Welcome to the ADHD Women's Wellbeing Podcast.
Kate Moore YoussefI'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 YoussefAfter 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 YoussefIn 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 YoussefHere's today's episode.
Kate Moore YoussefWelcome back to the ADHD Women's Wellbeing Podcast and I am Kate Moore Youssef, your host, as always.
Kate Moore YoussefAnd.
Kate Moore YoussefAnd 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 YoussefWe've got Dr.
Kate Moore YoussefJessica Echols here and she is a doctor, psychiatrist and expert, global expert in ADHD and neurodivergence and hypermobility.
Kate Moore YoussefSo I just wanted to welcome Dr.
Kate Moore YoussefJessica 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 EcholsThank you, Kate, and thank you so much for inviting me to be on the podcast.
Dr. Jessica EcholsSo I basically have a couple of different roles, so one of them is I'm a consultant psychiatrist in a neurodevelopmental service.
Dr. Jessica EcholsSo that is an adult service in the nhs where we diagnose autism, ADHD and Tourette syndrome, all forms of neurodivergence.
Dr. Jessica EcholsAnd 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 EcholsI've just been promoted to something called reader, which is a strange term, but it's the American equivalent of professor.
Dr. Jessica EcholsAnd I've been working in the field of hypermobility here at Brighton and Sussex Medical School with colleagues since 2009.
Dr. Jessica EcholsAnd I have been.
Dr. Jessica EcholsI've been privileged that throughout my entire research and training journey, I have always combined research with clinical practice.
Dr. Jessica EcholsSo 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 YoussefYeah, absolutely.
Kate Moore YoussefIf 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 YoussefSo, first of all, thank you so much for all the work.
Kate Moore YoussefYou 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 YoussefIt'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 YoussefAnd now we're starting to understand there is this connection.
Kate Moore YoussefAnd 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 YoussefCan you explain a little bit between the difference between hypermobility and eds?
Kate Moore YoussefEhlers Danlos syndrome.
Dr. Jessica EcholsOkay, so hypermobility, I think, in some ways, is a bit of a misnomer.
Dr. Jessica EcholsSo hypermobility describes joints that are unusually flexible.
Dr. Jessica EcholsBut what it is is it's a marker of something different in terms of the connective tissue.
Dr. Jessica EcholsSo the building blocks of how the body is buil.
Dr. Jessica EcholsSome people have hypermobility.
Dr. Jessica EcholsAnd this can be an advantage.
Dr. Jessica EcholsSay 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 EcholsBut because a connective tissue, the things the lacks connective tissue that makes the joints more flexible is everywhere in the body.
Dr. Jessica EcholsIt can actually affect all sorts of systems in the body.
Dr. Jessica EcholsSome people who are hypermobile, they have other features.
Dr. Jessica EcholsSo they may have pain, they may have dislocations.
Dr. Jessica EcholsThat's when joints come out of socket, or subluxations, when joints nearly come out of socket, they may have skin signs.
Dr. Jessica EcholsSo they may have things like easy bruising, stretch marks, thin, papery skin.
Dr. Jessica EcholsThey may have things like hernias, prolapses.
Dr. Jessica EcholsAnd so if you have the presence of flexible joints and there's certain cutoffs, which we could debate for a long time.
Dr. Jessica EcholsBut 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 EcholsNow, the EDS stands for Ehlers Danlos syndrome and Ehlers Danlos syndromes.
Dr. Jessica EcholsThere are, in fact, 13 or 14.
Dr. Jessica EcholsIt's under debate.
Dr. Jessica EcholsAnd some of them are incredibly, incredibly rare and have known genetic mutations.
Dr. Jessica EcholsAll people who have Ellis Danlos syndrome have joint hypermobility, but not all people with joint hypermobility have Ehlers Danlos syndrome.
Dr. Jessica EcholsAnd most people who are hypermobile with symptoms have something called hypermobile Ehlers Danlos syndrome if they have an Ehlers Danlos syndrome.
