Latest / The STA Clinician Podcast / Ep.243 'A Therapist’s Guide To Hypermobility’ - Reflection with Jessica Janneman

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Ep.243 'A Therapist’s Guide To Hypermobility’ - Reflection with Jessica Janneman · The STA Clinician Podcast

0:00
Music.
0:11
We're live. Hey people, welcome to episode 243 of the Sports Therapy Association podcast.
0:18
My name is Matt Phillips, creator of RunShutLive.com. And as always,
0:22
this episode is being recorded live at eight o'clock on a Tuesday on the Sports
0:27
Therapy Association YouTube channel.
0:30
This is the ninth episode of our reflection series.
0:34
And in it very shortly, I'll be chatting with clinical massage therapist,
0:38
Jessica Yannerman of Ease Therapies, who's going to be reflecting on episode 222 of the podcast,
0:45
which was entitled A Therapist's Guide to Hypermobility, recorded in December
0:49
2024 with special guest Bonnie Southgate.
0:53
Just before we do that, I'd like to thank last week's guest,
0:57
physiotherapist Emily Sweet, who reflected on episode 229, Pregnancy-Related Back and Pelvic Pain.
1:03
It was recorded in February with special guest Michelle Lyons.
1:07
And as I mentioned last week, Michelle Lyons is going to be one of the speakers
1:11
at the up-and-coming STA Southwest Conference, which is happening in Exmouth
1:16
this September the 20th and 21st, which is a Saturday and a Sunday, we're pleased to hear.
1:20
In collaboration with the ST School and Hands-On Hub.
1:23
Tickets are on sale at thestschool.co.uk, which the STA are in collaboration
1:29
with, which is why you've got kind of like artwork basically saying the same thing going around.
1:33
There is a substantial early bird discount, which is valid until the end of June 2021.
1:39
And if you are an STA member, then there's a further discount,
1:43
which is valid until the end of June, which you'll find in the Facebook member page.
1:47
And if you don't know it, then just contact the normal mat at the STA.co.uk
1:51
or admin at the STA.co.uk or just contact us on social media. We will get that to you.
1:57
Hopefully it would be lovely to see some of you there. If you're not in that
2:00
region around Exeter, then don't worry.
2:04
What we're trying to do hopefully is create a new type of conference,
2:09
which we'll be able to take around the country to you.
2:11
So you don't have to kind of like spend your hard on cash, traveling miles,
2:16
getting accommodation.
2:17
You can wait for us to come to you, which I think is a decent thing to do.
2:20
But any questions at all, always mattatthesda.co.uk and I shall help you.
2:25
Right then, very excited about tonight's show. By the way, thank you everybody
2:29
who is listening to the podcast and downloading it.
2:31
I mean, the figure that I was not sure how this was going to work,
2:35
but the downloads and the listening is just shot up
2:38
wonderfully so which is amazing because that's everything we want
2:40
to do we want to reach everybody and help get
2:43
the good word of our guests and our clinicians out
2:46
there and that's happening so thank you very much if you are listening and
2:49
downloading thank you to people who join us live as well uh just
2:52
say hi to a couple of you before we bring up tonight's guest
2:55
so deborah sluridjumas sorry about the pronunciation says
2:58
hi hi deborah thanks for joining us cecily histop
3:01
is here saying hello hey cecily immy tester
3:04
is in the house hey immy angela thompson says
3:07
evening i enjoyed the live aspect last week so back
3:10
for more a glutton for punishment well there you go angela thanks
3:13
for twice in a row thank you very much for joining us that's great and
3:16
sir glenn murphy mbe evening to
3:20
the best pa around hi to all so distinguished
3:23
this class thank you for joining us appreciate it right then tonight's show
3:27
let's bring up tonight's guest clinician reflecting on past episode 222 a therapist
3:33
guide to hypermobility my guest tonight is clinical massage therapist Jessica
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Janeman of Ease Therapies.
3:41
Music.
3:56
I'm very well. I'm just impressed that it was Jessica Janeman and not Jessica
4:00
Janeman or another combination. So I'm glad we had that conversation.
4:04
And I know that you're a good person because you could have sent me here tonight
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saying Jessica Janeman, which would have been... I would have admired you,
4:11
but in a way not. So thank you so much.
4:13
Let's start. So people who aren't aware of you, I've seen on social media,
4:16
you've got your fans in here tonight and it's lovely to see a lot of support for you in the house.
4:19
So thank you everybody who has shared and done that because it is a bit nerve-wracking.
4:24
It is a nerve-wracking anyway. So I'm glad that you've stepped up.
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But for people who are not aware of you, could you tell us maybe where you are
4:29
in the world and what you do work-wise? Yeah. So I'm in Birmingham.
4:33
I have clinic at the bottom of my garden. I'm a clinical massage therapist. Yeah.
4:41
Tell us some more about history. How long have you been qualified?
4:44
So I originally qualified as a kind of spa massage therapist about six years ago.
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So just before COVID then COVID hit
4:54
and I started to do
4:56
a bit of thinking really and I was puzzled by as
4:59
you know we've talked about people have talked about on podcasts before the
5:03
lack of knowledge and understanding of what's going on in the human body that
5:07
I needed to have in order to do my job so I spent a lot of COVID time listening
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to podcasts learning and then when we came out of lockdown,
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I did my level three and then I did an ACMT with Jing and now I'm on the VTEC 6.
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So I've got a year left of that at the Jing Institute in Brighton.
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Fantastic. So it's great for people to know. So you've come from an area of
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the industry where you're not allowed to work with injury.
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And now you've moved definitely into places where you can work with people who
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are in injury and pain up to high level.
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So that's great. So everyone can know. Wonderful. Right then.
