Kate Moore Youssef

Welcome to the ADHD Women's Wellbeing Podcast.

Kate Moore Youssef

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.

Kate Moore Youssef

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.

Kate Moore Youssef

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.

Kate Moore Youssef

Here's today's episode.

Kate Moore Youssef

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

Kate Moore Youssef

And.

Kate Moore Youssef

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.

Kate Moore Youssef

We've got Dr.

Kate Moore Youssef

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

Kate Moore Youssef

So I just wanted to welcome Dr.

Kate Moore Youssef

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

Dr. Jessica Echols

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

Dr. Jessica Echols

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

Dr. Jessica Echols

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

Dr. Jessica Echols

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.

Dr. Jessica Echols

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

Dr. Jessica Echols

And I've been working in the field of hypermobility here at Brighton and Sussex Medical School with colleagues since 2009.

Dr. Jessica Echols

And I have been.

Dr. Jessica Echols

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

Dr. Jessica Echols

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.

Kate Moore Youssef

Yeah, absolutely.

Kate Moore Youssef

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.

Kate Moore Youssef

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

Kate Moore Youssef

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.

Kate Moore Youssef

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.

Kate Moore Youssef

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

Kate Moore Youssef

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.

Kate Moore Youssef

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

Kate Moore Youssef

Ehlers Danlos syndrome.

Dr. Jessica Echols

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

Dr. Jessica Echols

So hypermobility describes joints that are unusually flexible.

Dr. Jessica Echols

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

Dr. Jessica Echols

So the building blocks of how the body is buil.

Dr. Jessica Echols

Some people have hypermobility.

Dr. Jessica Echols

And this can be an advantage.

Dr. Jessica Echols

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.

Dr. Jessica Echols

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

Dr. Jessica Echols

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

Dr. Jessica Echols

Some people who are hypermobile, they have other features.

Dr. Jessica Echols

So they may have pain, they may have dislocations.

Dr. Jessica Echols

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

Dr. Jessica Echols

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

Dr. Jessica Echols

They may have things like hernias, prolapses.

Dr. Jessica Echols

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

Dr. Jessica Echols

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

Dr. Jessica Echols

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

Dr. Jessica Echols

There are, in fact, 13 or 14.

Dr. Jessica Echols

It's under debate.

Dr. Jessica Echols

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

Dr. Jessica Echols

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

Dr. Jessica Echols

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

Dr. Jessica Echols

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

Dr. Jessica Echols

But we know that it runs in families.

Dr. Jessica Echols

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

Dr. Jessica Echols

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?

Dr. Jessica Echols

And then there's hypermobility with symptoms.

Dr. Jessica Echols

So symptomatic hypermobility.

Dr. Jessica Echols

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.

Dr. Jessica Echols

So there are lots of.

Dr. Jessica Echols

This is Alphabet soup basically.

Dr. Jessica Echols

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

Dr. Jessica Echols

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

Dr. Jessica Echols

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

Dr. Jessica Echols

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.

Dr. Jessica Echols

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.

Dr. Jessica Echols

So that is maybe even more confusing.

Dr. Jessica Echols

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

Dr. Jessica Echols

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

Kate Moore Youssef

So thank you so much for explaining all that.

Kate Moore Youssef

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.

Kate Moore Youssef

It can feel very overwhelming.

Kate Moore Youssef

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

Kate Moore Youssef

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

Kate Moore Youssef

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.

Kate Moore Youssef

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

Kate Moore Youssef

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

Kate Moore Youssef

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

Dr. Jessica Echols

Oh, I see.

Dr. Jessica Echols

Well, those are really interesting questions.

Dr. Jessica Echols

And I don't actually know.

Dr. Jessica Echols

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

Dr. Jessica Echols

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

Dr. Jessica Echols

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

Dr. Jessica Echols

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

Dr. Jessica Echols

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.

Dr. Jessica Echols

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

Dr. Jessica Echols

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

Dr. Jessica Echols

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

Dr. Jessica Echols

But at the same time, it comes with challenges.

