A Ground-Breaking Understanding on ADHD, Hypermobility and the Mind-Body Connection
In this week's ADHD Women's Wellbeing Wisdom episode, we revisit a ground-breaking conversation with Dr. James Kustow. Dr. Kustow is a highly regarded expert in adult ADHD, author, Director of Education at UKAAN and the winner of the ‘Genius Award’ at the 2021 Celebrating Neurodiversity Awards run by Genius Within.
In this episode, Dr. Kustow shares how ADHD is more than just a brain-based condition and explains how physical health conditions such as chronic pain, gut issues, and hypermobility are all linked to ADHD through inflammation and autoimmune conditions.
My new book, The ADHD Women's Wellbeing Toolkit, is now available, grab your copy here!
What You'll Learn:
- How the structure of Western medicine is neglecting ADHD patients with unexplained physical symptoms
- How integrating physical and mental health approaches can lead to more complete, compassionate ADHD care
- The overlooked physical health issues often linked to ADHD, including chronic pain, fatigue, immune challenges, and gut problems
- How hypermobility and connective tissue disorders like EDS (Ehlers-Danlos Syndrome) are commonly seen in ADHD
- The relationship between collagen deficiency, gut health, and mental health symptoms in ADHD women
- What the somatic super syndrome model reveals about inflammation, blood flow to the brain, and mental health
- How dysautonomia and conditions like POTS (Postural Orthostatic Tachycardia Syndrome) affect mood, sleep, anxiety, and cognitive function
- The role of inflammatory mediators in ADHD and why they're crucial to understanding chronic conditions like fibromyalgia and autoimmune issues
Timestamps:
- 1:16 – The Structure of the Western Medical Setup and Its Gaps in ADHD Care
- 2:50 – How Dr. Kustow's Personal Experience Shaped His Holistic Approach to ADHD
- 4:12 – Common Patterns in Physical Health Issues Among ADHD Patients
- 6:48 – The Link Between Connective Tissue Issues and ADHD
- 8:38 – Inflammatory Mediators and Their Role in ADHD’s Physical Presentation
- 9:23 – Understanding the Somatic Super Syndrome Model
- 11:45 – Dysautonomia and How It Impacts ADHD Symptoms
- 14:00 – EDS and Hypermobility Spectrum Disorder in the ADHD Population
If you’ve ever felt like you can't join up the physical conditions you're navigating, this episode is for you. ADHD affects the whole body, not just the brain, and understanding that opens the door to more effective and compassionate support.
Links and Resources:
- Join the Waitlist for my new ADHD community-first membership launching in September! Get exclusive founding offers [here].
- Find my popular ADHD workshops and resources on my website [here].
- Follow the podcast on Instagram: @adhd_womenswellbeing_pod
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.
Transcript
Hello, welcome back to another Wisdom episode.
Speaker A:And today we have a clip from my previous guest.
Speaker A:His name is Dr. James Custo.
Speaker A:He has written a great book called how to Thrive with Adult adhd Seven Pillars for Focus, Productivity and Balance.
Speaker A:He's a leading consultant psychiatrist and he's also a highly respected expert in adult adhd and he also has ADHD himself.
Speaker A:And the conversation that we had was really, really powerful.
Speaker A:We talk about the brain, body, conn.
Speaker A:He's also on the board of the UK Adult ADHD Network and he's played a pivotal role in shaping national training programs for psychiatrists.
Speaker A:He really does know his stuff.
Speaker A:We had a great conversation but in this clip you're going to hear about ADHD and the connecting of the physical health, including dysautonomia, chronic inflammation, that mind body connection.
Speaker A:And we also touch on the link between ADHD and hypermobility which impacts almost half of us with adhd, perhaps more.
Speaker A:We still don't know enough, unfortunately.
Speaker A:So I really hope you find this epic episode insightful, informative and as always, please do share this information does need to be shared further and wider with anyone that you think that needs to understand this conversation better.
Speaker A:But here it is.
