Ohhh yes. Only after discovering my autism at 65 did a lifetime of gastro-intestinal illness finally make sense. And you know what, the discovery didn't make me "all better," of course, but it has definitely improved my situation.
I was recently diagnosed with severe gastric symptoms although they couldn't find an infection or cause. I'm not diagnosed with autism but have been wondering if that could be the main factor affecting my symptoms as my pain and vomiting seem to always get worse when I'm stressed for any reason.
I literally feel your pain. You apparently have been left in the dark longer than myself but still, I always knew there was a connection with autism and my belly aches. Even 10 years ago nobody listened to that idea. Better late than never. To your health! Slainte ∆
I encourage every autistic person to be so careful with burnout and fatigue. Cycling in and out of it over the course of our lives takes an enormous toll on our bodies and minds. I cycled in and out of burnout over the course of my life, had some major "big T" PTSD in the mix and then developed chronic severe migraines. Then developed ME/CFS with severe chronic fatigue then went on to develop neurological symptoms. I was debilitated. My life was at a standstill for years. I am well and free from burnout right now and have been for four years. It was a long, hard climb out of that hole. During that climb I have realised I was autistic, realised my sensory needs, realised I had sleep apnea, realised I wasn't managing my asthma well, and eventually realised I'm hypermobile (HSD/hEDS). All those things have come with the need for appointments and management and making adjustments. I'm so careful with sleep, nutrition and most of all - the pace of my life. I will never work full time again. I also disrupt inertia when it is causing me to not rest, not eat or drink or not listen to my body. It feels unnatural but it is much better for me to put the effort into attuning to my needs. I also have built formal and social support around me. I am working and studying now but I must keep gaps in my week to decompress and rest to sustain that. There is no going back to before, that is the life that made me unwell. My migraines ended up being from neck position and tension. After working with a physiotherapist I went from dozens of severe migraines a month to never having another one again. All Brains Belong is a medical practice that specialises in neurodivergent health and has some great resources about our health experiences which they describe so accurately as "All The Things".
I'm in this process as well, slightly different bc I have POTS, pmdd, IBS, Audhd. How do you manage to make enough income and still not over tax yourself? This is a huge struggle for me.
“Disrupting inertia” - thanks for mentioning this, as it’s a very proactive thing to do. It’s taken me years to learn to listen to my body & look after myself like a good mama would. Respect to you for your heroic efforts towards the good life you’re creating.
Sadly I have to admit: Story of my life! You manage to put into words what I just can‘t explain to people … the massive problem of never knowing if I will be capable of sticking to my plans or struggle with just existing. **sigh**
To answer your question: I am not diagnosed with any chronic illness apart depression and anxiety disorder, but for many years now I suffer from chronic pain. I though this was just „normal“ getting older (I am a 50-year-old woman), but my 10-year-old AuDHD kid suffers from migraines and severe pain too, and we don’t know why. After decades being misunderstood by medical professionals and wrongly diagnosed bi-polar and BPD (quite typical for autistic women my age) I gave up seeking for help. Decades of trying to fit in, mask as hard as I can, breakdown and burnout, start all over again.But now I don’t have the energy anymore for this … Through the process of finding out that my kid is AuDHD (Asperger’s and ADHD diagnosis age 9) I found out that I was also AuDHD (ADHD diagnosis age 49, still on waiting list for Autism assessment). What a surprise! 😂 And suddenly it all made sense … but still nobody outside the neurodivergent community get‘s it, so … what now?
Hi Paul, I really think it would be beneficial for you to look into a possible diagnosis of ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome). Your experience sounds so much like how my ME/CFS started, which I had attributed to autistic burnout for almost 3 years. The hallmark symptom of ME/CFS is post-exertional malaise (PEM), which is a worsening of symptoms (extreme fatigue and brain fog, heaviness, increased sensory sensitivity, headache/migraine, flu-like symptoms, feeling hungover/"poisoned", etc.) after some type of exertion (physical, cognitive, social, sensory). This experience of PEM is often delayed by 12-48 hours after the exertion. So you might feel great during and immediately after the event but wake up the next morning feeling like you were hit by a bus. The condition often tends to be triggered by a viral infection combined with consistently pushing yourself too hard, which sounds exactly like the experience you described in this video. From what I understood, it seemed like you were attributing a lot of your symptoms to autistic burnout, which can have a lot of overlaps with ME/CFS but also some key differences, including recommendations for recovery. One of the most dangerous things about PEM in ME/CFS is that the more often you put yourself into it (and push through it), the more likely it is that your baseline will significantly worsen, sometimes irreversibly, which is why I think it's important for you to identify early if you might have this condition. If you want to do more research into ME/CFS, I would recommend videos on the Bateman Horne Center RUclips channel. I also recommend using the (free!) Visible app to track your symptoms and activity levels. It also has a morning check-in feature that can help you guesstimate how many spoons you might have for that particular day and better understand how to pace yourself. The paid version utilizes a continuous heart rate monitor to give you real-time data on your spoon usage and help you track patterns with quantitative data. I sincerely hope this condition is not what is going on for you, but if so, I hope this can give you a starting place to look into it further.
Speaking as a retired doctor, I think that your expereince was probably post viral fatigue that can last for a few weeks but doesn't hopefully progress to chronic ME/CFS. I'm in my 70's now and have chronic pain in my feet due to arch problems and I can identify with you on how much ongoing pain can affect energy levels. As autistic people I think we need to listen to our bodies more than NTs which can be hard for those with alexithymia.
I am currently pondering the very same topic. I am in autistic burnout, but it feels worse than usual for no apparent reason. Both my mum and my best friend are in the process of getting me/cfs diagnoses. It's shocking how similar my experience is to theirs. Especially my best friend's, who has a slowly progressing condition. Sometimes I forget that we are talking about two different conditions. If it wasn't basically impossible to get an assessment from anyone, who doesn't outright deny the existence of me/cfs, I would probably try to get a professional opinion for myself, but I guess I'll have to wait a few years until more doctors have gained the necessary experience and knowledge. My first autistic burnout was a few months after I had the pig flu, which is also known for triggering me/cfs and I never fully recovered from my past burnouts. For now I have decided to keep an eye on it and try not to fall into confirmation bias.
@@Truerealism747 Yes, several different sets of pain symptoms. Some are result of a couple musculoskeletal defects, some a result of old injury, and some which can be described as, _"Well, it acts a lot like that thing, but not exactly, and it tests as not that thing, so we don't know what the cause is."_
I'm so sorry you had to endure so much pain! 😥 That also sounds like COVID, not a cold. I hope you are continuing to rest as much as possible. I have Multiple Sclerosis (autoimmune) as well as a thyroid disorder, asthma, and scads of allergies. I've certainly noticed a HUGE overlap, at least in my circle of Twitter friends, of neurodivergence, queerness, and chronic illness. In my experience, it's the norm, not the exception. Please take care, and thank you for the video! 🤗
There is a definite connection between autism and crohnic illness especially gastrointestinal. I have crohns and self diagnosed autistic and have been researching this topic. Great video
This video reminds me of what I still consider to be one of the absolute worst years of my life. When I was about 9 years old, my teachers were sure that I was neurodivergent in some way. At the time, ADD/ADHD was the big thing that was coming up on peoples' radar. Now, my teachers were just trying to help me do better in school because they found that when I was genuinely invested in my school work, I would do very well, but most of the time I just wasn't into school. So when I was in 3rd Grade, I was taken to the doctor and they decided to have me try out Ritalin. I started to get headaches, but nothing too serious at that time, but then I had another wrench thrown into things; I changed schools. I was excited about it because I had tested, applied for, and had been accepted to what's called a "Magnet School" here in the U.S. Things took a turn when I was in the 4th Grade, and I started getting headaches. One thing I still remember vividly that actually really scared me was one day when I came home from school and I had such a bad headache. I told my parents that I didn't feel good and I needed to lay down, so I did and I remember it was about 4 P.M. when I laid down and dozed off. When I woke up, I checked the time and I saw that it was between 4:30-5:00. I felt better, so I got up, but I found it really strange that I couldn't hear anything going on in the kitchen or living room. When I left my room and went into the living room, I saw that it was dark out. I had been asleep for over 12 hours. My headaches got worse when I reached 5th Grade. I had to deal with a friend-turned-bully that devastated me emotionally. My parents could clearly tell that I was having problems and they did what they could about the bullying, but when I was asked who exactly was bullying me, I told them that it was most of my classmates. Well, that was a bit much for my parents to process. I tried to tell them my teachers weren't helping either, because two of them in particular would call me out on a regular basis about my troubles with my school work. My dad worked a lot and when I say my mom wasn't good at math, I mean we were getting into things in that class that brought her to tears and she got frustrated and started to tell me to just put my math homework aside and do my English homework. My dad worked nights, though, and when I came home from school, he was usually getting ready for work and we just passed each other by most days. So I was always failing either my math class or my english class, and that opened me up to more ridicule. I complained about headaches constantly, to the point where I was being accused of making it up to get out of school. One of the most frustrating things I had to deal with was how my teachers noticed my decline, accused me of being lazy or whatever they decided to say about me, again always in front of the rest of the class, and when the headache became bad enough that I couldn't focus, I'd ask to go see the nurse. My parents brought headache medicine that did help a little, but I got to a point where I was reaching the full maximum dosage for the day, with no relief. My teachers thought that I was just trying to get out of class, so they'd try to "encourage" me to make it as far into the day as I could, which I did...and by the time I got to my last couple of classes, I was virtually non-functional. I'd ask to go to the nurse and my math teacher, one of the teachers who pressured me to push through as long as I could, accused me of making it up to get out of classes I didn't like and I remember getting upset and going off on her telling her "I'm just doing what you asked, I tried to go through the day but it keeps getting worse!" This belief extended to my parents who noted that I seemed to be fine on the weekends (kind of funny how they didn't put together that the stuff I was dealing with at school was a factor) and I was even losing my appetite and not eating lunch. On one particularly bad day, I had made it through an entire school day, got in my mom's car and threw up. I can't remember what the catalyst was, but I do know that when my parents found out about the bullying, later on in the year, they did start to reconsider my medication and whether it was making things worse. They talked to my doctor and it was decided that I'd be taken off the medication. The headaches eased up enough that I started doing better. There were also some other factors that played into things, like one of my cousins who I was close to was dealing with some pretty bad family problems; her parents were in the process of a very nasty divorce that was made worse by the fact that my uncle had suffered a serious head injury, with brain damage and a personality/behavioral change resulting. Some time that same year, my cousin cut ties with my aunt (who was the parent on "my side" of the family) and lived with her dad. Because of the family bias, as a result, I was no longer allowed to communicate with her. I didn't see or hear from her for three years. To be honest, I've wondered a lot if I maybe have PTSD from that period of time. I don't want to downplay people who actually do verifiably suffer from PTSD, but I honestly still have nightmares about finding myself back in that school with those people. I still get headaches, though not near as frequently, and one of my friends has voiced a concern that the medication I was put on, without actually needing it, may have some some neurological damage to me. No way to really tell, I suppose. My 6th Grade year did actually go a lot better and, while I don't keep in touch with really any of my classmates from that time, I got into enjoyable hobbies and interests that are still with me to this day. To close this wall of text out, I'll say this: if there are any parents reading this comment who have children who seem to just not like school and try to get out of school by "claiming" to not feel well, please take them seriously and try to find out what's wrong. I did not have a good enough grasp on language to properly explain what I was dealing with. All I could say was "My teachers are mean to me.", which was brushed off as "They're just being tough on you and trying to help you pass." No, they got frustrated with me and tried to bully me into behaving how they wanted me to behave. I hate two of those teachers and if I ever happen on their graves, I will piss on them. May they rot in hell.
I, also, had a terrible experience in school with some teacher bullies and others inmy life excusing themselves from taking responsibility and from their own accountability. I also know from my own experience that unforgivenss causes major problems, compounds the experience. Codependency is factor in problems compounding. I was not getting well until I began committing to saying and doing, "I CHOOSE TO FORGIVE." We have got to let the wrongdoers go, or our body our heart, and our spirit will get hurt. Not releasing them is a terrible stress and strain on our body and spirit. Bitterness is really bad for our health in every way. I was not getting better until I could clearly see what they were doing was wrong, and that I decided I was not putting up with their behavior. As an adult I can control to have boundaries to keep the abusers out of my life. At the same time, I commit and confess,"I choose to forgive!" I used to get bullied into believing the negative identity assigned me. That negative assigned identity dropped off immediately as soon as I proclaimed "I choose to forgive!". Immediately, those identity assigners lost their power over me. Saying, "I choose to forgive them" causes them to lose their power over you. You're not carrying them and their exhaustion around with you everywhere. LEAD yourself to choose to be free of them in this way. Lay them to rest so you can finally find and know rest.
Yes, I can so relate to this. For me one of the most detrimental aspects of being ND (AuDHD) is the feeling that everything about life is so feeble, can get thrown out of whack so easily, whether it's due to unpredictable physical conditions, like pain disconfort or feeling cognitively impaired (like you explained in the video) or being triggered emothionally. I'm trying as best as I can with supplements and nutrition etc. to control my ADHD but it's not working reliably.
What you described is probably about 80% of my living experience. Days where I don't even feel good, just ok, are a rare luxury. And I don't think I cam point this to any specific illness, I think my nervous system is just exhausted most of the time and so whatever mild physical problem that might exist just becomes worse.
