Hey, I'm hyper mobile and if you're listening to this, I'm
guessing you might be too. And if you're not sure what high
probability even is or hsd or heds, well, you've come to the
right place. Welcome to the help.
I'm hyper mobile podcast. My name is Alex and I'm your
hypermobile host and I'm going to be taking you on a journey.
About all things Piper will be related.
We're talking about everything from diagnostic criteria to the
Baton scale to even just like navigating Life as a
high-profile person dealing with with school or work or dating.
We're going to get to everything eventually and it's going to be
a journey. But speaking of Journeys, let's
start by talking a little bit about mine.
I haven't talked much yet about myself because my body isn't
your body and it's been really important for me to keep the
focus on this community and my patient population and not just
my individual experience. But today, I'm going to share a
little bit about who I am, what I do and how I got to working as
an See a path with hypermobile patients, despite my Canadian
accent. I'm a UK registered osteopath.
My clinic office is in marylebone in London and I
specialize in working with patients, with hsd heds and
other disorders diseases and clinical presentations,
involving hypermobile connective tissue.
I do want to stress. I also work with patients
remotely all over the world. So it's been really interesting
getting to learn about different Medical Systems and different
issues people. Or I should say hypermobile
people face all over the world anyways, at the start of my
career. Her.
I was working primarily with sports injuries and specifically
sports injuries in professional athletes and athletic
individuals. However, I started to notice a
pattern and I was getting more and more referrals to me of
patients who had particularly complex or chronic, or what were
deemed to be treatment-resistant injuries and eventually noticed
that these people seem to have something in common, which was
annexed a degree of hypermobile connective tissue affecting
their presentation. Of course, there are other
reasons why injuries can be complex or Treatment-resistant.
But this was something which started to become a bigger
component of my clinical work in terms of my education because
this does really affect my clinical approach quite a bit
actually because my education is being a bit different than most
osteopaths. I've done to four year
university degrees. My first degree was in Canada at
the University of Western Ontario and it was an English
language and literature degree and my primary area of Interest
was 20th century, British and Irish of lit.
If there are any big. English literature enthusiasts
out there. Unfortunately, my mom was
diagnosed with triple negative breast cancer in the second year
of my degree. This was a huge deal for me, of
course, and it started to affect things like what electives I
chose. So I was debating maybe going
into medicine or Health Care related field and I started to
choose science courses for my electives.
So, for all my UK listeners, I do want to stress the North
American University. Degree system is very different.
You often will have, especially in an undergraduate degree, the
ability to take a wide variety. Courses.
And I just started to choose courses, like, physiology and
biology because I wanted to understand the human body
better. I personally had always had some
weird health issues, and we'll talk more in detail about my
journey and other day because it is a long story.
My health started to decline after my mom died, which was
about four months after my first degree ended.
I was unwell and brokenhearted and I went traveling a little
bit and I eventually ended up moving to the UK around this
time. I had some treatment on a
shoulder injury, he and I had previously, had Physiotherapy
and different types of manual therapy treatment, but I had
found that it had made my symptoms worse, not better.
And it had seemed like a very the whole manual therapy.
Field seemed very pointless to me at that time, which I find
quite funny given that now I am technically a manual therapist.
However, the treatment that I had on my shoulder this time led
to some improvement, it didn't fix it.
But it demonstrated to me that it was in theory, fixable maybe,
but improvable, Certainly. So this started to give me hope
that I maybe didn't have to have shoulder pain all the time and
if you've seen my somebody content on social media, I tell
the story about how I was trying to explain to all the manual
therapist I was seeing at the time that my shoulder felt
quote-unquote. Like homeless.
I didn't know how to say stable or unstable.
So I say, it felt homeless because it didn't feel settled.
Anyways, we'll talk again about hypermobile patients and
language and communication and feelings and other time.
But anyways, I started to realize I could fix some things
that we're going on in my body and I started to try to do that.
As I in conjunction with my osteopathy degrees, it was
really interesting. So, I was learning all of these
things and in my spare time I was trying to find ways to make
myself feel better. I did my osteopathy degree in
the UK. It's technically a master's in
osteopathy, and today, I continue to work as a UK
registered osteopath for my clinic office in London, as well
as online with patients. Now, a lot of people I think
would find it weird for a healthcare worker to have an
English literature degree, or a degree in the Arts.
And I've actually had a few People ask if I regret doing my
first degree but I personally believe it was just as important
as my osteopathy degree because my patients are people.
