Ep. 10: Neurodivergence and the Overlap - EDS, POTS, Fatigue, MCAS, & Eating Issues

In this episode Nichi Morrin dives into the complex interplay between neurodivergence and chronic body-mind conditions like Ehlers-Danlos Syndrome (EDS), Postural Orthostatic Tachycardia Syndrome (POTS), Chronic Fatigue, and Mast Cell Activation Syndrome (MCAS). Nichi shares her insights from years of working closely with individuals facing these challenges, shedding light on how these conditions overlap and influence one another, particularly within neurodivergent populations.

Nichi explores how these invisible conditions can affect daily life, from joint pain and dizziness to brain fog, digestive issues, and sensory sensitivities. Throughout the episode, she emphasizes the importance of a holistic health story—viewing the body and mind as interconnected—to better understand, manage, and support those with these overlapping conditions.

Nichi also introduces her upcoming program, focused on autonomic nervous system awareness and regulation, and a new health story report service to help individuals communicate their unique health needs more effectively.

Key Takeaways:

1. Understanding Neurodivergence and Health Conditions: Neurodivergent individuals (e.g., those with ADHD or Autism) often experience heightened sensory sensitivities and symptoms overlapping with conditions like EDS and POTS. 
2. Complex Impact of Ehlers-Danlos Syndrome (EDS): EDS leads to a range of symptoms, from joint pain and dislocations to chronic fatigue and psychological impacts like anxiety.
3. The Challenge of Postural Orthostatic Tachycardia Syndrome (POTS): POTS affects the autonomic nervous system, causing symptoms like dizziness, heart palpitations, and fainting when standing. 
4. Chronic Fatigue and Energy Management: Unlike ordinary tiredness, chronic fatigue impacts the body at a core level, often exacerbated by nervous system dysregulation. 
5. Mast Cell Activation Syndrome (MCAS): With MCAS, the immune system’s alarm system is overactive, leading to symptoms like hives, respiratory issues, and digestive discomfort. 
6. The Role of the Autonomic Nervous System: A hyperadrenergic state, where the body is “on high alert,” contributes to symptom severity. 
7. Holistic Health Story: Nichi’s new health story report service aims to improve healthcare communication and understanding for those with complex conditions.

• Register Interest for the Upcoming Program: https://nichole-morrin.mykajabi.com/signup
• Health Story Report Service: https://www.rewiredpsychology.com.au/

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Previous Intro and Outro music: Inspirational Acoustic - Organic Harmony by Sonican; and Andrii Poradovskyi from Pixabay.  Current music: levgen Poltavskyi from Pixabay.  
Disclaimer: This content is general in nature and intended for educational purposes only.  It is not deemed as psychological treatment and does not replace the advice from your health professional or need for psychological treatment.  

Transcript

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Welcome to the Sustainable Success Series, the podcast where my mission is to transform the worlds of those living with invisible conditions, supporting them to become their biggest advocates, begin to heal and make sustainable changes to get back being too busy living. We explore sustainable success in health relationships and business. We raise awareness and we relatable stories from people just like you. Driven visionary people who dream of more for their life without sacrificing their health. or being stuck behind those invisible chains. Plus, the insights, knowledge and know how from those in the field. I'm your host, Nicky Moran. I've been through the trenches myself, through trauma, adversity, and invisible conditions. I've combined my lived experience, my learnings, and my diverse knowledge as a clinical psychologist, sustainable success coach, author, rural businesswoman, and entrepreneur to transform my life. My vision is to inspire a global movement for a world where invisible conditions are understood, accepted, and met with sustainable solutions. Empowering people to live with energy, purpose, and fulfillment. And I do this through the Million Scene Movement. Join me and be inspired, be curious, and become excited. This is the Sustainable Success Series. Welcome everyone. Welcome back to the Sustainable Success Series. As a clinical psychologist and sustainable health coach, I've had the opportunity to work with many incredible people, each with their own unique story of resilience and strength. It blows my mind some of the courage that some of the people I work with have. Today I want to talk about one of the patterns that I see so often, and this is one that is really close to my heart. And it's around the overlap with neurodivergence. So, neurodivergence is a term to do with celebrating brain differences or neural adaptations. So, for example, this could be Autism Spectrum Disorder or ADHD. Or other specific learning disorders or neurodevelopmental conditions fall into that criteria too. So, one of these patterns that I see often with the people I work with, and it's particularly with those who are assigned female at birth, is how these overlapping symptoms with the neurodivergent traits, such as, they may be hypersensitive to certain things, whether it's sound, light, touch, taste, crowds. They may