Speaker B:I think even before any discussion about adhd, we have our whole medical, Western medical system is set up in a quite a divisive way really.
Speaker B:The, the mind and mental health issues and neurodevelopmental issues are on one side and the body and the physical health problems are on another and even the specialities are completely separate.
Speaker B:The medics sort of don't give much weight to psychiatry and psychiatry doesn't necessarily think about the body as much as it should.
Speaker B:So there's this gap and it goes back a long way and the idea that the two systems are not one, I was going to say connected, but even more so that, you know, it's an integrated system.
Speaker B:So and lots of the research and the studies in ADHD have reinforced that ADHD is a very brain condition.
Speaker B:We haven't traditionally been looking at physical health comorbidity.
Speaker B:Now when I say comorbidity I mean conditions that cluster together with, in this case ADHD at a higher rate than you would expect in the non ADHD population, in the general population.
Speaker B:So we haven't really looked at what physical health problems cluster together in adhd.
Speaker B:So if you have adhd, what problems are you more likely to have?
Speaker B:We just simply haven't been looking at it until recently.
Speaker B:Now, before the data even started looking at this in detail maybe 15 years ago, given the fact that I'd come from a liaison psychiatry background and that I was very interested in the physical body and that I had unknowingly at the time adhd and I was also quite perfectionist.
Speaker B:And, and, and I, you know, I hyper focused and went into detail and things very, from very early on I would always take a very detailed physical health history from my patients with adhd.
Speaker B:Someone would come in, I think I might have adhd.
Speaker B:Doctor, this is what's going on.
Speaker B:I would then after exploring all of that stuff, I would then say, okay, can tell me about your physical health issues.
Speaker B:Any, anything that you have.
Speaker B:Now when you ask a very open question, do you have any physical health problems?
Speaker B:Quite often the answer comes back, oh no, no, no, not really, I'm fine, I'm fine.
Speaker B:But when you dig down and you go system by system and you ask questions about the respiratory system, the cardiovascular system and the skin and all of these different areas in some detail, you really start to uncover more stuff.
Speaker B:Oh yes, I've got that.
Speaker B:Oh yes, I did have those weird allergies and that strange post viral, post infection exhaustion.
Speaker B:But oh yes, and I did have, I reacted to food.
Speaker B:So it's about how deep you dig.
Speaker B:And I was digging deeply and I started to notice a couple of patterns.
Speaker B:First thing I noticed, which was really intriguing actually was that more of my patients seem to have hypermobility.
Speaker B:That hypermobility is basically a connective tissue issue where your connective tissues, the tissues that hold your body together, have a different or an abnormality in their structure or function.
Speaker B:So the main protein, structural protein of the body is collagen.
Speaker B:And collagen in people with hypermobility is lax, it's floppy, it bends more and so on.
Speaker B:And collagen is present in your ligaments and your tendons.
Speaker B:So it's not surprising that people with this connective tissue issue and lacks collagen have joints that bend more than they should, that they were more lax.
Speaker B:So that's not so much of a surprise.
Speaker B:But what I didn't realize at the time was that mapped around people with lax joints is a whole network of very characteristic physical and mental health problems.
Speaker B:And the reason that's the case is that it's not just ligaments and tendons where there's collagen, but collagen is present all over the body.
Speaker B:It's present in the skin, it's present in the muscles, it's present in the eyes, it's present wrapped around the blood vessels and it's responsible for tightening up the.
Speaker B:Helping tighten up the blood vessels so you can.
Speaker B:The way you move blood around the body is by pumping the heart faster or tightening in certain places and loosening in other places.
Speaker B:You can direct blood around the body.
Speaker B:And collagen is also wrapped around the gut so it helps with that peristaltic movement through the gut.
Speaker B:So every system in the body is impacted when you have connective tissue that's lacks.
Speaker B:Now there were various other problems that I was picking up in my patients, but pain was one of them actually.