5:45
Let's crack straight into it then so out of 240 episodes of the sports therapy
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association podcast you chose episode 222 to reflect on a therapist guide to
5:55
hypermobility which as i said was recorded with the great bonnie southgate in
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december last year jessica yaneman why that episode.
6:04
Well i'd seen bonnie at therapy expo and was super excited to find a therapist
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who was talking about hypermobility.
6:14
So I have hypermobility ail at Stanloss.
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At the moment, I'm awaiting testing to see whether I've got another type.
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And I treat lots of clients who have connective tissue disorders.
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And the kind of journey for me, getting a diagnosis went alongside my journey
6:34
as a therapist and what I had found in my desperation to find anything to help.
6:43
Me but also my daughter who has the
6:46
same condition was that whenever I was
6:49
talking to anybody about using massage I
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was getting a kind of negative feedback that
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it's passive so it's not going to help we need
6:59
to be active if we've got loose joints that we're
7:02
changing structures there's a risk of throwing things
7:05
out and that was kind of happening within
7:08
the people I was talking to within the kind of body work
7:11
community but also the medical community and I
7:14
was I was upset by it partly because
7:18
I I really felt that it
7:21
could make a difference and so Bonnie finding
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Bonnie and seeing Bonnie speak at Therapy
7:27
Expo and then the podcast really made me feel that
7:30
there was some validation there both for me
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as somebody living with a condition and for my clients and therefore a kind
7:38
of hope because it would mean that through listening to Bonnie other therapists
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would come to realize that it is a really really helpful modality to have and
7:50
not necessarily something to be scared of.
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So that's I mean I'm so happy that
7:56
you stepped up to reflect because it's going to be so informative
8:00
and so empowering for listeners because not only you reflect on
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something you found useful for your trade but also
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it's something which obviously affects you personally and your daughter so
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you've got first-hand experience of dealing with some of the issues and
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the barriers which bonnie talks about on the episode so thank you so much
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for coming and talking about this really appreciate it so bonnie
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we should mention probably as well people who aren't aware of bonnie southgate
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bonnie herself has got a hypermobility
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type eds so abbreviated heds and she talked about how she had problems of her
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background was ballet and she was having all these injuries and conditions and
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she'd never thought she had anything wrong with her because a lot of people
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around her kind of did but a lot of people didn't and and then she wasn't diagnosed
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until she started doing the research herself.
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Maybe if we could it was a similar story for you then wasn't it because I mean
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I should also point out that and this only clicked recently that in the episode
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with Bonnie you were sharing your own experience where you went undiagnosed
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for how many years did you say 40 years okay so yeah the floor is yours 40 years
9:03
sounds horrid how did that happen yeah.
9:07
The really strange thing about it is I didn't get the diagnosis or didn't even
9:12
think about getting a diagnosis until my daughter started to suffer.
9:17
So she's now nearly 16. I have asked her whether it's okay for me to share her
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story and she's really happy for me too. Thank you, daughter. Thank you.
9:25
What's her name? Evie. Thanks, Evie. Thank you. She'll be delighted. Famous.
9:30
So Evie's nearly 16, but during COVID,
9:34
obviously we weren't moving in the same way she'd been a really active
9:37
circus performer did lots of burial work and we
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weren't moving in the same way and hormones were
9:43
changing and all of a sudden things started to dislocate within her body which
9:49
was obviously as a parent terrifying and we couldn't really access medical services
9:55
in the same way and we had a I mean a really really awful time with it and multiple thumbs,
10:02
shoulders, knees, jaw, hips, everything.
10:06
And nobody quite knew what to do, how to manage it, what it was.
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And there was, you know, we were taken away into a side room to be spoken to
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about whether anything was going on at home.
10:16
There were conversations, there was a doctor's letter where he wrote that she
10:21
was being manipulative.
10:23
There was an awful lot of gaslighting disbelief.
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And so So I hit Google and started to do my research because I knew that something wasn't right.
10:37
And so eventually we got to a clinical geneticist and they asked the questions, of course, around me.
10:45
And I mean, it's classic. I had all the party tricks as a kid,
10:50
fainted a lot as a teenager.
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They looked at my flexibility now and I hit various points on the basin score.
10:57
But the thing that became key was when I was 25 both my retinas detached and
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so I'm partially sighted in one eye and but for a while I was completely blind and at that point,
11:11
barriers pricked up. So it was interesting because they were saying that Evie's
11:16
hypermobility was within a normal spectrum,
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but there was something about the fact that both of my retinas are detached
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for no apparent reason that then meant they looked deeper.
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And it was at that point that, yeah, that we got the diagnosis.
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So that was about a year ago.
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So that's it's kind of shocking in the sense that it sounds like you were mismanaged
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for so long and the right questions weren't asked at all and and so you had to go private in the end,
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we did we did um yeah I suppose about three years ago because we were getting
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nowhere at all and it just they just kept saying this is the normal range of
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hypermobility she'll outgrow it it's a hormones she's a girl you were given
12:00
that line where you she'll out yeah yeah yeah.
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Yeah she'll outgrow it you need to stop doing your party tricks is what they kept saying,
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and actually the irony of the thing was that when
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she was doing the circus stuff which they deemed the
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party tricks that kept her strong so it was at
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the point that that stopped that things started to
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fall apart so yes so
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we did eventually we did go private which didn't
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sit well with me politically in any which way we had
12:31
one appointment and she was given a diagnosis of hypermobility spectrum
12:34
disorder at that point but even that then we came back and I think it's important
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to say I have a huge amount of respect for the NHS and my husband's a nurse
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and I am I understand the time constraints and all of the rest of it but even
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when we came back with that diagnosis,
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it was well there's nothing we could do and in fact an OT who we see said to me a couple of weeks ago.