have difficulties with focus, with attention, with concentration, with forgetfulness, with being able to, focus their attention and not be easily distracted, but also there's the somatic or the, the physical health concerns. So they may come with anxiety, low mood. Feeling sick a lot of the time, particularly after eating. Feeling tired or fatigued. These difficulties impacting their day to day life. They may feel exhausted, not just physically, but mentally and emotionally. They may get headaches or have pain in certain parts of their body that just doesn't seem to go away or they're not sure how to put the words together to tell a story for what's going on. There could also be signs of dysautonomia, which is dysregulation of the autonomic nervous system. For example, heart palpitations, or feeling dizzy when standing up, or when exposed to heat. Now these experiences aren't always to name or explain to someone else. So when I work with people, to bring it all together holistically, I like to call it a health story. When we see the mind and body as parts of a larger narrative, it's easier to understand how all these symptoms interconnect. It becomes a lot clearer, well we can't just treat one symptom in isolation, but rather need to look at the full picture. The mind, the body, the environment, all the factors that do impact somebody's life and what's going on for them. That's exactly what I want to explore today in this episode. We're going to dive deep into the several overlapping conditions that many people with neurodivergence live with, and not all are neurodivergent, but some of these conditions that we're going to talk about today is Ehlers Danlos Syndrome, or EDS, also referred to as hypermobility spectrum disorder. Also POTS, Postural Orthostatic Tachycardia Syndrome, Chronic Fatigue, Mast Cell Activation Syndrome, and the eating issues or the gut health that comes along with these. So if you're listening and have ever felt dismissed or that your symptoms are somehow all in your head, I want you to know that they are not all in your head. They are real and they are valid experiences. Thank you Many of these body mind conditions go hand in hand, and they share common roots in our bodies and minds. So, let's break them down together. To start, I'm going to start with Ehlers Danlos Syndrome, or EDS. It's also referred commonly as Hypermobility Spectrum Disorder, as these conditions occur on a spectrum. These are connective tissue disorders, and for those with EDS, it's a lifelong condition affecting our collagen. The fundamental building block in our bodies, how it functions. Collagen affects so much more than we usually think. It's beyond just joints. It impacts our skin, our blood vessels, and even our digestive system. Many people with EDS live with hypermobility, which may initially represent, be presented as flexibility or being double jointed, but over time it can lead to joint pain, frequent dislocations and chronic fatigue amongst many other things. For some, this might mean that they can do a few party tricks like bending their fingers backwards. But for others, it involves daily pain, muscle strain and inflammation. People with EDS, particularly the hypermobile type, which is hypermobile EDS, the most common out of the 13 Often experience a range of physical and psychological effects beyond just flexibility. Chronic joint pain, muscle spasms and the tendency for injuries can lead to a high prevalence of anxiety and depression due to the unpredictability of the symptoms. Every day is different. Living with EDS may mean regular visits to different people, physical therapists or even surgeries to address reoccurring injuries or dislocations. Beyond the obvious joint flexibility or bendy bodies, EDS can also affect other bodily symptoms. So your skin may be softer, it may be more transparent, more elastic, or bruise easily. While some people experience issues with internal organs or blood vessels, including a higher risk of developing hernias or varicose veins. There's a psychological component too. So, many people living with EDS report feeling dismissed by healthcare providers, which then leads to a sense of isolation and self doubt. So, recognizing and validating these experiences can make a profound difference in emotional well being. And I think that's one of the big things that I have learned working in this space, is the medical trauma that these people face, and the years of not being heard or understood And I think the research states the average can be anywhere from, 10 to 12 years for people to get the correct diagnoses. So when people are dismissed or they're gaslighted about their symptoms, that just further adds to their, this negative experience that they're going through. So if someone you know is unusually flexible or bendy, gets tired easy, has unexplained joint pain. These could be signs of EDS or Hypermobility Spectrum Disorder. So you may notice that you feel overly tired after small tasks, you could be wiped out, or you bruise easily, or you have stretchy skin. So all of these seemingly random signs can connect to EDS, so it's worth keeping an eye out for. So moving on, something that's closely tied with EDS, and often co occurs together, is POTS. So postural orthostatic tachycardia syndrome. This condition affects the autonomic nervous system and it's more common in people with EDS, though it's often misunderstood or misdiagnosed