Speaker B:And quite naively early on I thought, okay, people with hypermobility, they're going to get injured, they're going to injure their joints a bit more and they're going to have a bit more pain.
Speaker B:But as I dug a bit deeper because I just was seeing this, this connection with ADHD that was really much stronger.
Speaker B:I was getting about 35, 40% of my patients in the gap between me making this like wow, this is crazy what's going on here?
Speaker B:Why is this connection so strong?
Speaker B:There have been a couple of research studies looking at this really good quality research studies and one of them demonstrated that people with ADHD.
Speaker B:About 50% of people with ADHD are hypermobile, which is a shockingly high amount, shockingly high number.
Speaker B:Half the people with ADHD have this system wide connective tissue issue with characteristic physical health problems piggybacking off it.
Speaker B:The more I dug and the more I uncovered, the more I realized that actually looking at ADHD from this broader distance, looking at the physical health stuff and all this hypermobility stuff, it's as if ADHD is just one component of a much bigger map that at least in some people, I mean I'm not 50% of people don't have hypermobility who have ADHD.
Speaker B:So I'm not suggesting that what we understand to be ADHD is purely this, but there is this very large group within the ADHD community and it's more women than men actually, because hypermobility affects women more than men, but that have a very characteristic cluster of problems that seem to be very much to do with their connective tissue and their immune system.
Speaker B:These patterns basically align the ADHD comorbidities and the hypermobility comorbidities strongly overlap.
Speaker B:And over the last few years there has been more and more evidence showing that ADHD is linked to pain disorders to so fibromyalgia, to chronic fatigue syndrome.
Speaker B:There's a massive increase in allergies and autoimmunity in the ADHD population.
Speaker B:There are studies looking at inflammatory mediators, inflammatory chemicals in the bloodstream, and they're much higher rates in ADHD and even higher rates in autism, actually.
Speaker B:So we are seeing this picture that ADHD is a quite an inflammatory presentation and that it has these strong relationships with a variety of physical health problems.
Speaker B:And until now, as far as I know, there's been no story or weaving together of these things that makes sense and brings everything together in a picture.
Speaker B:But I feel like over the last few years, that's all I've been concentrating on.
Speaker B:And I think I found some very, very interesting things.
Speaker B:And I've called the model that I that maps this out, the somatic super syndrome and its neuropsychiatric expression, or sequelae.
Speaker B:It's basically saying that all of the mental health problems, many of the mental health problems and neurodevelopmental problems we know today, including issues around pain and sensitivity and fatigue, which are more neurological than psychiatric, are linked to this cluster of physical health problems and in all likelihood driven by inflammation and impaired blood supply to the brain.
Speaker B:Now, this is the key point.
Speaker B:I'm sorry, it's taken me quite a long time to get here because it's not straightforward.
Speaker B:But when we think of ADHD and autism and depression and anxiety disorders, we think about brain.
Speaker B:We think about neurotransmitters, brain chemicals, we think there's too little serotonin or we think there's too much dopamine or not enough dopamine or.
Speaker B:And of course, this is an important expression of it.
Speaker B:But it's like looking at a problem that has multiple entry points, multiple views of it, but looking at it from one view and saying, this is the problem, this is the issue.
Speaker B:Whereas actually, if you look at it from a different angle from maybe the body or from the immune system, you see a different picture, but it's the same thing you're looking at.
Speaker B:It's like you're looking at different parts of an elephant, but, you know, fascinated by the feet, but in fact, there's a whole elephant there with different angles to look at it.
Speaker B:And because these things can actually drive neuropsychiatric symptoms without any need for brain chemistry changes.
Speaker B:Because what happens when you get inflamed and the inflammation goes to the brain?
Speaker B:What is that?
Speaker B:That looks like anxiety and irritability.
Speaker B:Irritability, by the way, is one of the strongest inflammatory neuropsychiatric symptoms.
Speaker B:I went to a very impressive talk that recently that said that irritability is quite a strong inflammatory symptom.