First and foremost. And what is the study of English
literature? If not a study of people were
looking at the thoughts and ideas and the contemplations of
people over time, I like to joke that my English degree was
theory of people. And my osteopathy degree was
applied people and I do believe that this has contributed to my
holistic. Approach that I take with
patients today, of course, I believe that words.
Matter, I wanted to be an English profit actually for a
while and I believe that stories are powerful and as important as
data collection and rigorous statistical analysis is, if
there's one thing I've learned through my work with patients
and connecting with this community online.
It's that stories have the power to change lives.
And speaking of that, I want all of you to know that you have
truly changed mine. I feel so much less alone, and
so much. Less weird because of you.
And I've learned so much from all of the insightful thoughtful
comments that you take the time to leave.
So I just want to thank you for not only making me feel less
alone but for making me a better clinician and a better human
being. And I truly believe that by
connecting about connective tissue disorders, we can change
lives. Before we get into the topic of
this podcast episode which is going to be everything, I wish
people knew in less than 10 minutes.
I I want to stress that, as I said, just now words matter, and
it's important to be thoughtful about which words we use, and
how we use language, you will notice that I've used the word
hypermobile so far, I want to stress that benign.
Higher permeability is very much.
A thing significant percentage of the population is,
hypermobile to some extent and not all of that percentage has
heds or hsd. The reason that I use the word
hyper Mobile instead of something like suspected /
diagnosed heds. /, H, SD is not only because that would be quite
the mouthful, it's because it's essential, it's key to remember
that. A diagnosis is a privilege.
There are going to be people all over the world who cannot access
a diagnosis. It could be because of monetary
restrictions. It could be because of different
cultural issues. It could be because of their
inability to access even basic Medical Care in some Trees.
Okay. So it's key to remember that a
diagnosis is a privilege and that's why I use the word
hypermobile. However, there are people who
are hypermobile, who do not have heds nhst.
And there are also people who are hypermobile who have another
connective tissue disorder or disease, that is not heds or
hsd. So we're using this term because
it's inclusive. It covers everyone.
But I don't want you to think that just because you have one
mildly hypermobile joints. That means that you necessarily
have A disease or a disorder going on, okay?
And this is why good medical management and appropriate,
medical investigation is so important for all of these
issues. Okay?
And again, I don't think I mentioned this earlier, but I'm
going to mention it now. I'm not a medical doctor.
I'm not a doctor of osteopathy. I'm a UK registered osteopath.
Okay. So as always, if you ever hear
anything on this podcast, which makes you concerned about
anything going on in your body. Please seek out appropriate
medical advice from a trusted qualified, healthcare provider.
Okay. Anyways, continuing on, with the
discussion of language, when it comes to things like gender,
sex, pronouns etc, for the purposes of this podcast, I will
try to be in line with the guidelines from the National
Institute of Health. I'm going to try and put the
link in the show notes. You'll notice, this means, I
occasionally use phrases like all genders or all Sexes, and
that's just me trying to be accurate when it comes to this
stuff. If I ever say anything, where
you feel like I didn't I get it right.
Please do feel free to contact me directly again.
I'll try and put my email in the show notes, but you can find me
online. If you're looking for me on
social media, my my account is the hyperbola helpline or
hyperbole helpline on YouTube Instagram and Tick-Tock.
Anyways what you've come for everything, I wish people knew
in less than 10 minutes so this topic actually was inspired from
a life that I did and I had someone ask me hey if we were
just like doing an elevator Her ride and that is all the time we
had. What would you want to tell me
about hypermobility? Like what would you want to
make? Sure I knew.
This is the answer to that. Is it everything?
No. Because guess what?
I have an episode layout of like 30 episodes lined up at this
point. There's a lot to talk about.
But these are a few things which I think people are not aware of
and I want to make sure that you are aware of them.
Okay, you ready. Let's go Point number one.
Incurable does not mean untreatable.
This is the Most important phrase if there's anything that
I leave any type of like Legacy that I leave about working with
hypermobile patients, it's that just because something is
incurable does not mean it's untreatable and whether that's
finding that treatment, that gives that patient a huge
Improvement or even just a treatment, gives that patient a
1% Improvement. It's essential that we fight for
every single Improvement available when it comes to
quality of life. Because as I said earlier,
patients are people and I want everyone to have the best
quality of life possible. Yeah, but if you take five words
away from this podcast, the phrase of the day is incurable
does not mean untreatable. Okay Point number two because I
get this all the time in the comments on social media, the
Baton scale hate, the Baton scale.
The Baton scale is just a test for generalized joint
hypermobility. It is not a diagnostic
assessment for heds or hsd. It is a tool.