Thanks Paul! What my mind wants to do and what body can do are two things. I try to under-plan activities and commitments and over-plan rest and breaks to reduce chronic pain. Take care.
Some time ago, I discovered that 'stress avoidance' encompasses all aspects of my life. The type of job I do, the type of friends I have, the (failed) relationships, the sport I practice, the type of hobbies that I have, the type of leisure that I do... everything. There's a chance I developed gout from chronic stress. I take medication for that and have it under control.
Yes. You are describing the experience of having AuDHD and chronic pain. I don’t mean this as a personal attack on you but I have found some of your previous advice to be quite ableist - for example your approach to procrastination being just to get everything done in advance at your pace. I so wish I had the capacity to do things like that and your procrastination video felt like another example of “why can’t you just try harder?” I love you and your work and I’m sorry you’ve had this experience but I also think it’s giving you a window into the experience of another group of ADHD folks. The lack of control and predictability and the stress they bring are real challenges. ❤
If you’re referring to the latest vid on procrastination, I believe he clearly framed the last part as “My Strategies to Avoid Procrastination” rather than offering direct advice. Different Autistic or ADHD traits can lead to different challenges (and sure everyone can experience things differently). So, as long as it’s emphasized that this is just his personal experience, I think it should be taken as such. (Also, I do think that Paul tends to be more vague and calm when discussing his struggles, which might make it harder for those without similar experiences to fully understand.)
Yeah, I'm (currently self diagnosed) AuDHD, but the hEDS is confirmed. It's a confusing mix of symptoms and since I've only been looking at ASD seriously this year, I'm not entirely sure of the overlap, but I can definitely say that my current round of intense immobilizing pain from the hEDS has come RIGHT at the same time as trying to dial way back to get out of burnout. I only got the hEDS diagnosis in 2020, so understanding that is also relatively new. Burnout started just after Christmas, and every time I think I'm getting close to the end, something else hits. I just want some semblance of my life back.
I'm in this group. Multiple organ issues and autoimmune immune diseases, and ASD1. Almost ALL symptoms since birth, many congenital organ defects common in autistic people.... Not to mention how lifelong and constant chronic ASD-related stress and sensitivities contribute to chronic illnesses in their own right.
What you say, makes sense to me. I am autistic and have histamine intolerance. Most of my life, I didn’t know this. Several times it has taken me years to recover. I had to stop working. It has been and still is hard. My diagnose is ME. That’s what they call it when they don’t know what else to call it.
Mines daily not in head anymore but neck shoulders still nausea neurologist says it migraine as I used to have chronic migraine in head.ime hypermobile to
I’m currently going through my neurodiverse journey! Not officially diagnosed yet but very confident I have ASD I always thought I was experiencing severe physical symptoms to depression and chronic stress that I’ve had for many years but now I’m thinking there’s a lot more to it. I have had severe brain fog and continuous headaches for literally YEARS and I have no answers as to why I have them. Everything you’re talking about is very relatable! The constant feeling of not having control over your situation takes a MASSIVE toll. I basically run off nearly empty every day and can’t catch up because I have to work! I really hope we get some concrete answers on how to manage these symptoms 😔
Thank you for explaining everything so well! 🍀 I’ve got a 3-day migraine each month. And often it happens when I’m having downtime. As if your body thinks: “now would be a good time to release all that stress”. Also you might want to look into the migraine phases: the headache phase is followed by a postdrome phase, which can last for a couple of days. During those days I feel super tired and easily get overwhelmed by social situations. It makes it hard to plan stuff, but from my experience people will totally understand when you’ve got to reschedule something.
Multiple chronic illnesses here. It's VERY hard for me to know what I'm going to be working with on any given day, and extra hard because it's hard for me to interpret my body's signals. I don't know if that's all natural or at least partially because I was absolutely taught to push through tough days as a kid, whether tough on my brain or body. But yes, I definitely think you're onto something.
Just got diagnosed with autism today and just wanted to thank you if I didn’t run into one of your videos I’ll probably still be wondering what’s wrong with me today ❤️
I felt just like this for 17 years while undiagnosed. I was mild but once I got to a moderate level (housebound) I was diagnosed with me/cfs. Spoon theory is all well and good, but many of us overestimate how much energy we have and underestimate how much energy menial tasks, anxiety, or fun mental activity takes. TBH you might have mild me/cfs as welll. If it’s gotten worse over your adult life PLEASE work on it because if it’s that, it can and usually does keep getting worse. Mins is fairly predictable now but the amount of things I can do in order to keep it that way is very low- I’d still choose that over the unpredictability which was demoralizing
I came here to recommend considering ME/CFS as well. I recently discovered that I likely have it (still in the process of getting an official diagnosis and ruling out other things), but it was scary how similar Paul's experience sounds to how mine developed about 3.5 years ago. I attributed my symptoms to autistic burnout for years.
@@sfletch5diagnosed CFS for 27 ye as rs or neurosthenia but pain is my worst symptom now with ldn as from birth I've had no energy anyway as a baby I slept 23 hrs a day my upper body pain neurologist says is migraine without headache what's what
I suspect that I am an undiagnosed autistic adult. I have experienced something very similar recently but, in my case, I know that it is the ME/CFS which I have been diagnosed with.
In the same boat as you, undiagnosed but diagnosed with me/cfs but of course that diagnosis is long process of excluding anything else (in my experience) so wondering whether in fact it’s been autistic burnout
Is there? I wish I had the brain power to look into this, maybe one day after all my other problems are sorted... I do have advanced progressive MS. Once I asked on Reddit space for MS if anyone else is also neurodivergent and I did get lots of replies... 60+, but not useful for any statistics of course. Just nice to know that I wasn't alone.
Lost my mum last year to severe ms the link to it is autism heds I have fybromyalgia CFS heds rccx theory so true my mum's was stress which all autistic s have mostly as it started at grandmother's funeral as the proverb goes nervous people get nervous conditions
@@Truerealism747 I am so so sorry for your loss. The years of battling MS progression while working on my career (which I only had because I made that my "special interest" and my only focus), and not knowing that I was autistic, resulted in a complete burnout which I can't recover from. That's how I found out that I'm autistic, by myself too. I would like to think that if I knew earlier, I could have been supported and advised to avoid getting here... But I've also learned that medicine and science in general are too far behind, especially to even know how important it is to support autistic people as they age. My life as I know it is over and I lost everything I worked hard for... at 40 (two years ago). Your mother even built a family, something that I completely put off my mind to be able to study and work. A fullfilled life for us can only be done with support, like counselling to prevent irreversible damage, things that might not exist for the next few generations. We don't get to live "normal" lives, and if we try, it doesn't last long with devastating consequences... Anyway, your mother was a hero in my book 🥹
Wow, that really resonated with me when you talked about how wildly unpredictable your Energy, Mood, Physical Ability and Executive Function Ability are. I also am always aware that while I hope I can meet commitments (which I try to accept sparingly), I don't know in advance how I will feel at the time. I need significant recovery time from anything physically or emotionally draining but also from work and from driving a car. So I have drastically reduced my work hours and try to stay as attuned as possible to my physical and emotional states. Lots to think about here.
Hi Paul, I have CFS/ME, Ehlers-Danloss, ADHD and Autism, the last two only recently diagnosed. Migraines since my teens. My migraines are much better though since I gave up work, so I can't help thinking that stress had an awful lot to do with them. Hearing your account of your recent experiences made me think that although you imagined you had everything under control, perhaps you are still pushing yourself too much. I think for some of us quite driven people, this is so easy to do. If you recognise yourself in this description do please be careful, because chronic fatigue, ME creeps up without you realising it, it did for me. And I realised too late how driven I in fact was, and my life has been changed irrevocably by it. All be best, and look after yourself. Thanks for the videos - the pressure of doing those on such a regular basis would be daunting for most people!
Thank you Paul, a subject i have observed in myself. I have alexithymia and have the emotional delay, my illness seems to follow the same pattern. When I have been working I've been able to complete a weeks work, my weekends would be burn out / illness. If i took a week or fortnight holiday then that time would be spent burnout / illness. I stopped taking holidays many years ago, didn't seem much point. I then burnt out big style every few months. It seems to be a no win situation. I've been on the sick for about 10 months now, can't afford to go anywhere or do anything. Physically and mentally im a wreck, constantly ill. I seem to function best when I'm busy, as soon as I make up my mind to stop or rest my subconscious takes control and pops. No matter what I do to manage my situation i lose. Hope that makes sense. 🧔 👍
I have asthma and problems with chronic ear infection. Asthma is common for autistic people. I get chronic ear infections because of my hypersensitivity to ear wax and I'm constantly trying to remove it from my ears.
Audhd, POTS, pmdd, there's absolutely a connection. We are burnt out by sensory, social, etc. This takes a physical toll and leads to problems regulating physically. Also posture problems are common, link to problems with compression in the neck. I recommend magnesium for your migraines, also helps relax muscles and helps with sleep.
Hi Paul, So glad I found your videos. I have EDS (hyper mobile joints) which comes with food sensitivities, autoimmune disorders, hypothyroid disease. All of which drain the energy. I was diagnosed at age 68 and this year at 71 have learned that I am autistic. It puts my entire life in perspective. I learned decades ago to write every item in my daybook in pencil. It has been years of trial and error with essentially no medical assistance to figure the whole business out myself. You find joy where you can because there is no coffee, no alcohol, no "a whole long list of foods", no running or vigorous activity, no big social or musical events, etc. I am grateful for the internet and the links to others who share their experiences. And thank goodness I love to read.
I try to listen to all your podcasts because you talk so much sense. Mostly, I have drawn the same conclusions as you but it is so comforting to hear you declare it on RUclips. A change in routine can be really problematical. For many years, I was sole carer to my very sick husband. People marvelled that I could do this as it was demanding heavy work. However, the routine provided appropriate strengthening exercises for my neuro-diverse body and was ideal for me. People came every day to do all domestic work. Because I was caring, it was perfectly socially acceptable for me to delegate everything that I find difficult, e.g. washing up. Life became hard when he died, and I didn’t have that perfect structure for me anymore. No one had ever really realised that I was autistic until that time (aged 70 ) when slowly I crashed into severe autistic burnout It could be that spending so much time writing a book without the alternative activities was what caused the problem. Strange things can help to keep the body stable. I need to watch a UK Tv quiz called Richard Osman’s House of Games while I eat my lunch every day to keep my hand I body coordination stable. Thank you for your podcast which hold me steady.
I have EDS and POTS (still in the questioning phase of autism), and for me the frustration isn't only the unpredictability of how many spoons I start my day with - but also how many spoons it takes to do a task from day to day. Because people are constantly telling me that I just can't do things, and need to stop pushing myself, which I'm trying, but feels impossible, because one day I can do a task and it barely affect me, and then on another day I do the exact same task and it wipes me out for a day or more.
Yep. Thanks for this! Fatigue, brain fog, gut issues, arthritis, chronic pain, disturbed sleep. I didn't realise how much pain, as I habitually dissociated pretty much all the time because I didn't know what was causing the pain or what to do about it. Recently did the RPAH elimination diet and I am definitely sensitive to some common things in food. This is what is causing the brain fog, pain etc. I don't know though if this permanent, or whether I can heal and will become less sensitive. I realised belatedly that I have a family history of arthritis & inflammation. After decades of struggling, I'm recognising I have a chronic physical condition (disability) as well as autism.
Hi Paul, Thank you for making all these accessible and interesting videos - you have been a large part of my self discovery journey in the past 15 months when I started to suspect that I'm in fact autistic. I probably would not have fallen down the correct rabbit hole if it weren't for my physical disabilities come to the fore - I got covid for the first time in 2022 and suddenly all the many health issues I have all got worse at the same time plus I gained longcovid on top of them. Suddenly I wasn't able to emotionally regulate at all and my already poor stress tolerance went out the window, initially it was like continual brainfog induced meltdowns - it felt like my brain was screaming at me but put this and other personality changes down to covid. While attempting to cope and find out wth was wrong with me I ended up in the Twitter disability and covid conscious communities and slowly started to find pieces of my own puzzle that were missed by health care people. Turns out I have hEDS which comes with a slew of malfunctions which include migraine, dysautonomia and a lot of general body aches/pains - this in turn led to seeing posts about hEDS being a comorbidity for neurodivergent people and I also noticed that everyone I resonated heavily with online were autistic. Much to my surprise as surely autistic people do not have empathy (as was continually blasted everywhere in media/culture)? Yet all these people were more caring and kind than what I encounter offline - seeds were planted in my mind... Fast forward to late summer 2023 when I had a sudden improvement in my physical longcovid symptoms and yet my brain was still all over the place - the longcovid really took a toll on my memory and cognition but I still felt very otherworldly once they lessened. Suddenly I remembered that I was once hospitilized for severe depression (burnout??) and they gave me a bipolar 2 and dysthymia diagnosis but I have not had single bipolar episode since then (if ever) and it's not like bipolar disorder is something you recover from so the penny started slowly dropping. If I'm not bipolar - then what is making me an alien? 👽 I consequently scored sky high on all available online screeners even when attempting to not choose the autistic answers - i've tried to debunk myself in case of bias and screening myself for other conditions and/or mental health conditions but autism is the only one that fits so far. I don't think I'll be able to get a dx unless i suddenly win a lot of money - I'm a 51-year old woman and where I currently live you can only get a free adult screening if you need external support and otherwise pay in excess of 2.500 euros. I do need a lot of support but my husband has been providing this intuitively for our whole relationship which means the state thinks I'm covered 🤷 Having a chronic illness makes masking near impossible - I don't think I've ever been very good at it anyway but whatever little fakery I was capable of previously has completely dissolved 😅 I am less stressed generally since working from the assumption that I am in fact autistic, I accommodate myself a lot more and stopped beating myself up about the executive dysfunction and frequent miscommunications - I do feel more lonely at the same time as the physical illness contributes to overwhelm which means that being social takes a huge extra toll. Not sure how to balance that and I also don't have any close by neurodivergent friends to connect with - I imagine that would be less exhausting than talking to allistic people. I guess my two cents on autism and chronic illness would be that it makes near impossible to have any spoons left for masking and just getting out of bed is overwhelm territory. Regarding your recent illness and following migraines and persistent headaches - this does sound like it was covid like others mentioned as well. Please continue to take it easy as symptoms can persist for at least 6 weeks even when it doesn't lead to longcovid - avoiding overexertion should hopefully also reduce the risk of persistent illness. Apologies for the wall of text - I haven't even said half of what i wanted but this is already a whole chapter so should stop clogging up your comments! PS. once I mentioned, to the few close friends I do have, that I suspected I was autistic none of them were surprised - I wasn't sure whether to be offended or not lol. I only got one 'everyone is a little bit autistic', she had been misinformed by a mother of an autistic child ;)
I relate to the environment causing burnout. It’s so hard when you grow up in an abusive home because I can never get over my burnout to work enough to get out. I’m 31 now and feel I will never escape and just feel like crap the whole time.
