If you've had ongoing and unexplained chronic pain, fatigue, gut issues, dizziness, anxiety, dislocations, sprains or aching joints, you may be interested in this week's episode discussing the intersection of Ehlers-Danlos Syndromes, Hypermobility and neurodivergence.

This week’s ADHD Women's Wellbeing Podcast guest is Dr Jessica Eccles, a Clinical Senior Lecturer at Brighton and Sussex Medical School in the Department of Neuroscience. Her research is on brain-body interactions, particularly related to joint hypermobility. She is an adult liaison psychiatrist and consultant in the Sussex Neurodevelopmental Service and co-lead of their Neurodivergent Brain Body Clinic.

On today's ADHD Women's Wellbeing Podcast, Kate Moryoussef and Dr Jessica Eccles talk about:

• What is Ehlers-Danlos syndrome (EDS)
• The symptoms, challenges and advantages of hypermobility
• The link between (H)EDS, hypermobility and ADHD/neurodivergence
• Side effects of hypermobility
• The interlinks of hypermobility and neurodivergence
• Hormones, EDS and hypermobility frequency in women and how it presents differently in men
• Fibromyalgia, hypermobility and ADHD connections
• Pregnancy and hypermobility
• Diagnosing neurodivergence and hypermobility
• Making daily tasks and exercises more mindful to improve chronic pain
• Long covid, fatigue and hypermobility
• Using pilates to build a stable core to help with hypermobility
• Protecting ourselves from burnout

You can find Dr Eccles here on Instagram.

Try Get Dopa here with a 10% discount: https://bit.ly/adhdwomenswellbeing10

Additional resources to support you:

Claire Smith's book

https://gptoolkit.ehlers-danlos.org/

https://www.potsuk.org/

https://www.sedsconnective.org/

Kate Moryoussef is a women’s ADHD Lifestyle & Wellbeing coach and EFT practitioner helping overwhelmed yet unfulfilled (many with ADHD like her) women find more calm, balance, health, compassion, creativity and clarity. 

Have a look at some of Kate's workshops and free resources here.

Follow the podcast on Instagram here

Follow Kate on Instagram here

Have a read of Kate’s articles in ADDitude magazine here

Mentioned in this episode:

Gratitude link

Welcome to the ADHD Women's Wellbeing Podcast.

I'm Kate Moore Youssef and I'm a wellbeing and lifestyle coach, EFT practitioner, mum to four kids and passionate about helping more women to understand and accept their amazing ADHD brains.

After speaking to many women just like me and probably you, I know there is a need for more health and lifestyle support for women newly diagnosed with adhd.

In these conversations, you'll learn from insightful guests, hear new findings and discover powerful perspectives and lifestyle tools to enable you to live your most fulfilled, calm and purposeful life wherever you are on your ADHD journey.

Here's today's episode.

Welcome back to the ADHD Women's Wellbeing Podcast and I am Kate Moore Youssef, your host, as always.

And.

And today we've got a conversation that I have been so desperate to get to for a long time, but my guest is very busy and so I've waited patiently.

We've got Dr.

Jessica Echols here and she is a doctor, psychiatrist and expert, global expert in ADHD and neurodivergence and hypermobility.

So I just wanted to welcome Dr.

Jessica Echols here to the podcast and maybe you can explain to the audience exactly what you do and where your specific expertise is.

Thank you, Kate, and thank you so much for inviting me to be on the podcast.

So I basically have a couple of different roles, so one of them is I'm a consultant psychiatrist in a neurodevelopmental service.

So that is an adult service in the nhs where we diagnose autism, ADHD and Tourette syndrome, all forms of neurodivergence.

And so I do that two days a week, and then the other days of the week, I'm at the University at Brighton and Sussex Medical School, where I do research.

I've just been promoted to something called reader, which is a strange term, but it's the American equivalent of professor.

And I have been.

I've been privileged that throughout my entire research and training journey, I have always combined research with clinical practice.

