Looking for further guidance and support on ADHD Women's Wellbeing? Check out my resource library here. The 'ADHD Women's Wellbeing Workshop Series' is on offer this July. Head here to learn more about the workshops and use code JULY to get 35% off.

If you've been told your pain is growing pains, anxiety or just something you need to live with, this episode might be the beginning of finally understanding what's actually been going on in your body.

On this week's episode of The ADHD Women's Wellbeing Podcast, I'm joined by Alexandra Orfanides, a London-based hypermobility specialist osteopath and founder of Hypermobility HQ.

Alexandra hosts the Help! I'm Hypermobile podcast and is the author of the book of the same name. She believes that "incurable" does not mean "untreatable," and she's on a mission to help the hypermobile community feel seen, supported, and informed.

In this episode, Alex and I talk about the significant overlap between hypermobility and neurodivergence, why so many women spend decades being dismissed or misdiagnosed, and what it actually means to understand your body through this lens. We also get into the difference between osteopathy and physiotherapy, how to recognise signs of hypermobility in children, and why self-treatment strategies are such a crucial part of managing a connective tissue condition day-to-day.

In this episode, we cover:

• What hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorder actually are, and why the terminology matters
• Why growing pains are not a real diagnosis, and what to look for in children instead
• The strong correlation between hypermobility, ADHD and neurodivergence
• How conditions like endometriosis, PCOS and dysmenorrhea overlap with hEDS and HSD
• Why gastrointestinal issues in children should never just be dismissed as IBS
• The difference between osteopathy and physiotherapy, and how to find the right practitioner
• How chronic pain, headaches and migraines can be connected to hypermobile connective tissue
• Why rhythmic movement, including swimming and dancing, can be so regulating for hypermobile and neurodivergent bodies
• The importance of self-treatment strategies for people who can't always access clinic appointments
• Why a diagnosis is a privilege, and how Help! I'm Hypermobile was written to reach the people who couldn't afford one

Timestamps:

00:00 - Welcome, and introducing Alexandra Orfanides

01:40 - Alex's personal story: growing up with undiagnosed pain

05:52 - From English literature to osteopathy

09:45 - Why hypermobility patients kept finding their way to Alex's clinic

11:46 - The overlap between hypermobility, ADHD and neurodivergence

14:12 - Osteopathy vs physiotherapy: what's the difference?

17:36 - Terminology: hEDS, HSD, condition vs disorder

20:30 - What patients are coming in knowing, and what they're not

23:57 - Signs to look for in children: growing pains, gut issues and more

28:15 - Endometriosis, PCOS and hormonal conditions in hypermobile bodies

30:39 - Migraines, headaches and the connection to the neck and connective tissue

36:32 - The gatekeeping problem and self-treatment strategies

39:24 - Working as a team with your patients

43:35 - Why Alex wrote Help! I'm Hypermobile

45:42 - How to work with Alex and what to expect

Links and Resources:

• Find my popular ADHD workshops and resources on my website [here].
• Follow the podcast on Instagram: @adhd_womenswellbeing_pod
• Visit Alexandra's website: hypermobilityhq.com
• Connect with Alexandra on Instagram, YouTube, TikTok and Pinterest: @hypermobilityhq
• Listen to Alex's podcast: Help! I'm Hypermobile
• Get Alex's book: Help! I'm Hypermobile: Your How-To Guide for hEDS, HSD, and Life in a Hypermobile Body
• Research: Gynaecological conditions in hEDS and HSD (Daylor et al., 2025): https://doi.org/10.3390/jcm14165636
• Research: Defining growing pains — a scoping review (O'Keeffe et al., 2022): https://doi.org/10.1542/peds.2021-052578

Kate Moryoussef is a women's ADHD lifestyle and wellbeing coach and EFT practitioner who helps overwhelmed and unfulfilled newly diagnosed women with ADHD find more calm, balance, hope, health, compassion, creativity, and clarity.

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.

So.

Hi everyone.

Welcome back to another episode of the ADHD Women's Wellbeing Podcast.

I'm Kate Moore Youssef, your host here as always.

And today I am talking about a subject that we've talked about quite a few times on the podcast.

We're talking about hypermobility, we're talking about Ehlers Danlos, we're talking about the brain body connection and we're blending it all together with amazing, amazing knowledge from osteopath Alexandra Orphanages.

I hope I've just pronounced that correctly.

Alexandra is a London based hypermobility specialist.

Specialist osteopath.

She hosts Help I'm Hypermobile and has a book out the same name.

Alex believes incurable does not mean untreatable and she's on a mission to help the hypermobile community feel seen, supported and informed.

I've been so looking forward to this conversation.

Thank you so much for being here, Alexandra.

Thank you so much for having me.

I can't believe how time has flown since we first connected.

You know, I think it was back in autumn and it's just, it's been, I think so busy season.

Yeah.

I mean, listen, I know that book writing and then getting it out there and all the things that you just want to keep adding and then you keep this new research coming out and you kind of want to condense it all.

Yeah.

And because you're working in, in an area that is every month and it's growing and we're understanding more and you know, a few years ago no one would know really this connection between neurodivergence and hyper hypermobility and understanding what that all means and not just thinking, it's just like bend your finger backwards but just all these different layers and health challenges and.

Yeah, I mean, I think I've never met anyone who has, who understands themselves through a new neurodivergent lens that doesn't have a physical condition or hasn't gone through chronic pain or fatigue or different ways that it can manifest.

I'd love to hear a little bit about your story and obviously what led you into osteopathy, but also what led you down this route.

That's very specific, being a hypermobility expert.

