ADHD, Autism & Chronic Pain A Neuroplastic Perspective

Hi there and welcome to Bend and Snap Active People Getting Back on Track Tuesday Night Live. Here we are for another lovely Tuesday evening session. These weeks go so quick, so, so quick. Welcome anyone that's here, anyone that's listening, anyone that's watching live. Thank you for being here. I do look back afterwards and reply to comments, so please say hi in the chat, please share anything that comes to mind during tonight's session, ask any questions, I'll do my best. Obviously I don't know everything about everything, but I'm really interested to hear from you all and get your perspectives and your own real-life insights too, because tonight's session is all about— hoping that I've joined the live correctly because I don't know where the title for the session is, but I do know what it is I want to talk about. So I want to talk about neurodiversity, ADHD, autism, and neuroplasticity, neuroplastic pain and symptoms. And do you know, this is something what I've been thinking about speaking about for quite a while, but actually the weird thing is that I wasn't sure whether I know about— I know enough about it. I know that sounds a bit, a bit like— there was something about it that was holding me back from doing a session and speaking about it, and I had a realization this week, and I was like, of course you can talk about neurodiversity, autism, ADHD, and the connection between chronic pain and chronic symptoms. It's important that someone does talk about it because the reason why I've probably not spoken about it until today is because I've literally spent the last few years trying to find more about this, maybe to try and find research, to try and find what the experts who have been working in the mind-body neuroplastic recovery world for like 20-odd years, what they think, have been collecting information or different insights from different people who I believe have got lots of experience, and I've not really been getting any clear answers, so this is why I thought tonight I'm just gonna go for it and share from my own experience, because I cannot get it wrong, I can't share anything that's personal experience that's not going to be accurate, and it actually does align with some of the responses that I've had from quite a lot of the doctors who have replied to my questions and that I've had conversations with and asked them questions. It just, yeah, so I'm going to share with you tonight really what I believe about this kind of thing, because for those that know me know that before I even knew about mind-body symptoms, neuroplastic symptoms, The symptoms where they cannot find anything obviously wrong with your body, there's no, nothing obviously medical that medication can help, they've not been able to help you with the mainstream methods or they've not been useful for you. This is before I knew about this stuff. I held back for a long time with going to the doctors because I got to a point where I just was like, well, they can't help me, so what's the point going? And I just looked after myself the best way that I could by being extremely active, overactive, hyperactive. So I'll share with you, like, how it all came about. So because I now know it's a lifelong issue for me, that I've suffered from neuroplastic symptoms, like, going right back to as long as I can remember as a child, I was the child that had the most difficult growing pains. I was the child that was not sleeping at night, that was awake with aching legs, mainly legs, arms sometimes. I was the child that had unexplained stomachache that would literally, I would end up being taken to hospital, or I'd have extreme asthma attacks to the point where I'd have to go in an ambulance with the blue lights flashing. So obviously I now know that a lot of the symptoms that I've had throughout my entire life, I now look back and I think, yes, they are neuroplastic. Migraines, which began during my— probably around 10, 11 years old, I started to get migraines where you'd get like the visual aura. So anyway, I will get to the point being that for a lot of years they never had no answers. It was just like, kind of look after them, look after it the best you can. But 2023 was the year that, by this point, I'd been in chronic pain and chronic symptoms since 2008, so a lot of years. like around 15 years at that point in time. And basically, I was reviewed at a rheumatology clinic, and obviously they spent a lot of time going through my history, and I shared with the rheumatologist everything. Like, everything. There was Nothing hidden. I said, I showed them the pictures of me running the 100-mile ultramarathons, I showed them the photographs of me doing the mountain ultramarathons, like massive distances of over 50 miles, I showed, I told them obviously all about the stories, and that was the point where He said he believed I have ADHD. So this is where I feel like I say I'm not qualified to talk about ADHD, autism, but I do actually have a diagnosis of ADHD, so if that doesn't qualify me to do that, then I don't know what will. So clearly I was not, um, on a journey to, um, go out and— I never even cared whether I would have had ADHD or not because I personally didn't think that it mattered, and all throughout my life I did get nicknamed ADHD Jo. There were colleagues that used to call me that anyway, they'd be like, oh, they just call me ADHD Jo