So I've always had this dual split between research and clinical practice, which I think is really helpful in terms of one informs the other and vice versa.

Yeah, absolutely.

If you're working sort of patients on the ground, and while you're doing the research, it just feeds into each other and how incredible.

So, first of all, thank you so much for all the work.

You do for this community, and I'm incredibly grateful to have you here because hypermobility and EDS and Ehlers Danlos syndrome is something that we hear about in connection with neurodivergence.

It's something that I've been fascinated with for a personal perspective, but also the amount of clients I have that have chronic pain and unexplained chronic pain, and that's sort of played to them all their life.

And now we're starting to understand there is this connection.

And I would love maybe we can sort of just go back to basics for anyone that's listening to this, and they're only just discovering their ADHD or neurodivergence, and then the word chronic pain comes up, or fibromyalgia, all sorts of autoimmune issues, and they're starting to make these connections.

Can you explain a little bit between the difference between hypermobility and eds?

Ehlers Danlos syndrome.

Okay, so hypermobility, I think, in some ways, is a bit of a misnomer.

So hypermobility describes joints that are unusually flexible.

But what it is is it's a marker of something different in terms of the connective tissue.

So the building blocks of how the body is buil.

Some people have hypermobility.

And this can be an advantage.

Say if you're a gymnast, a ballet dancer, or a musician, it means that you can do things that other people perhaps can't.

But because a connective tissue, the things the lacks connective tissue that makes the joints more flexible is everywhere in the body.

It can actually affect all sorts of systems in the body.

Some people who are hypermobile, they have other features.

So they may have pain, they may have dislocations.

That's when joints come out of socket, or subluxations, when joints nearly come out of socket, they may have skin signs.

So they may have things like easy bruising, stretch marks, thin, papery skin.

They may have things like hernias, prolapses.

And so if you have the presence of flexible joints and there's certain cutoffs, which we could debate for a long time.

But if you have both the presence of flexible joints and those associated features, then you may be diagnosed with something called hypermobile eds.

Now, the EDS stands for Ehlers Danlos syndrome and Ehlers Danlos syndromes.

There are, in fact, 13 or 14.

It's under debate.

And some of them are incredibly, incredibly rare and have known genetic mutations.

All people who have Ellis Danlos syndrome have joint hypermobility, but not all people with joint hypermobility have Ehlers Danlos syndrome.

And most people who are hypermobile with symptoms have something called hypermobile Ehlers Danlos syndrome if they have an Ehlers Danlos syndrome.

And for that there is no single or clear genetic cause.

But we know that it runs in families.

If you have a family member who's affected, you yourself are more likely to, to have the condition.

But as far as I kind of conceptualize it and think about it, in some ways it's easier just to think about having hypermobility and we can think about, you know, how would I know if I was hypermobile?

And then there's hypermobility with symptoms.

So symptomatic hypermobility.

And if you have symptomatic hypermobility but you don't meet the rigid criteria for hypermobile eds, then you have something called hypermobility spectrum disorder.

So there are lots of.

This is Alphabet soup basically.

There are so many different terms and there are some historical terms as well, which further adds to the confusion.

So when I was at medical school, I was diagnosed with something called joint hypermobility syndrome.

And joint hypermobility syndrome is now being superseded by HEDs and HSD.

There were also other four older terms or EDS terms used to describe what is now thought of as HEDs, like EDS type 3 or, or EDS HT.

But currently if you have symptomatic hypermobility, you either have hypermobility spectrum disorder or you have HEDS or one of the other forms of eds.

So that is maybe even more confusing.

But I think the important message is it doesn't actually matter what the label is, it's identifying that you have symptomatic hypermobility.

The outcomes and management are the same for both HSD and for heds.

So thank you so much for explaining all that.

And it kind of just compound the confusion really because you know, as we're navigating neurodivergence with all the different spectrums and we're kind of the overlaps that we're feeling and then this, the physic, the physical symptoms come in as well.