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We hate it when anybody comes in with an Ayla's Danlos diagnosis because there's nothing we can do.
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And so I suppose, again, that is why Bonnie's episode is so important to me,
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because there is a lot that we can do.
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And as massage therapists, particularly that time we have with our clients to
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talk and listen, hear their stories,
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the hands-on work, the aftercare, there is a huge amount we can do,
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advocating for them, the writing to the doctors, the helping to signpost.
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There's a huge amount we can do.
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So to say there is nothing we can do makes me furious.
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Yeah, it's that double-edged sword I get from doing these podcasts because I
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hear your story and it hurts so much inside. I hate it.
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Makes me want to kind of stop the planet get off but then it's
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the idea of the podcast is it gives me joy
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in the sense that hopefully you know we can put this
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information out there and help empower our
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audience who as soft tissue therapists
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who probably see a lot
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of population who are suffering and they want to relax they need an hour off
14:17
the discomfort and they're going to come for what they think is just a massage
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just to get away and feel good and they know the massage can reduce the pain
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even if it's only temporary we can do so much more can't we if we ask these
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right questions and help prevent i mean with bonnie we were talking about an average.
14:33
Misdiagnosis or lack of diagnosis for 10 years and then you're kind of like
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yeah hold my drink try 40 you know which is like if that doesn't send the message
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through and if it's some point.
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Yeah and you're and i love the way you defend the nhs and
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we understand and it is it's a society issue like
14:52
so many other topics we've talked about but we can make such a
14:54
difference as soft tissue therapists to get that conversation going to
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empower our clients and patients to go back and
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and say hold on i'm not happy about that whether it's somebody
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who's being told oh yeah heavy menstruation is normal just go on the
15:07
pill or somebody who's been told whatever it is it's a party trick
15:09
just grow out of it stop doing this ridiculous activity
15:13
all of this stuff if we can say
15:15
to our clients and patients you know what no no no this is
15:18
not on go back be strong to yourself you
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listen to yourself you know this isn't right go back and that's
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unfortunately that's got to be they go back to the GP who's doing as well
15:27
as they can whatever and say no hold on I've been told by somebody what
15:30
about this what about this what about this keep going and life-changing couldn't
15:34
it for everyone and everyone involved absolutely and
15:38
I think sometimes it's the you know it's exhausting isn't
15:41
it if you're fighting for a diagnosis of something and you've
15:44
been around so many people or you don't know what's going
15:46
on sometimes actually the thing we can do
15:49
is know about some of the resources or say do you know what I'll go and have
15:54
a look for you and come back and then I can give you know there's a wonderful
15:58
toolkit on the EDS UK website that you can take to a GP and it helps you have
16:04
that conversation you know so just knowing things like that that then you can say to somebody.
16:10
Here that you know you do that job for them and it just takes away a little bit of,
16:14
the stress of the whole thing definitely for
16:19
listeners who hopefully now thinking right i want to do something but i know
16:23
nothing about eds what the hell is it i'm definitely never going to say it you
16:26
can stick with eds ellis danlos is like a horrible term to time so you can't
16:30
fake it till you make it with that because it will come out 101 million ways
16:33
but eds that's why it's eds But in simple language,
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can you give us as far as we know what causes it, if some particular populations
16:42
are more susceptible to it?
16:44
And then later on, what are some of the symptoms or questions we should be asking to help identify it?
16:50
So EDS is a group of connective tissue disorders.
16:55
So there are 14 of them. We think one of them hasn't been identified.
17:01
So there's 13 identifiable ones and
17:05
they all have very different characteristics the kind of
17:07
headline characteristic is the joint hypermobility and
17:11
pain but actually you know
17:14
the important thing about it is it's systemic so it isn't just the joints obviously
17:21
your connective tissue runs right through everything which is why my retinas
17:25
came off I've got a leaky heart I when I had my son I went into labor very early
17:32
because of the connective tissue.
17:34
So EDS is a group of disorders.
17:38
Hypermobility EDS, HEDS, is the most prevalent one, I think,
17:45
and doesn't have any genetic testing yet, whereas the others do.
17:49
And so part of the reason it is difficult to
17:52
diagnose is we obviously don't have that testing
17:55
yet and so the diagnostic
18:00
criteria have changed so what you find is
18:03
sometimes people have a slightly older sounding name
18:07
for the disorder that they come with so things like joint hypermobility syndrome
18:11
sometimes people have benign joint hypermobility syndrome because these criteria
18:17
change all the time and indeed they're due to change again and with that should come easier,
18:23
better communication with medical professionals about how to diagnose these disorders.
18:29
And what you also come across is hypermobility spectrum disorder,
18:34
which is no less of a disorder than HEDS, but sometimes is played as that.
18:43
And what tends to happen is if you are presenting with some of the symptoms,
18:48
particularly these kind of jointy symptoms, that cannot be diagnosed as HEDS
18:54
or one of the other EDSs, you get the diagnosis of HSD.
18:59
And again, once diagnostic criteria change, some of those boundaries might change
19:04
and people become, their diagnosis changes.
19:07
And that is also problematic because what we've got sitting about are lots of
19:12
different names for sometimes the same thing, which further confuses an already
19:18
slightly confused picture.
19:20
And I think you asked about symptoms.
19:22
Actually, before we do that, yeah, because I mean, you've already reminded me.
19:25
So I think I'm just trying to think there's lots of I think the names themselves
19:29
can scare therapists. What we're saying here is, is massage therapist level
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three, okay, can play just as important a role in the future of this person as a consultant.
19:40
Because you're probably going to be in a better position to ask the question
19:45
to this person who trusts you, someone who takes their clothes off in front
19:47
of you and is happy for you to put your hands on you.
19:51
If you ask them the questions, they'll answer to you because they trust you.