I try to keep it short: yes I am chronically ill next to autism (chronic Depression, Tinnitus, pain...) and it is so hard to tangle through the everyday life with "only" ASD but the other "little" things that go away from time to time more or less it really is a struggle keeping one alive 😮💨
The first was repeated ear infections and sinusitis, and then in my teens, I added unpredictable GI issues, (i blame antibiotics destroying the gut). I decided to stop going to the emergency room because they could never tell me what it was, but in my late teens I started having chronic pain, then diabetes, then crohns (8 surgeries in 18 months) and finally at 49, I had a heart attack. Diagnosed Adhd at 47, diagnosed autism + adhd at 48. I still work a full-time job, but it is sooo challenging, every... day. I thank God every day for keeping me going. I would be homeless and jobless if it were up to my chronic comorbidities.
I have ME/CFS and can completely relate to this, especially the unknown. I wake up with minus spoons most days, and become more depleted as the day unfurls. The unknown and inability to plan/foresee is one of the most difficult parts for me. The complete exhaustion is another, but there is a lot more to it than those two things. I am waiting for assessments, though I am aware of the connections between ASD, ADHD and ME/CFS, hypermobility, hEDS, gastroparesis etc. Maybe have a look into ME/CFS, the things you are describing sound very similar to what I, and others, experience as part of it. Migraines, brain fog, the overwhelming tiredness, disrupted cognitive capacity, fluctuating energy levels, the unpredictable fluctuation of everything you experience, etc. regardless of if it is ME, or not, it sounds like it would be really helpful to get some medical advice. I'm really sorry you're going through that and I hope you can get to the bottom of it and feel better soon! Unfortunately, with ME/CFS, there is no "push through". And if you try, your body will just push back, and it may also lead to becoming more severe. Scientific evidence has highlighted that our bodies don't follow the usual recovery process after activity (activity being physical, emotional, psychological..... And there's a fourth but I always forget it). So our best medicine is rest/sleep....... And a lot of it. While also learning to do things gradually, gently and other a longer period of time. But there are other things that work for people as well. Unfortunately it's an individual case of trial and error. It also means that it can take me a while to write things, or need to edit multiple times to get it right, or struggle to speak/think/form thoughts verbally and mentally. With difficulty constructing things properly, noticing if I have written/said things appropriately etc. Concentration and ability can just go right out of the window, for moments, hours or days at any given time. Social!..... The fourth activity group is social. Please check PEM as well. It's part of ME/CFS, and might help you figure out what's happening for you. PEM stands for Post-Exertional Malaise. "PEM is a key symptom of ME/CFS, and is defined as a worsening of symptoms after physical, mental, or emotional exertion".
This is such a circle moment I started watching your videos when I was about to get an autism assessment (I’m autistic which I had no idea about I didn’t even know what autism was until the eating disorder treatment center where I went suspected it and I found you). At the end of last year I became chronically ill/disabled (I already had one chronic illness but now I became severely ill and now use a rollator and wheelchair). I had forgotten about your channel for a while and all of a sudden this appeared on my recommended. After me not watching you for at least 1.5 years, being diagnosed autistic and becoming chronically ill. Thank you for your videos I just found this to be such a coincidence, the timing. If you would’ve posted this before I became ill I wouldn’t have watched it.
Yep. Totally relate. In my case, EDS or Ehlers-Danlos Syndrome is something that is part of my alphabet soup. Every single day must be carefully parceled out with many "parcels" of time I can bear to push out to another time on the worst days.
I can totally relate but take this one stage further in that there are definite patterns for me. Certain events or plans will trigger brain fog, low mood, digestive issues. Vacations, hanging out with certain people, Christmas holidays to name but a few. Usually in the run up I will start to feel unwell like clockwork and then symptoms will stop when the event has finished. I guess maybe it’s my brain saying I can’t cope with this! Not diagnosed but on my journey and this is the first time I’ve heard someone articulate something similar.
I have ME/CFS and fibromyalgia and have suspected for a long time that there is an huge overlap with autistic burnout.I think the unpredictable nature of the illness is a huge part of the stress for my autism where structure, planning and routine are key elements for keeping me regulated. I find building in flexibility to my routines essential to reduce the stress response.
Me to fybromyalgia is part of cfs ime sure or us it autism burnout and surely related to SPD 27 years CFS 7 fybromyalgia neurologist says my migraine is daily migraine in body do you have heds
I seem to experience chronic conditions serially, with gaps. For a long time I was bothered by cluster headaches (to the extent that in one year my sick days added up to three months). They reduced when I switched to a less stressful job, and mostly disappeared after a long process of figuring out intolerances and allergies. I then had chronic pain for a decade, fixed by burning out some nerves in my spine. Currently I have Long Covid, including fatigue, brain fog, and respiratory issues. I also have mild asthma, mild depression, and PTSD. I do wonder how much of this is just the accumulated effect of 60 years of undiagnosed autism (well, 59 and one year self-diagnosed). As for planning, yeah, it's a pain. When I buy a concert ticket I have to hope that I'll be well enough to attend, and if it's more than ~75 minutes away I have to think about travel and maybe accommodation. Happily I haven't had to bail on any of those yet, but sometimes I've not been able to go to a more local event. If it's not something that I think will sell out I'll leave it to the last minute, and have occasionally missed out that way too.
I've had chronic migraines since I was 7 years old, and cluster headaches since 12. Fortunately, the latter only happen during seasonal changes. The migraines, though, are always worse when I'm in burnout! Even before reaching that threshold, they increase in both intensity and duration. No matter what I do, though, it's one per week. Additionally, the GI issues. They diagnosed me with IBS by ruling everything else out. I don't know if that really explains all of it, though, because the total abdominal cramping I get during burnout can send me to the ER. The last one they thought was gallstones, and the one before that they thought it was kidney stones. That's the level of pain it causes. And my pain tolerance level is very high! I think the chronic stress that comes with being autistic and trying to be a functional adult leads to all of these chronic health issues. 😢❤
I relate to this 100%. But most of my friends do not understand this aspect. When they ask me "can you come over and help us with this event on x date?" , I am not able to say yes with confidence. Coz I am not sure I am gonna be in the right energy and health that day. And I was getting migraines everyday when I was pushing thru pain and discomfort in my last job. After I quit the job, migraines were back to normal ( which is once in a while or if too much exposure to Sun).
Asthma as a little kid and working up to more inflamatory based issues and pain currently. Only in the last couple years ticking the AuDHA boxes. In the last 25 or so years with additional major life stress points my previous masking became too high a price to pay ie not enough spoons to maintain it. Being self employed to be able to adjust for the health issues the brain fog and random no energy/or pain days it's been a beast.
Sounds very familiar, I've always believed/known in my case at least that I have both somehow, never got to pin point exactly what that is and I believe it's more then one thing, but that's just me. Thanks for the video, that makes me feel less alone in this.🙏😘
Thank you for this, Paul. Migraine is a big and difficult part of my life, and I also experience PMDD. Your description of how you're cautious making plans is a lot like my way of living. I always have to make an "escape plan" along with the actual plan whether that's paying extra for a flexible reservation if I must travel or keeping my groceries stocked in case I'm too unwell to leave home. I'm a cis female in my mid-forties, and the intense fluctuations in hormones are making things much more unpredictable for me these days. I'm just beginning to experience a shift towards normal after from about 3 weeks of near daily migraine. Migraine seemed to heighten the sensory sensitivity, which it really interesting I think. Hope you continue to feel better.
I have had chronic fatigue for thirty years and it sounds like you have it too. My CFS was caused by a viral infection and I was very lucky that I had a doctor who took it seriously back then but knowing what you have and learning how to cope are not the same. Took me a few years.. The mental trick is ‘knowing’ you can do the thing you want if you are willing to pay the price the next day or two. If yes, go ahead, if no, don’t do it. That takes a lot of the contingency planning stress away. Just do not plan two important things on consecutive days. Adrenaline- that is getting really excited about something- does counteract fatigue as long as you accept the next-day-off outcome. I guess what I am saying is my experience is that if you wake up on a zero spoon day, you can borrow a spoon or two from the next day once you learn the trick to jazzing your adrenaline (without drugs!) but you have to pay it back with interest.
As someone with ASD/ADHD and chronic pain, I will say there is some predictability. It just takes YEARS to develop an awareness of your limits, etc. Even with serious flare ups, I know I've been pushing myself too much or ignoring warning signs.
Oh the migraines! I developed them around 8 years old and now I'm 35. Beta blocker has helped some but for the bad ones, not even multiple Sumatriptans will stop the throbbing 🤯 I resonated with your migraine and headache descriptions so much!
thank you so much for your insight, absolutely progressive. Brother, your mastery of self needs more now. You have become an artist, and (as absolutely abstract as that sounds) rejoice, the input of one true artist would finish! your egress . Thank you so much for your insight.
This sounds a bit like a cycle that I find myself in fairly frequently. I have chronic fatique/fibromyalgia (among other things) as well as ASD2. When my pain flairs it puts me on the edge of, or into, sensory overload. This ramps up the pain. Either of these alone will cause nasty brain fog that doesn't let me easily figure out how to break out of the cycle, and the resulting frustration/hopelessness results in more pain, more sensory overload, and more brain fog. Then medical people tell me I need to be more committed to getting out and socializing if I'm to "get over" my anxiety issues. I can't speak to the spoons thing because I think I have a solid case of phantom spoon syndrome. All that to say -- you're not wrong.
I relate to your experiences and recently discovering my own neurodiversity and chronic pain conditions. Hope you are having a good day. As a side note, I know there is alot of controversy but I highly recommend medical cannabis its really changed my life and made the symptoms become manageable (it’s helpful for all my conditions tbh)
it was actually a lifelong series of "unexplainable" chronic illnesses that lead me on the search for answers and to find out autism was the common link between them (if we ignore the dsm-5 criteria). Have been dealing with gastro-intestinal, sleep issues for pretty much since i was a toddler, and migraines, chronic fatigue and fibromyalgia since highschool that worsened when entered university and than the job field. i had to heavily modify my lifestyle to a pace that allowed me to still be functional and provide for myself while taking into consideration my needs. Just after doing all that and despite improvements, it's when the possibility of autism came while on a therapy session. funny how my own body was screaming the cause but i was completely unaware of the many signs it was trying to point out.
@@Truerealism747 it's manageable most times, though it tends to flare up during summer for me and that's when it becomes considerably harder to handle. i have no diagnosis of heds, but things such as fatigue, digestion, jaw lack of vitamin absobtion and such are quite common occurence... Nowadays don't think i have depression or others, but definitely burnt out most times. Though with more knowledge comes more understanding of what works and what doesn't for me, so i'm staying possitive that i'm building a kind future :) wishing you the best too!
There is an overlap for me, for sure. Chronic pain due to hypermobile joints (HSD) so that’s always an energy drain, with sometimes being more unexpected BIG energy drain. Combine that with the ASD and a sleeping disorder (basically insomnia at this point) and all of those are potential wild cards for the amount of spoons I’ll have during the day and how quickly I’m using them up. At this point I’m struggling to get through the days, basically unable to work, due to the combined energy drain, the combined stress, the combined unpredictable factors.. of those 3 disorders. I think you described it pretty good. I still plan things, but I also need to take precautions and I do have some things that are just not an option for me. Either because of lack of spoons, or any of the symptoms and limitations because of the HSD and ASD. Yes, at this point I feel that the word ‘disability’ and ‘disabled person’ do describe me, my ASD and my HSD combined.
On the barbeque situation, intense smoke and smoked/roasted food can also mess with your body and immune system, contributing to your discomfort the next morning.