It can feel very overwhelming.

And you know, I think what's interesting is what you said.

There's a hypermobility spectrum disorder so we can sort of see the presentation of symptoms.

But like you say, if it's a spectrum, it may be incredibly debilitating and life altering or it could just be something that we live with that's uncomfortable, but our life doesn't really change.

Is that, you know, is that what you're seeing?

A lot of and you're seeing this sort of spectrum.

And does it have any impact of how your neurodivergence shows up?

Oh, I see.

Well, those are really interesting questions.

And I don't actually know.

I don't think we know all of the answers to them.

So I think the thing about hypermobility, just like neurodivergence, is that it comes with both strengths and challenges.

And we have to, we have to take that into consideration.

So, for example, an odd strength of hypermobility is having skin that looks more youthful.

So I don't know if many of the listeners have ever been in the position of being, you know, asked for ID in the supermarket when they're in their 30s or 40s because they have this type of skin that looks soft and youthful.

And that means that actually sometimes people can look younger than they seem.

There are some piano pieces and pieces of music that can only be played by people with hypermobile fingers.

And if you watch, you know, the gymnastics or tennis, you can see how having hypermobility can be a real advantage in certain scenarios.

But at the same time, it comes with challenges.

And those challenges are on a spectrum.

And so the biggest ones that people seem to contend with really are things like pain and fatigue and other issues like, and they may be all interrelated things like gut issues, you know, irritable bowel, irritable bladder, asthma, and then this whole phenomenon of things like dizziness on standing, dizziness after eating a large meal, dizziness after being in a hot environment, which we can talk about a bit more later, because this is all to do with abnormalities of the involuntary nervous system.

And then there are other, other issues.

So with hypermobility, some of the work that we've been doing has been about anxiety.

So hypermobile people are more likely to experience anxiety than non hypermobile people.

And we know that a lot of neurodivergent people experience anxiety too.

So there are all sorts of intersects and overlaps both between the brain and the body, between strengths and challenges, and between hypermobility and neurodivergence in general.

Now, what we know about hypermobility and neurodivergence is actually very much in its infancy.

It's very, very early on.

So what we know from a whole population study in Sweden, where they have very good health records, is that if you had an EDS diagnosis or equivalent, you were seven times more likely to have an autism diagnosis and five times more likely to have an ADHD diagnosis.

Now, that is almost certainly the tip of the iceberg, because you can imagine how hard it is to be diagnosed with both.

There will be so many people who actually experience EDs who do not have a diagnosis, and many neurodivergent people who are neurodivergent who do not have a diagnosis.

So I suspect those figures are actually quite conservative.

Yeah.

Because they are only.

Only what was available in the registry.

But what we know from the work that we did is that if you were neurodivergent, you were twice, you were, you were four times as likely to be hypermobile than if you were not neurodivergent.

Now, when I say hypermobile in that context, I don't mean symptomatic hypermobility.

I just mean the presence of generalized joint hypermobility.

Yeah.

So there is so much more work to be done in terms of exactly how many people.

Well, discovering for a start, exactly how many people have heds.

We have no idea.

We literally have no idea what the prevalence of HEDs is.

We know from quite robust population studies what the prevalence of generalized joint hypermobility is.

We know that that affects probably one in five people, maybe even up to one in three women, but we really don't know how many of them are symptomatic.

I mean, it's absolutely fascinating.

I mean, first of all, I've written in my notes here that from what I have read, there's a much higher incidence of hypermobility and EDS in women.

Is that it's a much higher ratio.

Is it because it's.

Is it hormone driven?

Well, this is really interesting.

So, yes, there is a degree to which hormones affect connective tissue.

And we typically think that EDS and hypermobility is more common in women than men, and it certainly is more frequently diagnosed in women than men.

But I've been wondering.

I think it is more common in women than men, but I think that maybe we are not looking for it in men in the same way.