It's a measurement that can be used to control.
Butte to the understanding of a patient's hypermobility, but
that's all it is. It's certainly not perfect and I
would say it's actually potentially a bit flawed and
we'll talk about that more. We will do a whole episode on
the bait and scale but if you're one of those patients and you
spoke with the health care provider and they did a painting
scale and you failed it but you're not feeling well and you
keep seeing my content or you keep, you know, having things
that make you think you might be, hypermobile please remember
that, the bait and scale, is simply one way of looking at
high permeability in a patient and it is no Way diagnostic.
Okay. Now Point number three,
hypermobile connective tissue affects multiple systems
throughout your body, including your gastrointestinal system,
your cardiovascular system, your immune system and your
neurological system and more systems.
It affects almost everything in your body in some way or another
this is because connective tissue as per the name connects
things. And if we look at just a very
simple way of structure like a peripheral nerve, We have heard
of your median nerve, or the very famous sciatic nerve nerves
are connective tissue structures.
Almost as much as their neurological structures.
A peripheral nerve has a wrapping of connective tissue.
So, again, I don't know why we're not talking about
connective tissue and we're seeing patients, who are having
some issues going on with their nerves?
At something that really really we need to talk about more but
always remember that. Hypermobile connective tissue
diseases. Disorders conditions, whatever
they're not just a muscle in Joint thing.
They are multi-systemic thing, which affects unfortunately,
every patient in different ways and this is partly why they are
often missed. Anyways, moving on, you will
hear me talk a lot about scar tissue and inflammation.
This is kind of the lens through which I view.
Most of my clinical rationale. If I'm suggesting a treatment
intervention, it's either to address a change in the tissue,
which I believed to be related to fibrosis, which is the
technical term. Scar tissue or to a disregulated
inflammatory process. And for me, these two
physiological processes are kind of at the root cause of why
hypermobile people are in pain. So anyways, on that note Point
number four is that scar tissue will never disappear.
It's important to understand that scar tissue forms as a
consequence of injury sometimes and that scar tissue is like
gristle in a cheap piece of steak.
It's hard and it behaves mechanically differently to the
surrounding tissue around it and in hypermobile to It's that
surrounding tissue that uninjured tissue that surrounds.
The scar is actually hypermobile tissue.
So we have the very stretchy uninjured tissue and the stiff
injured tissue that stiff scar tissue.
And we'll talk more about mechanisms of re-injury and
chronic injury and other day, but it's the relationship
between that scar tissue and and uninjured tissue, which in my
opinion creates conditions, which allow this chronic injury
to occur. Now, that being said, although
Scar Tissue will never disappear Had magically be reabsorbed by
the body at this point. In time, Scar Tissue can be
improved. We can of scar tissue that is
more functional or less functional.
And we want ideally, especially in hypermobile patients is scar
tissue that can tolerate mechanical loading, without
resulting in a re-injury. But what we want is just to make
those sites of injury function as well as they possibly can.
And again, I promise, I will do episodes explaining my thoughts
and my Approach and how How I achieve that with patients that
I work with. Now Point number six, muscle
mass is the only quote-unquote out that I know of.
So sometimes you will see these patients and you may have come
across like some stories online or you.
Maybe you know, someone who have this magical Improvement and
it's just incredible because they were really unwell and now
they seem to be absolutely fine. And they're like, just going out
and doing everything and have a significantly improved quality
of life. This is because in order to
stabilize a hypermobile joints We have someone with really
hypermobile shoulders to use myself as an example.
You have to help that patient build their own braces.
And by braces, I mean muscle mass muscle mass around a joint
helps to keep it stable. It helps to tighten it up and I
have to say, like I used to feel really self-conscious about my
shoulders, they're pretty big, they're pretty muscular, but you
know what, I think of the pain I had before, I had that muscle
mass and having slender shoulders, and letting my muscle
mass disappear on them is not an option for me.
I Fight to keep my muscle mass. However it isn't easy to build
muscle mass. I have to say, I'm always
surprised at how many patients come to me and tell me that they
were told by their doctor. Oh yeah, just just do strength
training or just build some muscle mass like it like it's
easy. It's not easy for anyone and
it's incredibly hard for hypermobile patients building
muscle mass while avoiding injury when your hypermobile is
so hard. Okay, so if you've had a hard
time with that, I want you to understand That I'm not
surprised, okay? But secondly, I want to stress.
It's also not possible or safe for everyone.
