? I
know that's like a broad question, but can you take
us through your sort of differential diagnosis in
(11:44):
your head that you will then kind of
Yeah, yeah, definitely. There are people who
think that they are hypermobile and they're not. I
mean, that's rare. That's really quite rare. But there's people who suspect
or are worried about that. And not only are they not hypermobile now,
they have like zero on the five point questionnaire and like none of
(12:07):
their joints are hypermobile. I've literally had this happen to like,
you know, a sister of somebody who's a patient of mine and they're like, oh, I'm worried that
this is me too. And it's like, no, you have diffused arthritis
and that's why you're in pain, but you don't have, Ehlers-Danlos,
that's very clear. But anyway, so what I'm looking for is the
triad of things that you see with the Ehlers-Danlos
(12:29):
syndromes. So Ehlers-Danlos syndromes are the most common hereditary
disorder of connective tissue and there are 14 different subtypes and the most
common subtype is the hypermobile type. So what we're looking for there
is does the person have joint hypermobility, Do
they also have changes in their tissues, like their
tissues are weak, maybe they have abdominal hernias, they've
(12:51):
had pelvic organ prolapse and
areas where their tissues are clearly weak. And then also the
other third part is, do they have changes in their skin? So they
might have mildly stretchy skin, they might have soft velvety skin,
they have abnormal scarring where their scars are wider
than you would expect them to be but also thin. So
(13:13):
we're looking for those kinds of things and that's what I'm starting to put together
in my mind is, you know, are these... Does
this person present with mostly musculoskeletal problems? So
maybe they have joint dislocations, subluxations, tendinopathies, you
know, bursitis, joint pain, or
do they have those things and also have, you
(13:33):
know, some of these other signs that we look for with the
Ehlers-Danlos syndromes. And what are the red
flags, if there are any? Oh yeah,
there's definitely red flags. So the vascular form of
EDS is the most life-threatening form. So people
have died of the hypermobile type of EDS, but
(13:54):
it's usually related to like other sequelae. they
end up having a bowel perforation and get septic and
that's something that can happen but it happens less often with
hypermobile EDS than with vascular EDS where the blood
vessels are very, very fragile and that person
can can pass away at a very young age from rupture of
(14:15):
the aorta for example. So we definitely want to be screening for
vascular EDS. There are certain things that we look for like spontaneous
pneumothorax, so that's where air gets between the lung pleura
and the chest wall cavity. So that's something that
we might see. might see dislocated hips at birth, club
foot. Those people tend to have more peripheral joint hypermobility.
(14:39):
So you would see the hypermobility in the hands and the feet. You
see significant bleeding and bruising. So,
you know, a lot of people with hypermobile EDS do have more easy
bruising and maybe a little bit more easy bleeding, but this is like, bleeding,
you know, not just a little bit more bruising
and that kind of thing. There's also some typical or
(15:02):
classic facial features that we might see. So you
see like a thinner nose, very thin lips, sometimes
you see lobeless ears. So those are some of the things
Right. So you're, as your patients in front of you and you're, you
know, doing your whole evaluation, all of this is going into
(15:23):
your mind and you are kind of making this diagnosis.
So how do you speak to the patient about this?
They're coming to you. They know they're a little stretchy, a
little bendy, and I, maybe they're having pain and
they've been having some other things that
maybe they can't explain. Right. I'm sure that comes to you a lot. So
(15:44):
how do you speak to them
Well, the thing is, most of my patients
have already done a lot of research and they are very, very
knowledgeable. They teach me things every single
day. And I'm not just saying that just to be cute or clever. They
(16:07):
really, really do. very, very wise. And
so usually they already know about vascular EDS. They
know about Marfan syndrome. They know about these conditions that are
life-threatening. And oftentimes they're really, really worried
about it. And what's challenging is, you know, I
had a I had a client the other day, somebody that was coaching. I
(16:28):
wasn't seeing them as a patient. But they had done a
genetic test, and they got back a variant of uncertain significance
in a gene that can be related to Louie Dietz, which is another connective
tissue disorder. So they did what all good patients do.