as anxiety or fainting spells. So what's happening in POTS is that when you stand up, your heart rate spikes way above normal, which can cause dizziness, fainting, nausea and a host of other symptoms. So there's a delay in the autonomic nervous system. So normally when you go from sitting to standing, your brain knows that and it can adapt and adjust. But with POTS, there's that delay. Heat can exacerbate this because the blood vessels dilate in heat, so then more blood pools towards the bottom of the feet, which can lead to, like, patchy sort of dots on the bottoms of the limbs, purple or red coloring, things and needles tingling. And then more dizziness too. So if you're someone who finds yourself needing to sit down often, feels light headed or experiences a racing heart after standing, these are classic signs of POTS. It's more than just needing more water or being out of shape. And because of the overlap with conditions like EDS and POTS, it often hides in plain sight, only being discovered after years of unexplained symptoms. POTS is more than just dizziness or feeling faint though. People with POTS often live in a state of constant hypervigilance, so that nervous system is overactive and all the fairy lights are on, full bore on the nervous system. They can start to fear an episode every time they stand up or move too quick. And some people describe a feeling of being trapped in their own body. So a simple daily task like taking a shower or cooking can become extremely exhausting and anxiety provoking. because they don't know if they're going to faint or if they're going to have heart palpitations. Additionally, POTS can affect cognitive function. So, this is what we refer to as brain fog, which is similar with fibromyalgia. So it's difficulty with memory, focus, or even speaking clearly. It can be hard to think. So this cognitive impact is sometimes referred to as mental fatigue, and it can be as debilitating as the physical symptoms. It's strongly tied to the autonomic nervous system, which I think all of these conditions are, which manages automatic body functions. So making lifestyle adjustments and nervous system regulation are key components of managing these conditions, as well as neurodivergence. So some, some of the research states adding salt to your diet is really beneficial, drinking two to three litres of water a day. Some have found wearing compression garments. It's helpful, and there's a range of medications that you can speak to your specialist about too. They're not magic fixes, but it can bring some relief. Now something really closely tied with all the conditions we're discussing today is chronic fatigue. Fatigue is something that I live with, and it is not tiredness. Tiredness is different, fatigue is, as long as it's coming from the core of your body and your battery is on point to it with the same. And it affects every part of you and sometimes even breathing is hard. Fatigue is a big part of EDS, hypermobility, POTS, all the things we're discussing today, as well as many other conditions. It's the kind of tiredness like you're carrying a heavy weight around all the time. People describe it as an exhaustion that doesn't go away with sleep or rest. And it can feel like there's brain fog, which then takes extra energy. With the context of EDS, hypermobility or POTS, it's the type of fatigue that stems from the nervous system, where the body simply can't keep up with the day to day demands. You may have heard the term post exertional malaise. It means that even doing a small activity can lead to extreme fatigue for hours or even days. If you've ever heard of spoon theory That theory states that with these invisible conditions you have a certain number of spoons each day. So you've got to spread your energy out and once you've used all your spoons you need that down time and that rest and recovery. If you're already using tomorrow's spoons, well you're going to be wiped out and that could be for a few days. So it's really about monitoring and balancing those energy levels. Fatigue isn't just feeling tired after a long day or a poor night's sleep. It's like a deep systemic fatigue. People with chronic fatigue might need to plan their activities around the energy and the crashes and get familiar with what drains the energy and what re energises them. Recent research suggests that fatigue may stem from a dysregulated nervous system, so again, it's about that nervous system. The body's energy demands. Many people with chronic fatigue find their symptoms worse than after mental stress, as well as the physical assaults, not just the physical stuff that impacts fatigue. This can affect work, relationships, health, well being, daily routines, even doing some of the simplest things. Energy management, pacing and practicing gentle restorative activities is often recommended to help conserve energy. Now I've mentioned neurodivergence a lot. So neurodivergence refers to variations in brain functioning. So as I said, conditions like A DHD, autism or sensory processing differences or learning differences fall into this category. Interestingly, many people with EDS or POTS also show traits of neurodivergence. We're still learning about this. But there does seem to be a link between connective tissue disorders and the way the brain processes information and responds to the sensory input that it's receiving. So people with neurodivergent traits might