Hypermobility, EDS and ADHD: Navigating Symptoms and Solutions
Welcome back to a newly relaunched ADHD Women's Wisdom episode! These are snippets from previous guests, bringing back their wisdom from the conversation so you can re-process their fascinating insights and essential knowledge to empower you with more awareness and support.
If you've had ongoing and unexplained chronic pain, fatigue, gut issues, dizziness, anxiety, dislocations, sprains or aching joints, you may be interested in this week's episode discussing the intersection of Ehlers-Danlos Syndromes, Hypermobility and neurodivergence.
This week’s Wisdom guest is Dr Jessica Eccles, a Clinical Senior Lecturer at Brighton and Sussex Medical School in the Department of Neuroscience. Her research is on brain-body interactions, particularly related to joint hypermobility. She is an adult liaison psychiatrist and consultant in the Sussex Neurodevelopmental Service and co-lead of their Neurodivergent Brain Body Clinic.
Dr. Eccles highlights the prevalence of hypermobility and its association with various symptoms, including chronic pain and fatigue, which can significantly impact individuals’ quality of life. Furthermore, she emphasizes the importance of understanding these interconnections, particularly as they relate to neurodivergent individuals who may experience compounded difficulties.
On today's ADHD Women's Wellbeing Podcast, Kate Moryoussef and Dr Jessica Eccles talk about:
- The intricate relationship between neurodivergence and hypermobility.
- The complexities surrounding hypermobility, including its diagnosis and associated symptoms.
- Resources that can facilitate understanding and management of hypermobility symptoms.
- The prevalence of hypermobility in neurodivergent populations emphasises the need for further research.
- Individuals with hypermobility may experience a spectrum of symptoms requiring tailored management strategies.
- Advocating for increased awareness and education among healthcare providers regarding hypermobility and its implications.
- What is Ehlers-Danlos syndrome (EDS)
- The symptoms, challenges and advantages of hypermobility
- The link between (H)EDS, hypermobility and ADHD/neurodivergence
- Side effects of hypermobility
- The interlinks of hypermobility and neurodivergence
- Hormones, EDS and hypermobility frequency in women and how it presents differently in men
- Fibromyalgia, hypermobility and ADHD connections
Looking for support? Join my brand-new online coaching programme, From Burnout to Activating Your ADHD Brilliance. Starting on 3rd March, this will be an intimate and personalised coaching experience for only 10 women.
Find Kate's popular online workshops and free resources here.
Kate Moryoussef is a women's ADHD lifestyle and wellbeing coach and EFT practitioner who helps overwhelmed and unfulfilled newly diagnosed ADHD women find more calm, balance, hope, health, compassion, creativity and clarity.
Follow the podcast on Instagram.
Companies mentioned in this episode:
- EDS UK
- EDS Society
- SEDS Connective
Links referenced in this episode:
Transcript
So welcome back to the ADHD Women's well Being Wisdom episodes.
Speaker A:I'm delighted to have you back here with me.
Speaker A:If you have not heard these before, they are the small bite sized wisdom snippets from my amazing guests so you can reprocess them, understand them or listen to them again or you may have missed the episodes from quite a long time ago.
Speaker A:And I am absolutely delighted to be able to bring these back to you because I know how important it is for us to understand this information and and maybe see it in different lights from the first time we listened.
Speaker A:And I'm delighted to bring to you a fantastic snippet from my previous conversation with Dr.
Speaker A:Jessica Echols.
Speaker A:Now, Dr.
Speaker A:Jessica Echols was on the podcast about a year or so ago and she is absolutely fantastic because she's bringing the most up to date research on the brain body connection.
Speaker A:She's a specialist in hypermobility, neurodivergence and also plays a huge role in being able to understand the connection of neurodivergence inflammation for chronic fatigue.
Speaker A:I know that so many people are desperate for more answers and I Hope that through Dr.
Speaker A:Eccles research and hopefully the evidence that's coming from this research that we're going to get these answers.
Speaker A:So here is my previous conversation with Dr.
Speaker A:Jessica Echols and make sure that you are following the podcast because she's coming back on on a Thursday episode we're going to have even updated information.
Speaker A:I'm really excited to bring this to you.
Speaker A:Here is the wisdom episode.
Speaker B:Hypermobility, I think in some ways is a bit of a misnomer.
Speaker B:So hypermobility describes joints that are unusually flexible.
Speaker B:But what it is is it's a marker of something different in terms of the connective tissue.
Speaker B:So the building blocks of how the body is built.
Speaker B:So some people have hypermobility and this can be an advantage.