Dr. Jessica EcholsAnd for that there is no single or clear genetic cause.
Dr. Jessica EcholsBut we know that it runs in families.
Dr. Jessica EcholsIf you have a family member who's affected, you yourself are more likely to, to have the condition.
Dr. Jessica EcholsBut 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 EcholsAnd then there's hypermobility with symptoms.
Dr. Jessica EcholsSo symptomatic hypermobility.
Dr. Jessica EcholsAnd 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 EcholsSo there are lots of.
Dr. Jessica EcholsThis is Alphabet soup basically.
Dr. Jessica EcholsThere are so many different terms and there are some historical terms as well, which further adds to the confusion.
Dr. Jessica EcholsSo when I was at medical school, I was diagnosed with something called joint hypermobility syndrome.
Dr. Jessica EcholsAnd joint hypermobility syndrome is now being superseded by HEDs and HSD.
Dr. Jessica EcholsThere 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 EcholsBut 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 EcholsSo that is maybe even more confusing.
Dr. Jessica EcholsBut 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 EcholsThe outcomes and management are the same for both HSD and for heds.
Kate Moore YoussefSo thank you so much for explaining all that.
Kate Moore YoussefAnd 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 YoussefIt can feel very overwhelming.
Kate Moore YoussefAnd you know, I think what's interesting is what you said.
Kate Moore YoussefThere's a hypermobility spectrum disorder so we can sort of see the presentation of symptoms.
Kate Moore YoussefBut 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 YoussefIs that, you know, is that what you're seeing?
Kate Moore YoussefA lot of and you're seeing this sort of spectrum.
Kate Moore YoussefAnd does it have any impact of how your neurodivergence shows up?
Dr. Jessica EcholsOh, I see.
Dr. Jessica EcholsWell, those are really interesting questions.
Dr. Jessica EcholsAnd I don't actually know.
Dr. Jessica EcholsI don't think we know all of the answers to them.
Dr. Jessica EcholsSo I think the thing about hypermobility, just like neurodivergence, is that it comes with both strengths and challenges.
Dr. Jessica EcholsAnd we have to, we have to take that into consideration.
Dr. Jessica EcholsSo, for example, an odd strength of hypermobility is having skin that looks more youthful.
Dr. Jessica EcholsSo 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 EcholsAnd that means that actually sometimes people can look younger than they seem.
Dr. Jessica EcholsThere are some piano pieces and pieces of music that can only be played by people with hypermobile fingers.
Dr. Jessica EcholsAnd 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 EcholsBut at the same time, it comes with challenges.
Dr. Jessica EcholsAnd those challenges are on a spectrum.
Dr. Jessica EcholsAnd 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 EcholsAnd then there are other, other issues.
Dr. Jessica EcholsSo with hypermobility, some of the work that we've been doing has been about anxiety.
Dr. Jessica EcholsSo hypermobile people are more likely to experience anxiety than non hypermobile people.
Dr. Jessica EcholsAnd we know that a lot of neurodivergent people experience anxiety too.
Dr. Jessica EcholsSo 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 EcholsNow, what we know about hypermobility and neurodivergence is actually very much in its infancy.
Dr. Jessica EcholsIt's very, very early on.
Dr. Jessica EcholsSo 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 EcholsNow, that is almost certainly the tip of the iceberg, because you can imagine how hard it is to be diagnosed with both.
Dr. Jessica EcholsThere 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 EcholsSo I suspect those figures are actually quite conservative.
Kate Moore YoussefYeah.
Dr. Jessica EcholsBecause they are only.
Dr. Jessica EcholsOnly what was available in the registry.
Dr. Jessica EcholsBut 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 EcholsNow, when I say hypermobile in that context, I don't mean symptomatic hypermobility.
Dr. Jessica EcholsI just mean the presence of generalized joint hypermobility.
Dr. Jessica EcholsYeah.
Dr. Jessica EcholsSo there is so much more work to be done in terms of exactly how many people.