Dr. Jessica Echols

And those challenges are on a spectrum.

Dr. Jessica Echols

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.

Dr. Jessica Echols

And then there are other, other issues.

Dr. Jessica Echols

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

Dr. Jessica Echols

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

Dr. Jessica Echols

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

Dr. Jessica Echols

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.

Dr. Jessica Echols

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

Dr. Jessica Echols

It's very, very early on.

Dr. Jessica Echols

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.

Dr. Jessica Echols

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

Dr. Jessica Echols

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.

Dr. Jessica Echols

So I suspect those figures are actually quite conservative.

Kate Moore Youssef

Yeah.

Dr. Jessica Echols

Because they are only.

Dr. Jessica Echols

Only what was available in the registry.

Dr. Jessica Echols

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.

Dr. Jessica Echols

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

Dr. Jessica Echols

I just mean the presence of generalized joint hypermobility.

Dr. Jessica Echols

Yeah.

Dr. Jessica Echols

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

Dr. Jessica Echols

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

Dr. Jessica Echols

We have no idea.

Dr. Jessica Echols

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

Dr. Jessica Echols

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

Dr. Jessica Echols

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.

Kate Moore Youssef

I mean, it's absolutely fascinating.

Kate Moore Youssef

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.

Kate Moore Youssef

Is that it's a much higher ratio.

Kate Moore Youssef

Is it because it's.

Kate Moore Youssef

Is it hormone driven?

Dr. Jessica Echols

Well, this is really interesting.

Dr. Jessica Echols

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

Dr. Jessica Echols

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.

Dr. Jessica Echols

But I've been wondering.

Dr. Jessica Echols

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.

Dr. Jessica Echols

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

Dr. Jessica Echols

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

Dr. Jessica Echols

They may have thin faces with narrow features.

Dr. Jessica Echols

They may have soft, stretchy skin that bruises easily.

Dr. Jessica Echols

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

Dr. Jessica Echols

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.

Dr. Jessica Echols

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.

Dr. Jessica Echols

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

Dr. Jessica Echols

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

Dr. Jessica Echols

But there is undoubtedly whatever is actually going on.

Dr. Jessica Echols

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

Dr. Jessica Echols

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.

Dr. Jessica Echols

And sometimes just.

Dr. Jessica Echols

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.

Kate Moore Youssef

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.

Kate Moore Youssef

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

Kate Moore Youssef

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.

Kate Moore Youssef

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

Kate Moore Youssef

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.

Kate Moore Youssef

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

Kate Moore Youssef

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

Kate Moore Youssef

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.

Kate Moore Youssef

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

Kate Moore Youssef

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.

Kate Moore Youssef

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

Kate Moore Youssef

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

Kate Moore Youssef

Why are you so tense?

Kate Moore Youssef

I've never felt your glutes.

Kate Moore Youssef

I've never felt glutes so tight.

Kate Moore Youssef

I've never felt shoulders so stressed.

Kate Moore Youssef

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.

Kate Moore Youssef

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

Kate Moore Youssef

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

Kate Moore Youssef

And, you know, you mentioned the word prolapse.

Kate Moore Youssef

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

Kate Moore Youssef

And so this is very, very real.

Kate Moore Youssef

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

Kate Moore Youssef

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

Kate Moore Youssef

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.

Kate Moore Youssef

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

Kate Moore Youssef

So though things can start progressing for.

Dr. Jessica Echols

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

Dr. Jessica Echols

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.

Dr. Jessica Echols

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

Dr. Jessica Echols

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.

Dr. Jessica Echols

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.

Dr. Jessica Echols

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

Dr. Jessica Echols

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.

Dr. Jessica Echols

So there can be some obstacles.

Dr. Jessica Echols

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.