they googled Louis Dietz, right? And they were like looking
to see what are the list of symptoms that are associated with Louis Dietz. And
(16:52):
they went check, check, check, check, check, like they had a
lot of the symptoms, right? But they didn't have the
more specific symptoms. They had a lot of the much
more vague symptoms like joint hypermobility, you
know, the tendinopathies, joint pain, you know, these things that are not very
specific. So that's why some of these really, really specific
(17:12):
like, you know, organ rupture, These
are very, very important findings that you see with the vascular form
of EDS. So usually when I
have patients that are worried about vascular EDS I'm already looking for
these things and I'm listening for these
very, very serious... medical
(17:33):
problems that they likely have already had. And
if I'm not hearing any of those things, you know, a lot of times they still want
genetic testing to be done, but I usually try to
explain to them that, you know, you don't have anything that
worries me about vascular EDS. I feel very confident that
you don't have one of the more rare types either, which, you
(17:54):
know, those have their own very specific findings. And
that's where it's tricky because the hypermobile type is probably fairly
common. The classical and vascular types are the next most common,
but then the rest of the subtypes are actually quite rare.
So most of the people that I see have either hypermobile EDS
Yeah. And this may be a
(18:17):
silly question, but I'm going to ask it anyway. Are
all of these, all of the things that we're talking about, joint hypermobility and
various forms of EDS, are they all
That is not a silly question at all. At first
I think the teaching or the thinking was that hypermobility spectrum
(18:40):
disorders was maybe, you know, people were hypermobile, we weren't
really considering those connective tissue disorders, but then I noticed a
shift in the way like the Ehlers-Danlos Society was speaking
about these conditions and I literally sent Dr. Hakeem, who
is their medical director, I sent him an email and I said, I'm
confused because I thought that we were thinking that HSD
(19:01):
was more like a musculoskeletal condition and not a
disorder of connective tissue. And he wrote back
and he said, no, we're kind of considering it still under the umbrella of
connective tissue, but not necessarily like a hereditary disorder of
connective tissue, like Marfan's, Louis Dietz, and EDS.
Got it, got it. And when we're talking
(19:24):
about connective tissue, Would you mind
listing what the body's connective tissues are
just so that people who are watching that maybe they aren't in
Sure, so connective tissue connects everything to
everything else. We actually only have four types of tissue
(19:47):
in the body, believe it or not. So we have connective tissue everywhere.
So it's, you know, our tendons, our ligaments, you
know, it's in the walls of our intestines, you know,
our skin. I mean, it's everywhere. And really, The
other way to think of it is it's our extracellular matrix. We
used to think that these were, quote-unquote, collagen disorders, but now
(20:09):
we know that it's not simply collagen. It can
be anything involved in the extracellular matrix. So
Which is a lot, right? Which is a lot, yeah. So to your point,
under that umbrella are some of these joint hypermobility and
EDS, but it might also be like rheumatoid arthritis
(20:32):
or maybe lupus or scleroderma, right?
Which is, I guess we would say the opposite maybe on
the opposite end of the spectrum as hypermobility.
Actually, because it's the connective tissue, your joints can
(20:53):
actually still be hypermobile, but
Yeah. I'm not sure about that combination, but those are, those
are what you just listed. Those are all acquired connective tissue disorders, right?