So go for it, tell us what all the juicy bits that you think is important for us to know.

It is a long story, so I'll do the condensed version.

I have like the full version in the book if anyone wants to look at that.

But in terms of my personal journey.

So I grew up, just had a normal life as we were talking about earlier in London, Ontario, Canada.

So the joke is I've always lived in London.

I've lived in London, UK for the last 12 years or so.

I had a quiet childhood, which I thought was normal, but it wasn't normal.

I had pain constantly.

My earliest memory is my mum tickling my knees because she was trying to make them hurt less.

But I was in agony.

And you know, as a parent, I think, you know, I speak with a lot of parents and it's hard when your child is in pain, but the medical doctors say it's fine and she was just trying her best to support me at that point and, and the tickling did make me laugh at least.

So anyways, I was dealing with constant pain, which I was told was growing pains, but it was definitely not that.

In hindsight I had a lot of gastrointestinal issues, which I obviously still have because I'm hypermobile, which we'll get to in a minute, but those from an early age, like diagnosing a 10 year old with IBS or gastroesophageal reflux, that should trigger some investigations.

I had multiple other issues, you know, chronic muscle and joint pain, neck pain in childhood again, which when a child is saying, you know, my neck's in agony when they're studying again, people just would say, oh, it's because you're so anxious, you're so stressed, you know, being one of those very studious children.

It was always blamed on my studies or on my physical activity.

So I was a very, very active child.

I was swimming at a pretty high level on like my local team, training often four hours a day and just doing that high volume of physical activity.

They'd say, oh well, your neck's in pain or your shoulders hurt or whatever because of your swimming.

And in hindsight again, yes, over training, absolutely.

Did result contribute to injuries and potentially exacerbate some underlying symptoms.

But at the core of it, there was something really serious going on.

I then had to cope with a few difficult things in my life.

So, as we mentioned, my mom died of cancer when I was 21.

It was a misdiagnosis despite repeated complaints, and she was told it was anxiety for a year and a half or it was menopause or whatever.

And it was none of those.

Yeah, it was triple negative breast cancer.

So because it was caught late, it was untreatable.

I then ended up dealing with that throughout my first degree, which was English literature.

And a lot of people, they're like, oh, was it a waste to do an English literature degree?

And that is something I will argue with everyone about.

I think it is equally as important as my osteopathy degree.

If not, I don't want to say more so.

But when you study literature, you're studying the.

You're studying humanity, you're studying our thoughts, our feelings, our ideas, what matters to people and what's mattered to people throughout time.

And for me, having that as the foundation of my education, then followed by my osteopathy degree has really helped me, I think, have a good theoretical basis as well as almost an applied.

So I jokingly think of my English degree is like the theory of people and my osteopathy degree is like applied.

People love that.

Yeah, I recommend it.

I think, like, knowledge is never a waste of time because it's always applicable to something, like you say, and the fact that you've blended it, you're never going to waste that.

That skill or those talents or whatever you've learned in that first degree.

And I like the idea that, you know, obviously there's going to be science behind osteopathy, but also intuitive understanding and maybe that, like you say, it all blends together quite nicely.

And then you've written a book, so it's obviously, you know, worked well.

Carry on.

Yeah, no, the book has kind of been, as you say, like the culmination of these two loves of mine.

This love of literature and stories and people and this love of science.

So in help, I'm hypermobile.

One thing I decided to keep in, which is the title of the book, these little epigraphs from some literary texts.

And I've been very careful in my selection of them, but they all have a special meaning to me and I think it's a.

An interesting book.

But going back to kind of my career, I came to London, I never wanted to go into healthcare at all.

If you had told me like 10 years ago I'd be in healthcare, I would have laughed at you and said you were ridiculous.

Because what I went through with my mom made me just not want to work in healthcare settings really.

But I ended up here partly because I had wrist pain.

I fractured my wrist when I was 10 or so and I had chronic pain and I ended up having some treatment.

And the type of treatment I had done was called active release techniques, which is a type of manual therapy.

So for those who don't know, manual therapy means treatment with hands.

There are many different types of manual therapy that can be done in different ways of doing them.

And for me, active release techniques, they, they call themselves the gold standard in soft tissue care.

And although when I first saw that I was like, oh, they're, they're full of themselves.

That's ridiculous.

Looking at kind of how they approach things, the scientific basis behind it, and most importantly how people are certified.

Because you have to do exams every single year to maintain your certification and the anatomy is done to a high level and people do fail them, which I really respect the course for doing.

Actually coming across that type of manual therapy and having an improvement in my wrist pain made me say, hey, like this is a field I've kind of criticized.

I'd seen physios in my teens, I'd had different types of manual therapy done by different types of, you know, healthcare professionals.

It hadn't helped.

When I experienced something that made a difference, I was like, wow, this, this is really, really interesting.

And I thought, you know, I'm a very skeptical person.

So I was like, maybe this isn't, you know, maybe this is just a placebo effect or I'm imagining things.

But over time, being able to actually resolve or the word cure is a very weighted word.

So I don't like to use that because it's not the case for most people.

Most injuries we see in people with HETS or HSD or these hypermobility related conditions.

But getting to a place where some of my symptoms could be breathing, brought down to like a very low level and managed very successfully has really, really helped me.

And it gave me this hope.

And I said, hey, if we can improve this and this isn't, you know, not having to wear a brace to sleep every night, which I Wore from age 11 to kind of 21, a rigid metal brace to sleep, which again, I should have been referred to someone, but I never was.

But if, if this type of treatment, you know, can help me improve my symptoms, it helped my wrist, can it Help my neck, can it help my shoulders, what else can I do?

