Hey, I'm hyper mobile and if you're listening to this, I'm
guessing you might be too. Hi, my name is Alex and I'm your
hyper mobile host. And today we're talking all
about feelings. Specifically, we're going to be
looking into what does hyper mobility even feel like?
Because I can't tell you how often I have patients come and
see me and be like, I don't know if I'm weird or I don't know if
it's just me, but this is what I'm feeling.
And then they'll go on to give a really thoughtful explanation of
what they're feeling in their bodies.
And this experience, although it is, and it it can be certainly
different from how people with normal connective tissue
describe feeling in their bodies.
There are a lot of consistencies.
And I hear the same things for my hyperbole patients
repeatedly. So I want to share some of those
with you today in case there's anyone out there who's feeling
something weird or feeling alone.
And this might help you make sense.
It might help you not feel alone because that is so, so
important. But to start off the episode,
I'm going to be sharing the story of my shoulder and
specific what I described it as feeling like to the
physiotherapist when I was 16 and how that led to some
confusion and some miscommunication, certainly in
terms of management of that injury for me.
And then finally we are going to be talking a bit about weird
feelings and small fiberneopathy and what how I how I manage
those kind of weird symptoms and how I recommend that patients
manage them as well and communicate them to their
appropriately qualified healthcare providers.
Now before we get started, I do want to thank everyone who's
taken the time to leave review. 33 of you so far have done that
and I am so grateful for that. I'm I'm so touched and to see
all the positive feedback to everyone who's taken the time to
e-mail in it really has meant a lot to me.
And thank you to everyone who's been so understanding.
With the kind of recent hiatus that we've taken from posting
the show regularly, we had some audio issues which luckily have
now been resolved and I hope that you can hear the smooth,
smooth, buttery and mellow quality of the audio in your
ears today. Or if you're watching this
visually, we now have video as well.
And I'm so happy that we are able to expand the presence of
this podcast onto a video format because I know for accessibility
issues that does help as well. Now, today's podcast episode is
brought to you by kid and energy, so if you do hear some
noises in the background, that noise is my Kitty cats.
That's Cleopatra and Ranger and they might be running around and
making some background noise, but we will try to keep it to a
minimum to get started. My shoulder injury when I was
16, so my shoulders have always been my most hyper mobile
joints. They are what caused me the most
grief. I'm pleased to say they don't
cause me any issues at this point any longer.
However, when I was 16 I was in agony.
I was having pain doing weird things that didn't make sense.
So my main complaints to the physio at at the time were that
I would have pain when running, so that really aggravated my
shoulder injuries. I would have pain if I was like
skipping rope. Anything that jostled my
shoulders hurt. I had pain sitting on a spin
bike. I would go and do spinning
classes with my mom and I would get a lot of pain in my
shoulders, especially if I didn't change position
routinely. I would also have pain sleeping
at night. And of course when the physio
was testing my shoulder, I wouldn't have pain really on a
lot of those movement tests. Except of course raising my arm
above 90 degrees was what hurt me.
Long story short, the physio was trying to get to the bottom of
it and I remember that she would ask me like what does it feel
like? What are you feeling?
Is it painful? And I insisted no, it's not
pain, it doesn't feel like pain. And she was just very confused.
And again, like some of this is understandable and hopefully the
entire medical and healthcare industry will continue to
develop a will continue. Maybe that's not the right word,
but we'll develop a better understanding of different
experiences because we all have different experiences.
But she didn't really know what to do with the fact that I
wasn't saying I felt pain. So I would go on to say, you
know, my shoulder, here's how it feels.
And and this was the phrase I used and this is what's stuck in
my head and what I mentioned in a very popular TikTok video
about a year ago, I was like my shoulder, it feels homeless.
It feels like it doesn't have a home.
That confused her very much because she was like, does it
feel unstable? Does it feel like it's going to
dislocate? And I said no, it just feels
homeless. So obviously that didn't lead to
a good outcome. But that was the phrase that I
used. And that was a phrase which
online seemed to help a lot of people kind of recognize what
they were feeling in their joints.