19:54
But you've got to ask the question. So it doesn't matter if you don't understand
19:58
the names and the fact there's like 13, 14 different types.
20:01
But I think one of the things that Bonnie summed up and you've reminded me of
20:04
is that if to start off, we don't think that hypermobility is a diagnosis,
20:11
that hypermobility is what, as Bonnie says, an umbrella term.
20:14
And we've got to realize as therapists that there's hypermobility
20:18
which could be applied to a client who's
20:21
able is a great ballerina martial artist or
20:24
something and they don't suffer from any of these other disorders
20:27
in fact they don't suffer from any injuries more than somebody who hasn't got
20:30
that range of movement but then within that population there's another population
20:34
who have with further investigation got other symptoms which they might not
20:39
even realize are connected with their hypermobility which we need to ask them
20:43
about and and they need to be separated,
20:47
from this other population because they've got systemic sometimes even life-threatening,
20:52
things going on so so what are some of those symptoms where we've got an athlete or,
20:57
anybody who's come in and we notice that they or they've said to us yeah i've
21:01
got a huge range of movement and we might even have put them through some range
21:04
tests and gone jesus what's happening here what are some other things we should
21:07
be asking or looking for which would help us realize this person needs to be
21:12
referred potentially to someone else.
21:14
Things like gastric symptoms very often you see kind of gastric ibs type things
21:21
even things like heartburn all sorts of things to do with blood pressure you
21:27
know do you get dizzy when you stand up you turn over suddenly headache brain fog,
21:35
bruising easily yeah I
21:38
mean it just threads through absolutely everything things
21:41
to do with thinness of your skin if you
21:44
bleed easily stretchiness of your skin neurodiversity that's
21:49
another thing mental health sleep I mean it got you know it goes on and on but
21:55
really some of these things can really help you start to build a picture of
22:00
what people thought were random,
22:05
things that they had in their profile when you look at them together can build the real picture.
22:10
So it is recognizing the appearance
22:14
of these symptoms together so if they're saying they
22:17
do actually if you just even if you don't normally have
22:20
on your medical park you do you suffer from any gastric
22:23
problems or stomach problems it's something that people should
22:26
start introducing in their just consultation anyway
22:29
i mean you could have it just as a yes no answer to get conversation started
22:32
but it's that he said and then along with that any
22:35
respiratory issues which might be associated as well
22:38
skin issues yeah allergies allergies allergies
22:42
big one so there's loads of conversations which
22:45
aren't that even taboo like it's not like you're
22:48
trying to skirt around a weird question
22:51
which you might feel uncomfortable with it's simple questions but you just got to ask
22:54
them and then have the confidence to think well hold on we've got
22:57
this and this and this going on and then
23:00
what would you what do you wish someone had said to you imagine
23:03
you'd gone for massage back in the day and they'd ask
23:06
this and you've gone yes yes yes what should they then send you to who should
23:08
they send you to what do you think what do you wish had happened i think
23:13
maybe rather than sending me
23:15
to a doctor i think signposting me to if it existed you know something like
23:21
the eds society okay i think that you know the i feel recently i I'd say like
23:28
50% of my clients come to see me because they have a systemic hypermobility.
23:33
Connective tissue disorder but I'm seeing more and
23:36
more people who come for something completely different you
23:40
know an Achilles tendinopathy or whatever and then say when you're doing your
23:45
questioning oh well somebody once said that I'm double jointed or oh some you
23:50
know somebody said that I overextend my knee something like that and it almost
23:54
comes as a badge of honor like oh look at me, I'm really bent.
23:58
And in those instances, I'm,
24:01
I obviously ask all the other questions around it and I start to piece it together in my head.
24:05
But I am very aware that if you look up EDS, it is a huge spectrum and the things
24:14
that you are going to see can vary massively.
24:16
And it can be quite a terrifying thing to be confronted with.
24:20
So I think you know having a
24:23
particular resource like that GP toolkit or you
24:26
know a website that covers some of these symptoms but
24:29
in that isn't Instagram that is
24:32
going to show you a whole lot of stuff that isn't necessarily helpful
24:36
something like that so because
24:39
there were also all manner of things that like I
24:42
said when I learned that that's what I had started to
24:45
go gosh yeah that's why I fainted all all of those
24:48
times when I was a teenager and that's why I had those awful migraines I
24:52
probably wouldn't think to even bring them up at a doctor until I knew a little
24:56
bit more so I think some of that kind of signposting as a step before you even
25:02
get to the GP might be a helpful thing that's really that's a great answer it's
25:07
really good because thanks to.
25:11
Organizations like you've mentioned we'll put links to these in the show notes
25:14
then yeah you You can probably get some more, because GPs are masters or have such a knowledge,
25:21
a little bit of knowledge of everything, but they're not specialist in this,
25:24
which is one of the problems. And they get 10, 50 minutes and they're probably tired.
25:27
Whereas if you go to one of these organizations, you're going to meet someone
25:29
who's going to be loads of empathy and understanding.
25:32
Chances are, although it's not necessary, they will have maybe gone through
25:35
what you are going through and that'll add to what they can offer you.
25:38
So yeah, great idea. I mean, and really, as we see on the podcast.
25:43
There's so many, once you start thinking of this and women's health issues or
25:49
male health issues, rheumatoid arthritis,
25:51
once you start thinking of all of these systemic things which are here in society
25:55
and we could help with, then you should get, you should be asking all these questions anyway.
26:01
Yeah. Because you'll probably, you know, just to cover all your bases,
26:04
all of these things need to be asked. So, yeah, very powerful.