I then started did my osteopathy degree.

I was very lucky in that I was able to work with some relatively high profile professional athletes.

So I was exposed to this world of what happens if we have kind of an unlimited budget, you know, what can we achieve when we have all these different resources at our disposal.

So I worked with athletes initially, but then I kept being referred the more difficult cases over, over time.

And there is this point I remember on Instagram I changed my profile to say I work with complex stories, chronic and treatment resistant cases.

Little did I know that the majority of those are going to be hypermobile.

At that point I was realizing that I too was hypermobile.

And then one day I just said I specialize in working with hypermobile patients.

And it's been, my career's just gone since then basically.

Yeah, yeah.

I mean it's so interesting, isn't it?

Because you kind of like attract what you know, don't you, what you're talking about and what I hear so much, but I hear and it's, listen, it's my personal life, it's my kids, it's me, it's my family.

I know that we have hypermobility running very, very strongly throughout our whole genes.

I had used to go to physios all the time, lots of different back injuries, pain, hip problems, lower back issues.

And the only time I have had any relief is when I went to see an osteopath for the very first time.

And my brother as well had suffered with chronic, chronic back pain and he then went to an osteopath and ever since then the pain is never chronic and if it comes back, we go to the osteopath, we have a bit of a reset and I just feel it so intuitively in my body like I can feel when and it's always stress related, it's always when I know that I'm holding a lot or my nervous system has been dysregulated.

You know, when I was writing my book I would have my osteopath in the diary every four weeks as preventative.

You know, with my kids, my daughter, she was doing a gcse, she was getting neck pain, arm pain, shoulder pain.

Took her straight to an osteopath.

Interestingly, my youngest daughter, she's the athlete of the family.

She plays a lot of netball, like non stop netball, running football, everything.

She's also got adhd.

That's how she discharges her energy.

She's also as Young as she can articulate herself, has talked about painful legs, restless legs, sore legs.

You know, I've had magnesium sprays, hot baths, massage, everything that I can think of.

You know, I've taken it to osteopaths, and she calls it her growing pains.

But I know it's not her growing pains.

And I know this is a story that so many people hear.

Tell me a little bit.

You know, people are listening to this for the first time and they're relating to all of this.

What is the difference between osteopathic treatment and going to a physio?

So within these different musculoskeletal kind of disciplines, if we think of it like out of professions, are different certifications or different treatment protocols that these professionals can be certified in.

I'm very much of the view where I think that there's good musculoskeletal healthcare providers have more in common than more that differentiates them.

So if I had an injury, the top three people I'd want to see, there's an osteopath in Berlin that I would try and seek out.

There's a physiotherapist in the Netherlands and a chiropractor in California.

Just to show you kind of like there is a.

There are excellent professionals, certainly in every profession.

But to answer your question in terms of the differences, I think that osteopathy has a very holistic foundation.

So there's this idea where you have to look at the person as a whole.

You know, it was kind of an example of that.

Just an aside.

When a patient comes in to see me, there are two questions I always ask at the start of the new patient appointment.

I ask them first, if I was a fairy godmother, within reason, what would you like to leave here with from today's appointment to kind of make that immediate goal to make sure I deliver on what they're looking for help with.

But the second question I ask is, is today a good day, a medium day, or a bad day?

And if you were to assess me during an appointment and say, what's really like osteopathic about this healthcare provider, you know, taking into account that kind of person's mood or energy or just a greater emphasis on that, I think a lot of people would say that's more like a osteopathy trait.

And again, I don't want to say like, there are physiotherapists who are not doing that.

There absolutely are healthcare providers in every musculoskeletal profession who will work in a more holistic way.

I just think osteopathy perhaps emphasizes that a bit more.

I'll say the one thing that's a bit tricky with osteopathy as a profession is there is a huge variation in healthcare providers.

So I work in a very what you would call structural or mechanical way.

I am not a craniosacral osteopath.

There are things in my profession where other people do things where I don't understand them.

I wouldn't feel comfortable with the trying to justify them from a scientific perspective necessarily.

So you get a whole breadth of healthcare providers.

But in conclusion, like, I'm so happy to hear that osteopathy has worked brilliantly for you as like a overall profession.

But I would tell people just find that excellent person and that excellent professional, whether it's an osteopath, a physiotherapist, or even a chiropractor.

And I will say, just to be clear, in case people are listening, I do not adjust my patients.

I don't click joints.

I know that that's, you know, people think that's synonymous with chiropractic, but there are chiropractors who also don't do chiropractic adjustments.

Okay.

And, yeah, no, it's interesting, isn't it?

Because I've gone to a couple of different osteopaths and they have been quite different in their techniques.

And I mean, what I've always liked about it is that they do ask those questions straight away, is like, what's your stress load?

Tell me a little bit about, you know, hormones.

Or tell me a little bit about, like you say, sleep and all of that.

Where.

When I've been to a physio and I really don't want to knock physios, it's been, what have you done?

What's the injury?

And I'd be like, well, I haven't really done anything, you know, like, I can't really think, you know, maybe because what's happened is when I've thrown my back out, it's been.

Been gave it to the dishwasher, it's been the dog, like, pulled me a little bit.

And I know it's the incremental pressure, the stress load over the past six weeks, or maybe the lack of sleep, or maybe there's just been something hormonally not quite right.

And again, because I've been going through perimenopause, my fluctuations of hormones, I also know now how intrinsically linked it is to adhd.