as a joke, or a lot of people might just have recognized behaviours in me that they might have noticed were not neurotypical. Or different, you could say, like I always felt quite different to the majority of people that I would be around, especially like in the working environment. I could not sit down, you could say, or I'd have to leave the room to do— everyone else would be sat at the desks taking calls, And I would be walking up and down the corridor with the ear things in and doing it that way. But anyway, I'm going off on a little tangent here. But long story short, after all those years, I was diagnosed with fibromyalgia ADHD. And this is what brings me on to the subject for today and the link and the connection with chronic pain and chronic symptoms, because I keep seeing things popping up online about this and how the things are massively connected. What was it I wanted to share? Yeah, so anyway, I told the doctor about all the ultras, he got me— he kind of said he instigated a referral and the diagnosis was made a couple of years ago. Mm-hmm. And I went through the however many appointments and questionnaires and all of these different things that you— like, ideally, if you've got a parent, they have to do questionnaires about childhood and all of these other things. And I'm not the only person in my family That has the same diagnosis. And also in my family, my nephews also have autism, so there's quite a connection in the family. But not everybody has the chronic pain and the chronic symptoms, which I find really interesting because what I'm realising Is that for some people it can go one way to the amplification where they're really heightened and you really do feel things really intensely, and then, um, some of my nephews are the opposite where they don't even notice at all or don't feel something that should be painful, like especially in childhood. like, not having absolutely any, like, nothing hurts that would normally, maybe another person or another child might be upset or cry, and they wouldn't feel that, they would just continue as though nothing hit them, that kind of thing. So, I mean, as a child, I've been like that with a lot of things, I would take massive injuries and not be bothered by them as a child, like for example my brother shot me with a GAT gun, so it's a proper like metal pellet, and he— I know this is silly really, it's a bit of a silly story, but we used to do target shooting and he thought it'd be fun to shoot me in the leg and see how that felt, and again I just And handled that quite well, so, but anyway, I'm going a little bit off track because I want to get back to the point about this connection with the neuroplastic understanding about what's creating the symptoms and the pain and how it might help a person with ADHD or autistic traits Doesn't matter whether there's a formal diagnosis or not. So I'm gonna read to you just a recent message which was a reply from one of the doctors that I've done training with because we have the opportunity to ask anything that we want to ask, and I asked about the— I won't read it all out word for word, but because I've got an interest and I'm struggling to find people that can give answers or research, on the connection about neurodiversity and how it— what the interaction is with neuroplastic symptoms, then I was just basically asking them how it might work and what sort of— what has been their experience with working with people who are— who do have ADHD or autism. And I asked about the research, I asked about their experiences with working with those people, and maybe about the roles of medication and how that might work. But I'll quickly share from my perspective, like, what I've learned and what I've experienced, is that I know that the approach has been beneficial For my physical symptoms and ADHD symptoms too. I know that I am more able to be more, maybe I'm being able to be relaxed more easily, sleep better than ever before, had some reductions. I do have, I didn't fully recover from many of the symptoms that were chronic. I do still have Well, there's only one really big chronic symptom which I'm left with. Really big, I say, I shouldn't call it that. It's not really big. It's like pain, back pain, lower left back pain, and that's the final thing. So I do know, like, for me personally, being Going through this for the last couple of years, it's taken a long time and things feel like they're gradual, and the approaches, like, I've always been really flexible with how I've talked about what I do, never really structured, like, okay about if you don't want to do a certain thing that don't feel right for you, then you don't do it. So I've always, like, adapted a lot of the stuff. The emotional awareness and expression therapy stuff that I've spoke to you about in the last couple of weeks, that's been really interesting because this is the bit where I was really wanting to know more about the connection with neurodiversity, autism, ADHD, or anything along those lines, because this is where That can be the difficult thing, the emotion part of it, um, can be really difficult to tap into, um, because some people, like me, um, it's taken a long time to be able to maybe even tap into and understand and feel. So there's this thing what they call alexithymia where people can't feel emotions, Or they really, really struggle with that, and that's where I think the neurodiversity part