Dr. Jessica EcholsWell, discovering for a start, exactly how many people have heds.
Dr. Jessica EcholsWe have no idea.
Dr. Jessica EcholsWe literally have no idea what the prevalence of HEDs is.
Dr. Jessica EcholsWe know from quite robust population studies what the prevalence of generalized joint hypermobility is.
Dr. Jessica EcholsWe 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 YoussefI mean, it's absolutely fascinating.
Kate Moore YoussefI 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 YoussefIs that it's a much higher ratio.
Kate Moore YoussefIs it because it's.
Kate Moore YoussefIs it hormone driven?
Dr. Jessica EcholsWell, this is really interesting.
Dr. Jessica EcholsSo, yes, there is a degree to which hormones affect connective tissue.
Dr. Jessica EcholsAnd 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 EcholsBut I've been wondering.
Dr. Jessica EcholsI 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 EcholsAnd that actually men may have hypermobile features that are often missed.
Dr. Jessica EcholsSo they might have a thin, narrow wrists, which is part of the diagnostic criteria, but not part of the hypermobility screening.
Dr. Jessica EcholsThey may have thin faces with narrow features.
Dr. Jessica EcholsThey may have soft, stretchy skin that bruises easily.
Dr. Jessica EcholsAnd these wouldn't necessarily be picked up in the, in the screenings.
Dr. Jessica EcholsAnd 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 EcholsAnd 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 EcholsIf you're autistic and, and the same with ADHD is actually not true.
Dr. Jessica EcholsWe may find that this is actually the case with hypermobility too in the future, but that is a real big conjecture.
Dr. Jessica EcholsBut there is undoubtedly whatever is actually going on.
Dr. Jessica EcholsThere is strong influences of hormones on hypermobility symptoms, but that is not well researched or properly understood.
Dr. Jessica EcholsBut 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 EcholsAnd sometimes just.
Dr. Jessica EcholsJust 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 YoussefYeah, 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 YoussefAnd I notice that the last week of my cycle it flares up a lot more.
Kate Moore YoussefBut 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 YoussefThe trauma so many of us have gone through and it's so nuanced, isn't it?
Kate Moore YoussefAnd 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 YoussefI don't even know if it's misdiagnosis.
Kate Moore YoussefIt's just that people just aren't being diagnosed.
Kate Moore YoussefNo, 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 YoussefBut the words hypermobility have never come out from, you know, an osteopath, from a physio.
Kate Moore YoussefIt'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 YoussefBut I know my body and I know how it presents and how I feel all this stress.
Kate Moore YoussefAnd 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 YoussefWhy are you so tense?
Kate Moore YoussefI've never felt your glutes.
Kate Moore YoussefI've never felt glutes so tight.
Kate Moore YoussefI've never felt shoulders so stressed.
Kate Moore YoussefAnd 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 YoussefAnd, you know, I see it presented in one or two of my kids.
Kate Moore YoussefI can see it presented in, you know, generations above me who have had a lot of chronic pain in their life.
Kate Moore YoussefAnd, you know, you mentioned the word prolapse.
Kate Moore YoussefYou know, one of them had a very severe prolapse, unfortun, you know, opiate addictions because of the pain.
Kate Moore YoussefAnd so this is very, very real.
Kate Moore YoussefAnd my family, I don't think, is any different to so many people that I speak to.
Kate Moore YoussefAnd so how can we start turning this dial now like this?
Kate Moore YoussefI 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 YoussefBut when they go to their care providers, how can we start getting the diagnosis, the testing, the understanding, the validation.
Kate Moore YoussefSo though things can start progressing for.
Dr. Jessica EcholsUs, it's really hard and unfortunately, services are not ideally configured at the moment.
Dr. Jessica EcholsEssentially, 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 EcholsAnd that supports doctors, including GPs, to make a hypermobility diagnosis and to help manage commonly associated symptoms.
Dr. Jessica EcholsSo 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 EcholsSo 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 EcholsAnd unfortunately, the waiting times in the UK for seeing rheumatology are very long.