So that's the, that's the significant difference. And those are autoimmune conditions,
but we now think that the immune system is probably very
(21:16):
important in the hypermobile form of EDS and
that's why we've had so much difficulty finding a gene or a group
of genes responsible for this phenotype. Phenotype
meaning clinical picture. And speaking of phenotype, there
was a fascinating study that was done recently that looked at, I
believe it was It was psoriatic
(21:37):
arthritis, rheumatoid arthritis, I
think it was maybe classical EDS, hypermobile EDS and
HSD and maybe one or other category of
patient. And they did like western blot analysis and
they actually found that the fingerprint... Yeah,
basically the chemical marker for hypermobile EDS
(21:59):
and HSD in these groups of patients were
basically the same. So for these other conditions they
looked different, but people that had been labeled as having hypermobile EDS
and those that had been labeled as having HSD had a very, very
similar set of markers. So it's
very, very possible that we're making this very, very artificial distinction,
(22:22):
but they're not actually different conditions. And of course in medicine this
is what we do, right? We look for patterns, we make up names, we
pick criteria for that condition and then we change our mind a few years later and
we change up the criteria and then it takes a bunch of years for
everyone to get caught up. So it's not like we...
had some higher power that told us this is what these things are. We
(22:44):
humans are trying to sort all this out. Sure, sure.
And with improved research comes
different thoughts and outcomes and things like that. Now,
what is the research like around these disorders? I
mean, is there a lot of money pouring in
(23:05):
to have better research? Like what is the status?
Well, let me first tell you what I think is a pretty funny story.
I was writing an article on the perioperative care of
EDS with my mentor, Dr. Pradeep Chopra, and I'm
an idealist. I had these fantasies, this is going to be in the New England
(23:25):
Journal of Medicine, like this is going to be this amazing paper, because
I'm thinking back to when I was working as an anesthesiologist and how little
I knew about these conditions and how important they are. When
you're positioning somebody for surgery, if they have a connective tissue disorder,
You're much more likely to have a nerve entrapment or nerve compression
and have some kind of post-op complication. You're much more likely to
(23:47):
sublux or dislocate a joint. You're much more likely to have
a problem with instability of the cervical spine, so you need to
be much more careful when you're doing intubations. And after you
put somebody to sleep, like their jaw is going to be looser and
all of these problems that are really, really significant.
So I'm thinking, this is going to be huge. Like, you know,
(24:07):
everyone's going to want a piece of this. Oh my gosh, I was so wrong. We
could not get it published in like the smaller journals and
we ultimately did get it published, but it took It
took a lot of attempts on his part of
submitting it to different journals. And ultimately, we had to pay to get it published, which
I used to think that if you had to pay to get your article published, it was junk. But
(24:29):
now having gone through this process myself and knowing that he and I were very,
very diligent about our research and everything, No,
that's absolutely not the case. Anyway, that was a small digression, I apologize. But
it's that we don't have the kind of funding that
we need to have, especially because these conditions affect a
lot of young people and deprive them of many, many years
(24:51):
of productivity. And especially now with COVID, like we need
people in the workforce. I mean, this is a practical public
health concern. And so we really should be dedicating
a lot more research dollars to these conditions, especially because when
you consider hypermobile EDS, HSD, mast
cell activation, POTS, which is one form of dysautonomia or
(25:13):
dysfunction of the autonomic nervous system, and long
COVID, ME, CFS, like you're talking a
huge percentage of people that if you can get them functioning better,
like they can actually have a much better quality
of life and contribute to society. Whereas if we don't take
care of these people, what are they going to do? They're going to be on disability, they
(25:34):
won't be able to take care of themselves, they're going to have mental health problems. I
mean, it's just a huge, huge problem. So while
we are making some progress with research, we desperately
need more funding for research when it comes to these
Yeah. Yeah. And speaking
of, well, can I just digress? Do you mind if I digress for
(25:58):
Because you had mentioned POTS and I feel like people,
that is another one of those diagnoses that Not
many people are very, um,
what's the word? Uh, like, well, yeah,
well versed, knowledgeable, and it can sometimes take
(26:19):
many years or for that to be diagnosed. So
before we go on and talk about myth busting, would you
mind just giving a little, like a quick definition on pots and
Yeah, absolutely. POTS stands for postural orthostatic tachycardia syndrome.