Because when all that you've known it, your whole life is
hyper mobile connective tissue because this is something that
people who have HEDS&HSD are born with it.
It's not something that you develop, it's a genetic
condition. So when you you have that you
feel things differently and if all that you know is your normal
and that's what you felt your whole life, you're not going to
really be saying oh, like it feels unstable because you don't
know what's stable, feels like. So I think that's why that.
I think that's why I was using that phrase.
It feels homeless and it's weird for me.
Now I'm someone, if you're watching the video you'll see my
shoulder muscles. I'm someone who luckily was able
to build up quite a bit of shoulder musculature and my
shoulders. Now if I had to describe how
they feel, they feel like they have a little muscly home.
They feel secure. But at the time, saying that my
shoulder felt homeless and saying that I wasn't in pain,
that was the best I could do. And I wish that I'd had a
healthcare provider who was able to take that information and
interpret it a little bit and work with it instead of kind of
me just like doing my job as the patient.
I was explaining what I felt. She asked me what I felt.
I said what I felt, but unfortunately obviously I was
hitting a wall and that's something that happens with
patients all the time. They'll be asked what are you
feeling and they will say words which result in them just
hitting a an impasse where they're not saying the right
things and that's messing up the the whole process in terms of
investigation and appropriate medical management.
And this is a huge issue for the hyper mobile population.
So if we go to talking a bit about what I see in clinic and
what I hear from patients in clinic.
So now I'm going to share a funny story and it's actually
happened, I think it was about four months ago when I was in
clinic and I have three patients come in on one day and say the
same thing. And these patients are not
relatives, they're not friends as far as I'm aware.
And I don't think they've ever spoken to each other outside of
clinic. But it was so uncanny how they
all said the exact same thing. So I start off most of my
appointments saying, you know, how are you feeling today
because that's really, really important with hyper mobile
patients. It's important for everyone.
But I want to know how the patient's feeling today right
here, right now and how they felt since I've seen them, both
the good and the bad. So the patients came in the
first patient and I said, how are you feeling today?
And that patient said, I feel like an alien.
I was like, OK And. And what does tell me more?
That's usually I'll say tell me more.
Actually, it's usually the phrase I go with because I just,
I want to give that person space to tell me more about what
they're feeling. I think that giving people space
is so important in a medical context so that they can
literally present to you what their experience is because that
helps me as a clinician. So I said tell me more.
And then that patient went on to explain, you know, I'm feeling
this in my neck or I'm feeling this in my shoulder.
I'm feeling this today. And This is why, you know, I
feel confused about this. And.
And they gave that explanation. And that was, you know, that
appointment was that the next patient came in and I again
said, how are you feeling today? And they said, I feel like an
alien. And I said, you know what?
That's so weird. You're not the first person to
say that today. And then we went on, you know,
did the same thing. Tell me more.
And they explained to me more about what they were feeling.
And then the third patient came in, of course it was the same
thing. How are you feeling today?
I feel like an alien. And I was like, this is, this is
very strange. But it really emphasized to me
the different lived experience of living in a hyper mobile body
and something that I get a lot of positive feedback on or the
analogies that I use to describe what hyper mobility feels like.
So I describe it as being built differently.
It's literally a different build.
Connective tissue is such an integral part of every system in
the human body. Your neurological system, your
digestive system, your cardiovascular system, your
muscles and joints. It is everywhere, and not only
is it everywhere, it runs between systems.
It's so pervasive and I think of hyper mobile individuals as
almost being like a different build in a video game.
And again, I'm not saying this in any way that that we are not
the same in terms of like being human, Of course we are.
But there is a different experience that giving that
having hyper mobile connective tissue gives you.
These are people who do literally, in my opinion, both
emotionally and physically feel things differently.
And it makes sense when you look at some of the science behind
it, which we'll talk about in a few minutes.
But I I think of being a different character are building
a video game and I don't know if this is going to make me seem
really nerdy. I don't know if any of you ever
play ever play games like Skyrim or I don't know different
different RPG type games. But I think of being hyper
mobile as a character build in a video game where you are,
unfortunately you're a bit less sturdy, so you take damage a bit
more differently. However, it's still playable in
a lot of situations, You just have to find the right way to
navigate the game. You have to make sure that
you're that really strategic player.