And that actually men may have hypermobile features that are often missed.

So they might have a thin, narrow wrists, which is part of the diagnostic criteria, but not part of the hypermobility screening.

They may have thin faces with narrow features.

They may have soft, stretchy skin that bruises easily.

And these wouldn't necessarily be picked up in the, in the screenings.

And just as we are beginning to realize that actually neurodivergence probably affects men and women equally, there are studies suggesting that autism is just as common in females as in males.

And we know that what we thought, what I was taught at medical school, you know, kind of nine times more likely to be male.

If you're autistic and, and the same with ADHD is actually not true.

We may find that this is actually the case with hypermobility too in the future, but that is a real big conjecture.

But there is undoubtedly whatever is actually going on.

There is strong influences of hormones on hypermobility symptoms, but that is not well researched or properly understood.

But we know from clinical encounters talking to patients that some of the hypermobility associated symptoms, so things like pain, dizziness, gut problems, they all can have menstrual fluctuations.

And sometimes just.

Just as people find the same with their ADHD features or their sensory sensitivities, just as we find that in neurodivergence, we find the same thing in hypermobility.

Yeah, I mean, from a personal perspective, I've had chronic lower back pain for many, many years, exacerbated, I think, you know, from pregnancy.

And I notice that the last week of my cycle it flares up a lot more.

But I also notice that any tension, any sort of negative energy outside, any time I'm stressed because, and I say I'm speaking for sort of a lot of the neurodivergent community, our external situation environment has a huge impact on how we hold tension and stress in our body.

The trauma so many of us have gone through and it's so nuanced, isn't it?

And you know, for someone like you who's got this sort of highly trained eye, the fact that you can sort of see in face shape, in wrists and ankles and I mean, I don't think you said ankles, but wrists and I just think that, you know, this is what the level of.

I don't even know if it's misdiagnosis.

It's just that people just aren't being diagnosed.

No, the amount of times I've been to different physios and have asked, you know, now that I'm a little bit more kind of, you know, knowledgeable, I've said, you know, asked about hypermobility, asked about how can you check and really kind of being told so many different things.

But the words hypermobility have never come out from, you know, an osteopath, from a physio.

It's constantly me going, you know, and then you almost feel a little bit invalidated and dismissed because it's like, oh, here we go again, you know.

But I know my body and I know how it presents and how I feel all this stress.

And every time I've ever had a massage, this continual kind of feedback has been, oh my goodness, why are you so stressed?

Why are you so tense?

I've never felt your glutes.

I've never felt glutes so tight.

I've never felt shoulders so stressed.

And it's almost like they're sort of saying it a jokey way, but it's like, no, no, this is my body, this is how it's always been.

And, you know, I see it presented in one or two of my kids.

I can see it presented in, you know, generations above me who have had a lot of chronic pain in their life.

And, you know, you mentioned the word prolapse.

You know, one of them had a very severe prolapse, unfortun, you know, opiate addictions because of the pain.

And so this is very, very real.

And my family, I don't think, is any different to so many people that I speak to.

And so how can we start turning this dial now like this?

I hope this conversation goes out to thousands of people and I hope by having this conversation there are connections that people can start making.

But when they go to their care providers, how can we start getting the diagnosis, the testing, the understanding, the validation.

So though things can start progressing for.

Us, it's really hard and unfortunately, services are not ideally configured at the moment.

Essentially, if you suspect you may be hypermobile, there are some really good resources for GPs from the EDS UK website called the EDS GP Toolkit, and I'm sure you'll be able to link to that.

And that supports doctors, including GPs, to make a hypermobility diagnosis and to help manage commonly associated symptoms.

So things like the dizziness on standing that we were talking about, the postural tachycardia syndrome, and also some allergy things that people experience called mast cell activation.

So this resource does help doctors to understand about hypermobility more, but many of them will probably say, oh, if you want a diagnosis, you've got to see a rheumatologist.