Dr. Jessica EcholsAnd 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 EcholsSo there can be some obstacles.
Dr. Jessica EcholsBut what we know from research that we've done is that a lot of people actually end up with a diagnosis of fibromyalgia, when in fact, probably at least 4/5 of people with fibromyalgia actually have symptomatic hypermobility.
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Kate Moore YoussefNow back to today's podcast.
Kate Moore YoussefSo when you're saying that rheumatologists aren't diagnosing, then, then what happens?
Kate Moore YoussefYou know, is there genetic testing, is there self dou diagnosis?
Kate Moore YoussefI mean, how, how do people get help?
Dr. Jessica EcholsIt is a, it is a real minefield and I would encourage people to look for help from the EDS Society.
Dr. Jessica EcholsAnd 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 EcholsSo I think people essentially have to be empowered to think things through themselves because of the way that services are constructed.
Dr. Jessica EcholsThere is also a really good book by someone called Claire Smith about understanding hypermobile EDS and hypermobility spectrum disorder.
Dr. Jessica EcholsAnd 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 EcholsIt 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 EcholsI think knowledge is power, education is power.
Dr. Jessica EcholsWe need to continually bring this knowledge to the attention of our healthcare providers.
Dr. Jessica EcholsAnd sometimes people write to me and say, why doesn't my doctor know this?
Dr. Jessica EcholsAnd 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 EcholsSo although it is frustrating, it is new knowledge.
Dr. Jessica EcholsIt will take time for it to get out there, but we are trying our best.
Dr. Jessica EcholsI often speak to groups of clinicians, maybe even once or twice a week, give talks to interested hospitals, interested teams.
Dr. Jessica EcholsSo 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 YoussefYeah, yeah.
Kate Moore YoussefEspecially because how common chronic pain is, you know, and just sort of being having this umbrella of chronic pain.
Kate Moore YoussefYou 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 YoussefSo she's sort of just there as an emotional support to try and help, you know, with well being and self care.
Kate Moore YoussefBut 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 YoussefIt has to go into the hospitals and the, and people who are training, you know, new doctors.
Kate Moore YoussefAnd 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 YoussefAnd 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 YoussefYou know, so much has changed in three years.
Dr. Jessica EcholsYes.
Dr. Jessica EcholsSo I think we are hopefully going to reach a tipping point.
Dr. Jessica EcholsHopefully, yeah.
Kate Moore YoussefAnd 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 YoussefYou know, and they were saying, you know, menopause has been around for forever, but we still as women advocating for ourselves.
Kate Moore YoussefAnd 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 YoussefWe're working on the ground.
Kate Moore YoussefWe 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 YoussefAnd I wonder if you've got anything specifically.
Kate Moore YoussefI 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 EcholsWell, yeah, no.
Dr. Jessica EcholsSo I mean, a bit like neurodivergence, pregnancy can unmask hypermobility.
Dr. Jessica EcholsSome 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 EcholsSo no one person's experience is going to be the same.
Dr. Jessica EcholsBut there are definitely interesting hypermobility related phenomena in pregnancy.
Dr. Jessica EcholsSo a lot of people get this pelvic, this symphysis dysfunction.
Dr. Jessica EcholsPeople may suffer with low blood pressure.
Dr. Jessica EcholsThere are associations with hypermobility and preterm birth or difficult labors.
Dr. Jessica EcholsIn fact, there's a whole wealth of information, a couple of papers published recently about hypermobility and pregnancy.
Dr. Jessica EcholsAnd if you are hypermobile and pregnant, it may well.
Dr. Jessica EcholsOr thinking of becoming pregnant, it may well be worth giving those resources to your care team.
Kate Moore YoussefOkay, thank you.
Kate Moore YoussefAnd 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 YoussefLike 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 YoussefYeah, like do you want to see that in the diagnostic process?
Dr. Jessica EcholsI would definitely want to see it in the diagnostic process.