plays a part. So, but it doesn't mean that because you've got, um, those neurodiversities, you know, if you've got that neurological brain development difference, it doesn't mean that you have to have pain or symptoms. This is the conclusion that I have come to. Um, it's still possible no matter what, like that's not, um, it doesn't mean that you can't recover the same as a neurotypical person is what I'm trying to say. Um, so all the doctors that I've spoken to, how many of them have described it the same way, they've said the brain is the brain, an autistic brain and an ADHD brain is still a brain, it's still neuroplastic, it's still capable of learning a new way, which is— that makes sense because mine did the same with many of the symptoms, whether it was to do with light, like the light stress, being able to teach my brain that light's not dangerous, being able to gradually expose myself to a little bit more each time, Like taking the glasses, peeking up. With food as well, I know this is possible for me personally with food, so a lot of my, a lot of the, oh, what do you call them? I can't think of the word at the minute. A lot of the symptoms, you could call it, like amplified senses of smell, amplified sound, noises, Sensory issues. I don't like if someone comes to pat me on the shoulder or touch me, I might just wanna, you know, if my poor husband comes into the, if I'm brushing my teeth and he stands in my line of whatever, I might just wanna, you know, these sort of sensitivities you could say. But what I do know is, especially like with these things, Having those challenges, it's still possible to improve and live a better life with this approach, because when I was young, I did not eat a variety of foods. I didn't eat anything, I hardly had anything, I just literally lived on potatoes and cheese and crisps and chocolate and biscuits, so a typical, what you may call a beige diet. And I, as a child, I wouldn't have eaten in— I had very, very interesting eating habits, fussy, picky eating habits. So there were 3 of us, me, my brother, and sister. My brother was similar to me, we only ate certain things, we wouldn't eat it if it had something else on the plate that had been there, or we couldn't have something move, we'd just rather Starve, and I, again, I wouldn't eat at school, I used to come home for my lunchtime, I wouldn't have school dinners, there was no way, I would have rather not had anything. So long story short, I probably got into my 40s before I decided I'm gonna That it's not going to be dangerous, you know, to start having a tiny bit of seasoning on the chips, you know. I wouldn't have eaten anything, I wouldn't have had— I just had such a limited diet for so many years, so I know that it's possible to begin to improve with this stuff because now I have much more of a varied diet. So I'll give you another example, I didn't eat vegetables Until I got to a certain age, and then I decided that I was going to try vegetables. It was a really big deal, and I was, I was in school doing GCSEs, and I was doing the food technology, and I got really into learning about nutrition, and it was at that moment that I thought, I'm going to start to eat vegetables, but I wouldn't have touched them for 16 years. I wouldn't have touched them at all. Um, Anyway, so I know that this stuff helps because I've personally benefited from doing a lot of the pain reprocessing therapy kind of things, and the emotional awareness exercises, whether that's writing letters, unsent letters, whether that's doing a little journaling, whether that's doing the real-life examples, like where you're imagining it, acting it out, those kind of things. So I know it helps because I do have ADHD and, and I'm way better than before, so it's helped me. So I'm going to just read you the answer to the question from one of the doctors, and he said, Many people are talking about the research. Um, I believe there are reported associations between neurodivergence and chronic pain including fibromyalgia and more. And why this is encountering more stresses, expression of distress in bodily language, altered neutral pain processing is not clear to me. So basically saying it's not clear to him why, why it is more common. To me, I think it makes sense that it's to do with the nervous system over— over-interpreting everything that's coming in, you know, including whatever's happening inside the body and outside of the body. Like, to me, um, like, to me, my brain could respond that ketchup is gonna kill me, the smell of ketchup is— It's laughable, but that's another thing that I do need to try and sensitize myself towards, the smell of ketchup. Maybe one day I'll master that. Right, I'm getting carried away here, but regarding pain reprocessing therapy, emotional awareness and expression therapy, I don't think that we have much experience or reliable clinical observations about doing this work with neurodivergent patients. And there is no research data on this topic. So this confirms my issue that I've been having. My sense is that these therapies certainly can work. So I agree with that because I've experienced that these therapies are helping myself and other people that I'm working with that are also neurodivergent too, because I tend to attract and work with a lot of people who are neurodivergent. I feel connected, I feel like I can connect well with them, which is another— oh, I've just moved