And unfortunately, the waiting times in the UK for seeing rheumatology are very long.

And some rheumatology services are saying, we don't see people with EDS, we're not diagnosing HETS, it's not part of our pathway.

So there can be some obstacles.

But what we know from research that we've done is that a lot of people actually end up with a diagnosis of fibromyalgia, when in fact, probably at least 4/5 of people with fibromyalgia actually have symptomatic hypermobility.

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Now back to today's podcast.

So when you're saying that rheumatologists aren't diagnosing, then, then what happens?

You know, is there genetic testing, is there self dou diagnosis?

I mean, how, how do people get help?

It is a, it is a real minefield and I would encourage people to look for help from the EDS Society.

And also I am the patron of a Sussex charity called SEDS Connective that is specifically there to support and advocate for hypermobile neurodivergent people.

So I think people essentially have to be empowered to think things through themselves because of the way that services are constructed.

There is also a really good book by someone called Claire Smith about understanding hypermobile EDS and hypermobility spectrum disorder.

And I would strongly recommend that anyone who thinks they may have symptomatic hypermobility read that book and then see all of the, all of the possible connections with physical health things.

It was written a few years ago, so it doesn't really have much to say about neurodivergence and mental health associations, but it is a really good starting point and then you can and something to take to the GP and say, look, I've been reading this and this is what I'm finding.

I think knowledge is power, education is power.

We need to continually bring this knowledge to the attention of our healthcare providers.

And sometimes people write to me and say, why doesn't my doctor know this?

And actually this is pretty fresh knowledge and if you think about it, it often takes for scientific discoveries 10 or 15 years for them to trickle down into generally accepted medical practice.

So although it is frustrating, it is new knowledge.

It will take time for it to get out there, but we are trying our best.

I often speak to groups of clinicians, maybe even once or twice a week, give talks to interested hospitals, interested teams.

So we really are Trying to spread the word, but we need somehow to shift the conversation up a notch onto the national policy level, I think.

Yeah, yeah.

Especially because how common chronic pain is, you know, and just sort of being having this umbrella of chronic pain.

You know, I've got a very good friend of mine, a psychologist doctor and her speciality is chronic pain and I had a chat with her before this podcast and she said she has seen quite a lot of patients that have come in who suspect they have hypermobility, but she's not had any training in this.

So she's sort of just there as an emotional support to try and help, you know, with well being and self care.

But she, you know, if that's her speciality is chronic pain and she's seeing a huge amount of people coming in with fibromyalgia and CFS and things like that, you know, you'd think that it has to be trickled down.

It has to go into the hospitals and the, and people who are training, you know, new doctors.

And what's interesting is that what you said about takes 10 to 15 years for new understanding to come through in the medical practice is, you know, neurodivergence in adults has only just started to being, you know, understood in the past 15 years.

And you know, and then obviously for women in the past five years, just for me working in this space over the past three and a bit years now, it's gone.

You know, so much has changed in three years.

Yes.

So I think we are hopefully going to reach a tipping point.

Hopefully, yeah.

And the fact that there's this toolkit that we can download on the EDS UK website where unfortunately right now we're having to advocate for ourselves and I say this a lot to my community is you need to go into, you know, your doctors and you need to advocate for yourself and print out what your neurodivergence looks like.

You know, and they were saying, you know, menopause has been around for forever, but we still as women advocating for ourselves.

And I do a lot of work with ADHD and hormones and I've created this series, this project of speaking to lots of different experts about the connection between, you know, especially with, you know, women and ADHD and hormones and we're literally just plucking at straws here.

We're working on the ground.

We are, it's anecdotal, doctors are making connections, but we're trying to deliver what we can so women can start understanding themselves.

And I wonder if you've got anything specifically.

I know we Talked about the hormonal connection and you know, maybe to do with sort of estrogen and high levels or lower levels, but around pregnancy and if that has any impact on the symptoms of our hypermobility?