Speaker B:Say if you're a gymnast, a ballet dancer, musician, it means that you can do things that other people perhaps can't.
Speaker B:But because a connective tissue, the thing the lacks connective tissue that makes the joints more flexible is everywhere in the body.
Speaker B:It can actually affect all sorts of systems in the body.
Speaker B:Some people who are hypermobile, they have other features.
Speaker B:So they may have pain, they may have dislocations, that's when joints come out of socket or subluxations, when joints nearly come out of socket.
Speaker B:They may have skin signs.
Speaker B:So they may have things like easy bruising, stretch marks, thin papery skin.
Speaker B:They may have things like hernias, prolapses, and so if you have the presence of flexible joints and there's certain cutoffs, which we could debate for a long time.
Speaker B:But if you have both the presence of flexible joints and those associated features, then you may be diagnosed with something called hypermobile eds.
Speaker B:Now, the EDS stands for Ehlers Danlos syndrome and Ehlers Danlos syndromes.
Speaker B:There are, in fact, 13 or 14.
Speaker B:It's under debate.
Speaker B:And some of them are incredibly, incredibly rare and have known genetic mutations.
Speaker B:All people who have Ehlers Danlos syndrome have joint hypermobility, but not all people with joint hypermobility have Ehlers Danlos syndrome.
Speaker B:And most people who are hypermobile with symptoms have something called hypermobile Ehlers Danlos syndrome if they have an Ehlers Danlos syndrome.
Speaker B:And for that there is no single or clear genetic cause.
Speaker B:But we know that it runs in families.
Speaker B:If you have a family member who's affected, you yourself are more likely to have the condition.
Speaker B:But as far as I kind of conceptualize it and think about it, in some ways it's easier just to think about having hypermobility.
Speaker B:And we can think about, how would I know if I was hypermobile?
Speaker B:And then there's hypermobility with symptoms.
Speaker B:So symptomatic hypermobility.
Speaker B:And if you have symptomatic hypermobility, but you don't meet the rigid criteria for hypermobile eds, then you have something called hypermobility spectrum disorder.
Speaker B:So there are lots of.
Speaker B:This is Alphabet soup, basically.
Speaker B:There are so many different terms, and there are some historical terms as well, which further adds to the confusion.
Speaker B:So when I was at medical school, I was diagnosed with something called joint hypermobility syndrome.
Speaker B:And joint hypermobility syndrome is now being superseded by HEDs and HSD.
Speaker B:There are also other older terms or EDS terms used to describe what is now thought of as HEDs, like EDS Type 3 or EDSHT.
Speaker B:But currently, if you have symptomatic hypermobility, you either have hypermobility spectrum disorder or you have HEDS or one of the other forms of eds.
Speaker B:So that is maybe even more confusing.
Speaker B:But I think the important message is it doesn't actually matter what the label is.
Speaker B:It's identifying that you have symptomatic hypermobility.
Speaker B:The outcomes and management are the same for both HSD and for heds.
Speaker A:So thank you so much for explaining all that.
Speaker A:And it kind of just compound the confusion, really, because, you know, as we're navigating your 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.
Speaker A:It can feel very overwhelming.
Speaker A:And you know, I think what's interesting is what you said.
Speaker A:There's a hypermobility spectrum disorder.
Speaker A:So we can sort of see the presentation of symptoms.
Speaker A:But like you say, if it's a spectrum, it may be incredibly debilitating and life altering, or it could just be something that we live with that's uncomfortable, but our life doesn't really change.
Speaker A:Is that, you know, is that what you're seeing a lot of and you're seeing this sort of spectrum and does it have any impact of how your neurodivergence shows up?
Speaker B:Oh, I see.
Speaker B:Well, those are really interesting questions and I don't actually know, I don't think we know all of the answers to them.
Speaker B:So I think the thing about hypermobility, just like neurodivergence, is that it comes with both strengths and challenges.
Speaker B:And we have to, we have to take that into consideration.
Speaker B:So, for example, an odd strength of hypermobility is having skin that looks more youthful.
Speaker B:So I don't know if many of the listeners have ever been in the position of being, you know, asked for ID in the supermarket when they're in their 30s or 40s because they have this type of skin that looks soft and youthful.
Speaker B:And that means that actually sometimes people can look younger than they seem.
Speaker B:There are some piano pieces and pieces of music that can only be played by people with hypermobile fingers.
Speaker B:And if you watch, you know, the gymnastics or tennis, you can see how having hypermobility can be a real advantage in certain scenarios.
Speaker B:But at the same time it comes with challenges.
Speaker B:And those challenges are on a spectrum.