And so now I understand ADHD adds to the bucket of stress, the tension, the internal noise, the constant catastrophization of whatever's going on in my brain, my nervous system is holding it and the way I see it is my nervous system kind of like snaps and my body responds to that and the discharge of energy that I get with an osteopath.

So one osteopath that I've worked with, she does that sort of the rocking and goes through the thing.

And even that in itself, I'm like, oh, I can feel there's something like coming out of my body.

Would you say that's quite a neurodivergent trait to kind of almost feel that coming out of your body?

Yeah, I would say.

Talking about the technique you're mentioning.

So I think you're describing a harmonics technique or an oscillatory technique where people just kind of very gently will rock joints or move joints, kind of a rhythmic way.

That doesn't make up the majority of my work, although I will use that with patients where it's appropriate.

But in terms of that type of rhythmic movement being either like soothing or symptom improving, shall we say.

I. I think that makes a lot of sense and it's certainly consistent with my experience, even in terms of exercise.

So Professor Keith Barr, he's an expert in connective tissue, not in the hypermobility space, although I really think he should start to do research in this field.

But he splits exercise.

In one lecture I've listened to by him, he kind of divides it into rhythmic movements.

So swimming is a rhythmic movement, rowing is a rhythmic movement.

Dancing even has a rhythm.

Right.

It's one movement flows into the next versus more isolated movements.

And I can't remember the term he uses, but non rhythmic, let's just say as someone who I am not currently diagnosed with adhd, but when you're present online, people absolutely start to make some observations from for sure.

But as someone who certainly potentially needs to go get an ADHD assessment one day, absolutely.

I can say that I find rhythmic movement soothing.

And whether it's someone else doing it to me in a harmonics technique or whether it's me incorporating it into exercise and it makes up the foundation of my approach to exercise for myself.

It's something which my nervous system needs.

So I totally saying there.

Yeah.

So I mean you mentioned connective tissue and we know that this is all highly connected with the hypermobility spectrum disorder.

Would you call it or difference?

I don't know how.

What's the.

I have a box in my Book, like your book, which is brilliant by the way.

My book has all these little boxes because I've tried to make it very ADHD friendly because we know the correlation is huge between hypermobility and adhd.

But I have a box, a little text pop out box or whatever you call it in my book where we talk about disorder, syndrome, condition and disease.

Because these terms are all used interchangeably and it's so confusing for people who need to speak or write or talk about these things terms.

So in terms of hyperbole spectrum disorder, firstly it's typically plural, so they say hyperbolic spectrum disorders, which is confusing.

But some research papers, they'll put it as singular as well sometimes.

So there's a little.

If you see it written different ways, that's not my fault, that's just how it's currently being written.

Yeah, but it, it is described as a disorder right now when it comes to hyperbole.

Ehlers Danlos syndrome, again, that's described as a syndrome in terms of different meanings.

Syndrome tends to be something where we can see what's happening in the person.

We see this pattern in terms of a syndrome.

We see this kind of pattern of symptoms, but we sometimes when we use the word syndrome, we don't know the exact cause.

So irritable bowel syndrome, we know that there are these symptoms that are presenting in someone, but we don't know the exact cause.

Now the annoying thing is that this is not a hard and fast rule.

But in a general sense when you see syndrome, you can kind of think of that disorder is hard because it has a lot of negative weight attached to it.

And I, as someone whose first study and first love.

I wanted to be an English professor.

I love my literature studies.

So I care a lot about the words that we use and how we communicate.

But disorder just sounds, it has more of a negative connotation and it has also like a negative mental health, I think attachment as well.

I prefer the terms condition.

I think that condition right now, it's kind of value neutral and it's what I use sometimes when talking about these issues in a broader sense.

But from a technical terminology perspective, yes, it is hypermobility spectrum disorder or hypermobiles download syndrome or other because they do exist.

Hypermobile ones.

Yeah, I mean that's, that's the thing.

First of all, I totally agree with you.

I feel like condition feels like it's something that can be improved, that can be lived with, whereas disorder just, you just feel like there's no kind of like coming out of this now and I know from your work that you, you help people live well alongside this, with the awareness, with the understanding, understanding triggers.

And I would love to talk a little bit about this as well.

I guess you've got people from all walks of life coming into your clinic.

And I know that you are a clinician at first, you see people a few times a week, which is the most important thing.

We've got the research, we desperately need more research, but we need people on the ground seeing the people are hearing the stories and helping people connect the dots.

I mean, are people coming in to you with any understanding of what's going on and you're, you're then having to say, have you heard of this?

Do you understand the correlation with neurodivergence?

Have you had an assessment, you know, for any of this?

And what kind of reaction are you getting from people when you're having to explain this all to them?

Yeah, I see different types of patients.

So I'm seeing more and more patients who are absolutely just, they've done a ton of research and they're coming in.

And what frustrates me sometimes is when these are incredibly well, well informed patients who've been told by other healthcare professionals that they're not well informed, but they actually are.

So these are people who are saying, hey, I have these symptoms from my research, they seem like they might be consistent with this hypermobility related condition, you know, but I'm being told like, I don't know what's going on.

What, what do you think?

You know?

And I have to tell that patient, like, hey, you've done a great job of this research.

Like I'm so impressed by what you've done, you've done with no support and I'm so proud of you for doing this.

This matches up with what you're saying.

This I'm not sure about, but let's get an opinion from this other medical specialist.

So those are.

The patients like feel really frustrated for them because they're putting in the legwork.

And these are people often who have fatigue issues and health issues and they're spending that time and energy doing this and then hitting walls.