And basically what that means is when you go from laying down to sitting
(26:42):
up or sitting up to standing, that your heart rate increases
quite dramatically and you have inadequate blood flow generally to
the brain. It's not a blood pressure problem, it's a heart rate problem. If
you stand up and your blood pressure drops, that's orthostatic hypotension and
yes, you would normally get a little bit of rebound tachycardia. but this is
a heart rate problem and we believe that it's probably a final
(27:04):
common pathway, that there's multiple different ways that you can get POTS.
Some cases it's definitely immune-mediated, so a
lot of people who have POTS get an infection, could
be COVID, And after they get the infection, whether it's
influenza A, B, COVID, whatever it might be,
they never recover. And their vasculature and
(27:26):
their neurologic system doesn't
recover sufficiently to be able to give enough blood
flow back up to the brain. So there's
been lots of studies looking at cerebral blood flow in these patients and
it is definitely diminished. You don't have to faint in
order to have POTS, that's a very, very important distinction. And
(27:46):
the cutoff is 30 beats per minute for adults and
40 beats per minute if you're age 19 or younger. Like
I said earlier though, we came up with these numbers. It's not like
some higher power said it's going to be 30 and 40. we
just made those up. So if someone has a heart rate that
goes up by 29 beats per minute and it's sustained, and
(28:09):
you have to have the symptoms for at least three months by the way, so this is not just,
you know, I didn't drink enough fluid one day, I stand up and I'm dizzy, you
know, this is sustained symptoms going on for several months. And
there's other associated symptoms with this, it's not just a
heart rate phenomenon, it is a systemic disorder just
like EDS and HSD are systemic disorders. Things
(28:31):
like temperature intolerance, you see gastrointestinal problems,
like gastroparesis or slow gastric emptying is very, very common. It
affects your ability to sweat and
things like that. So your autonomic nervous system is responsible for
all the things that we don't normally think about. And if your autonomic
(28:54):
Then you have to, you got a lot of things to think about. Yes.
When it's not working. Well, thank you for that because I have
close friends whose children were diagnosed with POTS after
years. Yes. Years. And
I know it can be so frustrating. So thank you for shedding some
(29:15):
light on that. Okay, let's get into some common
misconceptions. And the first one, I just, I
love it so much. So when
we think about people's joint hypermobility issues or
matters, we always think every, that's a
perfect person to be a ballerina. Like all dancers
(29:39):
have this, right? So do those two go hand in
Yeah, and actually I've been seeing more and more lately people saying,
oh, they're so hypermobile and talented, like as
if the hypermobility just automatically means that they're talented. And
if they're not hypermobile, then they must not be talented. Like, how does
that work? Yeah, hypermobility does not equal
(30:01):
talent. But anyway, so yes, a lot of
dancers are hypermobile, especially if you look at certain groups. So
if you look at elite ballet dancers, the percentage
of elite ballet dancers that are hypermobile is very, very high,
like 90 plus percent in some studies. If you look
at contemporary dancers, modern dancers, hip hop, other
(30:22):
forms of dance, it's maybe going to be a little bit less, but it is
still going to be fairly high. Well, why is that? Is
it because it makes them hypermobile or is it because they're
drawn to those forms of dance because of their hypermobility? And
I think it's probably... It's probably more the latter. You
can succeed at something like ballet if you are hypermobile because
you can achieve those gorgeous aesthetic lines. You have
(30:45):
the banana foot and this gorgeous
S-shaped leg that you can achieve these gorgeous lines
with. So I think that it's mostly that, but there
is also forced hypermobility. So a lot of dancers are
doing things like the over splits. They're putting their
foot like on block, like a yoga block. And
(31:07):
then they have somebody push down on their knee to try to force
them into that over split and that creates tremendous strain
on the back of the knee, it's terrible. Terrible, terrible thing to
do. So forced hypermobility is a term that I
first heard from my Bendy Bodies podcast co-host,
especially for the first few seasons, Jennifer Milner, who is a
(31:28):
Pilates instructor and former professional ballet dancer.