experience heightened sensitivity to sound, light, textures, touch, taste. They might also have a higher risk of developing anxiety or depression. So over half of the people living with neurodivergent conditions Also experience hypermobility. So that's huge. More than 50 percent of a population that has been diagnosed with a condition such as ADHD, Autism or Tourette Syndrome have higher levels of hypermobility compared to the general population. So neurodivergent people report greater levels of pain, dysautonomia, again which is that dysfunction of the autonomic nervous system, more hypermobile joints. Therefore, I'm more likely to have conditions such as EDS or POTS. And if you have those conditions too, it can amplify your experience, making it harder to regulate emotions or manage stress, because your nervous system is in this constant state of overactivity. So, if these symptoms are often heightened, it also can heighten your physical symptoms. So sensory processing challenges, such as sensitivity to sounds like may be increased by chronic pain or fatigue, creating an overwhelming sensory experience in your body. Neurodivergent individuals may also struggle with executive function tasks, like planning, organising and initiating tasks, especially when dealing with fluctuating energy levels due to fatigue or pain. So the link between neurodivergence and these conditions may lie in genetic or developmental factors, that affect both the connective tissue and the nervous system functioning. Emotional regulation can be more difficult too, with some experiencing rapid mood shifts or a heightened startle response. Recognising and supporting these neurodivergent traits can help individuals better understand their needs and advocate for themselves in both medical and personal settings. If you're someone who's been extra sensitive to stimulation in your environment, Or it's harder to focus, harder to regulate, it could be part of a neurodivergent profile. And for those with EDS or POTS, the sensitivity can be more pronounced, impacting day to day functioning. Another one that I think is really important to discuss that can co occur is Mast Cell Activation Syndrome. So this is the body's overactive alarm system. So mast cells are a type of white blood cell. that plays a key role in the immune system, particularly in response to allergic reactions and inflammatory responses. Think of mast cells as the body's alarm system. When they detect a potential threat, for example, allergens, toxins, infections, they release chemicals such as histamine to fight off the invader. In people with mast cell activation syndrome, this alarm system goes haywire. Leading to an overactive and often inappropriate release of the chemicals. With mast cell activation syndrome, the body perceives harmless triggers as threats, leading to a flood of histamines and other inflammatory chemicals that cause symptoms all over the body. This could be reactions such as hives, rashes or itching, or respiratory issues like congestion or shortness of breath, or digestive symptoms like bloating, nausea and abdominal pain. Some people even experience neurological symptoms like brain fog, anxiety or headaches, adding to another layer of complexity. Symptoms of Mast Cell Activation Syndrome can vary widely and they often do mimic allergic reactions, so many people can go undiagnosed. If you notice reoccurring skin rashes, blushing, unexplained itching or symptoms that worsen with triggers such as foods, fragrances, temperatures or stress, this could be a possibility. Common triggers include foods high in histamines, so aged cheeses, fermented foods or alcohol, and environmental factors like pollen and mould or even physical stresses. For those that do live with EDS, hypermobility or POTS, it often presents as a mystery illness, as its symptoms can be so varied and affect multiple systems in the body. The unpredictable nature of mast cell activation syndrome can make daily life challenging. People are often unsure what will trigger a reaction, and there's also a significant overlap with the digestive issues. A histamine release in the gut can intensify the bloating, the reflux, the abdominal pain, which then can increase existing gastrointestinal symptoms. Recent research is exploring the connection between mast cell activation syndrome and the nervous system dysregulation, particularly how the overactive sympathetic response in the nervous system might trigger or worsen the mast cell activation syndrome symptoms. It's thought that managing nervous system balance could help regulate not only this, but all the conditions we've discussed. Stress reduction techniques, vagus nerve stimulation, and dietary modifications are often recommended as part of a holistic approach. There's also lifestyle changes like there is with all of these, such as low histamine diets, avoiding known triggers, and again, nervous system regulation. A big part of all of these conditions we've discussed is eating. This is something that I work with quite a lot and see, navigating that digestive maze can be so difficult. For many people with EDS, POTS or Mast Cell Activation Syndrome, digestive issues are common. Sometimes it'll show up as nausea, bloating, reflux, feeling full after eating very little. These symptoms can make it tough to maintain a healthy weight or feel nourished. One of the things I see with all the people that I work