So those patients, when I see them, I try to make sure they know that they've done a brilliant job and I try to give them that energy to keep going, you know, in, in ways that positively impact their health and are clinically indicated.

I do see patients where all of this is new to them or they've had inklings, as you've said, like where things they've they know that something's not right, they know that something's been going on.

There's a sense of une knees and I see patients where I'm that first person certainly to kind of connect the dots and explain things.

I try very much.

I think there's a tendency sometimes online to attribute everything to hypermobility or you know, everything.

It comes back to that.

And although many, many things do, it's not everything as well.

And as a clinician who cares about keeping patients safe, I'm very cautious because sometimes people do have, heaven forbid, you know, cancer or something else which is not hypermobility related.

And I have to make sure that I'm keeping, keeping my patients safe and looking out for that.

So I try to not fall into the trap of like it's all hypermobility.

But of course a lot of it is.

But seeing those patients where we talk about kind of the intersection of different conditions or what's co occurring and what we know from research right now or what's what we don't know from research yet, but what there's a good physiological basis for and what is currently being researched.

Seeing that type of validation like just light up in their face and seeing them, there's sometimes happy, happy tears or whatever.

Like it's the reason why I love my work so much is getting to really make a difference in these people's lives because they are all my patients.

Maybe I'm biased, I think they're the best in the world.

Maybe I'm just lucky or whatever.

But these are incredible people I have the privilege to get to work with.

And it's a, it's just a great privilege to get to help them in this way.

Yeah, I mean I think that validation that you're giving them when they're coming in because ultimately we've had to be our own advocates.

And what I'd love to ask you is maybe if someone is listening to this now and they're really just kind of like oh yes, I actually have had that chronic pain, that neck pain, that back pain, shoulder pain.

Maybe it's not been to a height, such a heightened degree that they've really suffered, but it's there.

They take maybe daily paracetamol, maybe they have had to go to a physio a few times, maybe they've had a few injuries, you know, every time they do sports or they do a certain challenge, but they just kind of bypass it because.

Because very often we're just taught that pain is normal and just crack on.

Especially as Women, can you give us a little bit of a.

If you've had this, this and this, maybe it's start.

Start having a look into whether it's EDS or HETS or hypermobility.

So people can do that research for themselves.

They can feel more empowered.

In terms of lists of things, I think that firstly, we need to think of what is zero pain.

So if you had asked me when I was 21 if I had chronic pain, if there was like a survey, I would have ticked no.

Or if I had any, you know, if I experienced pain that was affecting my life, I would have ticked no.

Bear in mind, I was having headaches that had me in bed for days at a time.

My neck was in agony.

I would struggle to stand for long periods of time and so on, right?

And at that point, I'd had multiple fractures, multiple surgeries.

Like, there's a lot in my health history where I just.

I wouldn't have even acknowledged it.

And I think as much as that can be, you know, a mental state that's associated with some neurodivergent conditions or ways, you know, just trying to kind of filter or focus on what you can or ignore the rest or give it that attention or not give it bad attention, I think it's also just a coping mechanism for dealing with the trauma of having a connective tissue condition as well.

So I don't want to dismiss people's understanding of themselves or say, oh, well, if you think this isn't you, then you're, you know, like, you're wrong.

It's you.

No, you know, yourself.

This is ultimately a conversation and discussion and thought process you need to have with yourself and your healthcare providers.

But in hindsight, I just wish I could scream at myself that what I was going through was not normal in terms of things that would make me if I had a child.

If we're using the example of a young person, kind of flag that and be like, like, maybe we should, you know, talk to a medical doctor, healthcare provider of some.

Some kind in children, where we're seeing, firstly, growing pains.

Growing pains, they do not exist.

If there was a systematic review, I'll send the link for you to put in the podcast.

They are nonsense.

There is no clear medical consensus on what growing pains are.

If I ever have the time or energy to do a informative campaign on the subject, I will, because that is the first negation and the first instance of what's dismissal for someone's pain and someone's lived experience.

So that young child, whether it's Me or one of your children or someone else listening to this when they're told, oh, that's.

You're too sensitive.

It's not pain.

Stop being so dramatic.

You know, which is kind of what I was told.

You learn very quickly and from a very early age.

We're talking often age 3, maybe 10, maybe, you know, maybe a bit older or younger, but childhood.

Your brain is developing and you're taught ignore what you're feeling in your body.

You're wrong.

And your feelings don't matter from a very early age.

So that is terrifying and serious.

So in terms of growing pain, anytime there's a young child where pain is affecting their sleep, that, for me, is a flag where I want them to speak with their medical doctor, healthcare providers, someone who's appropriately qualified to help them with this.

When we see children with gastrointestinal issues that are unexplained, again, diagnoses of IBS are handed out like candy.

It's meant to be a diagnosis of exclusion.

I don't know about anyone else listening to this.

I had no testing done.

I had nothing.

No, neither did I. Yeah, they were.

Just like, you have IBS and something, which I have talked about before, but which I will mention here.

It's a health podcast, so I assume it's fine when we see children with episodes of constipation that are longer than a few days.

Red, red flag.

I went three weeks without a bowel movement.

I was, like, 14 and talking to my friend, being like, hey, like, have you ever gone this long?

Because, you know, I was 14, growing up in London, Ontario, and Canada, and I didn't know what was normal or not.

And I had no idea that three weeks is when things gets.

Get really serious.

Like, I should have been potentially going to the hospital.

I should have had.

I should have had a referral, at the very least, to a gastroenterologist.

After that, nothing happened, of course, but anytime I see episodes of this is gastric dysmotility.

So constipation would be that gut moving too slowly or not at all.