You have to make sure that you meet the right people along your
journey and you have to make sure that you're able to kind of
level up your character appropriately and identify any
issues which are going to come your way.
Now if that's too nerdy, here's another analogy.
I think of hyper mobile people like they are Goldilocks.
So in Goldilocks and the three Bears, of course Goldilocks is
the young girl who's going to the Bears cottage to have some
porridge. And the first bowl of porridge
is too hot, the second one is too cold and the third one is
just right. And this is part of my
frustration in terms of some of the research to be entirely
honest, that's done for this hyper mobile population is that
I think that a lot of the standard treatment interventions
in terms of manual therapy and and different things like that,
they work. But they work when they're done
correctly and done precisely. And it really stresses me in my
clinical work because the the line between the correct amount
of treatment and overtreatment is so fine.
It's like you're cooking a steak or whatever.
I'd pick something that's very precise to cook broccoli,
Broccoli. I'm always making mushy broccoli
by accident, but that that's me overcooking the broccoli, right?
So you have to be so careful in your timing and in your dosage
and in your clinical decision making to make sure that not
only are you giving that patient the correct treatment
intervention, but are you giving them the correct treatment
intervention in the correct dose for them on that day.
And it changes and that variability is hard to deal
with. It's stressful and it makes the
work really, really challenging. But I think of all my patients
like Goldilocks because that helps, it helps me to understand
them and I think sometimes when I share that analogy with them,
it helps them to understand themselves.
Moving on, I will also think of patients like they are hyper
mobile people. You know, this whole community,
I think of us like we are luxury sports cars.
So I don't know much about cars, but I know if you have like a
very, very fancy car, you can't just drive it off road.
You have to get it special gasoline.
You have to have like, special maintenance for it.
You have to have it driven by someone who knows how to drive
it. And I think that like we are all
born into a body. And so many people, especially
those with normal connective tissue, they just do what they
want. They go out, they drink, they
like, you know, they, they work that 9:00 to 5:00 and they play,
they work hard and they play harder and they're able to do
all this stuff. And for people, most people, if
not all people who have hypermobile connective tissue
and who specifically have HSD and Hdds, you have to be
strategic in how you do things. You if you do a little bit too
much of anything, you get punished much more harshly.
You know that if you drive that fancy Italian sports car off
road, it's going to fall apart. It has to be driven on the the
right racetrack with the right setup and the right gasoline by
the right driver in the right weather and that's kind of what
being hyper mobile is like in my opinion.
So again, it's these are not necessarily like delicate
people. I think there's this idea that,
you know, these are patients where if you breathe too heavily
near them, they'll break. And and that's not true at all.
These are some of like this toughest patients I've ever seen
in terms of pain tolerance and in terms of what they deal with.
Like these people are tough, but they need to be treated in the
way which is right for them and their unique hyper mobile body.
And that again, takes a specific kind of understanding.
And This is why I am so grateful for things like my online
membership, hyperbole, HQ, Discord, where people are able
to kind of come together and talk about this stuff because it
helps people realize they're they're not being high
maintenance, they're not being demanding, they are just a bit
different. And that's OK.
Moving on. The final analogy I want to
focus on is that being hyper mobile is like walking on a
tightrope, except your tightrope is so much narrower than
everyone else's. So the people with normal
connective tissue, maybe their tight rope isn't even a rope,
maybe it's like a 30 centimeter wide plank.
But the hyper mobile people, they're getting like a 1
centimeter wide rope above like a 50 meter Canyon filled with
crocodiles at the bottom. It is really stressful and
really challenging because typically hyperbole, people know
that if they do too much of something and what too much is
and what the something is can vary day-to-day.
But if they do too much of something, they are going to get
disproportionately punished. And it's not fair and it's hard.
And it means that these patients do need to be a bit more
thoughtful and how they care for themselves and what they do, and
they need to be better at listening to their bodies, which
is hard, and we'll get into that in a second.