Dr. Jessica EcholsAnd certainly when we make diagnoses, we are always looking out for physical health things that might point towards hyper, hypermobility.
Dr. Jessica EcholsDo I think that hypermobility should be part of the diagnostic criteria for ADHD and autism?
Dr. Jessica EcholsI don't think all neurodivergent people are hypermobile or all hypermobile people are neurodivergent.
Dr. Jessica EcholsSo I don't think it should necessarily be in the diagnostic criteria, but I think it should.
Dr. Jessica EcholsIf you see one, you should think of the other.
Dr. Jessica EcholsSo say if you are, if you're seeing a neurodivergent person, you should think, oh, are they hypermobile?
Dr. Jessica EcholsIf you're seeing a hypermobile person, you should think, ah, are they neurodivergent?
Dr. Jessica EcholsAnd 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 EcholsSo 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 EcholsAnd 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 EcholsQuite a few of the people that we've been seeing recently have been experiencing fatigue and definitely queries around long Covid.
Kate Moore YoussefYes.
Kate Moore YoussefYeah.
Dr. Jessica EcholsAnd 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 EcholsSo we'll be able to speak more about that in the.
Dr. Jessica EcholsIn the future.
Dr. Jessica EcholsBut in our clinical practice, people really do seem to be.
Dr. Jessica EcholsPain is a big factor.
Dr. Jessica EcholsHow to get onto a pain management program that understands you and also what to do about brain fog and debilitating fatigue.
Dr. Jessica EcholsAnd 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 EcholsAnd the thing is, and those, those are potential indicators of something called postural tachycardia syndrome.
Dr. Jessica EcholsAnd we know that the majority of symptomatic hypermobility patients experience some form of difficulty with standing in terms of orthostatic intolerance.
Dr. Jessica EcholsAnd we know that people who have postural tachycardia syndrome, the majority of them have symptomatic hypermobility.
Dr. Jessica EcholsSo if you, if you can help, get help to manage that.
Dr. Jessica EcholsAnd 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 EcholsHow to help manage these type of symptoms.
Dr. Jessica EcholsSome 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 EcholsSo there seems to be some sort of definite link here between fatigue, postural tachycardia syndrome and hypermobility.
Kate Moore YoussefIt's fascinating to hear these different connections.
Kate Moore YoussefInterestingly, I have low blood pressure and I also get quite dizzy when I stand up quickly.
Kate Moore YoussefWhat 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 YoussefAnd it's helped.
Kate Moore YoussefIt's meant to help with energy and fatigue and I've really noticed a difference.
Kate Moore YoussefAnd 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 YoussefAnd 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 EcholsYeah.
Kate Moore YoussefAnd 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 YoussefI put it in a water bottle and it's.
Kate Moore YoussefYou've got something there, I can see.
Dr. Jessica EcholsYeah.
Dr. Jessica EcholsThis is something called high five and electrolyte sports capsules.
Dr. Jessica EcholsSo the problem is sometimes people think I need to hydrate, I need to drink lots of water.
Dr. Jessica EcholsBut actually that can put you into a worse position because you just pee it out.
Dr. Jessica EcholsWhat you need is for your hydration to be electrolyte balanced.
Dr. Jessica EcholsAnd 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 EcholsIt may well be that that is your body saying you need more salt.
Kate Moore YoussefYeah, it's really interesting.
Kate Moore YoussefJust 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 YoussefSo 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 YoussefWhat can they do right now?
Kate Moore YoussefIf 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 YoussefLike what, what can they be doing right now?
Dr. Jessica EcholsI think getting as much resource as they can.
Dr. Jessica EcholsSo 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 EcholsBecause I think a lot of neurodivergent people have a tendency to be all or nothing.
Dr. Jessica EcholsSo 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 EcholsOkay, so I have this task that I need to do.
Dr. Jessica EcholsI'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 EcholsIt's hard, it's hard for neurodivergent people.
Dr. Jessica EcholsBut 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 EcholsTrying to get that balance is really, really important.