And sometimes which can happen and which is an incredibly serious issue.

There's also, of course, gastric dysmotility the other way, where it moves too fast.

And there are people who will have both, which is really confusing.

I had a patient yesterday, and she was telling me how her medical doctors dismissed her because they're like, well, you have both, so it's okay.

You know, you're not one or the other.

And it's like, no.

These people that have I call it never normal.

So they're either end of the stool chart, they're never in the middle.

These people need gastroenterology investigations and assistance and support.

Can I ask about that?

Because it's interesting again, one of my kids has this and she also has quite serious, sort of like hormonal, whatever you want to call it, heavy periods.

It's been muted about endometriosis because endometriosis the similar symptoms as well.

Does this overlap, do you see an overlap of, of this type of kind of presentation of.

Definitely within women and girls with hormonal issues.

It's not just me.

So in terms of the research, this is one of the things there is excellent research on.

A very big systematic review came out in autumn of this year.

My brain is not working today for recalling research, but I'll send it to you, it'll be in the show show notes.

But the correlation is very, very high for conditions like endometriosis, I believe polycystic ovarian syndrome as well, dysmenorrhea.

So just period pain without a known cause is incredibly high.

So we have good evidence now that there is a clear correlation between these kind of gynecological or period related health issues and elders Danlos syndrome and hyperbole spectrum disorder.

So in terms of young people, you know, with a uterus and periods who are having these issues.

Yes, they should be acknowledged.

Again, I was someone who had undiagnosed pcos.

It's a whole story.

I'll say it real quick.

I went to my doctor with the medical diagnostic criteria.

I just started my osteopathy studies.

I was learning how healthcare worked and I said, hi, these are the criteria, I have these, therefore I have this condition, I have pcos.

And I was told, no, you can't have it because you're too skinny.

And I said, but weight does not appear on the diagnostic criteria.

And then the, the gp, this happened to be in the nhs.

But she was just like, no, you can't have it.

And I said but I have it.

So we just end up in an impasse.

I left the office and tried to find ways to manage it myself, which luckily I've been able to manage and self improve to a large extent.

But the dismissal of period related issues is a massive problem and it does probably disproportionately affect people with HEDs and HSD based on current research on co occurring conditions.

Yeah, I mean, and thank you for that because that again is validating.

Can I ask, you talked about headaches again.

Are we seeing a higher proportion of migraines, jaw pain, headaches in this.

And can osteopathy help with that?

Is it sort of like a release that you're able to do to help reduce the migraines?

Yeah.

So when it comes to headaches, firstly, safety is paramount.

There's something that health care providers of all kinds, whether physios, osteopaths or, or otherwise need to be trained in screening because there can be headaches that are very clinically concerning.

So if it's a particularly new headache, if it has certain types of visual changes or a specific intensity, we want those investigated.

And I say that, I always ask patients, you know, have you spoken with your medical doctor?

And sometimes they're like, yes, but like they told me it was anxiety or whatever.

But I have to ask that just to try and make sure that this is being managed in a safe way.

But in terms of headaches in your question, there are different types.

So there are some headaches, there are true migraines, which are more of a centrally mediated neurological phenomenon.

So I compare it to almost like the northern lights.

The brain just gets weird and these people will get sometimes aura or different sensations or symptoms there.

Right.

Or sensitivity to light as well.

And that is centrally mediated.

In terms of success with treating migraines from a manual therapy perspective, I, I haven't seen a lot of good evidence from a research perspective or anecdotally in terms of being able to improve those and in a direct way, as in like we treat this and this helps, if that makes sense.

Maybe as that person's health improves as a whole, maybe those symptoms can reduce.

But they're very much a centrally mediated kind of brain northern lights almost situation in terms of other types of headaches though.

So what I had and which I still get a few times a year, but very rarely they are, I would diagnose them.

And again I went to my doctor.

Was I diagnosed with anything?

No.

So this is just my self diagnosis in my view.

I believe that I have cervicogenic headaches with migranous characteristics and some involvement of my trigeminal nerves.

Whether you call it a neuralgia or an irritation.

I would get intense pain at the back of my eye like it was, was being strangled, intense pain in my teeth, which was terrifying because I've had jaw surgery and a bone infection five years after the jaw surgery.

So every time I would have the headache I would be so anxious that I was having a recurrence of what I believe was probably a chronic osteomyelitis.

Again, that was not diagnosed.

I went to the hospital, was told I was a drug seeker and it's a long story on how I didn't die from that, to be honest.

But anyways, I, every time I had a headache, I would go buy a thermometer because I was so anxious.

I had a bone infection, which is not normal, to be clear.

So with that type of headache, to use myself as an example, the thing that made me believe it was treatable was the fact that I would have neck pain as a prodrome.

So I always ask my patients, what happens before you get a headache?

And even though I will see these patients and it is horrific, these are, these headaches are the thing I'm most scared of having to deal with with again in a, you know, significant way personally for me in terms of symptoms.

But I will ask these patients, you know, do any symptoms consistently kind of occur before these headaches or can you.

Do you know it's going to happen?

Can you feel it coming on?

The ones who I believe have true migraines, they say no, it's just kind of random.

It'll just, it'll just happen pretty, pretty quick.

And there's no neck pain associated with it.

The patients who have what I believe are their cervical genic headaches with migraineous characteristics, these patients will say, yes, I have a sense of dread, I know it's coming, I can feel it going up my neck.

It makes me sick.

As someone who's had that, the lead into the headache is almost worse because, you know, you're on horrible roller coaster ride and if you don't have ways to manage it, you can't get off it and you know, the full symptom picture that's coming and that's waiting for you.