Speaker B:And so the biggest ones that people seem to contend with really are things like pain and fatigue and other issues like, and they may be all interrelated things like gut issues, you know, irritable bowel, irritable bladder, asthma, and then this whole phenomenon of things like dizziness on standing, dizziness after eating a large meal, dizziness after being in a hot environment, which we can talk about a bit more later because this is all to do with abnormalities of the involuntary nervous system.
Speaker B:And then there are other issues.
Speaker B:So with hypermobility, some of the work that we've been doing has been about anxiety.
Speaker B:So hypermobile people are more likely to experience anxiety than non hypermobile people.
Speaker B:And we know that a lot of neurodivergent people experience anxiety too.
Speaker B:So there are all sorts of intersects and overlaps both between the brain and the body, between Strengths and challenges and between hypermobility and neurodivergence in general.
Speaker B:Now, what we know about hypermobility and neurodivergence is actually very much in its infancy.
Speaker B:It's very, very early on.
Speaker B:So what we, 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.
Speaker B:Now, that is almost certainly the tip of the iceberg because you can imagine how hard it is to be diagnosed with both.
Speaker B:There will be so many people who actually experience EDs who do not have a diagnosis and many neurodivergent people who are neurodivergent who do not have a diagnosis.
Speaker B:So I suspect those figures are actually quite conservative.
Speaker A:Yeah.
Speaker B:Because they are only, only what was available in the registry.
Speaker B:But what we know from the work that we did is that if you were neurodivergent, you were twice, you were, you were four times as likely to be hypermobile than if you were not neurodivergent.
Speaker B:Now, when I say hypermobile in that context, I don't mean symptomatic hypermobility.
Speaker B:I just mean the presence of generalized joint hypermobility.
Speaker B:Yeah.
Speaker B:So there is so much more work to be done in terms of exactly how many people, well, discovering for a start, exactly how many people have heds.
Speaker B:We have no idea.
Speaker B:We literally have no idea what the prevalence of HEDs is.
Speaker B:We know from quite robust population studies what the prevalence of generalized joint hypermobility is.
Speaker B:We, we know that that affects probably one in five people, maybe even up to one in three women, but we really don't know how many of them are symptomatic.
Speaker A:I mean, it's absolutely fascinating.
Speaker A:I mean, first of all, I've written in my notes here that from what I read, there's a much higher incidence of hypermobility and EDS in women, is that it's a much higher ratio.
Speaker A:Is it because it's.
Speaker A:Is it hormone driven?
Speaker B:Well, this is really interesting.
Speaker B:So, yes, there is a degree to which hormones affect connective tissue.
Speaker B:And we typically think that EDS and hypermobility is more common in women than men, and it certainly is more frequently diagnosed in women than men.
Speaker B:But I've been wondering.
Speaker B:I think it is more common in women than men, but I think that maybe we're not looking for it in men in the same way.
Speaker B:And that actually men may have hypermobile features that are often missed, so they might have thin narrow wrists, which is part of the diagnostic criteria but not part of the hypermobility screening.
Speaker B:They may have thin faces with narrow features, they may have soft, stretchy skin that bruises easily.
Speaker B:And these wouldn't necessarily be picked up in the, in the screenings.
Speaker B:And just as we are beginning to realize that actually neurodivergence probably affects men and women equally, there are studies suggesting that autism is just as common in male, in females as in males.
Speaker B:And we know that what we thought, what I was taught at medical school, you know, kind of nine times more likely to be male if you're autistic and, and the same with adhd, is actually not true.
Speaker B:We mind that this is actually the case with hypermobility too in the future, but that, that is a real big conjecture, but there is undoubtedly whatever is actually going on.
Speaker B:There is strong influences of hormones on hypermobility symptoms, but that is not well researched or properly understood.
Speaker B:But we know from clinical encounters talking to patients that some of the hypermobility associated symptoms, so things like pa, dizziness, gut problems, they all can have menstrual fluctuations.
Speaker B:And sometimes just, just as people find the same with their ADHD features or their sensory sensitivities, just as we find that in neurodivergence, we find the same thing in hypermobility.
Speaker A:And so how can we start turning this dial now like this?
Speaker A:I hope this conversation goes out to thousands of people and I hope by having this conversation there are connections that people can start making.
Speaker A:But when they go to their care providers, how can we start getting the diagnosis, the testing, the understanding, the validation so things can start progressing for us?
Speaker B:It's really hard and unfortunately services are not ideally configured at the moment.
Speaker B:Essentially, if you suspect you may be hypermobile, there are some really good resources for GPs from the EDS UK website called the EDS GP Toolkit and I'm sure you'll be able to link to that.