I was undiagnosed until this year at 46 and I remember always feeling non-specific ‘ill’ when I was very young and through my school years. I wonder if this was a manifestation of my asd? School was so incredibly difficult but my family were (awful) unsupportive in every way so I couldn’t even recognise that my problems were mental health issues/ sensory etc. I just learned to mask really early. Now I have a whole host of health issues with diagnoses of MS, migraines etc and am awaiting investigations for gastro and rheumatic clinics. I haven’t been able to work for several years now. I worked full time for 25 years out of absolute necessity and it has really taken a toll on my body. I want to get stronger and healthier in all obvious ways but there’s never enough spoons!!!! If it wasn’t for people like you Paul, I would still be undiagnosed and hating myself for not being able to function like normal people!
I have EDS(Ehlers Danlos syndrome) Not the super cool contortionist kind or rubber skin kind. I am double jointed. But its more like I don't see my joints go to far sometimes resulting in really bad joint pain. Now in my middle years, my back is where I feel it most. So just standing up has been challenging for the last 10 days. It makes having a burnout period much worse. Not being able to get around kicks your mood down too. The problem is I have had to push hard into the pain zone just to be employed for so many years. Now I just can not do those jobs. Its really making it hard to make any money as someone with ASD1 and EDS. Hope we all get the help we need. I'm struggle to just have insurance. 🤖🤖🤖
Since I was a baby, I've had daily nausea, almost daily vomiting and daily intense stomach pains (all usually fading 2-4 hours after being awake). When I'm stressed to get something done/accomplished, ESPECIALLY when I had to go to work (or school) on a set schedule and had to be there, the same exact days and times, day in and out (didn't matter if it was morning/afternoon/night shift), I would have to call out of work/school frequently (1-5 days off every week). But now that I have a job where I literally, get to pick what job I do and when I do it (there are guidelines BUT for the most part, it's all up to me) I don't wake up/get sick every morning. It's just every couple of days or so now. Also, I have what I call my, "heavy days." These are days when I wake up and my body literally feels SO heavy, (like it is made of lead) getting up, is a draining workout, even if just to let's my dogs outside and to go to the bathroom myself, it's draining in itself but it's a rare occasion nowadays.
Your speaking my life. If i go to an event or visit friends i will inevitability not be well the next day. I do have a chronic issue but it's like clockwork people + masking= crash every time, not to mention that background noise or stress that is going on. I just feel like i have missed out so much on life because i get invited to things and never know if I'm going to be well enough....i just missed my friends wedding last week because i just couldn't get it together enough to go. Mental is the worst. Where the chronic illness doesn't get me the autism will😢
like dr berg says, chemical, emotional and physical, the three types of stressors, each make things worse if continuing to be exposed beyond recovery capacity. things such as autoimmune conditions, and the more "fun" symptoms/traits of autism. (they're not all really fun. but it's a fun challenge to keep a playful chipper upbeat attitude about the horrible things.) Chemical, Emotional, Physical. Stress & trauma.
I have to add to the many comments on ME/CFS and Long COVID. Three autistic people in my nuclear family, two with ME/CFS. Ours started with a flu. Then headaches and brainfog. Always waking with no spoons. Sounds like your recent journey, though I hope it isn't 🙏
Rccx gene theory my father CFS and his sister's fybromyalgia sleep apnea they have ADHD autism from my mum's side heds fybromyalgia cfs years or its burnout chronic migraine
I can relate, I don't know why everything costs so much, and takes so much effort, I don't know why I get the headaches. I have different words, examples, metaphors, and levels for pain. Recently, after shots, I hurt everywhere for days. That is not my usual experience. Usually, after shots I just feel relief.
I've had chronic migraines my whole life until my neurologist told me to take 400mg of magnesium glycinate and 400mg of vitamin B2 daily before bed. Since then the only times I have had a migraine was when I didn't take the supplements. I was recently diagnosed with AuDHD at 47. Also watch your caffeine and sugar intake as that also causes me issues. I also have bad arthritis since a young age. Hope this helps and thanks for the video!
Not knowing how much energy I'll have tomorrow is so common issue. Even less next week, or next month. Except when it's certain I won't have any. I just recently marked one big REST on my calendar - I knew I'd be exhausted that day. And I was. I also avoid making much appointments for certain times of the year. April dust? Time to stay home and minimise all commitments. But when I would most probably have energy? No clue whatsoever. For years I was wondering for the reason. I had got asthma diagnosis, and meds to treat it - but I felt it didn't explain everything .Also my depression episodes seemed to be a result of *something* - exhaustion, but what made me burn out? Enter ASD and ADHD, finally. Everything started to fall in place, especially when I realised I seem to also match for HSD (looser criterias than for hEDS, but not necessarily any difference in how they affect life). Now some of the common comorbidities seem to be tied genetically. But there's a lot that's simply just a result of how life as an ASD person is. So much stress, sensory overload, burning out... Human beings don't do well when constantly stressed. Working part time would probably help many, but it isn't enough. We need courage to arrange our lives so that it's less taxing..
I think there is an overlap. Aside from ASD/ADHD I have MTHFR gene mutation and slow COMT which have some significant health impacts. I also just found out that my hormones are all out of whack and I have no idea why as I live a very clean, healthy and active lifestyle being a qualified health coach and nutritionist. So in terms of lifestyle, I know what to do and why for optimal health. And yet I still have issues to address. Go figure lol.
I had an issue with my migraine medication causing an increase in migraine frequency & intensity. After a week of migraines (possibly cluster headaches), I stopped taking it. Now they’re back to their regular schedule & intensity. I also experience the migraine hangover/brainfog afterwards. I rarely make plans partially due to not knowing how I’ll feel physically on any given occasion.
Thanks Paul. Hope you are well. 2022 is the year when things got me. Had a triggering encounter. Broke a bone. Afib. Rotator cuff injury. Covid infection. All the while trying to find out if I’m autistic. Covid reactivated my EBV cfs. And now being treated for rheumatoid arthritis 💙🙏🏻🙏🏻🙏🏻🙏🏻💞 And beginning of 2023 dx w ASD
For some reason my pattern recognition high focus, is on energy expenditures and activity consequences. After 1,5 year of fibromyalgia, and a lifetime of neurodivergence I almost always knows what to expect and how much I can push into my calender, and how much recovery time any activity cost either at a high energy day or low energy day (not the same). So I make basic plans and if for some reason I have a little extra I tell people maybe on plans (but if they want for sure, it should be another time) - I cannot though completely answer for unpredictable external events, such as car needing to go to mechanic, or other more emergent issues. Even doctor appointments I push days ahead, if I know I want have spoons, unless I feel really bad.
That sounds like there might be a hint of depression or ADHD in the picture. I suspect that latter may be involved in my chronic inability to plan a future activity that requires a lot of concentration. Once I get over that hump, or sneak in around it somehow, I have trouble stopping even to make a bathroom or food run. {o.o}
I have read from functional medicine doctors that there might be a lot of sensitivities in autistic people which can lead to neuroinflamation. For example that gluten and salicylate sensitivity is quite common. About 2 years ago i got a who dna scanned and since analyzed it with several services. It has show strong predisposition to autism, predisposition to ADHD and A LOTS AND LOTS of food sensitivities :o !!! Avoiding a lot of offending things i feel somewhat better nowadays, although i feel i havent uncovered absolutelly everything yet. I have far less anxiety than before and falling asleep more reliably. It hasnt "cured" my autism but i do function better :) . I have lost 30 kilos but my rheumatoid arthritis has flared ... We will see how things will go.
I have four co-occurring autoimmune conditions. One thing that my family doesn't yet understand is that I need more time after socialising or performing tasks than others.
I kept trying to build up to work and burning out when I had a job within 6 months. This is part due to pressure I put on myself because I feel like I have to be worth my wages. Though also that the social rules become stricter if you go from volunteer to employee. After every recovery I still felt like I was able to do less than I could do before the big burnout. Eventually I found out I am deficient in vitamin B12 and will need to inject it for the rest of my life. I am still not doing very well so I am looking into other things too. Besides the unreliability of my own capability and all the stress that brings. I also find that not being able to stick to my usual routines, or even a routine, is something that causes me considerable stress.
Yup. I’ve been diagnosed with Coeliac disease for over 3 years now. But, I’m also having a lot of other draining issues, like dealing with stress related digestive issues, and for years now I’ve been dealing with excessive sweating for all kinds of reasons some I know of some I don’t. Brain fog is a constant which makes it hard to be functional at all! Basically I don’t ever wake up with any spoons. I’ve been depressed for several years now. Am I the only one who struggles with being discouraged super easily? Like something simple like doing the laundry becomes dreadful! 😞
I have phases of things wearing me down. I was able to mask well enough to trick my parents and employers into thinking I'm capable enough to hold my full time job before I ever thought of myself as possibly autistic. I have a big history with gastro esophageal problems, intense headaches/migraines, the inertia of not wanting to stop my tasks for anything, severe anxiety with regards to losing the ability to care for myself or be the adult my parents think I am... the stress of my family history full of mental health issues and being coerced into joining for overcrowded events, and my job expectations needing me to fill essentially 3 different types of roles... I'm spread thinner than tissue paper and I don't feel like I can do what I need to because I don't feel secure in asking for help. I make too little money to get an easier job and I don't trust those around me to not make my stress worse.
I have had migraines for 12 days a month from the age of 27 until 50. It came in clusters of 3 days off which I would lay in bed, puking and sleeping. Always triggered by too much social interaction which gave me a lot of stress. When I had to get out and f.i. drive, it would be dangerous because my eyes were blurry. Without too much social interaction I'm fine. I am diagnosed with chronic migraine but also did 3 autism tests. Apparently, I'm 100% autistic. Though my family thinks I have adhd. I agree that I probably have both.
You mentioned this meet up with old friends and that it was somewhat nice, but not really satisfying because there were too many people, it´s been noisy etc etc. You went back to what you thought is what you really want to do, but maybe it´s not? Maybe you lack of emotional connection and now after this short experience of togetherness you´re grieving? What I found out about myself and since then put as priority is that I basically inherited a profound lack of social contacts. It would take too long to explain the bad influence of my family system, but the result is severe general anxiety plus lack of social skills, always ending up with avoidant and/or toxic partners etc. I basically emotionally starved myself almost to death bc I couldn´t see how even my best friend/flat mate increased my isolation, constantly a back and forth, come close, no wait, leave me alone etc. It´s a severe imbalance in my brain and body chemistry which causes my chronic fatigue, fibromyalgia, depression, and it won´t vanish until I found my ways to form stabile emotional bonds.
I think you're on to something. I have a rheumatic illness and managing the pain makes me way more capable of executive function. Coupled with sensory issues (sounds/lights) I burnout so fast, if both are present.
I have migraines too and I'm convinced it's connected with my autism. When I was in college I had migraines at least 2 or 3 days a week (!). After two years of putting college first and working so hard around my migraines: I burned out. It was quite bad, my mind and body were so out of sync, I couldn't even put on my coat and head out :( So I took a year off. And my migraines almost completely vanished! Maybe had 3 migraines in a year!!! Since then I really try to take notice of fatigue and/or sensory overload. The sensory issues are hard, because I still don't really know how sensitive I am to that. I think it's more uncousious for me. When I go to work to the office there's ofcourse lights/sounds/smells/etc. But I don't feel I'm really bothered by it in the moment. More that it secretly takes energy. Because when I already am tired, they do bother me a lot. I'm still learning so much and trying to figure myself out.
I think that my anxiety is a main trigger for returning physical problems, ranging from exhaustion to contracting each and every virus to physical pain. Because I am used to that, I sometimes push myself to work regardless, which makes it worse of course. I find it especially hard to admit to myself that I can't do as much as I feel I should, or as other people can. I really want to be accepted, to be good enough.
Audhd with fibromyalgia over here 😢 migraines every 3 days... Have tried everything, meds, all kinds of phisioteraphy, magnets, acupunture, electricity... Just knowing myself and try to rest every no and them have helped me. The Hard thing is working as a artist... I JUST dont know when or how to stop
I'm diagnosed adhd but highly suspect austim (daughter is diagnosed) this really hit home. After starting adhd meds a few years ago, I thought it was a lifesaver, until I got really sick after I gave myself severe burnout. I became incredibly cold intolerant, dizzy, fatigued, brain fog, neurological symptoms, and those miracle meds stopped working entirely. I felt like a medical mystery as no one could tell me what was wrong until recently. I still don't have a name for it, but if seems that my blood vessels are always constricted, probably due to chronic stress from like... Daily living. I've had migraines since I was 7, cervicogenic headaches for the last decade or more. In my mind it's all due to burnout. The medication in currently taking helped all conditions, so it's probably been getting worse over the course of my life. Burnout is no joke.
5 mental illness Food allergies (intolerances) Hayfever and other sinus problems to strong smells Excma (sensitive skin) Mild learning disability That's just off the top of my head. Haven't been told that I have austim or ADHD (anything like that) but think I need to be tested.
I relate so fucking much! And I do live in between two gates that squeeze me from both sides: randomness and unpredictability, and me knowing that if I stop pushing through, I'll have no work, support or money quite soon. So I have to push. But I know how bad it is. That's why I dissociate to the degree "remembered that painkillers exist after being in severe pain for hours", and this is faaaaar from good sign hehe. Almost-finished-official-diagnostic process for autism, and some very physical conditions are with me from day one if this strange life. Others joined them later😅
![[#2024MAMA] G-DRAGON - 무제(Untitled, 2014)+POWER+HOME SWEET HOME+뱅뱅뱅+FANTASTIC BABY | Mnet 241123 방송](http://i.ytimg.com/vi/Ox29z5Nf1Uk/mqdefault.jpg)
Ohhh yes. Only after discovering my autism at 65 did a lifetime of gastro-intestinal illness finally make sense. And you know what, the discovery didn't make me "all better," of course, but it has definitely improved my situation.