So with those type of headaches, patients are obviously suffering, but I get really happy because it means that there's something potentially that we can do in terms of treatment.

I think we need to think about how more often how peripheral nerves are as much connective tissue as they are nerves.

So the sciatic nerve, if you removed it from a body at the gluteal region, so the buttocks, if we take it out and put it on a tray to look at it, it's something like 80% connective tissue.

It's over 70, certainly.

And that's because the sciatic nerve and all peripheral nerves to an extent have connective tissue within and around them.

So they have the epineurium, the endoneurium and the perineurium.

So think of it like the, almost the cable, you know, if we have a little like charging cord, it's like the wrapping around that cord, if that makes sense, as well as also within it though interestingly.

And when it comes to treating these headaches, what I often look at in patients, I'll just mention these structures in case they help someone out there dealing with this.

I look at the dorsal scapular nerve and the spinal accessory nerve.

So these are two nerves that go from the neck between the mid back and the shoulder blades or kind of upper back area.

And looking at those nerves and how they're being irritated and sometimes finding ways to treat those structures, whether through, in my case, the active release techniques that I do or prescribing exercises to build that mid back strength and develop that scapular control.

That is something which I can say anecdotally and I don't have studies, but I can say it's one of the most common presentations I treat at clinic.

And although it is certainly multifactorial, there can be hormonal contributions, there can be nutritional contributions as well.

So people might, if they have adhd, be forgetting to eat, for example, and you get in a caloric deficit and that can be a trigger.

But finding ways to deal with these headaches is like one of my, I don't know, it's I like I'm a generalist, I deal with all types of injuries, but headaches and neck pain are probably something I certainly specialize in.

Yeah, no, I'm asking, I'm asking this because again what I'm hearing is that it's just not enough understanding of this neurodivergent crossover of if someone's presenting with say gut problems, migraines, neck issues and that clinician understanding go, oh, let's ask some more questions like I wonder what else is going on for them and making that connection.

Well, and I think it's also gatekeeping, which is a huge issue.

So I'm in a very privileged position where I've gotten to study.

You know, I did a four year degree on the musculoskeletal system basically.

So in terms of dealing with these headaches, although I had treatment done by other musculoskeletal healthcare professionals, manual therapy at the time and so on.

A lot of what I was doing was self treatment interventions as I call it, or you can call it self massage, but there are things you can do that aren't really even technically massage.

One of the single biggest, I think obstructions to patients making progress with These really chronic and complex issues is that in patients who are hypermobile and again we can't, we can't use it synonymously with neurodivergence but as you've said, there's such a huge correlation.

You know, patients who are hypermobile and neurodivergent, these are people where they have a high injury rate because of the hypermobility, the connective tissue is more delicate, it's more vulnerable to re injury or symptom aggravation.

So we have a high re injury rate.

Patients can only see me so often, I'm very, very booked.

And it's also there's a cost in time and travel associated with it potentially.

Right.

So when I'm seeing these patients, I know the re injury rate is high.

I need to find ways, if I find a way to successfully help improve their symptoms in the treatment room.

My first thought is what can I do to help these patients be able to mimic whatever I've done here at home?

What can I teach this person?

Because then when they go home and they have that symptom occur, that little, that horrible feeling of dread of that headache starts with that neck pain, they have something they can do, whether it's exercise, whether it's self massage, whether it's another type of an intervention of some kind, they have something which the patient and I have agreed on, which they're going to try, they're going to come back and tell me Alex that was brilliant or Alex that didn't help at all.

And that gives me information to then help formulate more specific interventions for them to do and to develop a very much.

It has to always be individualized unfortunately, because every person is slightly different.

Some patients find cold caps helpful.

If you put a cold cap on me when I have one of these headaches, I will not have a positive reaction.

No, I wouldn't either.

Some, some patients love them, I will never understand it.

But anyways, basically having this, this real passion for developing self treatment strategies because I like to have successful outcomes with patients, to be entirely honest, both for myself as a professional in my view of myself, but also to help my patients and help them feel better.

Of course it is the most important part of what I do.

And going back to what you said at the start about these patients who do this research.

My patients are my most valuable asset in terms of actually helping improve their symptoms.

If my patients were not as motivated and hardworking and curious as they are and willing to learn, I could not achieve the clinical outcomes I do.

So working with that and working as a team, that is the single most important thing.

Yeah, I mean, I love the idea of self treatment because like you say, a headache comes and we can't be like, oh, we'll see you in two weeks.

We need, we need to have that autonomy and that sovereignty to feel like, yeah, I can deal with this.

Like, I have tools in my back pockets.

Why I wrote my book.

There were so many things in there.

I was like, right, I want these people to be able to know they don't need to see a coach, they don't need to see a psychiatrist.

They can empower themselves, teach other people and have those, that toolkit.

And I guess, is that what you've written your book for as well?

I want to hear a little bit about like self treatments that you've put in the book because this is going to help so many people because not everyone has accessibility to private, you know, treatments.

No, I wrote the book because when my symptoms were at their worst, I had no money, I was a student, I couldn't afford anything.

So it's, it's a, it's the book I wish I had had.

I'm very much like a high, low person, if that makes sense.

You know, with fashion, when people mix like a really high end brand with something lower.

Yeah, we need high, low health care because there's that.

Yeah.

And there are some health issues where I will tell patients, you need this test.

Like we, this is really important.

This has to be done correctly.

Like, please, I'll tell patients, don't see me.

I'm like, I can't see.

I don't want to see you again until this is done.

Because that's how important it is to their health.