Kate Moore Youssef

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Kate Moore Youssef

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Kate Moore Youssef

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Kate Moore Youssef

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Kate Moore Youssef

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Kate Moore Youssef

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Kate Moore Youssef

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Kate Moore Youssef

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Kate Moore Youssef

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Kate Moore Youssef

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Kate Moore Youssef

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Kate Moore Youssef

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Kate Moore Youssef

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Kate Moore Youssef

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Kate Moore Youssef

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Kate Moore Youssef

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Kate Moore Youssef

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Kate Moore Youssef

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Kate Moore Youssef

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Kate Moore Youssef

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Kate Moore Youssef

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Kate Moore Youssef

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Kate Moore Youssef

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Kate Moore Youssef

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Kate Moore Youssef

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Kate Moore Youssef

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Kate Moore Youssef

Now back to today's podcast.

Kate Moore Youssef

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

Kate Moore Youssef

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

Kate Moore Youssef

I mean, how, how do people get help?

Dr. Jessica Echols

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

Dr. Jessica Echols

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.

Dr. Jessica Echols

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

Dr. Jessica Echols

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

Dr. Jessica Echols

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.

Dr. Jessica Echols

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.

Dr. Jessica Echols

I think knowledge is power, education is power.

Dr. Jessica Echols

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

Dr. Jessica Echols

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

Dr. Jessica Echols

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.

Dr. Jessica Echols

So although it is frustrating, it is new knowledge.

Dr. Jessica Echols

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

Dr. Jessica Echols

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

Dr. Jessica Echols

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.

Kate Moore Youssef

Yeah, yeah.

Kate Moore Youssef

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

Kate Moore Youssef

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.

Kate Moore Youssef

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

Kate Moore Youssef

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.

Kate Moore Youssef

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

Kate Moore Youssef

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.

Kate Moore Youssef

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.

Kate Moore Youssef

You know, so much has changed in three years.

Dr. Jessica Echols

Yes.

Dr. Jessica Echols

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

Dr. Jessica Echols

Hopefully, yeah.

Kate Moore Youssef

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.

Kate Moore Youssef

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

Kate Moore Youssef

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.

Kate Moore Youssef

We're working on the ground.

Kate Moore Youssef

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

Kate Moore Youssef

And I wonder if you've got anything specifically.

Kate Moore Youssef

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?

Dr. Jessica Echols

Well, yeah, no.

Dr. Jessica Echols

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

Dr. Jessica Echols

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.

Dr. Jessica Echols

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

Dr. Jessica Echols

But there are definitely interesting hypermobility related phenomena in pregnancy.

Dr. Jessica Echols

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

Dr. Jessica Echols

People may suffer with low blood pressure.

Dr. Jessica Echols

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

Dr. Jessica Echols

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

Dr. Jessica Echols

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

Dr. Jessica Echols

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

Kate Moore Youssef

Okay, thank you.

Kate Moore Youssef

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?

Kate Moore Youssef

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.

Kate Moore Youssef

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

Dr. Jessica Echols

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

Dr. Jessica Echols

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

Dr. Jessica Echols

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

Dr. Jessica Echols

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

Dr. Jessica Echols

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

Dr. Jessica Echols

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

Dr. Jessica Echols

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

Dr. Jessica Echols

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

Dr. Jessica Echols

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.

Dr. Jessica Echols

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

Dr. Jessica Echols

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.

Dr. Jessica Echols

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

Kate Moore Youssef

Yes.

Kate Moore Youssef

Yeah.

Dr. Jessica Echols

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.

Dr. Jessica Echols

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

Dr. Jessica Echols

In the future.

Dr. Jessica Echols

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

Dr. Jessica Echols

Pain is a big factor.

Dr. Jessica Echols

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

Dr. Jessica Echols

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.

Dr. Jessica Echols

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

Dr. Jessica Echols

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

Dr. Jessica Echols

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

Dr. Jessica Echols

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

Dr. Jessica Echols

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.

Dr. Jessica Echols

How to help manage these type of symptoms.

Dr. Jessica Echols

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.

Dr. Jessica Echols

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

Kate Moore Youssef

It's fascinating to hear these different connections.

Kate Moore Youssef

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

Kate Moore Youssef

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.