But it's you, you pay a higher price for making a mistake and
it's challenging. And I think it's also hard and
for the medical system as well to understand that these people,
you have to be really, really careful with these patients
because if you make the wrong clinical decision, there's going
to be potentially bigger consequences for that.
And of course we have problems with these patients being
unidentified and and not knowing themselves and so on, but the
idea of having a tightrope and having to walk it, that's
something which at least helps me understand my hyper mobile
body and how I navigate my daytoday life.
So I hope you found those analogies helpful.
I think sometimes that having a lens through which to view a
lived experience can be a really, really useful tool
because it just helps you to make sense of things.
And hopefully it helps you to feel at home in in your hyper
mobile body. Because that feeling of not
being at home of everything, feeling just out of place, it's
it's confusing and it's bewildering and it's
unbelievably stressful and and of course it's anxiety inducing
because how could anyone not be anxious when things feel so
weird and no one is helping you understand why and you feel
alone. So anyways, I hope that that
helps some of this all makes sense to you.
If I missed an analogy, let me know.
Send me in some feedback. Maybe do a post on a video if I
post from this, comment below if you're watching this video
online. But I I love, I love analogies
because I think that they help people understand what's going
on in their body. Now finally today we are also
going to talk about weird feelings.
And by weird feelings I'll use an example.
So have you ever just felt like you've like, poured acid on a
random part of your forearm? That doesn't make sense and you
haven't. And and it's fine.
There's nothing visible there. But it feels weird.
Well, that happened to me a few months ago.
So if we go back again, like, I don't know, two months or
something like that. There was a day, for example,
where it felt like I poured acid on my forearm.
And so I I looked at, I stopped, you know, I pulled my sleeve up.
It was still kind of cold in the UK.
And I pulled my sleeve up and I looked at my forearm and I was
like, what did I do? What's going on there?
But there's nothing there luckily because I understand
small fiber neuropathy and we'll explain that in a second.
I was like, oh, it's probably just my nerves being weird,
whatever. And of course we'll talk a bit
about correct clinical management and correct
monitoring of that from a patient perspective in a second
because we do want to keep an eye on symptoms in the body.
The hyper mobile bodies get weird sometimes and small fiber
neuropathy is one of those ways. Now small fibers are part of
your nervous system and they specifically contribute to the
sensation of pain and of temperature and a couple other
things. But the main things are pain and
temperature and it's very common for hyper mobile patients to
experience small fiber neuropathy.
It is a common feature in this patient population.
What I find in my clinical work is that unlike with patients for
example who are diabetic and they'll experience small fiber
neuropathy, but they'll have it typically in kind of a pattern.
So it might be in like their hands or their feet or it'll
it'll present in a way that it makes sense in terms of what we
know about about nerves and how small fibrinopathy affects them.
What I find very interesting in hypermobile patients is that
they will get this like seemingly random small
fiberneuropathy. So it'll be like a transient
little presentation on a patch of skin, which doesn't make
sense from a dermatomal perspective.
So it doesn't make sense in terms of like a pattern that we
can use to understand why the nerves are being affected.
It'll just be like the most weird little presentation.
It'll typically last for a few hours or a day and it'll go
away. And this happens in my opinion,
simply because the small fibers, just like all the rest of the
peripheral nervous system, they have a connective tissue
component to them. So unlike large fibers which
have a myelin sheath which is a different structure, the small
fibers have a connective tissue. They still have a connective
tissue wrapping just like the rest of the nervous system.
And my hypothesis is that in hyper mobile people, sometimes
that connective tissue sheath can be disturbed or irritated in
such a way that the nerve starts to kind of misfire and send
weird signals. And that's why we see that that
strange nervy presentation occasionally and typically it
will resolve. Now quick note, if you're
someone at home who's experiencing that, it's really
important that you clock it. So I recommend that patients,
they make a note of it, they've had this there, you know,
record, make a mental note or write it down or tell a friend,
tell your medical doctor, whatever.
And then if it doesn't go away or if it gets worse, of course
at that point then investigations need to be done.