I was recently diagnosed with severe gastric symptoms although they couldn't find an infection or cause. I'm not diagnosed with autism but have been wondering if that could be the main factor affecting my symptoms as my pain and vomiting seem to always get worse when I'm stressed for any reason.
Yup. 33 years old and only recently did I really start to understand that I have gut health issues and have to be very mindful of my diet.
My GI issues are a nightmare. I’m 71
I literally feel your pain.
You apparently have been left in the dark longer than myself but still, I always knew there was a connection with autism and my belly aches. Even 10 years ago nobody listened to that idea.
Better late than never.
To your health!
Slainte ∆
Today I learned it's not normal to feel like this almost every day
🌻
I encourage every autistic person to be so careful with burnout and fatigue. Cycling in and out of it over the course of our lives takes an enormous toll on our bodies and minds.
I cycled in and out of burnout over the course of my life, had some major "big T" PTSD in the mix and then developed chronic severe migraines. Then developed ME/CFS with severe chronic fatigue then went on to develop neurological symptoms. I was debilitated. My life was at a standstill for years.
I am well and free from burnout right now and have been for four years. It was a long, hard climb out of that hole. During that climb I have realised I was autistic, realised my sensory needs, realised I had sleep apnea, realised I wasn't managing my asthma well, and eventually realised I'm hypermobile (HSD/hEDS). All those things have come with the need for appointments and management and making adjustments. I'm so careful with sleep, nutrition and most of all - the pace of my life. I will never work full time again. I also disrupt inertia when it is causing me to not rest, not eat or drink or not listen to my body. It feels unnatural but it is much better for me to put the effort into attuning to my needs. I also have built formal and social support around me.
I am working and studying now but I must keep gaps in my week to decompress and rest to sustain that. There is no going back to before, that is the life that made me unwell.
My migraines ended up being from neck position and tension. After working with a physiotherapist I went from dozens of severe migraines a month to never having another one again.
All Brains Belong is a medical practice that specialises in neurodivergent health and has some great resources about our health experiences which they describe so accurately as "All The Things".
Thank you for sharing your experiences. It's empowering to know there are others dealing with this and doing it successfully.
I'm in this process as well, slightly different bc I have POTS, pmdd, IBS, Audhd. How do you manage to make enough income and still not over tax yourself? This is a huge struggle for me.
🌻
“Disrupting inertia” - thanks for mentioning this, as it’s a very proactive thing to do. It’s taken me years to learn to listen to my body & look after myself like a good mama would. Respect to you for your heroic efforts towards the good life you’re creating.
This is me decides CFS fybromy heds how is your pain now that's great it's all the autism
Sadly I have to admit: Story of my life!
You manage to put into words what I just can‘t explain to people … the massive problem of never knowing if I will be capable of sticking to my plans or struggle with just existing. **sigh**
To answer your question:
I am not diagnosed with any chronic illness apart depression and anxiety disorder, but for many years now I suffer from chronic pain. I though this was just „normal“ getting older (I am a 50-year-old woman), but my 10-year-old AuDHD kid suffers from migraines and severe pain too, and we don’t know why.
After decades being misunderstood by medical professionals and wrongly diagnosed bi-polar and BPD (quite typical for autistic women my age) I gave up seeking for help. Decades of trying to fit in, mask as hard as I can, breakdown and burnout, start all over again.But now I don’t have the energy anymore for this …
Through the process of finding out that my kid is AuDHD (Asperger’s and ADHD diagnosis age 9) I found out that I was also AuDHD (ADHD diagnosis age 49, still on waiting list for Autism assessment). What a surprise! 😂
And suddenly it all made sense … but still nobody outside the neurodivergent community get‘s it, so … what now?
Hi Paul, I really think it would be beneficial for you to look into a possible diagnosis of ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome). Your experience sounds so much like how my ME/CFS started, which I had attributed to autistic burnout for almost 3 years.
The hallmark symptom of ME/CFS is post-exertional malaise (PEM), which is a worsening of symptoms (extreme fatigue and brain fog, heaviness, increased sensory sensitivity, headache/migraine, flu-like symptoms, feeling hungover/"poisoned", etc.) after some type of exertion (physical, cognitive, social, sensory). This experience of PEM is often delayed by 12-48 hours after the exertion. So you might feel great during and immediately after the event but wake up the next morning feeling like you were hit by a bus.
The condition often tends to be triggered by a viral infection combined with consistently pushing yourself too hard, which sounds exactly like the experience you described in this video. From what I understood, it seemed like you were attributing a lot of your symptoms to autistic burnout, which can have a lot of overlaps with ME/CFS but also some key differences, including recommendations for recovery.
One of the most dangerous things about PEM in ME/CFS is that the more often you put yourself into it (and push through it), the more likely it is that your baseline will significantly worsen, sometimes irreversibly, which is why I think it's important for you to identify early if you might have this condition.
If you want to do more research into ME/CFS, I would recommend videos on the Bateman Horne Center RUclips channel. I also recommend using the (free!) Visible app to track your symptoms and activity levels. It also has a morning check-in feature that can help you guesstimate how many spoons you might have for that particular day and better understand how to pace yourself. The paid version utilizes a continuous heart rate monitor to give you real-time data on your spoon usage and help you track patterns with quantitative data.
I sincerely hope this condition is not what is going on for you, but if so, I hope this can give you a starting place to look into it further.
Speaking as a retired doctor, I think that your expereince was probably post viral fatigue that can last for a few weeks but doesn't hopefully progress to chronic ME/CFS. I'm in my 70's now and have chronic pain in my feet due to arch problems and I can identify with you on how much ongoing pain can affect energy levels. As autistic people I think we need to listen to our bodies more than NTs which can be hard for those with alexithymia.
I am currently pondering the very same topic. I am in autistic burnout, but it feels worse than usual for no apparent reason. Both my mum and my best friend are in the process of getting me/cfs diagnoses. It's shocking how similar my experience is to theirs. Especially my best friend's, who has a slowly progressing condition. Sometimes I forget that we are talking about two different conditions. If it wasn't basically impossible to get an assessment from anyone, who doesn't outright deny the existence of me/cfs, I would probably try to get a professional opinion for myself, but I guess I'll have to wait a few years until more doctors have gained the necessary experience and knowledge. My first autistic burnout was a few months after I had the pig flu, which is also known for triggering me/cfs and I never fully recovered from my past burnouts. For now I have decided to keep an eye on it and try not to fall into confirmation bias.
@@melinnambapem can be in autism to so a CDs Chanel on here cfs fybrogia decades knowing what is what😊
Can only speak for me, can't say if there is a general overlap, but, yes, I have both, including more than one chronic illness diagnosed.
Do you have pain symptoms
@@Truerealism747 Yes, several different sets of pain symptoms. Some are result of a couple musculoskeletal defects, some a result of old injury, and some which can be described as, _"Well, it acts a lot like that thing, but not exactly, and it tests as not that thing, so we don't know what the cause is."_
I'm so sorry you had to endure so much pain! 😥 That also sounds like COVID, not a cold. I hope you are continuing to rest as much as possible.
I have Multiple Sclerosis (autoimmune) as well as a thyroid disorder, asthma, and scads of allergies. I've certainly noticed a HUGE overlap, at least in my circle of Twitter friends, of neurodivergence, queerness, and chronic illness. In my experience, it's the norm, not the exception.
Please take care, and thank you for the video! 🤗
I lost my mum to severe ms heds I have fybromyalgia chronic migraine heds autism ADHD ime sure alot if it is stress that comes with autism😊
There is a definite connection between autism and crohnic illness especially gastrointestinal.
I have crohns and self diagnosed autistic and have been researching this topic.
Great video
This video reminds me of what I still consider to be one of the absolute worst years of my life. When I was about 9 years old, my teachers were sure that I was neurodivergent in some way. At the time, ADD/ADHD was the big thing that was coming up on peoples' radar. Now, my teachers were just trying to help me do better in school because they found that when I was genuinely invested in my school work, I would do very well, but most of the time I just wasn't into school. So when I was in 3rd Grade, I was taken to the doctor and they decided to have me try out Ritalin. I started to get headaches, but nothing too serious at that time, but then I had another wrench thrown into things; I changed schools. I was excited about it because I had tested, applied for, and had been accepted to what's called a "Magnet School" here in the U.S.
Things took a turn when I was in the 4th Grade, and I started getting headaches. One thing I still remember vividly that actually really scared me was one day when I came home from school and I had such a bad headache. I told my parents that I didn't feel good and I needed to lay down, so I did and I remember it was about 4 P.M. when I laid down and dozed off. When I woke up, I checked the time and I saw that it was between 4:30-5:00. I felt better, so I got up, but I found it really strange that I couldn't hear anything going on in the kitchen or living room. When I left my room and went into the living room, I saw that it was dark out. I had been asleep for over 12 hours.
My headaches got worse when I reached 5th Grade. I had to deal with a friend-turned-bully that devastated me emotionally. My parents could clearly tell that I was having problems and they did what they could about the bullying, but when I was asked who exactly was bullying me, I told them that it was most of my classmates. Well, that was a bit much for my parents to process. I tried to tell them my teachers weren't helping either, because two of them in particular would call me out on a regular basis about my troubles with my school work. My dad worked a lot and when I say my mom wasn't good at math, I mean we were getting into things in that class that brought her to tears and she got frustrated and started to tell me to just put my math homework aside and do my English homework. My dad worked nights, though, and when I came home from school, he was usually getting ready for work and we just passed each other by most days. So I was always failing either my math class or my english class, and that opened me up to more ridicule. I complained about headaches constantly, to the point where I was being accused of making it up to get out of school.
One of the most frustrating things I had to deal with was how my teachers noticed my decline, accused me of being lazy or whatever they decided to say about me, again always in front of the rest of the class, and when the headache became bad enough that I couldn't focus, I'd ask to go see the nurse. My parents brought headache medicine that did help a little, but I got to a point where I was reaching the full maximum dosage for the day, with no relief. My teachers thought that I was just trying to get out of class, so they'd try to "encourage" me to make it as far into the day as I could, which I did...and by the time I got to my last couple of classes, I was virtually non-functional. I'd ask to go to the nurse and my math teacher, one of the teachers who pressured me to push through as long as I could, accused me of making it up to get out of classes I didn't like and I remember getting upset and going off on her telling her "I'm just doing what you asked, I tried to go through the day but it keeps getting worse!" This belief extended to my parents who noted that I seemed to be fine on the weekends (kind of funny how they didn't put together that the stuff I was dealing with at school was a factor) and I was even losing my appetite and not eating lunch. On one particularly bad day, I had made it through an entire school day, got in my mom's car and threw up.
I can't remember what the catalyst was, but I do know that when my parents found out about the bullying, later on in the year, they did start to reconsider my medication and whether it was making things worse. They talked to my doctor and it was decided that I'd be taken off the medication. The headaches eased up enough that I started doing better. There were also some other factors that played into things, like one of my cousins who I was close to was dealing with some pretty bad family problems; her parents were in the process of a very nasty divorce that was made worse by the fact that my uncle had suffered a serious head injury, with brain damage and a personality/behavioral change resulting. Some time that same year, my cousin cut ties with my aunt (who was the parent on "my side" of the family) and lived with her dad. Because of the family bias, as a result, I was no longer allowed to communicate with her. I didn't see or hear from her for three years.
To be honest, I've wondered a lot if I maybe have PTSD from that period of time. I don't want to downplay people who actually do verifiably suffer from PTSD, but I honestly still have nightmares about finding myself back in that school with those people. I still get headaches, though not near as frequently, and one of my friends has voiced a concern that the medication I was put on, without actually needing it, may have some some neurological damage to me. No way to really tell, I suppose. My 6th Grade year did actually go a lot better and, while I don't keep in touch with really any of my classmates from that time, I got into enjoyable hobbies and interests that are still with me to this day.
To close this wall of text out, I'll say this: if there are any parents reading this comment who have children who seem to just not like school and try to get out of school by "claiming" to not feel well, please take them seriously and try to find out what's wrong. I did not have a good enough grasp on language to properly explain what I was dealing with. All I could say was "My teachers are mean to me.", which was brushed off as "They're just being tough on you and trying to help you pass." No, they got frustrated with me and tried to bully me into behaving how they wanted me to behave. I hate two of those teachers and if I ever happen on their graves, I will piss on them. May they rot in hell.
That's why my son's ns home schooled though he only gets 2 hrs a aweek
I, also, had a terrible experience in school with some teacher bullies and others inmy life excusing themselves from taking responsibility and from their own accountability. I also know from my own experience that unforgivenss causes major problems, compounds the experience. Codependency is factor in problems compounding. I was not getting well until I began committing to saying and doing, "I CHOOSE TO FORGIVE." We have got to let the wrongdoers go, or our body our heart, and our spirit will get hurt. Not releasing them is a terrible stress and strain on our body and spirit. Bitterness is really bad for our health in every way. I was not getting better until I could clearly see what they were doing was wrong, and that I decided I was not putting up with their behavior. As an adult I can control to have boundaries to keep the abusers out of my life. At the same time, I commit and confess,"I choose to forgive!" I used to get bullied into believing the negative identity assigned me. That negative assigned identity dropped off immediately as soon as I proclaimed "I choose to forgive!". Immediately, those identity assigners lost their power over me. Saying, "I choose to forgive them" causes them to lose their power over you. You're not carrying them and their exhaustion around with you everywhere. LEAD yourself to choose to be free of them in this way. Lay them to rest so you can finally find and know rest.