And she was like, these people are forcing themselves into hypermobility.
That is just terrible. Okay. So
that's one common misconception. How about that?
If you have symptomatic joint hypermobility, that
(31:58):
Yeah, that's a really, really common one. And it's so frustrating because, you
know, we're kind of taught in medical school that
if somebody comes in and they have complaints in every bodily system
or they have more than, you know, five complaints or whatever it might be,
that they must be, you know, making it up, it's in
their head. you know, they're being melodramatic or
(32:19):
something like that. And so we're not taught to look for things
that could explain symptoms in multiple different bodily systems, yet
these conditions do exist. And if you think about connective tissue, it makes sense.
It's everywhere in the body. So it's going to affect our
blood vessels and our digestive tract. And the
ability to do various different things in
(32:41):
our life, like fatigue is a huge, huge problem for people. And
it makes sense if you think about it. Number one, a lot of people have POTS
or another form of dysautonomia, which does often come with
fatigue. And they're having to work so much harder to
have their joints cooperating and get their muscles to
activate properly. And we also think that there's probably,
(33:02):
at least in some people, secondary mitochondrial
dysfunction that happens because a lot of us develop kinesiophobia. I
know I sure did. So once you hurt yourself
doing a lot of like really simple things, then you're afraid to move. And
some people unfortunately move less and less and less, and
therefore then they start to get some secondary problems related
(33:25):
Right, right. I don't even think about the kinesiophobia, but
Yeah. When I first saw that term kinesiophobia, I was writing my
first paper about pain management in joint hypermobility.
When I first saw that term kinesiophobia, I was like, oh my gosh, I
have kinesiophobia. Then I read about pain catastrophization. I'm
(33:50):
Yeah. Yeah, yeah, yeah. And they often go hand in hand, you
You were like, well, if I do this and this is going to happen and this is going to happen, I'm
going to be in so much pain and I'm not going to be able to go to work and then I'm going to lose my
job and then I'm going to be homeless and... Yep. Typical
pain catastrophization. Yep. I'm really good at that.
Or I should say I was really good at that. Yeah. That's yeah. That's better.
(34:14):
Okay. So it doesn't only affect the joints. Like you
said, it's that connective tissue is everywhere. How
about it's not painful. You're just really bendy.
Yeah, yeah. Unfortunately, I still
see notes from colleagues that say that this person has,
you know, quote, benign joint hypermobility syndrome. And
(34:37):
it's like, I mean, I know if you want to say benign versus cancer, okay, I
get that part. But, you know, there's nothing benign about these
conditions. If you have symptomatic joint hypermobility, you
probably have quite a bit of pain. And a lot of people are
used to being in a lot of pain all the time. So they kind
of, you know, it's funny because we kind of get sensitized to it at the same time
(34:58):
that we learn to just push it in the background. So I feel like, you know, quote unquote,
normal people, you know, have more of a pain switch where
they're either in pain or they're not, whereas we're just kind of
used to like having pain most all the time. But
that also then can often cause allodynia and
hyperalgesia, which is where things that are normally not painful cause
(35:19):
pain or things that are normally only slightly painful, cause more pain.
Yeah. And these are the people that I see quite
a bit of because I work with a lot of people with chronic pain. So
I'm seeing those people with allodynia and hypersensitivity and
trying to explain to them like what that means. And
I do find that when you find as
(35:40):
the patient, when you find the person that can help
explain things, like I'm sure you do, it does
turn the dial down. And so maybe they will
have less pain like Laura Mermosley and David Butler. I'm
So that's what they talk about in their sims and dims. So
(36:02):
you're danger me and your safety in me. So going to a doctor could
be a danger if it's a doctor like, Oh, it's just, you're
fine. You know, it's all in your head. Just go exercise. Or
they can go to someone like you, where you'll explain. And then, then
it becomes a SIM or a safety in me and can actually turn
the dial down. So, you know, it's, It
(36:24):
makes such a huge difference to educate your
patient and to help them when things are
Yeah. And I try to really enforce and
reinforce what I should say. with my colleagues that
you don't have to become an expert in these conditions. Of course, it would be great if
you do, right? But if nothing
(36:46):
else, if you validate their concerns and if you believe
them, listen to them and believe them, that's actually doing something.