Speaker B:So it's basically saying we can, we can explain a lot of mental health and some neurodevelopmental things without needing to talk about neurotransmitters, talking about not enough blood to the brain.
Speaker B:Because one of the clusters in this group is actually something called dysautonomia and this is where your autonomic nervous system is not working properly.
Speaker B:One of the main conditions in dysautonomia is pots.
Speaker B:Many of your viewers will know what POTS is.
Speaker B:It's called postural orthostatic tachycardia syndrome.
Speaker B:And basically you stand up and then you get symptoms.
Speaker B:You're getting symptoms, you get heart racing very fast, you get dizzy and lightheaded, you're getting symptoms because there's not enough blood supply going to your brain.
Speaker B:And if there's not enough blood supply going to your brain, there's not enough oxygen going to your brain.
Speaker B:And why are you getting a heart racing?
Speaker B:Because your heart's trying to compensate and get more blood to your brain.
Speaker B:But those symptoms you get when you have a POTS attack, or the people who stand up and get dizzy and light headed regularly, you know, that's a very obvious acute dramatic presentation of not enough blood to the brain.
Speaker B:What if you died down a bit and there's not quite enough blood going to the brain?
Speaker B:What does that look like?
Speaker B:It looks like anxiety and depression and irritability and sleep problems and mood problems and you know, what's the, which one is it?
Speaker B:Is it not enough blood to the brain or inflammation going into the brain or is it what we traditionally understand to be adhd?
Speaker B:So hypermobility.
Speaker B:Let's just be really clear first of all that not everyone who has lax joints has problems.
Speaker B:There's asymptomatic or uncomplicated hypermobility and it's.
Speaker B:You live with it and you have no problems.
Speaker B:You might do gymnastics, more likely than other people.
Speaker B:And as long as you don't get injured or you don't get ill down the line, then that hypermobility is just normal variant stuff.
Speaker B:However, quite a large proportion of the hypermobility world will at some point develop a characteristic cluster of problems.
Speaker B:And they typically include problems linked to pain.
Speaker B:Like I said before, pain due to injury, overstretching joints and getting injured and getting deconditioned and then that spiraling.
Speaker B:But there are other non injury related complications, this characteristic picture I'm talking about, that include dysautonomia and immune over activation.
Speaker B:So this is the triad, the hypermobility syndrome which is known as EHLERS Danlos syndrome, when it gets pathological, when there's a problem linked to it, or hypermobility spectrum disorder.
Speaker B:These are two clusters.
Speaker B:The Ehlers Danlos syndrome is the more severe end of the spectrum.
Speaker B:But be mistaken, hypermobility spectrum disorder or HSD can be extremely serious.
Speaker B:But it's basically this group of people are people with hypermobility and other problems.
Speaker B:They typically have dysautonomia immune over activation and over time they're more likely to get gut related problems for a variety of reasons and autoimmune related illness over time because think about it, the immune system is reacting excessively, something's triggering it and it's reacting and it's reacting chronically excessively producing lots of inflammation.
Speaker B:Which I by the way is, is how you generate the ADHD or the anxiety etc those symptoms.
Speaker B:And when a system is firing too much, it's excessively firing.
Speaker B:It's not a big jump for it to start making mistakes and instead of attacking the bacteria or the virus that it starts attacking aspects of the cell.
Speaker B:And that's what autoimmunity is.
Speaker B:So this is the pattern immune over activation and autoimmunity dysautonomia like dysfunction of the autonomic nervous system, which interestingly is the stress system as well as being the how do you move blood around the body system, the autonomic this, the parasympathetic and the sympathetic the balancing thing.
Speaker B:And so you get this cluster with hypermobility, dysautonomia, immuno overactivation and gastrointestinal problems and all of those things in slightly different ways actively physically drives mental health symptoms.
Speaker B:And that's why people with hypermobility have way higher rates of most mental health problems, but particularly adhd.
Speaker B:Anxiety is probably top of the list.
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 your week.