Yes, I can relate. A lifetime of chronic fatigue, scoliosis, migraines and other things; autism diagnosis at 55. Great video, thanks!
Do you have fybromyalgia pain how much is autism burnout
Yes, I can so relate to this. For me one of the most detrimental aspects of being ND (AuDHD) is the feeling that everything about life is so feeble, can get thrown out of whack so easily, whether it's due to unpredictable physical conditions, like pain disconfort or feeling cognitively impaired (like you explained in the video) or being triggered emothionally. I'm trying as best as I can with supplements and nutrition etc. to control my ADHD but it's not working reliably.
What you described is probably about 80% of my living experience. Days where I don't even feel good, just ok, are a rare luxury. And I don't think I cam point this to any specific illness, I think my nervous system is just exhausted most of the time and so whatever mild physical problem that might exist just becomes worse.
Thanks Paul! What my mind wants to do and what body can do are two things. I try to under-plan activities and commitments and over-plan rest and breaks to reduce chronic pain. Take care.
Do you have heds fybromyalgia cfs decdes for me but how much is autism burnout
Some time ago, I discovered that 'stress avoidance' encompasses all aspects of my life. The type of job I do, the type of friends I have, the (failed) relationships, the sport I practice, the type of hobbies that I have, the type of leisure that I do... everything. There's a chance I developed gout from chronic stress. I take medication for that and have it under control.
Yes. You are describing the experience of having AuDHD and chronic pain. I don’t mean this as a personal attack on you but I have found some of your previous advice to be quite ableist - for example your approach to procrastination being just to get everything done in advance at your pace. I so wish I had the capacity to do things like that and your procrastination video felt like another example of “why can’t you just try harder?” I love you and your work and I’m sorry you’ve had this experience but I also think it’s giving you a window into the experience of another group of ADHD folks. The lack of control and predictability and the stress they bring are real challenges. ❤
If you’re referring to the latest vid on procrastination, I believe he clearly framed the last part as “My Strategies to Avoid Procrastination” rather than offering direct advice. Different Autistic or ADHD traits can lead to different challenges (and sure everyone can experience things differently). So, as long as it’s emphasized that this is just his personal experience, I think it should be taken as such. (Also, I do think that Paul tends to be more vague and calm when discussing his struggles, which might make it harder for those without similar experiences to fully understand.)
Same here. 💜 ♾️ 🥄🥄🥄🥄🥄
Yeah, I'm (currently self diagnosed) AuDHD, but the hEDS is confirmed. It's a confusing mix of symptoms and since I've only been looking at ASD seriously this year, I'm not entirely sure of the overlap, but I can definitely say that my current round of intense immobilizing pain from the hEDS has come RIGHT at the same time as trying to dial way back to get out of burnout. I only got the hEDS diagnosis in 2020, so understanding that is also relatively new. Burnout started just after Christmas, and every time I think I'm getting close to the end, something else hits. I just want some semblance of my life back.
Ime diagnosed heds to pain is diagnosed as migraine or fybromyalgia or us it autism burnout
I'm in this group. Multiple organ issues and autoimmune immune diseases, and ASD1.
Almost ALL symptoms since birth, many congenital organ defects common in autistic people.... Not to mention how lifelong and constant chronic ASD-related stress and sensitivities contribute to chronic illnesses in their own right.
What you say, makes sense to me. I am autistic and have histamine intolerance. Most of my life, I didn’t know this. Several times it has taken me years to recover. I had to stop working. It has been and still is hard. My diagnose is ME. That’s what they call it when they don’t know what else to call it.
Migraine has a postdrome period. Essentially, a migraine hangover. It can last longer than the migraine itself.
Mines daily not in head anymore but neck shoulders still nausea neurologist says it migraine as I used to have chronic migraine in head.ime hypermobile to
Currently dealing with depression and chronic brainfog/fatigue. I've had over a month off from work now and still wake up tired, its bananas.
I’m currently going through my neurodiverse journey! Not officially diagnosed yet but very confident I have ASD
I always thought I was experiencing severe physical symptoms to depression and chronic stress that I’ve had for many years but now I’m thinking there’s a lot more to it. I have had severe brain fog and continuous headaches for literally YEARS and I have no answers as to why I have them. Everything you’re talking about is very relatable! The constant feeling of not having control over your situation takes a MASSIVE toll. I basically run off nearly empty every day and can’t catch up because I have to work!
I really hope we get some concrete answers on how to manage these symptoms 😔
Hi, CoQ10 and astaxanthin took care of my chronic headaches and brain fog, respectively, as well as fatigue. Maybe they would help you too.
@@koalamama2 thank you so much for your insight! I’m definitely going to look into this!! 🙏🙏🙏
@@koalamama2havnt tryed the latter must try
Is it autism burnout or fybromyalgia ime same decdes heds autism ADHD now diagnosed originally diagnosed 1998 neurosthenia
yes!!! inflammatory reactions from stress is disabling
What kind of reactions? I seem to have developed gout from chronic stress.
@@zakzwijn8410CFS fybromyalgia do you have gout with alcohol
Yes, IBD, psoriasis and chronic fatigue. Thank you Paul for sharing your insights and contributing to a better understanding of what Autism means.
Thank you for explaining everything so well! 🍀 I’ve got a 3-day migraine each month. And often it happens when I’m having downtime. As if your body thinks: “now would be a good time to release all that stress”. Also you might want to look into the migraine phases: the headache phase is followed by a postdrome phase, which can last for a couple of days. During those days I feel super tired and easily get overwhelmed by social situations. It makes it hard to plan stuff, but from my experience people will totally understand when you’ve got to reschedule something.
Multiple chronic illnesses here. It's VERY hard for me to know what I'm going to be working with on any given day, and extra hard because it's hard for me to interpret my body's signals. I don't know if that's all natural or at least partially because I was absolutely taught to push through tough days as a kid, whether tough on my brain or body. But yes, I definitely think you're onto something.
Just got diagnosed with autism today and just wanted to thank you if I didn’t run into one of your videos I’ll probably still be wondering what’s wrong with me today ❤️
I felt just like this for 17 years while undiagnosed. I was mild but once I got to a moderate level (housebound) I was diagnosed with me/cfs. Spoon theory is all well and good, but many of us overestimate how much energy we have and underestimate how much energy menial tasks, anxiety, or fun mental activity takes. TBH you might have mild me/cfs as welll. If it’s gotten worse over your adult life PLEASE work on it because if it’s that, it can and usually does keep getting worse. Mins is fairly predictable now but the amount of things I can do in order to keep it that way is very low- I’d still choose that over the unpredictability which was demoralizing
I came here to recommend considering ME/CFS as well. I recently discovered that I likely have it (still in the process of getting an official diagnosis and ruling out other things), but it was scary how similar Paul's experience sounds to how mine developed about 3.5 years ago. I attributed my symptoms to autistic burnout for years.
@@sfletch5diagnosed CFS for 27 ye as rs or neurosthenia but pain is my worst symptom now with ldn as from birth I've had no energy anyway as a baby I slept 23 hrs a day my upper body pain neurologist says is migraine without headache what's what
I suspect that I am an undiagnosed autistic adult. I have experienced something very similar recently but, in my case, I know that it is the ME/CFS which I have been diagnosed with.
In the same boat as you, undiagnosed but diagnosed with me/cfs but of course that diagnosis is long process of excluding anything else (in my experience) so wondering whether in fact it’s been autistic burnout
I am dealing with both autism and chronic illness (and burnout)
How much is the autism burnout
Is there? I wish I had the brain power to look into this, maybe one day after all my other problems are sorted...
I do have advanced progressive MS. Once I asked on Reddit space for MS if anyone else is also neurodivergent and I did get lots of replies... 60+, but not useful for any statistics of course. Just nice to know that I wasn't alone.
Lost my mum last year to severe ms the link to it is autism heds I have fybromyalgia CFS heds rccx theory so true my mum's was stress which all autistic s have mostly as it started at grandmother's funeral as the proverb goes nervous people get nervous conditions
@@Truerealism747 I am so so sorry for your loss. The years of battling MS progression while working on my career (which I only had because I made that my "special interest" and my only focus), and not knowing that I was autistic, resulted in a complete burnout which I can't recover from.
That's how I found out that I'm autistic, by myself too. I would like to think that if I knew earlier, I could have been supported and advised to avoid getting here... But I've also learned that medicine and science in general are too far behind, especially to even know how important it is to support autistic people as they age. My life as I know it is over and I lost everything I worked hard for... at 40 (two years ago). Your mother even built a family, something that I completely put off my mind to be able to study and work.
A fullfilled life for us can only be done with support, like counselling to prevent irreversible damage, things that might not exist for the next few generations. We don't get to live "normal" lives, and if we try, it doesn't last long with devastating consequences... Anyway, your mother was a hero in my book 🥹
Wow, that really resonated with me when you talked about how wildly unpredictable your Energy, Mood, Physical Ability and Executive Function Ability are. I also am always aware that while I hope I can meet commitments (which I try to accept sparingly), I don't know in advance how I will feel at the time. I need significant recovery time from anything physically or emotionally draining but also from work and from driving a car. So I have drastically reduced my work hours and try to stay as attuned as possible to my physical and emotional states. Lots to think about here.
Hi Paul, I have CFS/ME, Ehlers-Danloss, ADHD and Autism, the last two only recently diagnosed. Migraines since my teens. My migraines are much better though since I gave up work, so I can't help thinking that stress had an awful lot to do with them. Hearing your account of your recent experiences made me think that although you imagined you had everything under control, perhaps you are still pushing yourself too much. I think for some of us quite driven people, this is so easy to do. If you recognise yourself in this description do please be careful, because chronic fatigue, ME creeps up without you realising it, it did for me. And I realised too late how driven I in fact was, and my life has been changed irrevocably by it. All be best, and look after yourself. Thanks for the videos - the pressure of doing those on such a regular basis would be daunting for most people!
Thank you Paul, a subject i have observed in myself. I have alexithymia and have the emotional delay, my illness seems to follow the same pattern. When I have been working I've been able to complete a weeks work, my weekends would be burn out / illness. If i took a week or fortnight holiday then that time would be spent burnout / illness. I stopped taking holidays many years ago, didn't seem much point. I then burnt out big style every few months. It seems to be a no win situation.
I've been on the sick for about 10 months now, can't afford to go anywhere or do anything. Physically and mentally im a wreck, constantly ill. I seem to function best when I'm busy, as soon as I make up my mind to stop or rest my subconscious takes control and pops.
No matter what I do to manage my situation i lose.
Hope that makes sense. 🧔 👍
I have asthma and problems with chronic ear infection. Asthma is common for autistic people. I get chronic ear infections because of my hypersensitivity to ear wax and I'm constantly trying to remove it from my ears.
I was diagnosed asthma but it was fnd breathing
Audhd, POTS, pmdd, there's absolutely a connection. We are burnt out by sensory, social, etc. This takes a physical toll and leads to problems regulating physically. Also posture problems are common, link to problems with compression in the neck. I recommend magnesium for your migraines, also helps relax muscles and helps with sleep.
Hi Paul, So glad I found your videos. I have EDS (hyper mobile joints) which comes with food sensitivities, autoimmune disorders, hypothyroid disease. All of which drain the energy. I was diagnosed at age 68 and this year at 71 have learned that I am autistic. It puts my entire life in perspective. I learned decades ago to write every item in my daybook in pencil. It has been years of trial and error with essentially no medical assistance to figure the whole business out myself. You find joy where you can because there is no coffee, no alcohol, no "a whole long list of foods", no running or vigorous activity, no big social or musical events, etc. I am grateful for the internet and the links to others who share their experiences. And thank goodness I love to read.
I try to listen to all your podcasts because you talk so much sense. Mostly, I have drawn the same conclusions as you but it is so comforting to hear you declare it on RUclips.
A change in routine can be really problematical. For many years, I was sole carer to my very sick husband. People marvelled that I could do this as it was demanding heavy work. However, the routine provided appropriate strengthening exercises for my neuro-diverse body and was ideal for me. People came every day to do all domestic work. Because I was caring, it was perfectly socially acceptable for me to delegate everything that I find difficult, e.g. washing up.
Life became hard when he died, and I didn’t have that perfect structure for me anymore. No one had ever really realised that I was autistic until that time (aged 70 ) when slowly I crashed into severe autistic burnout
It could be that spending so much time writing a book without the alternative activities was what caused the problem. Strange things can help to keep the body stable. I need to watch a UK Tv quiz called Richard Osman’s House of Games while I eat my lunch every day to keep my hand I body coordination stable. Thank you for your podcast which hold me steady.
Thank you for the video, Paul. You articulated my exact feelings with burnout and why I am struggling with recovery. This perspective helps.
I have EDS and POTS (still in the questioning phase of autism), and for me the frustration isn't only the unpredictability of how many spoons I start my day with - but also how many spoons it takes to do a task from day to day. Because people are constantly telling me that I just can't do things, and need to stop pushing myself, which I'm trying, but feels impossible, because one day I can do a task and it barely affect me, and then on another day I do the exact same task and it wipes me out for a day or more.