with, with these conditions, is they're not sure what they feel like, and then when they do feel like something, that window closes very quickly, and then they don't feel like that anymore. So it can make it really frustrating with knowing what to eat and when. These conditions can also be associated with something called gastroparesis, which means the tummy empties slower than usual. For This can lead to feelings of fullness, bloating and even malnutrition. And for some people, eating can become a chore, or they develop anxiety around food, which then complicates matters even more. The digestive issues are really common among people with EDS, hypermobility or POTS, or mast cell activation syndrome. And they can vary from mild discomfort to serious gastrointestinal complications. Digestion may slow down due to gastroparesis, where the stomach empties slower than normal, causing bloating, nausea, feeling full only after a small amount, and there also can be fecal loading. The delayed gastric emptying can lead to malnutrition and weight loss, adding another complexity to an already challenging condition. With EDS, the connective tissue abnormalities also affect the gastrointestinal tract. Because connective tissue is part of all the organs, so when all the organs are struggling to have enough energy to do all their jobs, it can cause issues. So it can lead to symptoms like reflux, constipation, abdominal pain, feeling sick after eating. And eating can become associated with discomfort, which then results in avoidance of eating or anxiety around eating. These issues are so compounded by the body's inability to regulate its autonomic functions, which is why interventions looking at nervous system balance are so crucial for managing these conditions. There's such an important distinction I want to make, and when we talk about eating issues in people with these conditions, the difference between medically driven eating difficulties and eating disorders or disordered eating. It's not uncommon for people with these conditions to experience symptoms like nausea, bloating, early fullness, or digestive discomfort, which can make eating challenging, but unfortunately it can sometimes be misinterpreted as an eating disorder, when in reality it stems from physiological challenges. Sure, there are some psychological factors that definitely play into this, and sometimes there are eating disorders associated to it. But it often gets confused. With these conditions, eating is often due to digestive system dysregulation, so delayed gastric emptying, also known as gastroparesis, or mast cell reactions. These symptoms aren't the result of intentional food restriction or fear of weight gain, which are common characteristics of traditional eating disorders. Rather, the person may be trying to eat but finds it difficult due to the discomfort, but or the avoidance because of the reactions. So I think it's really important to be able to listen to the person and really find out what the nature of the eating conditions are before making reactions and causing further medical trauma or gaslighting. Because that just will, causes more pain for the client and for the, the person. Because these issues also lead to weight loss or dietary restriction, they can sometimes again be confused with anorexia or another form of disordered eating. This misrecognition often happens when healthcare providers don't take into account the physical limitations and digestive symptoms that accompany these conditions. And often this isn't coming from ill intent, it's coming from lack of knowledge or awareness. For instance, someone with POTS might experience a racing heart, dizziness or nausea from eating, which then discourages from eating regular meals, not due to an aversion to food, but because of the body's response making eating difficult. So misrecognising these symptoms as disordered eating can be harmful and lead to inappropriate treatment. It's essential to address the underlying physical causes. rather than focusing solely on psychological interventions. While eating disorder therapy can be beneficial in certain ways, it doesn't fully address the physiological components or the psychological components driving the symptoms. So addressing nervous system balance, regulating symptoms like nausea and bloating, and implementing a diet that's tailored to their needs is more effective and sustainable. For people with complex body mind conditions, a holistic approach to eating is crucial. And this means looking at how digestive symptoms, nervous system dysregulation and even muscle activation are affecting their relationship with food. By understanding and validating these challenges, we can create supportive and individualised strategies for nourishing the body and the mind without unnecessary guilt or frustrations or trauma. This is essential and it reminds us to look at the entire health story, allowing us to develop targeted interventions that honour the body and the mind and the person's experience. So many times through this I've mentioned the nervous system, so you could be wondering how do all these seemingly different issues connect? The answer lies in the nervous system, particularly the autonomic nervous system. which is responsible for all the automatic processes that we don't consciously control, such as heart rate, digestion, blood pressure. When these systems become dysregulated, which is common with