26:08
People in the audience you've gone very quiet is that because you're writing things down
26:11
on your notebook i can't believe me and cecily haven't
26:13
jumped in and said anything yet but i'd be interested to hear whether you
26:16
have come across anybody or treated anybody what
26:19
do you know what the incidence is like what percentage of the
26:22
population are likely to be suffering from some kind of hereditary connective
26:28
tissue disorder or i don't know i don't but what i do know is that they think
26:32
that HEDS particularly is more prevalent than we realize because of the diagnostic issue.
26:41
And is women more than men generally? Is women more than men?
26:45
Yeah, because of the hormonal component, I think.
26:47
But there certainly are men out there who struggle with it. Fantastic. Okay.
26:53
The skin conversation, I think, is an important one that Bonnie highlights because.
26:58
If there's any word that comes after hypermobility, it's probably, oh, stretchy skin.
27:02
And that's, you know, because, and then that's a lot of the time that can be one of the symptoms.
27:08
But I think Bonnie spent some time kind of explaining that it's not necessarily
27:11
what we envisage with like skin coming out a long way.
27:15
It's kind of more, it comes from all over the place rather than just localized.
27:19
But is that something you said that you experienced? How would you describe
27:21
it? What should people be looking for?
27:25
Well, I think that's another thing that you can spot
27:28
quite easily actually is not so much
27:31
the stretch i'm now stretching my hand and it
27:34
is exactly like bonnie says it stretches from different angles
27:38
rather than in one kind of line yeah but the
27:40
other thing is that you tend to
27:43
have these kind of this kind of scarring i don't know i
27:46
can show you my if you listen to the podcast this is where you
27:48
pause and you go to youtube that's fine it's good to go
27:51
to youtube um but yeah scars that hit that don't
27:54
heal well mine are very wide um
27:57
and so sometimes you can notice
28:01
that on people or oh you
28:03
know like when you had an insect bite and you've picked at it and
28:06
then it doesn't doesn't tend to scar over properly so
28:10
things like that you can notice on people's bodies the
28:14
skin feels different moves differently under your hands
28:17
when you're working and that is a really you
28:21
know i think bonnie says it and it's obviously obviously
28:24
bonnie said it absolutely right that you
28:27
either feel a kind of doughy it
28:31
feels doughy the fascia feels kind of squidgy or there's a tightness and everything
28:36
absolutely locks down and you tend to find it one thing or the other but i certainly
28:43
don't feel you know i think people are scared of the skin thing that they're
28:47
going to rip your skin open or something.
28:49
And I really don't think there's any need to feel that.
28:54
If you've got somebody with a vascular EDS, that's a slightly different situation.
28:59
But I would say, as somebody with EDS having treatments, the nicest thing is
29:05
when somebody gives you a kind of firm pressure. Because.
29:11
You you you feel safe you know if somebody feels uncertain
29:15
and is trying not to to give
29:18
you much kind of pressure on your skin you can you can
29:20
feel that uncertainty and that's troubling and
29:23
it doesn't it doesn't make for a calming of the nervous system yeah well put
29:28
so yeah and and I think as Bonnie pointed out as well as I mean you might pick
29:33
up on this the skin the different sensation especially if you're hands-on you're
29:37
going to be kind of like be able to test for that But then it's,
29:41
as Bonnie kind of reiterated, it's asking the other questions as well, isn't it?
29:44
It's not just looking for the skin and being able to touch the floor easily.
29:47
It's the gastric and the maybe respiratory issues and all of that kind of stuff
29:53
as well to get a better picture.
29:55
Right. We've stimulated a little bit of questions here. Let's have a look.
29:58
Cecily's apologized for being quiet tonight.
30:00
Okay. You led off Cecily. She says, sorry, busy listening, but I do have a friend
30:04
who has a version of EDS and has to permanently wear a body and face brace.
30:07
Potentially they may have to have to their jaw wired together to stop dislocations.
30:14
Familiar with that I mean everybody's different yeah yeah
30:18
so my daughter had a
30:21
spell we had a good few not good we had a few weeks in
30:24
hospital she had a dislocated jaw that
30:26
she struggled with for years actually but it got to the point and this
30:30
is another thing with the dislocations that they recurrent dislocations
30:35
obviously everything gets laxer and laxer and there
30:37
tends to be a spasming that then just throws the
30:41
whichever joint is back out again and so in Evie's case
30:45
her jaw however many times you relocated it
30:48
would not stay in place so she ended up
30:51
with her head bound like this and she couldn't eat drink smile and yes there
30:57
was a conversation then about wiring and thankfully we avoided that but the
31:03
jaw tmj issues are a you know a real problem within this population,
31:10
miserable, utterly miserable. And as a kind of, is it not such a problem now?
31:17
Have you managed to find something to help reduce the amount of times it happens?
31:21
Yeah, I mean, such everything wouldn't.
31:23
It hasn't happened. That particular dislocation hasn't happened for a really long.
31:27
Do you know why? Is it something you've been told or you've discovered? She's outgrown it now.
31:34
I love your candidness. Yeah, the gentleman's right. She outgrew it.
31:38
No, I think really what happened, what we found with her particularly,
31:43
is that you have these, it's like it decides to go for one particular joint
31:49
and then you have these repeated subluxations, dislocations.
31:53
And then if you can find a
31:56
way of calming and which might be
31:59
to do with bracing taping but also calming
32:02
the muscles around calming the nervous system then
32:06
that kind of spasming settles and then
32:09
that is where you can start to build in some
32:12
strength works physio that sort of thing
32:15
and in Evie's case the settling came partly
32:19
because the head was bound but also because they used some
32:21
medication and that broke that cycle so
32:25
I think you see often within this and
32:28
not you know not everybody I don't dislocate really I subluxate
32:31
a little bit but I certainly don't dislocate but you know within the dislocating
32:35
population you see these kind of cycles and what becomes really difficult is
32:41
how you manage that without ricocheting in and out of hospital and so much is
32:46
about calming the system down,
32:48
which again is where we are so relevant to that care.