I actually went to this training for a course called The
Healer's Art and it was taught by Dr. Rishi who
is this amazing physician and they
teach you that. And at first I didn't really understand because I started
(37:07):
that training before I opened my clinic. And once I opened my clinic and I realized
even just listening to somebody, like you said, it calms down their nervous system
and it completely changes things. And instead if
they're gaslit, if they go in and the person... either accuses them
directly or just implies that they are making this up
or that they're lazy or crazy or there's something wrong with them or whatever,
(37:30):
that's going to increase their stress and anxiety. And we know that
psychological stress activates mast cells and mast cells release
pro-inflammatory mediators which also increase pain. So
there's truly an actual mechanism whereby stress increases
Yeah, absolutely. Oh my God, I could talk all day. Could talk
all day about it. Okay, moving on though. How
(37:52):
about the myth that if you have these
connective tissue disorders or joint hypermobility matters
that, oh well, no treatment, you just have
Yes, so first of all that makes me crazy because I
hear people say, well, there's no cure. How many things in
(38:15):
medicine can we actually cure? Not that many. So
why would you say let's not bother diagnosing these conditions because
we can't quote-unquote cure them? There's so many things that we can do
to help mitigate symptoms and I have an acronym that I use for
this and I talk about it a lot like in my Substack newsletter and on my Bendy Bodies podcast.
Men's PMMS and the letters stand for Movement, Education, Nutrition,
(38:39):
Sleep, Psychosocial Modalities, Medications and Supplements. And
that just kind of helps me to remember the eight different components of
a person's comprehensive treatment plan. And sometimes they
come back and we're discussing things and I'm trying to figure out, okay, what can
we work on next? And I go through those eight different things and I think, okay,
let's work on this, let's work on that. It's just kind of
(39:01):
a way for me to remember I came up with that
acronym a number of years ago for the
Yes, I would be happy to. So it's MENS, P-M-M-S, and
it stands for Movement, Education, Nutrition, Sleep,
(39:24):
Psychosocial, Modalities, Medications and
That's great. And I love the fact that you
included sleep and nutrition because
the more research that I've done into pain and
you realize, well, wait a second, these are two factors
(39:45):
that we have some pretty decent control over.
And by the way, they can kind of make a
Yeah, and are very much underappreciated. And as a
physical therapist, I want to make sure that I point out, because I think you'll appreciate
this, if you notice in this acronym, there's three M's.
It's very intentional how they're sequenced. The first M is movement,
(40:07):
because that is the most important thing. And then the last M
is medications, because while medications can be helpful, you
can't just give someone a pill and expect them to feel better. You need to
Absolutely. Oh, I love it. OK, so are
there any other common myths that we missed
(40:32):
Boy, I think you hit the really, really big ones. The
last one that I want to point out is some people think that
all hypermobility is EDS. I remember
during the Olympics, people were like, oh, that person has EDS and this person
has EDS. It's like, first of all, you can't tell by watching someone on
TV. What do you mean you can't tell? So
(40:56):
stop diagnosing people that are on TV. I mean, and
it's also really harmful to the community at large because
already there's so much stigma, right? Like there's doctors that are like,
oh, this is the TikTok disease or something like that. And it's like,
we need to be very, very thoughtful of how we use these terms and make sure
that we are getting properly evaluated and following
(41:18):
guidelines and also using common sense though,
because with the 2017 criteria that came out, it starts with
the BITEN score. And while I think the BITEN score is a great tool, if
somebody doesn't have a high enough score on the BITEN, I
still will go on and assess for the other things. I will look for the pyosogenic
papules, I'll look for the arachnodactyly, ask
(41:40):
them, do they have a high narrow arched palate and some of these other, these
other things, because, you know, just because somebody isn't as hypermobile
as they used to be, doesn't mean that they don't potentially have
All excellent points. And now as we start to
wrap up, what are the big takeaways that you
would like the listeners to come away with from our discussion today?