these types of conditions, the body can stay in fight or flight mode, leading to heightened symptoms and a cascade of health effects. For many of my clients, this dysregulated state manifests into what I call a hyperadrenogenic state. Well, basically, the body's running on adrenaline, it's overactive, all the fairy lights are turned on full bore. This not only exhausts the system, but creates a feedback loop where symptoms intensify over time. By working to regulate the nervous system, we can start to reduce these symptoms and support the body's natural balance. The autonomic nervous system has two primary branches, the sympathetic nervous system, flight, freeze responses in the parasympathetic nervous system, which promotes rest, digestion and recovery. People with EDS, POTS or these related conditions often find themselves in a chronic state of the sympathetic overdrive. This hyperadrenogenic state essentially means their bodies are in a constant alert mode, leading to symptoms such as increased heart rate, digestive issues and even heightened sensitivity to pain. Managing the nervous system can provide symptom relief, especially when it comes to POTS, Ehlers Danlos, muscle activation, the eating issues, neurodivergence and a range of other conditions. Techniques like diaphragmatic breathing, which stimulates the vagus nerve, can help activate the parasympathetic system, promoting a sense of calm and aiding digestion. Another tool is progressive muscle relaxation, which can help release the physical tension many people carry from living in a state of hypervigilance and on edge. Over time, these practices can help retrain the body to balance the sympathetic and parasympathetic nervous system responses, then reducing the intensity of symptoms and improving overall quality of life. Some other things, cold exposure. And gentle movement can help gradually shift the body out of that fight or flight mode. There's no quick fix, but daily practices can provide real relief over time. So there you have it, a deeper look into something that's super passionate and area. I work really closely with a deeper look into her conditions like Elliston loss syndrome, hypermobility spectrum disorder, pot. Mass cell activation syndrome, chronic fatigue, neurodivergence and the eating issues intersect and impact everyday life. If you've resonated with any part of today's discussion, know that there's hope and there's ways to start addressing these issues holistically. Remember, understanding and supporting your nervous system is a powerful first step. Bringing all the conditions together in a holistic health story. allows us to see beyond individual symptoms and recognize the interconnectedness of the body and the mind. This perspective acknowledges that for many people, Physical and mental health challenges are intertwined, which requires a blend of approaches. We can't have a one size fits all. It needs to be blended and individualized, and often it will include a multidisciplinary approach. So whether it's, and everyone's needs are different, so there'll be a supportive GP, it could be a physician, or a rheumatologist, or an endocrinologist, a gynecologist. a physiotherapist, a psychologist, it could be a pediatrician. A gastroenterologist, heaps of different areas that people may need support from, but there's also lifestyle adjustments and nervous system regulation. Each of these conditions may seem invisible in a way, but the struggles are real and they deserve attention and compassion. If you're experiencing symptoms that fit into any of these categories, know they're not all in your head. They are real and they're complex body mind conditions. Don't be afraid to seek out help that's understanding and supportive because every health story matters. Knowing how to advocate for yourself is really, really important. It is a crucial skill in this area. So next year, I will be, in the new year, I will be launching a program that I have been researching and I have developed that helps work on these hyperadrenogenic states. So it helps working on that autonomic nervous system awareness and regulation to help improve the symptoms that you're living with. I also have created and developed a health story report that when I'm working with people with these conditions, I can do assessment and reports to help put your story. Into a narrative that is easily understandable that you can then express your needs and gain help in a much more effective way. So thanks for listening today. I'll put links to that in the show notes if you're wanting to express your interest and be on the waiting list to find out when it's available. It's always my goal to provide a space where we can explore these health stories together. Because every story deserves to be seen and heard. If you found this episode helpful, please share it with someone you think might benefit. And as always, keep striving for a life that's too busy living. Because sustainable success is possible, even when you live with these challenges. Thank you for listening to the Sustainable Success Series. Our content is general in nature and does not replace the advice from your health professional. Please subscribe to our show and follow us on social media to stay up. If you would like to be a guest on our podcast and you'd like to raise awareness or share your story, please reach out. We'd love to hear from you. Our email is in the show notes.