There are some people with some very rare conditions who end up
having life-limiting consequences from their
connective tissue, okay, but there are also some people who
have connective tissue where although it causes them, a lot
of problems, they are able to build muscle mass and to have
significant improvements. So it's all about finding what
every patient is physically able to do and working in supporting
them in that as As much as possible and that's why Fitness
and strength training is something I'm very passionate
about but again I want to stress it's not possible or safe for
everyone and if you're not sure as always speak with your
trusted health care provider. Okay.
And finally, final point heds and hsd affect everyone
differently. The thing is you see a lot of
similarities and that's partly why we have such like a big
Community online because I'll say something, I'll describe
some certain things that I observed in patients and so many
people We'll see that and say, oh my gosh, that's me.
However, when I see these patients in clinic and we're
going through the details of how they're affected and issues
they've struggled with so far or treatment that's worked or
hasn't worked for them. I cannot stress how unique every
patient is my work and I feel so lucky to have the work that I
do, but my work is infinitely interesting.
Because although we have the the same, in my opinion, kind of
underlying physiological processes involving scar tissue
and inflammation, and And the consequences of hypermobile
connective tissue. Every patient is so different
and I describe it to my patients, as it's like being
someone who quite simply has a body where they cannot buy
clothing off the rack, they have to get clothes custom made by a
tailor for hypermobile patients, what they really benefit from.
And unfortunately, it's hard to access these days is bespoke
Medical Care. They benefit from truly
patient-centered, truly individualized care because
their bodies are all just So different and so unique, even
though there are a lot of similarities and this is why I
use the analogy of variations in a theme.
So I'm a classically trained pianist.
I don't know if any of you out there, play piano, but you may
have heard Mozart's Twinkle Twinkle Little Star and I
believe that Mozart actually wrote 12 variations on that
theme, now they all sound very different, but if you play any
one of those variations to someone, they're going to say,
oh, that sounds like Twinkle Twinkle Little Star.
Our and that's how I view my hypermobile patients.
They are same but different and they are variations on a theme.
I hope you found those points helpful.
Of course, it's not everything. I wish people knew we would need
an elevator ride. That's about ten hours long
maybe to cover everything. I wish people knew but those are
just a few points and to give you kind of an idea of some of
the topics we'll be talking about and what you can kind of
expect from help I'm hypermobile.
Now in terms of other Your plans.
I'm so excited to tell you about my a probability HQ private
membership. So, hypermedia HQ is a private
membership community that gives the scientifically minded
hypermobile person a non-judgmental place to share
thoughts, strategies and experiences on how to navigate
life in a hyper mobile body. I compare a lot of my work with
patients to almost being like a compass like just figuring out
how how on Earth do I like like I said navigate life how do I
get through all this stuff? How do I Make progress.
I have this weird thing going on.
Has anyone else ever experienced this?
I'm so excited about this private membership community,
and I'm thrilled to be telling you that it will be launching on
Friday. June 23rd.
There will be regular lives specifically a weekly live where
I'm on for an hour and a half, and we are talking about a
topic, as well as a Q&A. And, of course, there are going
to be different forms, which will be managed, and I will be
sharing some more insight into that on my different social
media profiles. If you want to see what it looks
like, please go there. I want you to know.
Of course, what you're signing up for and to decide if it's
great for you, but I'm just so excited about it because I've
always wanted a place where you can talk about everything and
I'm hoping that this will be it. If you're nervous about Discord,
don't stress. I'm going to be making some
tutorials. It's basically, just, it's, it's
a way to almost make like a library a way to make a meeting.
It's like a meeting place. Has a baby with a library and
it's just all very organized and you can find whatever you're
looking for their, it's also really Cool from an
accessibility perspective because there are ways that we
can talk using voice. So you can like leave voice
notes if that's your thing or if your hands are hurting and you
can't use your hands, I can leave different types of media
content on their live recordings will, of course, be available on
there, for people to view those private lives and I'm so excited
because I will be able to again do a regular Q&A.
I love Q&A but it got a bit overwhelming on my Tick Tock in
particular just because the community, So big on there.
So I'm quite excited to have a private membership Community,
where I will be able to give a little bit more of a focused and
just a more detailed presence to the people who are on there.
So if that's something that interests, you, please, mark,
that in your calendar, sign up, and make sure that you get my
email notification so that you will be able to get that
Founders rate. If that's something that you
really are Keen for. Okay, now, additionally, I want
to encourage you. If you've enjoyed today's
episode to subscribe, download like Share save follow.
Whatever your support is truly so appreciated and I'm so
grateful to have had you with me for this today and finally never
let anyone do your sparkle. I hope you have a good day.
Take care. And we'll catch up next time.