(42:05):
I think the first one would be to look for hypermobility because
it is so important and so many people don't know
that they're hypermobile. And even if they have no problems, it's
still really, really helpful to know that a person has joint
hypermobility because it affects their proprioception or knowing where their body is
in space without looking. It can affect their risk of injury or
(42:26):
their ability to heal from that injury. And a lot of people do
go around doing party tricks and not realizing that they don't hurt
now, which is fine, but they might hurt in the future. And
once they start hurting, they might not be able to get them to stop hurting. So
I think that, you know, the first thing is if you're a physical therapist
listening or, you know, an ordinary person, you
(42:47):
know, think about hypermobility. I can't tell you how many times I've
been out to dinner you know, kind of like a relatively random group
of people. And then you're talking a little bit about what you do. And then they're
like, Oh, you mean like double jointed like this, like this. And next,
next thing we know, we're talking about their health problems, because they're like, Oh, my God,
nobody's ever been able to figure this out. And, and they're like, the
(43:07):
light bulb goes off, they're like shocked, you know, and they're
like, Oh, my God, this is a thing. I've had people literally like sobbing in
tears, because they're like, Yeah, because they're like, I blame myself all
these years. I thought that I was just weak or whatever. So I
think it's just so important for all of us to have this on our radar. So
I think that's the first thing. And the second thing is I'm so,
(43:29):
so passionate about people having access
to resources. Because this whole myth that there's
no treatment, so why bother? It's just so harmful to people. It
doesn't do anything in terms of helping their psychological
state and helping them feel like,
(43:50):
no, I know my body. We're basically saying to them,
you don't know your body. You don't know what's going on in your body. But they do. People
really, really do. They're experts in
their own body. So we should listen to them, validate them,
and offer them resources and, and treatment options.
And then speaking of resources, where can people find you, your
(44:13):
podcast, your website, they want to work with you, whether it be coaching or
finding, grabbing an appointment as a patient, where can they
Sure, so I have two companies and basically like
kind of three main things that I do. So my medical practice is
called HypermobilityMD and that website is hypermobilitymd.com. And
(44:34):
then my podcast is called Bendy Bodies and that website is bendybodiespodcast.com.
And I talk about all things hypermobility and
connective tissue disorders and we had an episode on sleep lipedema,
and all kinds of like related topics, mast cell activation, we talk about
that a lot. And then I also have a sub stack newsletter
(44:57):
that has really been getting a lot of traction lately. And I
love it because you know, if you're doing a social media post, you know, you're
limited to like what 2000 characters or something on Instagram. So
you really just can't say a whole lot, right? But
through these Substack newsletters, you can really share a lot more detailed
information. So I'm really enjoying that a lot. And then the last thing
(45:18):
is the Bendy Bodies coaching that I do. So I started getting
messages from people all over the world that were just so desperate
for help. And it was just really hard because, you
know, I'm not medically licensed in, you know, All
over the world. All over the world, yeah, yeah. I'm medically licensed in
Colorado and Wisconsin and that's it. So
(45:40):
if people come to see me in Colorado or Wisconsin, from
anywhere in the US and actually now recently I've said anywhere
in the world, I do now see international patients. So
if somebody can come see me for that first appointment in person and
establish care as a patient, but then they have to do follow-up, The
(46:00):
sitting in Colorado or Wisconsin, that's the sticking point. So
they have to be sitting in Colorado or Wisconsin. It
could be virtual, but they have to be sitting in those states. So that's the sticking point.