Yep. Thanks for this!
Fatigue, brain fog, gut issues, arthritis, chronic pain, disturbed sleep.
I didn't realise how much pain, as I habitually dissociated pretty much all the time because I didn't know what was causing the pain or what to do about it.
Recently did the RPAH elimination diet and I am definitely sensitive to some common things in food. This is what is causing the brain fog, pain etc. I don't know though if this permanent, or whether I can heal and will become less sensitive.
I realised belatedly that I have a family history of arthritis & inflammation.
After decades of struggling, I'm recognising I have a chronic physical condition (disability) as well as autism.
Hi Paul,
Thank you for making all these accessible and interesting videos - you have been a large part of my self discovery journey in the past 15 months when I started to suspect that I'm in fact autistic. I probably would not have fallen down the correct rabbit hole if it weren't for my physical disabilities come to the fore - I got covid for the first time in 2022 and suddenly all the many health issues I have all got worse at the same time plus I gained longcovid on top of them. Suddenly I wasn't able to emotionally regulate at all and my already poor stress tolerance went out the window, initially it was like continual brainfog induced meltdowns - it felt like my brain was screaming at me but put this and other personality changes down to covid.
While attempting to cope and find out wth was wrong with me I ended up in the Twitter disability and covid conscious communities and slowly started to find pieces of my own puzzle that were missed by health care people. Turns out I have hEDS which comes with a slew of malfunctions which include migraine, dysautonomia and a lot of general body aches/pains - this in turn led to seeing posts about hEDS being a comorbidity for neurodivergent people and I also noticed that everyone I resonated heavily with online were autistic. Much to my surprise as surely autistic people do not have empathy (as was continually blasted everywhere in media/culture)? Yet all these people were more caring and kind than what I encounter offline - seeds were planted in my mind...
Fast forward to late summer 2023 when I had a sudden improvement in my physical longcovid symptoms and yet my brain was still all over the place - the longcovid really took a toll on my memory and cognition but I still felt very otherworldly once they lessened. Suddenly I remembered that I was once hospitilized for severe depression (burnout??) and they gave me a bipolar 2 and dysthymia diagnosis but I have not had single bipolar episode since then (if ever) and it's not like bipolar disorder is something you recover from so the penny started slowly dropping. If I'm not bipolar - then what is making me an alien? 👽
I consequently scored sky high on all available online screeners even when attempting to not choose the autistic answers - i've tried to debunk myself in case of bias and screening myself for other conditions and/or mental health conditions but autism is the only one that fits so far. I don't think I'll be able to get a dx unless i suddenly win a lot of money - I'm a 51-year old woman and where I currently live you can only get a free adult screening if you need external support and otherwise pay in excess of 2.500 euros. I do need a lot of support but my husband has been providing this intuitively for our whole relationship which means the state thinks I'm covered 🤷
Having a chronic illness makes masking near impossible - I don't think I've ever been very good at it anyway but whatever little fakery I was capable of previously has completely dissolved 😅 I am less stressed generally since working from the assumption that I am in fact autistic, I accommodate myself a lot more and stopped beating myself up about the executive dysfunction and frequent miscommunications - I do feel more lonely at the same time as the physical illness contributes to overwhelm which means that being social takes a huge extra toll. Not sure how to balance that and I also don't have any close by neurodivergent friends to connect with - I imagine that would be less exhausting than talking to allistic people. I guess my two cents on autism and chronic illness would be that it makes near impossible to have any spoons left for masking and just getting out of bed is overwhelm territory.
Regarding your recent illness and following migraines and persistent headaches - this does sound like it was covid like others mentioned as well. Please continue to take it easy as symptoms can persist for at least 6 weeks even when it doesn't lead to longcovid - avoiding overexertion should hopefully also reduce the risk of persistent illness.
Apologies for the wall of text - I haven't even said half of what i wanted but this is already a whole chapter so should stop clogging up your comments!
PS. once I mentioned, to the few close friends I do have, that I suspected I was autistic none of them were surprised - I wasn't sure whether to be offended or not lol. I only got one 'everyone is a little bit autistic', she had been misinformed by a mother of an autistic child ;)
I relate to the environment causing burnout. It’s so hard when you grow up in an abusive home because I can never get over my burnout to work enough to get out. I’m 31 now and feel I will never escape and just feel like crap the whole time.
I try to keep it short: yes I am chronically ill next to autism (chronic Depression, Tinnitus, pain...) and it is so hard to tangle through the everyday life with "only" ASD but the other "little" things that go away from time to time more or less it really is a struggle keeping one alive 😮💨
Absolutely. Suffered CPTSD triggered central sleep apnea.
The first was repeated ear infections and sinusitis, and then in my teens, I added unpredictable GI issues, (i blame antibiotics destroying the gut). I decided to stop going to the emergency room because they could never tell me what it was, but in my late teens I started having chronic pain, then diabetes, then crohns (8 surgeries in 18 months) and finally at 49, I had a heart attack. Diagnosed Adhd at 47, diagnosed autism + adhd at 48. I still work a full-time job, but it is sooo challenging, every... day. I thank God every day for keeping me going. I would be homeless and jobless if it were up to my chronic comorbidities.
I have ME/CFS and can completely relate to this, especially the unknown. I wake up with minus spoons most days, and become more depleted as the day unfurls. The unknown and inability to plan/foresee is one of the most difficult parts for me. The complete exhaustion is another, but there is a lot more to it than those two things.
I am waiting for assessments, though I am aware of the connections between ASD, ADHD and ME/CFS, hypermobility, hEDS, gastroparesis etc.
Maybe have a look into ME/CFS, the things you are describing sound very similar to what I, and others, experience as part of it. Migraines, brain fog, the overwhelming tiredness, disrupted cognitive capacity, fluctuating energy levels, the unpredictable fluctuation of everything you experience, etc. regardless of if it is ME, or not, it sounds like it would be really helpful to get some medical advice. I'm really sorry you're going through that and I hope you can get to the bottom of it and feel better soon!
Unfortunately, with ME/CFS, there is no "push through". And if you try, your body will just push back, and it may also lead to becoming more severe. Scientific evidence has highlighted that our bodies don't follow the usual recovery process after activity (activity being physical, emotional, psychological..... And there's a fourth but I always forget it). So our best medicine is rest/sleep....... And a lot of it. While also learning to do things gradually, gently and other a longer period of time. But there are other things that work for people as well. Unfortunately it's an individual case of trial and error.
It also means that it can take me a while to write things, or need to edit multiple times to get it right, or struggle to speak/think/form thoughts verbally and mentally. With difficulty constructing things properly, noticing if I have written/said things appropriately etc. Concentration and ability can just go right out of the window, for moments, hours or days at any given time.
Social!..... The fourth activity group is social.
Please check PEM as well. It's part of ME/CFS, and might help you figure out what's happening for you. PEM stands for Post-Exertional Malaise.
"PEM is a key symptom of ME/CFS, and is defined as a worsening of symptoms after physical, mental, or emotional exertion".
I just have ASD, nothing else, my mom also has ASD but she has other conditions like Cerebral Palsy (CP for short) too…
Hey I have ASD and cerebral palsy too haha but cerebral palsy isn't like an autoimmune condition or anything, she would have been born with it
@@orangesnowflake3769that counts though. Chronic is chronic.
@@christinapankey7360 that’s why we (mom and I) felt it was important to mention her CP
@@orangesnowflake3769 we were born with ASD too, I don’t see why it wouldn’t be the same situation for CP
This is such a circle moment I started watching your videos when I was about to get an autism assessment (I’m autistic which I had no idea about I didn’t even know what autism was until the eating disorder treatment center where I went suspected it and I found you). At the end of last year I became chronically ill/disabled (I already had one chronic illness but now I became severely ill and now use a rollator and wheelchair). I had forgotten about your channel for a while and all of a sudden this appeared on my recommended. After me not watching you for at least 1.5 years, being diagnosed autistic and becoming chronically ill. Thank you for your videos I just found this to be such a coincidence, the timing. If you would’ve posted this before I became ill I wouldn’t have watched it.
Yep. Totally relate. In my case, EDS or Ehlers-Danlos Syndrome is something that is part of my alphabet soup. Every single day must be carefully parceled out with many "parcels" of time I can bear to push out to another time on the worst days.
I can totally relate but take this one stage further in that there are definite patterns for me. Certain events or plans will trigger brain fog, low mood, digestive issues. Vacations, hanging out with certain people, Christmas holidays to name but a few. Usually in the run up I will start to feel unwell like clockwork and then symptoms will stop when the event has finished. I guess maybe it’s my brain saying I can’t cope with this! Not diagnosed but on my journey and this is the first time I’ve heard someone articulate something similar.
I have ME/CFS and fibromyalgia and have suspected for a long time that there is an huge overlap with autistic burnout.I think the unpredictable nature of the illness is a huge part of the stress for my autism where structure, planning and routine are key elements for keeping me regulated. I find building in flexibility to my routines essential to reduce the stress response.
Me to fybromyalgia is part of cfs ime sure or us it autism burnout and surely related to SPD 27 years CFS 7 fybromyalgia neurologist says my migraine is daily migraine in body do you have heds
I seem to experience chronic conditions serially, with gaps. For a long time I was bothered by cluster headaches (to the extent that in one year my sick days added up to three months). They reduced when I switched to a less stressful job, and mostly disappeared after a long process of figuring out intolerances and allergies. I then had chronic pain for a decade, fixed by burning out some nerves in my spine. Currently I have Long Covid, including fatigue, brain fog, and respiratory issues. I also have mild asthma, mild depression, and PTSD. I do wonder how much of this is just the accumulated effect of 60 years of undiagnosed autism (well, 59 and one year self-diagnosed).
As for planning, yeah, it's a pain. When I buy a concert ticket I have to hope that I'll be well enough to attend, and if it's more than ~75 minutes away I have to think about travel and maybe accommodation. Happily I haven't had to bail on any of those yet, but sometimes I've not been able to go to a more local event. If it's not something that I think will sell out I'll leave it to the last minute, and have occasionally missed out that way too.
I've had chronic migraines since I was 7 years old, and cluster headaches since 12. Fortunately, the latter only happen during seasonal changes.
The migraines, though, are always worse when I'm in burnout! Even before reaching that threshold, they increase in both intensity and duration. No matter what I do, though, it's one per week.
Additionally, the GI issues. They diagnosed me with IBS by ruling everything else out. I don't know if that really explains all of it, though, because the total abdominal cramping I get during burnout can send me to the ER. The last one they thought was gallstones, and the one before that they thought it was kidney stones. That's the level of pain it causes. And my pain tolerance level is very high!
I think the chronic stress that comes with being autistic and trying to be a functional adult leads to all of these chronic health issues. 😢❤
I relate to this 100%. But most of my friends do not understand this aspect. When they ask me "can you come over and help us with this event on x date?" , I am not able to say yes with confidence. Coz I am not sure I am gonna be in the right energy and health that day. And I was getting migraines everyday when I was pushing thru pain and discomfort in my last job. After I quit the job, migraines were back to normal ( which is once in a while or if too much exposure to Sun).
Asthma as a little kid and working up to more inflamatory based issues and pain currently. Only in the last couple years ticking the AuDHA boxes. In the last 25 or so years with additional major life stress points my previous masking became too high a price to pay ie not enough spoons to maintain it. Being self employed to be able to adjust for the health issues the brain fog and random no energy/or pain days it's been a beast.
So true seams the autism causes so much
Sounds very familiar, I've always believed/known in my case at least that I have both somehow, never got to pin point exactly what that is and I believe it's more then one thing, but that's just me. Thanks for the video, that makes me feel less alone in this.🙏😘
Thank you for this, Paul. Migraine is a big and difficult part of my life, and I also experience PMDD. Your description of how you're cautious making plans is a lot like my way of living. I always have to make an "escape plan" along with the actual plan whether that's paying extra for a flexible reservation if I must travel or keeping my groceries stocked in case I'm too unwell to leave home. I'm a cis female in my mid-forties, and the intense fluctuations in hormones are making things much more unpredictable for me these days. I'm just beginning to experience a shift towards normal after from about 3 weeks of near daily migraine. Migraine seemed to heighten the sensory sensitivity, which it really interesting I think. Hope you continue to feel better.
I totally understand your situation and wish you all the best and hope that your migraine will be less frequent. Take care 🍀
I have had chronic fatigue for thirty years and it sounds like you have it too. My CFS was caused by a viral infection and I was very lucky that I had a doctor who took it seriously back then but knowing what you have and learning how to cope are not the same. Took me a few years.. The mental trick is ‘knowing’ you can do the thing you want if you are willing to pay the price the next day or two. If yes, go ahead, if no, don’t do it. That takes a lot of the contingency planning stress away. Just do not plan two important things on consecutive days. Adrenaline- that is getting really excited about something- does counteract fatigue as long as you accept the next-day-off outcome. I guess what I am saying is my experience is that if you wake up on a zero spoon day, you can borrow a spoon or two from the next day once you learn the trick to jazzing your adrenaline (without drugs!) but you have to pay it back with interest.
As someone with ASD/ADHD and chronic pain, I will say there is some predictability. It just takes YEARS to develop an awareness of your limits, etc. Even with serious flare ups, I know I've been pushing myself too much or ignoring warning signs.