Right.

So that's like kind of the high end.

But there are so many things that can be done from a cost effective perspective.

Although of course it is important to see healthcare providers and I believe very strongly, you know, in patient safety.

And then there is certainly a role that's played there.

The reality is that there are people out there manage with symptoms that they can have positive effects on in the here and now and that they need to get going with.

And people forget that a diagnosis is a privilege as well.

So that's why I called the book Help.

I'm hypermobile.

I didn't say help.

I have hypermobile with Danlos syndrome because I couldn't, I didn't get my diagnosis for years because I just couldn't have afforded it and I couldn't have accessed it.

And a lot of my patients they almost commit the crime of looking too well, which again it's these are people, you know, in terms of healthcare professionals, I see a lot of people who are co diagnosed with HDS or HSD and adhd and these will be people who are in very accomplished roles sometimes and people are suffering.

I'll hear about the details of their day to day life and what they're struggling with, but they hold everything together just well enough to be competent, you know, not even competent to be accepted at their work.

But behind the scenes these people are really having a hard time.

So.

Help I'm Hypermobile.

Your how to Guide for hds, HSD and Life in a Hypermobile Body.

It's truly the book I wish I had had.

I believe very strongly in the democratization of healthcare.

So for me, as much as I'm happy to see patients in a clinical setting, I wanted to like you, try and help the people who couldn't see me help.

The me, the little 21 year old me who needed that help and who could good enough afforded my appointment rate but who could afford maybe a, I don't know, 12 pound, 16 pound, whatever the price will be, they could afford that book.

So that's why I wrote it.

In terms of the structure, we talk about physiology and anatomy, but I try to make it in a fun and interesting way because I hate when things are boring.

Because this stuff isn't boring, it's like thrilling in my opinion at least.

So looking at the science and making it focusing on what's useful.

I think as a healthcare provider when I go to conferences I care about research that is presented with a focus on what's called clinical utility.

So how can it help me help patients?

With the book I want to focus on subject matter that helps patients help themselves and that's not just superfluous, you know, kind of useless stuff.

So there's really been very much a laser focus on that.

I want to prepare people as well for talking with healthcare providers.

So it's a book which I've kind of written to help equip people for these discussions that they might need to have.

And it's a book which answers all, all the questions people have.

The second part of the book is an FAQ of just the questions that I've been asked repeatedly over the years.

And for me it's been great to get to really give an informed, you know, research, evidence based answer to, you know, all these different questions that crop up again and again and again because I don't know about you, but it's like I'm being asked the same questions I was asked four years ago and it's no fault of the people who are asking me these questions.

It's just that there's still not enough awareness that these questions are not answered in the public mind.

Yeah, I mean, it sounds like such a valuable book and I know, you know, your podcast as well, it's fantastic at addressing all of this.

I think we need to get out of these sort of one minute, you know, TikTok videos and Instagram reels where yes, they can be very helpful but there's no nuance.

We can't expand on this and it can't be.

But yes, there's this, but that and you need to check this.

Like you say, these conversations are very, very important because thankfully we've got this awareness now, but now we need to get, you know, dive deeper.

Ten years ago a book on hypermobility would have been very, very niche and you would have only been able to find it in like a health, you know, a health food shop or something like that.

But now it's coming to the mainstream and I do feel like there's a, there's a change in the tide of like people wanting to feel empowered with their healthcare.

Maybe it sadly has been because they have been let down by mainstream medicine.

There's just not been enough knowledge, there's not been enough awareness.

We talk about medical, medical gaslighting and I don't ever want to throw doctors under the bus ever, because I know that many, many doctors, most doctors are doing a fantastic job with the resources and the training and the time that they've got.

But the time is now where we have to start listening to people and putting these new reframes into place of understanding people through different lenses.

And the fact that you're talking about hypermobility and giving this accessibility of allowing people to have this, you know, this self treatment, this understanding of themselves.

I'm very excited to read it and I will be, you know, using it for myself but also for my kids as well because I see how it shows up and I have this tendency to want to fix and treat my whole family and they often don't want that.

And I just hope that as they get a bit older they find a way to help themselves.

So this book will definitely be out, but I'm going to let you go.

We're going to put a lot of the links that you've mentioned in the show notes and so and if people want to contact you, we'll make sure that we've got your website, book, links, podcast.

We're going to put it all in the show notes and, and then if anybody lives in London and they want to make an appointment with you, what kind of wait time are you on it?

It depends.

Right now I think we're looking at like two months, six weeks at least.

It depends on when people are able to be seen as well.

My schedule will open up a bit more when the book is out.

I do offer online appointments.

I've seen patients from almost every country you can imagine at this point, which has been one of the coolest things about my career.

So certainly online in person, I do workshops as well occasionally, which are brilliant.

And yeah, people are always welcome to reach out, message me.

I do genuinely try to reply and the best part of my work has been getting to connect with people and with other professionals in this space like you.

It's truly the, the most, I guess, rewarding part.

Thank you for having me on today and, and thank you for your shared passion for something which connects us, which is certainly hypermobility.

Yeah, absolutely.

Well, thank you so, so much.

Really appreciate you being here and wishing you lots of luck with the book.

Thank you.

Thank you for being here and listening to today's episode.

I just want to remind you that if you, if you are looking for more support on your ADHD journey, there are so many resources waiting for you [email protected] so inside the ADHD Women's Wellbeing Workshop library, you'll find practical and compassionate guidance on topics such as nervous system regulation, rejection, sensitive dysphoria, perfectionism, emotional regulation, hormones, parenting and super so much more.

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