Speaker B:And that supports doctors, including GPs, to make a hypermobility diagnosis and to help manage commonly associated symptoms.
Speaker B:So things like the dizziness on standing that we were talking about, the postural tachycardia syndrome and also some allergy things that people experience called mast cell activation.
Speaker B:So this resource does help doctors to understand about hypermobility more, but many of them will probably say, oh, if you want a diagnosis you've got to see a rheumatologist.
Speaker B:And unfortunately the waiting times in the UK for seeing rheumatology are very long.
Speaker B:And some rheumatology services are saying we don't see people with EDS, we're not diagnosing HETS, it's not part of our pathway.
Speaker B:So there are there, there can be some obstacles.
Speaker B:But what we know from research that we've done is that a lot of people actually end up with a diagnosis of fibromyalgia when in fact probably at least 4/5 of people with fibromyalgia actually have symptomatic hyper mobility.
Speaker A:Is there self diagnosis?
Speaker A:I mean, how, how do people get help?
Speaker B:It is a, it is a real minefield and I would encourage people to look for help from the EDS Society.
Speaker B:And also I am the patron of a Sussex charity called SEDS Connective that is specifically there to support and advocate for hypermobile neurodivergent people.
Speaker B:So I think people essentially have to be empowered to think things through themselves because of the way that services are constructed.
Speaker B:There is also a really good book by someone called Claire Smith about understanding hypermobile EDS and hypermobility spectrum disorder.
Speaker B:And I would strongly recommend that anyone who thinks they may have symptomatic hypermobility read that book and then see all of the, all of the possible connections with physical health things.
Speaker B:It was written a few years ago, so it doesn't really have much to say about neurodivergence and mental health associations, but it is a really good starting point and something to take to the GP and say, look, I've been reading this and this is what I'm finding.
Speaker B:I think knowledge is power, education is power.
Speaker B:We need to continually bring this knowledge to the attention of our healthcare providers.
Speaker B:I think getting as much resource as they can.
Speaker B:So the things like the EDS UK website, the POTS UK website, the Claire Smith 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.
Speaker B:Because I think a lot of neurodivergent people have a tendency to be all or nothing.
Speaker B:So it's either doing all of the things all at once or nothing at all and actually trying to get some balance of.
Speaker B:Okay, so I have this task that I need to do.
Speaker B:I'm going to try and do one of them and then maybe build up to one and a half rather than going from one task to ten and then crash and burning is hard.
Speaker B:It's hard for neurodivergent people.
Speaker B:But I think there is a lot of patterns of, you know, getting into cycles of hyperactivity and exhaustion that probably compound and worsen pain and other, other symptoms.
Speaker B:Trying to get that balance is really, really important.
Speaker B:Not Doing too much and not doing too little.
Speaker A:Yeah, I mean obviously we're, you know, I, I talk about doing things, you know, somatic work, whether it's stretching, that's yoga, it's anything else.
Speaker A:Sort of actual sort of somatic experience where we're just kind of trying to be sort of more in our bodies.
Speaker A:I mean, do you see a lot of people who are hypermobile that are.
Speaker A:I mean I've noticed that when I do yoga I can just do one move and that's it.
Speaker A:I've like hurt my hip, hurt my back.
Speaker A:What would you suggest for people that do want to be active and needing to be active because of the restless energy?
Speaker B:Well, it's interesting and I myself when I was at medical school, went on a pain management program and learned about some of these techniques from the other side as a patient.
Speaker B:And I think it's about doing it in a gentle way that encourages strength and stabilization with someone who understands the hypermobile body.
Speaker B:So I think yoga can be really helpful.
Speaker B:But I think sometimes a hypermobile person can, you know, easily overstretch.
Speaker B:So I would possibly recommend quite basic Pilates over, over yoga in the first instance.
Speaker B:And when you, when you, because the core, getting that stable core is so important for so many things and just taking it really gent, not trying to do all of the moves all of the time, just really focusing on getting the basic moves right I think is important and also trying to keep up some exercise and activity.
Speaker B:If it's something like swimming for example, that is non load bearing but is an important, non harmful way of exercising.
Speaker A:So I hope you enjoyed listening to this shorter episode of the ADHD Women's Wellbeing podcast.
Speaker A:I've called it the ADHD Women's Wellbeing Wisdom because I believe there's so much wisdom in the guests that I have on and their insights.
Speaker A:So sometimes we just need that little bit of a reminder and I hope that has helped you today and look forward to seeing you back on the brand new episode on Thursday.
Speaker A:Have a good rest of.