So that's why I started this coaching practice. Through the coaching
practice, I will talk to them. It's a one-on-one. There's
nobody else there. I take a history, I
(46:21):
hear their concerns and then I share with them. It's like I'm writing a
book just for them. I'm writing a journal article just
for them. So I say people with, you know, maybe
they told me that they have itching and rashes and hives and flushing. So people
with itching and rashes and hives and flushing often respond really well
to ketotrophin, which is an antihistamine that is also an
(46:42):
excellent mast cell stabilizer and also very anti-inflammatory. And
this is the subject of a recent Substack newsletter, by the way. It's
one of my favorite medications to prescribe. So through these coaching
sessions, I will share resources with them that are customized to
them, but it's their responsibility, though, also to share these with
their own medical team, because I'm not writing them any prescriptions. I'm
(47:02):
not ordering labs. I can't do that. But I can give them
Amazing. And just so everyone that's listening right
now will have the links to all of those resources in
the show notes. So whatever platform you are listening to
right now, just scroll down a little bit and
you'll get to the show notes and one click will take you
(47:26):
to all of these resources. So, Dr.
Blustein, before we end, last question, it's one I ask everyone,
knowing where you are now in your life and career, what advice would you
I love that question because my
20-year-old self is so different than how I am quite
(47:46):
a few decades later. I think believe
in yourself. I think that'd be the most important piece
of advice because I did get a lot of medical gaslighting along the
way, but that was not as harmful as the gaslighting that
I did to myself. I literally
had a doctor say to me in the doctor's lounge, I looked inside
(48:08):
your knee, there was nothing wrong with your knee. This is like three days after my knee
arthroscopy. I went back to work like literally the very next day,
I'm standing all day. Of course there's inflammation, I just had surgery. And
also, I didn't even think about this at the time. They
can't see inside my bones, inside my ligaments. He's
not looking at it from a microscopic level. I
(48:30):
had a massive bone bruise. I had a nasty fall off a mountain bike and
that bone bruise was there for over a year. Instead
of, yeah. So instead of thinking, well, he's a jerk, you
know, I guess lit myself. And, you know, that was, that
was, that was a dark time for, for me. So I think believing
in yourself is so important and showing yourself compassion and,
(48:55):
you know, really just trying to be loving towards yourself is
And that is great advice. Um, so thank
you so much for coming on. What a wonderful discussion. I
Well, thank you so much for having me. I really enjoyed chatting with you and
I'm so grateful to you for helping get the word out about these
(49:16):
conditions because they affect so many people and, you know,
people are suffering and we need to do whatever we can to help them
and help improve their quality of life. A lot of these people are really, really
young and they have their whole life ahead of them. So we really need
Absolutely. And thank you again. And everyone who's
out there listening, thanks so much for tuning in. Have a great couple
Popular Podcasts
Stuff You Should Know
If you've ever wanted to know about champagne, satanism, the Stonewall Uprising, chaos theory, LSD, El Nino, true crime and Rosa Parks, then look no further. Josh and Chuck have you covered.
24/7 News: The Latest
The latest news in 4 minutes updated every hour, every day.
Crime Junkie
Does hearing about a true crime case always leave you scouring the internet for the truth behind the story? Dive into your next mystery with Crime Junkie. Every Monday, join your host Ashley Flowers as she unravels all the details of infamous and underreported true crime cases with her best friend Brit Prawat. From cold cases to missing persons and heroes in our community who seek justice, Crime Junkie is your destination for theories and stories you won’t hear anywhere else. Whether you're a seasoned true crime enthusiast or new to the genre, you'll find yourself on the edge of your seat awaiting a new episode every Monday. If you can never get enough true crime... Congratulations, you’ve found your people. Follow to join a community of Crime Junkies! Crime Junkie is presented by audiochuck Media Company.