Kate Moore Youssef

And it's helped.

Kate Moore Youssef

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

Kate Moore Youssef

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.

Kate Moore Youssef

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.

Dr. Jessica Echols

Yeah.

Kate Moore Youssef

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.

Kate Moore Youssef

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

Kate Moore Youssef

You've got something there, I can see.

Dr. Jessica Echols

Yeah.

Dr. Jessica Echols

This is something called high five and electrolyte sports capsules.

Dr. Jessica Echols

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

Dr. Jessica Echols

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

Dr. Jessica Echols

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

Dr. Jessica Echols

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.

Dr. Jessica Echols

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

Kate Moore Youssef

Yeah, it's really interesting.

Kate Moore Youssef

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.

Kate Moore Youssef

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.

Kate Moore Youssef

What can they do right now?

Kate Moore Youssef

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.

Kate Moore Youssef

Like what, what can they be doing right now?

Dr. Jessica Echols

I think getting as much resource as they can.

Dr. Jessica Echols

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.

Dr. Jessica Echols

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

Dr. Jessica Echols

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

Dr. Jessica Echols

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

Dr. Jessica Echols

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.

Dr. Jessica Echols

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

Dr. Jessica Echols

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.

Dr. Jessica Echols

Trying to get that balance is really, really important.

Dr. Jessica Echols

Not doing too much and not doing too little.

Kate Moore Youssef

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.

Kate Moore Youssef

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

Kate Moore Youssef

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

Kate Moore Youssef

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

Kate Moore Youssef

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

Kate Moore Youssef

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

Dr. Jessica Echols

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.

Dr. Jessica Echols

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

Dr. Jessica Echols

So I think yoga can be really helpful.

Dr. Jessica Echols

But I think sometimes a hypermobile person can easily overstretch.

Dr. Jessica Echols

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

Dr. Jessica Echols

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.

Dr. Jessica Echols

And also trying to keep up some exercise and activity.

Dr. Jessica Echols

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

Kate Moore Youssef

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

Kate Moore Youssef

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

Dr. Jessica Echols

Boring and safe sometimes.

Kate Moore Youssef

Yeah, yeah.

Kate Moore Youssef

And like for me I enjoyed the yoga.

Kate Moore Youssef

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

Kate Moore Youssef

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.

Kate Moore Youssef

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

Kate Moore Youssef

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

Kate Moore Youssef

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.

Kate Moore Youssef

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?

Dr. Jessica Echols

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

Dr. Jessica Echols

Absolutely.

Dr. Jessica Echols

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.

Dr. Jessica Echols

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.

Dr. Jessica Echols

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.

Dr. Jessica Echols

So we need to do this together.

Kate Moore Youssef

Yeah, absolutely.

Kate Moore Youssef

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.

Kate Moore Youssef

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.

Dr. Jessica Echols

Absolutely.

Dr. Jessica Echols

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

Dr. Jessica Echols

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

Dr. Jessica Echols

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.

Dr. Jessica Echols

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.

Dr. Jessica Echols

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.

Kate Moore Youssef

Yeah, definitely.

Kate Moore Youssef

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

Kate Moore Youssef

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.

Kate Moore Youssef

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

Kate Moore Youssef

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

Kate Moore Youssef

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?

Kate Moore Youssef

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

Kate Moore Youssef

But every day we make these choices.

Kate Moore Youssef

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

Kate Moore Youssef

Dr.

Kate Moore Youssef

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.

Kate Moore Youssef

So I just wanted to thank you.

Kate Moore Youssef

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

Dr. Jessica Echols

No, but I can.

Dr. Jessica Echols

I have a link tree.

Dr. Jessica Echols

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.

Kate Moore Youssef

Wonderful.

Dr. Jessica Echols

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

Dr. Jessica Echols

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

Kate Moore Youssef

I really hope you enjoyed this week's episode.

Kate Moore Youssef

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.

Kate Moore Youssef

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

Kate Moore Youssef

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

Kate Moore Youssef

Take care and see you for the next episode.