32:53
That if you can start to calm the system, then you can start to address some of those issues.
33:01
Yeah, really well said. And calming it down both physically through the touch
33:06
and desens or dialing down the nervous system, but also just listening and empowering
33:13
and just giving them hope.
33:14
And like we were talking about even last week, all these episodes,
33:18
when we were talking about pregnancy and girdle pain,
33:21
it's about listening and telling them you're not going to break you're not unstable yeah
33:24
something can be done you know you can live with this you know
33:27
it's that's a huge thing yes thank you
33:31
right people what else we've got some other comments here thank you very.
33:33
Much deborah slujima says i have
33:36
a friend 58 years whose daughter has also been diagnosed
33:39
she's 20 years old so inherited it's interesting
33:43
isn't it because they know it there isn't an inherited
33:46
it can be inherited as one effect that's one of
33:49
the big questions isn't it to ask people you know have you got any families who
33:52
have suffered from this or have any but they still
33:55
can't yeah um the genetic testing still
33:57
isn't quite on top of it for for all of the types but yeah
34:00
it's definitely worth asking that question isn't it have you got anybody in
34:03
the family one thing you mentioned i
34:06
think it was when we were chatting a bit off air sorry cecily i'll come
34:09
back to your comment again one of the
34:11
bits of advice i think your daughter was given was back
34:15
off from the exercise and that potentially could
34:18
have been you know reason why some of
34:21
the dislocations happen more because those muscles which were actually more taut
34:24
and yeah kind of holding bones in place
34:27
kind of relaxed and so it's
34:30
finding that goldilocks zone isn't it of calming things down but
34:33
then once you can building them up again yeah and you
34:36
know it's it's scary it's scary if
34:39
your body's not doing what you think
34:41
it should be doing and what everybody's telling you it should be doing and nobody
34:45
quite knows how to help you and you know and it's
34:48
like any pain condition isn't it if how far how far do you push it what's the
34:52
payoff how do you know whether it's good pain bad pain and everybody's throwing
34:57
you different advice from all over the place who do you trust what do you do.
35:01
It's it's really really very difficult are you involved in.
35:06
The strength training side of things with your clients or do you refer them
35:09
to people who do strength training with them?
35:11
Because it seems to be quite important if you're at the right stage to get strength
35:17
and control throughout the range you've got because you're going to go into
35:20
that range rather than avoiding it and being scared of it.
35:23
But do you work with people to help them get that strength?
35:27
I do bits and bobs. I'm not a strength and conditioning coach.
35:31
I don't have a movement background and so will
35:34
absolutely refer people on which I
35:37
think is the other thing as well I think it's important to feel like
35:40
massage is enough you know that
35:43
and and obviously to know
35:46
to stay within your scope so yeah I do refer people
35:49
on and I think another thing that
35:52
is a very useful thing to have in your toolkit if
35:56
you're working with this community are all the online resources.
35:59
You know bonnie has huge amount of
36:02
youtube material out there that are movement classes
36:05
there's a wonderful mobile artes network
36:08
you can access you know there's quite a lot you
36:11
can access online and certainly some of
36:14
some of my clients they come and see
36:17
me and that is it for the day you know they
36:20
their movement is really very very limited so
36:23
i suppose the end of the scale i'm at is thinking
36:27
about things you can do in bed you know pelvic tilts
36:30
in bed or bits of rocking of the knee you
36:32
know very very low key bits of movement that
36:35
then creates a bit of momentum and then i refer on
36:39
you know that's where i'm at i like
36:42
the way you said that actually you know don't be afraid to think
36:45
this is what my job is just because i can't do the other stuff doesn't
36:48
mean i'm not very good at my job it's just that's not my bag you
36:51
know that's a really healthy way of looking at it and then just having the
36:54
confidence to contact maybe strength and conditioning coaches
36:57
and helping them realize because they're not going to know all the stuff you
37:00
know you're going to know so much about these conditions and you know
37:03
it works from a business level which we mustn't forget about that's important
37:06
but also just from a satisfaction and looking after the client to get the results
37:09
so the power of networking cecily sorry i bumped you off there cecily uh fortunately
37:16
they have found a great cairo who knows how to treat them But even I've been
37:19
too scared to massage them out of fear of hurting them. That's a great point, Cecily.
37:24
I mean, as somebody yourself, Jessica, you've received massage or you don't
37:30
suffer the dislocation so much.
37:31
Does your daughter have massages? Do you massage? Yeah.
37:34
And is that from you or has you ever been massaged by someone who's had initial
37:38
fear or not quite sure how much can I do here?
37:41
No, because I wouldn't always vet the person before I send her.
37:47
What would you recommend to a therapist who wants to give massage and is empowered
37:51
by this what is it just communication with the client to let them know or yeah
37:57
I mean I think you know I think you work slowly really and you communicate and I think I think.
38:06
The thing that is really important is, again, thinking about it as a systemic condition.
38:11
And so maybe what you're looking at is a shorter session than you would normally do.
38:17
You're thinking about the surroundings.
38:20
People often have heat intolerance. And like I say, there's that kind of postural or static dizziness.
38:28
So the turning over, things like that. But I think absolutely,
38:33
you know, establishing whether you can work together is the key.
38:38
So the conversation at the beginning, whether your touch is helpful to them,
38:43
whether it feels like the right sort of touch.
38:46
I think more than thinking about techniques and what actually am I doing,
38:53
you know, I think it's about that relationship more than anything.
38:57
So I would take the focus off trying to you know you're not going to fix anything
39:03
it's we're so far away from that in some regard that I think actually what that
39:09
does is take the pressure off you because then what you are are two humans in
39:14
a space seeing whether you can work together.