Well, yeah, no.

So I mean, a bit like neurodivergence, pregnancy can unmask hypermobility.

Some people say it's the best thing to ever happen to their hypermobility and other people say this is when they really realized about all of the challenges that they were facing from a hypermobile perspective.

So no one person's experience is going to be the same.

But there are definitely interesting hypermobility related phenomena in pregnancy.

So a lot of people get this pelvic, this symphysis dysfunction.

People may suffer with low blood pressure.

There are associations with hypermobility and preterm birth or difficult labors.

In fact, there's a whole wealth of information, a couple of papers published recently about hypermobility and pregnancy.

And if you are hypermobile and pregnant, it may well.

Or thinking of becoming pregnant, it may well be worth giving those resources to your care team.

Okay, thank you.

And also when you're in your different kind of capacity with your different hat, and when you're diagnosing people with ADHD and or autism, is there a checklist now of bringing in hypermobility?

Like are we able to sort of see the physical signs where chronic pain, ibs, gut problems, like why, why is it still quite archaic the way the DSM 5 is categorizing how.

Yeah, like do you want to see that in the diagnostic process?

I would definitely want to see it in the diagnostic process.

And certainly when we make diagnoses, we are always looking out for physical health things that might point towards hyper, hypermobility.

Do I think that hypermobility should be part of the diagnostic criteria for ADHD and autism?

I don't think all neurodivergent people are hypermobile or all hypermobile people are neurodivergent.

So I don't think it should necessarily be in the diagnostic criteria, but I think it should.

If you see one, you should think of the other.

So say if you are, if you're seeing a neurodivergent person, you should think, oh, are they hypermobile?

If you're seeing a hypermobile person, you should think, ah, are they neurodivergent?

And because so many of the people that we see, particularly the women in our autism, ADHD Tourette syndrome service, are hypermobile, we've actually set up the world's first neurodivergent Brain Body Clinic in Sussex.

So people who have received a diagnosis of a neurodivergent diagnosis in Sussex adults can come and see us and have a hypermobility assessment.

And we run psychoeducation sessions and some interventions and consultations for people who are having difficulty interacting with the medical sphere and provide advocacy for them.

Quite a few of the people that we've been seeing recently have been experiencing fatigue and definitely queries around long Covid.

Yes.

Yeah.

And actually, I can't tell you the results, but we've recently conducted a study, a large study, about 3,000 people, to look at the link between hypermobility and not recovering from COVID which is currently under review.

So we'll be able to speak more about that in the.

In the future.

But in our clinical practice, people really do seem to be.

Pain is a big factor.

How to get onto a pain management program that understands you and also what to do about brain fog and debilitating fatigue.

And often it seems to be related to underlying differences in the involuntary nervous system that manifest as dizziness on standing or dizziness and palpitations after a big meal or after being in a hot environment.

And the thing is, and those, those are potential indicators of something called postural tachycardia syndrome.

And we know that the majority of symptomatic hypermobility patients experience some form of difficulty with standing in terms of orthostatic intolerance.

And we know that people who have postural tachycardia syndrome, the majority of them have symptomatic hypermobility.

So if you, if you can help, get help to manage that.

And there are lots of lifestyle things that you can do as well as medications, so things like compression garments, increasing your hydration, increasing your salt intake, within reason, obviously, there's some really invaluable resources on the POTS UK website about how to.

How to help manage these type of symptoms.

Some people find that this really improves their fatigue and we know that people developing long Covid, about 50% of people developing long Covid end up having some form of orthostatic intolerance.

So there seems to be some sort of definite link here between fatigue, postural tachycardia syndrome and hypermobility.

It's fascinating to hear these different connections.

Interestingly, I have low blood pressure and I also get quite dizzy when I stand up quickly.

What you said about the salt, also, I have been starting to take a hydration sachet called LMN element and I'm not being paid to, you know, to say anything and it's very salty.