Dr. Jessica EcholsNot doing too much and not doing too little.
Kate Moore YoussefYeah, 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 YoussefSort of actual sort of somatic experience where we're just kind of trying to be sort of more in our bodies.
Kate Moore YoussefI mean do you see a lot of people who are hyper mobile that are.
Kate Moore YoussefI mean I've noticed that when I do yoga I can just do one move and that's it.
Kate Moore YoussefI've like hurt my hip, hurt my back.
Kate Moore YoussefWhat, what would you suggest for people that do want to be active and needing to be active because of the restless energy?
Dr. Jessica EcholsWell, 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 EcholsAnd 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 EcholsSo I think yoga can be really helpful.
Dr. Jessica EcholsBut I think sometimes a hypermobile person can easily overstretch.
Dr. Jessica EcholsSo I would possibly recommend quite basic Pilates over yoga in the first instance.
Dr. Jessica EcholsAnd 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 EcholsAnd also trying to keep up some exercise and activity.
Dr. Jessica EcholsIf it's something like swimming for example, that is non load bearing but is an important, non harmful way of, of exercising.
Kate Moore YoussefYeah, I mean Pilates for sure has helped me now.
Kate Moore YoussefI resisted it for years and years because it was a bit, I found it a bit boring, but actually that has.
Dr. Jessica EcholsBoring and safe sometimes.
Kate Moore YoussefYeah, yeah.
Kate Moore YoussefAnd like for me I enjoyed the yoga.
Kate Moore YoussefI enjoyed the flow, I enjoyed, enjoyed the music and Pilates just felt a little bit clinical.
Kate Moore YoussefHowever, 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 YoussefAnd especially when I can start feeling the pain, I go and do my Pilates and it really, really does help.
Kate Moore YoussefSo 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 YoussefBut 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 YoussefCan 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 EcholsNo, I think that's what we have to start doing.
Dr. Jessica EcholsAbsolutely.
Dr. Jessica EcholsAnd 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 EcholsBut 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 EcholsAnd 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 EcholsSo we need to do this together.
Kate Moore YoussefYeah, absolutely.
Kate Moore YoussefI 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 YoussefAnd 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 EcholsAbsolutely.
Dr. Jessica EcholsI mean, there is no magic bullet for any of these things.
Dr. Jessica EcholsAnd it is all about a series of small steps taken to try and get that balance that we were talking about.
Dr. Jessica EcholsAnd 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 EcholsIf 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 EcholsWe 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 YoussefYeah, definitely.
Kate Moore YoussefAs we see sort of more cycles of burnout in our community as well.
Kate Moore YoussefAnd 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 YoussefDefinitely the choices, the everyday choices that we make that we, we like.
Kate Moore YoussefYou say, you know, if you've got a three hour meeting, how can we break that up?
Kate Moore YoussefChoosing 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 YoussefBecause that is, you know, for the rest of our life we're going to live with this.
Kate Moore YoussefBut every day we make these choices.
Kate Moore YoussefAnd so please anyone that's listening, don't feel despondent.
Kate Moore YoussefDr.
Kate Moore YoussefJessica 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 YoussefSo I just wanted to thank you.
Kate Moore YoussefI presume you don't want me to direct anyone towards you because I know how busy you are.
Dr. Jessica EcholsNo, but I can.
Dr. Jessica EcholsI have a link tree.
Dr. Jessica EcholsSo 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 YoussefWonderful.
Dr. Jessica EcholsOkay, thank you so much, Kate for inviting me.
Dr. Jessica EcholsAnd we hopefully together, all of us can play a part in spreading the word.
Kate Moore YoussefI really hope you enjoyed this week's episode.
Kate Moore YoussefIf 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 YoussefAnd please do check out my website, ADHD womenswellbeing.co.uk for lots of free resources and paid for workshops.
Kate Moore YoussefI'm uploading new things all the time and I would absolutely love to see you there.
Kate Moore YoussefTake care and see you for the next episode.