39:16
Um what about the fear of like them turning over
39:19
and suffering a dislocation of some form firstly could
39:22
that happen because I mean Bonnie was saying how she could turn over in
39:25
bed and you just yeah yeah yeah but I think secondly if
39:28
it does happen what's the scenario well I think you
39:30
know I think you have that conversation beforehand don't you are you
39:33
likely do you dislocate do you subluxate do
39:37
you need any bolstering is there anything I can do to support
39:40
that I do you know I do think the thing to be aware of which is exactly what
39:45
Bonnie says is that feeling of wanting to to work something out you know sometimes
39:50
particularly the tracks are super tight And what you want to do instinctively
39:54
is get in there and get it gone, but that's not going to happen.
39:57
And if you work in that way, yeah, you are at risk of causing some sort of reaction.
40:03
But I don't think you should be in a position where somebody will dislocate, really.
40:10
And also, you know, people who dislocate, like Bonnie saying about rolling over
40:16
in bed, tend to know what it is that's going to do it.
40:19
You know, it works both ways around. It's not all on you.
40:22
Good. You ask the questions and you listen and you respond accordingly.
40:28
But it's a two-way street. And, you know, people who dislocate know their own
40:32
bodies. You ask the right questions and they'll tell you.
40:35
And that's fine. You know, I get the fear.
40:38
I totally understand where the fear comes from. from but if if you ask the right
40:44
questions and you listen and you work together it won't happen,
40:48
and and actually people whose limbs fall out and fall back in again will be
40:55
less bothered by it than you will be you know it's not something to be scared
40:59
of i don't think i'd be aware of it but you don't need to be scared of it great
41:04
great answer um andrew thompson's come back andrew's been doing some research
41:07
for us. Thank you, Angela.
41:08
He says, looks like it's one in 5,000 people with a 73% split women to men.
41:13
Oh yeah, I saw the 73rd. But one in 5,000. Okay. So yeah.
41:17
But like I say, the interesting thing is, yeah, as we started off saying at
41:21
the beginning, isn't it?
41:22
Separating the hypermobile and asymptomatic lot who show the range of movement,
41:28
but they're not going to have any problems from the systemic people with the right questions.
41:32
But yeah, thanks, Angela. We'll try and think of another question for you to do.
41:35
Come back next week this is third week in a row next week is about imposter
41:39
syndrome if you want to do a little bit of research on that thing right deborah's
41:42
come back with my friend suffers with trigger finger is this something that
41:45
can relate trigger finger is that a technical term,
41:49
which i'm not aware of i'd well i'm glad you're not because i'm not.
41:55
Good that's fine no we're not sure
41:57
deborah can you elaborate on that because we
42:00
are not familiar with what you're referring to come back
42:03
to us deborah um cecily's come back and says i do have a client who has a mild
42:06
version of eds if that's the term who i happily treat but this particular friend
42:11
i possibly need to man up thank you for your advice there we go i love what
42:15
you said about that the fear and yeah if you have it's all about conversation
42:19
and it's not i love the way you said,
42:21
it's not all on you it's a
42:24
two-way thing the client is going to know what triggers
42:27
it they're not going to do something they've never done before and suddenly go
42:30
oh pick that up could you you know they've moved
42:33
around and they know their body so it's up to you to
42:36
work with them yeah and say is that going to be
42:39
okay is that work and not feel stupid you know the thing that i think i would
42:43
say again because of the systemic nature of it there is there tends to be quite
42:49
a lot of fatigue and brain fog and some of those things it's useful to limit
42:55
your treatment time this is four.
42:59
And certainly in the first instance, if, you know, if they've made a journey
43:03
and sourced it before they get there,
43:06
actually having a conversation about, you know, my initial treatment time is
43:11
an hour and a half because they do about half an hour of consultation and then
43:14
obviously the treatment, a bit of aftercare.
43:16
But I might say, well, why don't we do that? We'll do the consultation on Zoom
43:20
and then you're not having to travel.
43:23
Then you come and we have a slightly shorter, maybe we'll work together for half an hour.
43:27
Then we'll have a little chat at the end go away and see how you feel and then
43:30
we'll think about how we can work together because I've found personally when
43:34
people have treated me and particularly if they're keen to show off lots of
43:39
different things it can really flaw me afterwards,
43:43
and I'm just exhausted so I do think that that's something that's quite a useful thing to consider.
43:51
Initially great advice thank you and Jeb has come
43:53
back saying trick a finger or what she was suggesting is the finger gets stuck the
43:57
finger gets stuck and has to peel the finger
44:00
joint she has to in peel the finger joint sounds like some kind of inflammation
44:05
swelling kind of thing or yeah i mean certainly my fingers get stuck all the
44:10
time right which is ideal when you're a massage therapist obviously but i used
44:15
to yeah my little finger quite often gets stuck,
44:19
and is that part of the systemic to do with the inflammation and the muscles
44:24
and yeah yeah Which is the same as all my joints crack. It's revolting.
44:29
But it's a similar sort of thing. They will get stuck and then something will
44:35
happen and it will shift. And then I don't know whether it's the same thing at all.
44:38
Yeah. But that's the problem. Yeah.
44:42
Okay. There we go, Deborah. But yeah, all of this is connected to, isn't it?
44:46
I mean, a lot of it, Bonnie was talking about the mast cells and how they're
44:49
involved in the inflammatory response, whether it's for an allergy or something,
44:56
and they're overreacting, aren't they?
44:57
So that's all to do with a lot of the problems throughout the body.
45:01
So yeah, it could be connected to that very much so.
45:04
Right. It's 8.49. So much information there.