But very, very commonly this will resolve within a day, if
not a few hours. And to go back to another story
from myself, I remember I was about 18 and I was at Fairview
Mall in Toronto actually with my mom and we were shopping.
And I still got a bit sad about this day because I I caused a
bit of, I don't want to say like a scene, but I was in so much
discomfort. So we were walking around the
mall and it felt like there was a piece of glass in my jeans.
And this resulted eventually in me, like going to the loo,
taking the jeans off, searching carefully, trying to find a
loose thread or a piece of something in there that was
irritating me. And there was nothing there.
And I felt like I was losing my mind.
And I wish I'd understand at the time that having hyperbole,
connective tissue can just make you sometimes feel things a bit
differently in your skin. Because I would have been like,
oh, it's just my nerves being weird for a second, that's OK.
But instead, of course, it was really frustrating.
I had no idea what was going on. It took away from that day with
my mom, which is, you know, which made a bit sad because
it's it's always nice to have a fun day out shopping with, you
know, your mom or someone you're close to.
And it did eventually result in me buying a new pair of
trousers, which I wasn't sure if they helped or not at the time.
The symptoms did resolve with and I think that I think by that
evening I was fine, certainly by that morning, by the next
morning, But that was something which I I wish I'd had the
ability to understand what was going on at the time because I
genuinely felt like I was losing my mind because I was, you know,
there was nothing there. But I felt this like awful
pinpoint like pain on my inner thigh, which made no sense.
Anyways, I hope that a little bit of this description of small
fiber neuropathy will help some of you if you've experienced
that it is more common in the hands and the feet, simply
because of course those are the most peripheral bits of tissue
that we have. And it's harder for our bodies
to adequately supply are the outermost parts of us simply
because they're further away from your heart.
It takes more effort to maintain those tissues.
And that's why sometimes patients will have small small
fiber neuropathy issues in their hands and feet because they are
furthest away. However, it can happen anywhere
and with hypermobile patients that I see, it tends to happen
in like a random place and resolve within a day or two or
or change certainly. So it'll kind of move around.
Again, if this is you, please do speak to your medical doctor
about this. Just so that it's clocked and
reported and just so that if it's progressing or changing in
a way which is suggestive of another condition, because that
can happen, we need to make sure it gets identified.
But if you're someone where it's like kind of normal for you and
you're making sure that you're safe, I hope this helps you
understand your body. Now, the final thing that we'll
be talking about today is inter reception.
So inter Reception is incredibly underappreciated.
But first, to understand Inter Reception, we're going to talk
about extra reception. So extra reception refers to
your five senses. So what is it?
Sight, smell, touch, hearing and taste.
And that's how we process information about our
environment and the the world that we're in.
Basically, it's how I know what's going on in what's around
my body right now. Interception is how you feel
what's going on inside your body and it refers to the
phenomenological experience of inner feelings, which just means
it's a subjective experience and it's the collective experience
of all that information that you get.
Now what I find for people who are hyper mobile is that they
struggle with interception. And to kind of go back to the
very beginning of this episode, that story where I was talking
about my shoulder feeling homeless and denying that it
felt unstable even though maybe it did at the time, That's an
example of someone who is probably struggling with
interception. Feeling things is hard as I like
to say, and it's especially hard when you're hyper mobile.
And my hypothesis for why that is the case is that connective
tissue sheath around the nerve. So we spoke about that briefly
before, but all your peripheral nerves have a connective tissue
sheath around them and you can think of it like the wrapping
around a wire, like the plastic wrapping.
We also have connective tissue inside them and throughout them.
But anyways, it makes sense that if that connective tissue is
built differently, you might feel things differently.
And for me, from a physical perspective, that kind of
explains a little bit of this different lived experience.
Of course, we can start to discuss how neurodivergence and
the high prevalence of that in hyper mobile patients starts to
contribute to feeling things differently, but that's a topic
for another episode. Thank you so much for joining me
today. Please do be sure to check out
the Discord and keep an eye out for new guides and different
types of things that I'm offering.
I'm really excited with some of the things that are coming your
way this autumn and I'll share more details on that soon.
Take care and see you next time.