on to the other message, right, I'm back, I'm back. So yeah, there's no research data on this topic, so the sense is that these therapies certainly can work, but we should adopt the approach to the particular needs and the strengths of the neurodivergent people, which again makes sense because I've adapted everything that I've done to suit myself, and I don't have expertise here, and I welcome the wisdom of those who do. So unfortunately, no one else jumped in on this to share their wisdom. I was hoping that we would get some other responses, but common recommendations such as being clearer, so explaining things, the reasoning, going into maybe more detail, being a bit Slower, maybe confirming the understanding and adapting the pace seems very wise. And then I mentioned a little bit, like, about alexithymia, because alexithymia is very, very commonly elevated in neurodiverse people, and I relate to that myself because I said in last week's session that instead of crying, I would laugh. Like, I just did not feel the appropriate emotions And often that's a— other people would relate to that too. So a little bit about medication. It can be helpful whilst doing some of the therapy work too, like some of the pain reprocessing therapy. Emotional awareness. The medications can be helpful to allow this to be easier to do, um, because it can improve attention, you know, and then, um, because the symptoms can be worsened by anxiety or any emotional conflicts or interpersonal issues, any upsetting thoughts, um, so yeah, the consensus is that Emotional Awareness and Expression Therapy can improve some of this contribution to the symptoms for ADHD, as an example. So yeah, the conclusion being that from my personal experience, ticking many of the symptoms not only for ADHD but for autism too, And having also been recommended to go and have an assessment for autism also, which I might do, considering the family history and a lot of the symptoms. I personally think in the future that it will end up being a like a blended diagnosis because the overlap of the symptoms is just so, so much that, um, I can— I know there's already, um, a lot, a lot going on about the AuDHD, which is autism and ADHD, AuDHD you'll hear it called, um, but that's not a formal diagnosis at present, but I've got a feeling at some point these things are going to become More blended, but I'm just making this stuff up at the minute, so I'm sorry I don't have anything concrete to share tonight, but I can just share from my own experience because I genuinely thought that it was that that was the reason why I can't get to a 100% full chronic pain recovery, I, in the back of my mind, kept looking for research. I'm looking for, for more. I'm looking for things, which is not helpful when you're trying to recover from, from these things, to look for reasons to prove why you're not improving. But I can't find any. So it's promising. It's actually got It actually means that there's a lot of hope there because not one person has said that it's, um, it's an obstacle to getting well. Not one person has said that having autism or ADHD means that, that you're never going to get recovered from your chronic pain and your chronic symptoms. And I've asked quite a few doctors, and even though there isn't any research right now, it doesn't mean in the future there isn't going to be any. And I'm sure to be interested in this moving forwards, and I'm sure to look for opportunities for future research. And the doctors who train us are all really open to this, so who knows what's going to happen. But I just want to share that it's not a reason to be stuck, and if you are able to learn a little bit more about, about this, then you can begin to create new neural pathways in your own brains, no matter what, no matter what brains you've got, they're all capable, they're all amazing, and they're all able to, to learn something new for the, for the better, to help you. So yeah, what else did I want to say for today? I think I'm going to leave it at that because I've got a session now at 8 o'clock, so I will maybe be able to share a little bit more, maybe next year, on how the connection between medication and what we feel like with physical symptoms, because I have never tried any medication for ADHD, But I am on a list and I'm actually gonna go for it. I'm gonna go for it and I'm gonna try it when I make it to the top of that list, that is, which maybe is gonna be in the next few months. November, I think they said November. So might be able to share with you a little bit more because a few other people that I spoke to did say that they, even though the ADHD medication as an example is not going to give you pain relief, it's not going to work for that, but if it, if it helps with the focus and the nervous system being more regulated, then as a side effect of that, people have also experienced elimination of some of their symptoms too. So I was hoping that by the time they offered me medication, I would have been in a position to say, oh, I'm recovered, I don't need that. But as it turns out, I'm not, so chances are that I'm going to end up trying the medication, so I'll share with you how that goes when I know more, and I'll keep you updated. And please share if you too relate to anything that I've shared tonight, I'd love to hear your own stories too. Thank you so much for being here, and I'll see you all next week. Thank you, bye! Bye!