And it's helped.

It's meant to help with energy and fatigue and I've really noticed a difference.

And so I've got another daughter who's 15 and I've been trying to give it to her because she has adhd, but she has more of sort of the fatigue around it.

And when she acknowledges, you know, taking it and says, yes, I'll take it, she has noticed sort of more clarity and more cognitive function.

Yeah.

And so I would say, anyone, if you're looking for something like that, this element, sort of an L, M N T is great.

I put it in a water bottle and it's.

You've got something there, I can see.

Yeah.

This is something called high five and electrolyte sports capsules.

So the problem is sometimes people think I need to hydrate, I need to drink lots of water.

But actually that can put you into a worse position because you just pee it out.

What you need is for your hydration to be electrolyte balanced.

And what, I mean, what some people notice, and I've certainly noticed myself, is sometimes, I don't know, you know, you think about the afternoon slump about 2:30 in the afternoon or so suddenly intensely craving something salty.

It may well be that that is your body saying you need more salt.

Yeah, it's really interesting.

Just little things like that, little tweaks of what you're saying sort of lifestyle wise, you know, what you're saying about your, your new clinic and you're focusing on the psychoeducation where we are kind of having to be the experts in our own health.

So if someone's listening right now and they haven't obviously got access to this clinic, maybe they haven' to sort of getting the help and support.

What can they do right now?

If they are maybe suspecting they've got, you know, hypermobility spectrum, maybe it's sort of showing up in a way that's every day, but they're still managing sort of function, but life's difficult.

Like what, what can they be doing right now?

I think getting as much resource as they can.

So the things like the EDS UK website, the POTS UK website, the Classmate myth book, and I think really trying to learn about their own triggers and also to, to keep moving, but to make sure that you pace yourself in a really, really wise and gentle way.

Because I think a lot of neurodivergent people have a tendency to be all or nothing.

So it's either doing all of the things all at once or nothing at all and actually Trying to get some balance of.

Okay, so I have this task that I need to do.

I'm going to try and do one of them and then maybe build up to one and a half rather than going from one task to ten and then crash and burning.

It's hard, it's hard for neurodivergent people.

But I think there is a lot of patterns of, of, you know, getting into cycles of hyperactivity and exhaustion that probably compound and worsen pain and other, other symptoms.

Trying to get that balance is really, really important.

Not doing too much and not doing too little.

Yeah, I mean obviously we're, you know, I talk about doing things, you know, somatic work, whether it's stretching, that's yoga, it's anything else.

Sort of actual sort of somatic experience where we're just kind of trying to be sort of more in our bodies.

I mean do you see a lot of people who are hyper mobile that are.

I mean I've noticed that when I do yoga I can just do one move and that's it.

I've like hurt my hip, hurt my back.

What, what would you suggest for people that do want to be active and needing to be active because of the restless energy?

Well, it's interesting and I myself when I was at medical school, went on a pain management program and learned about some of these techniques from the other side as a patient.

And I think it's about doing it in a gentle way that encourages strength and stabilization with someone who understands the hypermobile body.

So I think yoga can be really helpful.

But I think sometimes a hypermobile person can easily overstretch.

So I would possibly recommend quite basic Pilates over yoga in the first instance.

And when you, because the core, getting that stable core is so important for so many things and just taking it really gently, not trying to do all of the moves all of the time, just really focusing on getting the basic moves right I think is important.

And also trying to keep up some exercise and activity.

If it's something like swimming for example, that is non load bearing but is an important, non harmful way of, of exercising.

Yeah, I mean Pilates for sure has helped me now.

I resisted it for years and years because it was a bit, I found it a bit boring, but actually that has.

Boring and safe sometimes.

Yeah, yeah.

And like for me I enjoyed the yoga.

I enjoyed the flow, I enjoyed, enjoyed the music and Pilates just felt a little bit clinical.