45:08
Thank you so much for sharing all of that. we'll make
45:11
sure that links go in the show notes which
45:14
listeners can direct their clients
45:17
and patients or even themselves too but i
45:20
think essentially what we've kind of talked about is one
45:23
the great role which therapists can play in helping the
45:26
initial diagnosis by listening or
45:29
just sowing the seeds to somebody who comes in doesn't even realize
45:32
that their party trick they
45:35
did as a kid of putting their leg behind their neck or something or
45:38
stretching their skin is actually could be part of connected to
45:42
their gastric problems they're having or the respiratory problems or
45:44
the eczema and this and that and blah blah blah and it could get worse so
45:47
we need to sort it out now and then the other thing helping
45:50
people who have been diagnosed and providing them with somewhere safe and comforting
45:55
to to deal with it you know which can be done and being with them I suppose
46:00
like anything in life particularly with the systemic condition if that's the
46:04
peaks and the troughs the highs and the lows it's never plain sailing is it
46:07
it's probably exaggerated even more with a systemic problem.
46:09
So being there in the good times and the bad times, I guess,
46:12
is another thing therapists can do.
46:14
Either way, yeah, could play a huge part. So thank you, Jessica, for sharing that.
46:20
Well, thank you very much for having me. It's been an absolute delight to reflect
46:24
back on that podcast that I've listened to over and over and over again.
46:28
And I think, I'm sure you'll say, but Bonnie's did another one years ago, didn't she?
46:33
And that one that I listened to this morning has loads more kind of tips about
46:39
exactly, you know, so for Cecily or anybody else who's thinking about what they
46:44
can do in treatment, there's a lot more in that one.
46:46
It's true i think that was like three years before it might have been
46:49
episode i'm thinking i'm thinking 41 41 it was
46:52
41 wasn't it yeah i can't quite remember all 240 then
46:55
but i know that was 41 yeah no fantastic information and bonnie recently finished
47:02
her master's in dance science as far as yeah she'd finished that during the
47:07
episode and i'm not sure if her book's out yet i know she was talking about
47:10
a book i don't think it's quite come out yet but it's coming.
47:13
And the hypermobile universe i think isn't it but that's on
47:15
its way i think actually if you check out bonnie on instagram at
47:19
bonnie southgate then there she's embarking on
47:22
an up-and-coming eds and hypermobility and power program with
47:26
another therapist and i think there's some podcasts coming out as well
47:28
so check out at bonnie southgate on
47:31
instagram there's details of that it's being filmed i
47:34
think in the last couple of weeks so it looks like something very exciting and
47:37
useful is emerging from that so look
47:40
out for that and for you jessica yanam and if
47:43
people want to stay in contact with you we've got the website easetherapies.co.uk
47:47
and then active on instagram is
47:50
that a place to catch you yeah yeah that's just ease.therapies ease.therapies
47:55
nice and simple lovely ease.therapies yeah so
47:58
there we go so people can follow you there and obviously
48:01
if anyone's listening has been affected by this and got some questions then you
48:04
can contact me matt at the sda.uk go and
48:06
ask some questions on youtube that's probably the best platform to keep these
48:10
conversations going because they will whenever you put a comment in youtube
48:13
it youtube is owned by google so it will appear in google as well so you can
48:18
keep the information being shared by writing comments in youtube rather than
48:21
facebook or anywhere like that which is just dead weight.
48:24
I'm sorry facebook but you are right what
48:28
will be happening next week here we go so next week tuesday 8 p.m on june the
48:32
third june june suddenly it's june my reflecting guest will be sports therapist
48:37
rebecca stone better known as becky to a lot of you of gloss sportstherapy.co.uk
48:41
she's gonna be taking us way way back to episode two of the sports therapy association podcast.
48:48
To reflect on what was entitled imposter syndrome. We recorded that June the 2nd, 2020.
48:55
And that was just coming out of COVID and people going, do I have to wear this? What can I do?
48:59
That was, yeah, June the 2nd, 2020 with our guest, Jack Chu,
49:02
that was back then at the PhysioMatters team.
49:04
So join us if you'd like, if you've listened to the podcast,
49:07
you want to join us for that, then yeah, Sports Therapy Association,
49:10
YouTube channel's best place Tuesday at eight o'clock on June the 3rd to talk
49:14
about imposter syndrome.
49:17
But thank you once again, Jessica Janeman, for joining us.
49:21
I can edit that. For joining us. I really appreciate it, really honestly.
49:25
And thank you, Evie, for allowing us to share your story as well.
49:29
Thank you, everyone who joined us live in the comments. So Glenn Murphy,
49:32
MB, has said, well, that's a must-watch episode 41. Thanks, all.
49:37
Thanks, Glenn. I really appreciate it. And everyone else.
49:40
Cecily said, Crumbs, I better start doing my homework. Yep, you better start
49:43
doing your homework, Cecily. I know you're coming up as well.
49:46
It's getting closer. Sessie's going to be on the show as well soon.
49:49
If you are listening, you want to be on the show, then it's fine to be nervous.
49:53
You're welcome to have a little Zoom chat with me or something.
49:55
We can talk about it beforehand, but essentially it's just reflect,
49:58
you can't, there's no right or wrong answers.
49:59
It's about you talking about your own experiences and why a particular episode
50:03
affected you and how it helped your practice.
50:05
So it's not a quiz. No one's judging you, which is what really,
50:09
as therapists, we should be doing much more of any way, reflecting and talking
50:11
to each other about stuff.
50:12
So just contact me, master the sta.co.uk if you fancy coming in the show and
50:16
pick an episode and we will sort it out in the meantime look after each other
50:21
add some questions to your repertoire which you ask your patients when they
50:25
come in and hopefully see some of you eight o'clock next week on youtube until
50:29
then as always take care of each other.
50:34
Music.