However, I had like a really horrendous back injury about 18 months ago and I've been recovering ever since and the Pilates has been the thing that stopped me from going back there.

And especially when I can start feeling the pain, I go and do my Pilates and it really, really does help.

So I don't want to sort of end this, this conversation feeling sort of despondent and like there isn't the care there.

But if people are listening in different countries and they often go to a physio or they often go to an osteopath, if they can educate them and say, listen, this is what I think it is, I'm neurodivergent and there's a high, high incidence of hypermobility with neurodivergence.

Can you go off and have a read and then maybe we can come up with a plan that isn't so dry for other patients?

No, I think that's what we have to start doing.

Absolutely.

And although it is great that we have the clinic here in Sussex, hopefully that will be an example for other clinics across the world and that by flying this flag, others will hopefully follow suit.

But I think as we've been talking about, knowledge is power and also so many people have to have to take control of the situations themselves and advocate for themselves.

And unfortunately, I think that is the only way that we're going to make progress at the moment is through the patient community and spreading awareness whilst we try and raise awareness at a much higher level, you know, in government, in medical education, in healthcare education.

So we need to do this together.

Yeah, absolutely.

I obviously am not an expert in this, but from what I know, from helping myself and others around me is because we absorb so much and especially with the state of the world right now and how we can be so impacted by everything that's going on around us and we absorb stress and trauma and all the things the negative energy is, we need to protect ourselves probably more than others with our boundaries, our social media, watching the news, being more aware of how helpful self care can be, whether that is just time in nature, time out, away from technology, surrounding yourself by those people.

And it might just seem very small and insignificant if you are in a lot of pain, but having these little kind of glimmers, these little tools that do feel like we've got more empowerment of where we say no, like who we let into our environment and what we're listening to, what we're watching, what we're scrolling like, these, all these little things I do believe can have an impact and hopefully have an impact on our pain levels.

Absolutely.

I mean, there is no magic bullet for any of these things.

And it is all about a series of small steps taken to try and get that balance that we were talking about.

And so if that means not plowing through, you know, three hour meeting in pain, but instead going out and having a walk and just connecting with nature for five minutes and that's, that's what you, that's what you've got to do.

If it means listening to like a soothing song or something on the television that you really appreciate and enjoy rather than scrolling through social media, then, then do it.

We need rest and recovery as much as pushing through and trying to break these habits of kind of doing too much and then not being able to do anything is really important.

Yeah, definitely.

As we see sort of more cycles of burnout in our community as well.

And really being very mindful of how we work, we live, sometimes it feels not very realistic, but there are, there are ways around that.

Definitely the choices, the everyday choices that we make that we, we like.

You say, you know, if you've got a three hour meeting, how can we break that up?

Choosing our diary more carefully and really being so specific with every day, like how can I start bringing in more sort of mindful self care practices?

Because that is, you know, for the rest of our life we're going to live with this.

But every day we make these choices.

And so please anyone that's listening, don't feel despondent.

Dr.

Jessica Eccles, I can't thank you enough for your work for the community and for all the groundbreaking research that you're doing that I hope will disseminate across the world and doctors and specialists will learn from you and what you're doing in Sussex because I think it's very much needed.

So I just wanted to thank you.

I presume you don't want me to direct anyone towards you because I know how busy you are.

No, but I can.

I have a link tree.

So if you just look at linktree or slash Bendy Brain, there are loads of videos, podcasts, articles, so please, please do have a look and see what takes your fancy.

Wonderful.

Okay, thank you so much, Kate for inviting me.

And we hopefully together, all of us can play a part in spreading the word.

I really hope you enjoyed this week's episode.

If you did and it resonated with you, I would absolutely love it if you could share on your platforms or maybe leave a review and a rating wherever you listen to your podcasts.

And please do check out my website, ADHD womenswellbeing.co.uk for lots of free resources and paid for workshops.

I'm uploading new things all the time and I would absolutely love to see you there.

Take care and see you for the next episode.