Do you have me fybromyalgia
Oh the migraines! I developed them around 8 years old and now I'm 35. Beta blocker has helped some but for the bad ones, not even multiple Sumatriptans will stop the throbbing 🤯 I resonated with your migraine and headache descriptions so much!
Mine are chronic but in the shoulders neck now not in head same pain
Very realatable; using energy to recover from migraines and continuously feeling drainined because of it, is a revelation
thank you so much for your insight, absolutely progressive.
Brother, your mastery of self needs more now. You have become an artist, and (as absolutely abstract as that sounds) rejoice, the input of one true artist would finish! your egress .
Thank you so much for your insight.
Yes, all this.
This sounds a bit like a cycle that I find myself in fairly frequently. I have chronic fatique/fibromyalgia (among other things) as well as ASD2. When my pain flairs it puts me on the edge of, or into, sensory overload. This ramps up the pain. Either of these alone will cause nasty brain fog that doesn't let me easily figure out how to break out of the cycle, and the resulting frustration/hopelessness results in more pain, more sensory overload, and more brain fog. Then medical people tell me I need to be more committed to getting out and socializing if I'm to "get over" my anxiety issues. I can't speak to the spoons thing because I think I have a solid case of phantom spoon syndrome. All that to say -- you're not wrong.
I relate to your experiences and recently discovering my own neurodiversity and chronic pain conditions. Hope you are having a good day. As a side note, I know there is alot of controversy but I highly recommend medical cannabis its really changed my life and made the symptoms become manageable (it’s helpful for all my conditions tbh)
@@zacwarnest-knowles9139do you have heds to
it was actually a lifelong series of "unexplainable" chronic illnesses that lead me on the search for answers and to find out autism was the common link between them (if we ignore the dsm-5 criteria). Have been dealing with gastro-intestinal, sleep issues for pretty much since i was a toddler, and migraines, chronic fatigue and fibromyalgia since highschool that worsened when entered university and than the job field. i had to heavily modify my lifestyle to a pace that allowed me to still be functional and provide for myself while taking into consideration my needs. Just after doing all that and despite improvements, it's when the possibility of autism came while on a therapy session. funny how my own body was screaming the cause but i was completely unaware of the many signs it was trying to point out.
Same here now 44 how is your fybromyalgia now do you have heds to
@@Truerealism747 it's manageable most times, though it tends to flare up during summer for me and that's when it becomes considerably harder to handle. i have no diagnosis of heds, but things such as fatigue, digestion, jaw lack of vitamin absobtion and such are quite common occurence... Nowadays don't think i have depression or others, but definitely burnt out most times. Though with more knowledge comes more understanding of what works and what doesn't for me, so i'm staying possitive that i'm building a kind future :) wishing you the best too!
There is an overlap for me, for sure. Chronic pain due to hypermobile joints (HSD) so that’s always an energy drain, with sometimes being more unexpected BIG energy drain. Combine that with the ASD and a sleeping disorder (basically insomnia at this point) and all of those are potential wild cards for the amount of spoons I’ll have during the day and how quickly I’m using them up.
At this point I’m struggling to get through the days, basically unable to work, due to the combined energy drain, the combined stress, the combined unpredictable factors.. of those 3 disorders.
I think you described it pretty good. I still plan things, but I also need to take precautions and I do have some things that are just not an option for me. Either because of lack of spoons, or any of the symptoms and limitations because of the HSD and ASD. Yes, at this point I feel that the word ‘disability’ and ‘disabled person’ do describe me, my ASD and my HSD combined.
On the barbeque situation, intense smoke and smoked/roasted food can also mess with your body and immune system, contributing to your discomfort the next morning.
Story of my life right here!
I was undiagnosed until this year at 46 and I remember always feeling non-specific ‘ill’ when I was very young and through my school years. I wonder if this was a manifestation of my asd? School was so incredibly difficult but my family were (awful) unsupportive in every way so I couldn’t even recognise that my problems were mental health issues/ sensory etc. I just learned to mask really early.
Now I have a whole host of health issues with diagnoses of MS, migraines etc and am awaiting investigations for gastro and rheumatic clinics.
I haven’t been able to work for several years now. I worked full time for 25 years out of absolute necessity and it has really taken a toll on my body.
I want to get stronger and healthier in all obvious ways but there’s never enough spoons!!!!
If it wasn’t for people like you Paul, I would still be undiagnosed and hating myself for not being able to function like normal people!
Do you have ms or fybromyalgia
I have EDS(Ehlers Danlos syndrome) Not the super cool contortionist kind or rubber skin kind. I am double jointed. But its more like I don't see my joints go to far sometimes resulting in really bad joint pain. Now in my middle years, my back is where I feel it most. So just standing up has been challenging for the last 10 days. It makes having a burnout period much worse. Not being able to get around kicks your mood down too. The problem is I have had to push hard into the pain zone just to be employed for so many years. Now I just can not do those jobs. Its really making it hard to make any money as someone with ASD1 and EDS. Hope we all get the help we need. I'm struggle to just have insurance. 🤖🤖🤖
I have heds to but I can put arms up back finger to wrist but they say my pain is fybromyalgia migraine from the autism
Killer video! Thank you! Can you grow your dreadlocks again?!?! I love how they helped you early on! They say they are magical! ❤
dang im kinda interested, bc ive noticed it a little bit that it happens to be the case (as i have chronic + autism)
Thank You Paul! 🙋♀️
Since I was a baby, I've had daily nausea, almost daily vomiting and daily intense stomach pains (all usually fading 2-4 hours after being awake). When I'm stressed to get something done/accomplished, ESPECIALLY when I had to go to work (or school) on a set schedule and had to be there, the same exact days and times, day in and out (didn't matter if it was morning/afternoon/night shift), I would have to call out of work/school frequently (1-5 days off every week). But now that I have a job where I literally, get to pick what job I do and when I do it (there are guidelines BUT for the most part, it's all up to me) I don't wake up/get sick every morning. It's just every couple of days or so now.
Also, I have what I call my, "heavy days." These are days when I wake up and my body literally feels SO heavy, (like it is made of lead) getting up, is a draining workout, even if just to let's my dogs outside and to go to the bathroom myself, it's draining in itself but it's a rare occasion nowadays.
Your speaking my life. If i go to an event or visit friends i will inevitability not be well the next day. I do have a chronic issue but it's like clockwork people + masking= crash every time, not to mention that background noise or stress that is going on. I just feel like i have missed out so much on life because i get invited to things and never know if I'm going to be well enough....i just missed my friends wedding last week because i just couldn't get it together enough to go. Mental is the worst. Where the chronic illness doesn't get me the autism will😢
like dr berg says, chemical, emotional and physical, the three types of stressors, each make things worse if continuing to be exposed beyond recovery capacity. things such as autoimmune conditions, and the more "fun" symptoms/traits of autism. (they're not all really fun. but it's a fun challenge to keep a playful chipper upbeat attitude about the horrible things.) Chemical, Emotional, Physical. Stress & trauma.
Have you got any better what autoimmune do you have
I have to add to the many comments on ME/CFS and Long COVID. Three autistic people in my nuclear family, two with ME/CFS. Ours started with a flu. Then headaches and brainfog. Always waking with no spoons. Sounds like your recent journey, though I hope it isn't 🙏
Rccx gene theory my father CFS and his sister's fybromyalgia sleep apnea they have ADHD autism from my mum's side heds fybromyalgia cfs years or its burnout chronic migraine
I can relate, I don't know why everything costs so much, and takes so much effort, I don't know why I get the headaches. I have different words, examples, metaphors, and levels for pain. Recently, after shots, I hurt everywhere for days. That is not my usual experience. Usually, after shots I just feel relief.
I've had chronic migraines my whole life until my neurologist told me to take 400mg of magnesium glycinate and 400mg of vitamin B2 daily before bed. Since then the only times I have had a migraine was when I didn't take the supplements. I was recently diagnosed with AuDHD at 47. Also watch your caffeine and sugar intake as that also causes me issues. I also have bad arthritis since a young age. Hope this helps and thanks for the video!
Not knowing how much energy I'll have tomorrow is so common issue. Even less next week, or next month. Except when it's certain I won't have any. I just recently marked one big REST on my calendar - I knew I'd be exhausted that day. And I was. I also avoid making much appointments for certain times of the year. April dust? Time to stay home and minimise all commitments. But when I would most probably have energy? No clue whatsoever.
For years I was wondering for the reason. I had got asthma diagnosis, and meds to treat it - but I felt it didn't explain everything .Also my depression episodes seemed to be a result of *something* - exhaustion, but what made me burn out?
Enter ASD and ADHD, finally. Everything started to fall in place, especially when I realised I seem to also match for HSD (looser criterias than for hEDS, but not necessarily any difference in how they affect life).
Now some of the common comorbidities seem to be tied genetically. But there's a lot that's simply just a result of how life as an ASD person is. So much stress, sensory overload, burning out... Human beings don't do well when constantly stressed.
Working part time would probably help many, but it isn't enough. We need courage to arrange our lives so that it's less taxing..
I think there is an overlap. Aside from ASD/ADHD I have MTHFR gene mutation and slow COMT which have some significant health impacts. I also just found out that my hormones are all out of whack and I have no idea why as I live a very clean, healthy and active lifestyle being a qualified health coach and nutritionist. So in terms of lifestyle, I know what to do and why for optimal health. And yet I still have issues to address. Go figure lol.
Heds?
@Truerealism747 considered it more than once! And it's a possibility I think though if I do it's a very mild case of it.
I had an issue with my migraine medication causing an increase in migraine frequency & intensity. After a week of migraines (possibly cluster headaches), I stopped taking it. Now they’re back to their regular schedule & intensity. I also experience the migraine hangover/brainfog afterwards. I rarely make plans partially due to not knowing how I’ll feel physically on any given occasion.
Thanks Paul. Hope you are well. 2022 is the year when things got me. Had a triggering encounter. Broke a bone. Afib. Rotator cuff injury. Covid infection. All the while trying to find out if I’m autistic. Covid reactivated my EBV cfs. And now being treated for rheumatoid arthritis 💙🙏🏻🙏🏻🙏🏻🙏🏻💞 And beginning of 2023 dx w ASD
For some reason my pattern recognition high focus, is on energy expenditures and activity consequences. After 1,5 year of fibromyalgia, and a lifetime of neurodivergence I almost always knows what to expect and how much I can push into my calender, and how much recovery time any activity cost either at a high energy day or low energy day (not the same). So I make basic plans and if for some reason I have a little extra I tell people maybe on plans (but if they want for sure, it should be another time) - I cannot though completely answer for unpredictable external events, such as car needing to go to mechanic, or other more emergent issues. Even doctor appointments I push days ahead, if I know I want have spoons, unless I feel really bad.
That sounds like there might be a hint of depression or ADHD in the picture. I suspect that latter may be involved in my chronic inability to plan a future activity that requires a lot of concentration. Once I get over that hump, or sneak in around it somehow, I have trouble stopping even to make a bathroom or food run.
{o.o}
I have read from functional medicine doctors that there might be a lot of sensitivities in autistic people which can lead to neuroinflamation. For example that gluten and salicylate sensitivity is quite common. About 2 years ago i got a who dna scanned and since analyzed it with several services. It has show strong predisposition to autism, predisposition to ADHD and A LOTS AND LOTS of food sensitivities :o !!! Avoiding a lot of offending things i feel somewhat better nowadays, although i feel i havent uncovered absolutelly everything yet. I have far less anxiety than before and falling asleep more reliably. It hasnt "cured" my autism but i do function better :) . I have lost 30 kilos but my rheumatoid arthritis has flared ... We will see how things will go.
I have four co-occurring autoimmune conditions. One thing that my family doesn't yet understand is that I need more time after socialising or performing tasks than others.
I kept trying to build up to work and burning out when I had a job within 6 months. This is part due to pressure I put on myself because I feel like I have to be worth my wages. Though also that the social rules become stricter if you go from volunteer to employee. After every recovery I still felt like I was able to do less than I could do before the big burnout.
Eventually I found out I am deficient in vitamin B12 and will need to inject it for the rest of my life. I am still not doing very well so I am looking into other things too.
Besides the unreliability of my own capability and all the stress that brings. I also find that not being able to stick to my usual routines, or even a routine, is something that causes me considerable stress.
Yup. I’ve been diagnosed with Coeliac disease for over 3 years now. But, I’m also having a lot of other draining issues, like dealing with stress related digestive issues, and for years now I’ve been dealing with excessive sweating for all kinds of reasons some I know of some I don’t. Brain fog is a constant which makes it hard to be functional at all! Basically I don’t ever wake up with any spoons. I’ve been depressed for several years now. Am I the only one who struggles with being discouraged super easily? Like something simple like doing the laundry becomes dreadful! 😞
Excessive sweating can be a part if SPD ime always hot even in winter especially if your hypermobile
I have phases of things wearing me down. I was able to mask well enough to trick my parents and employers into thinking I'm capable enough to hold my full time job before I ever thought of myself as possibly autistic. I have a big history with gastro esophageal problems, intense headaches/migraines, the inertia of not wanting to stop my tasks for anything, severe anxiety with regards to losing the ability to care for myself or be the adult my parents think I am... the stress of my family history full of mental health issues and being coerced into joining for overcrowded events, and my job expectations needing me to fill essentially 3 different types of roles...
I'm spread thinner than tissue paper and I don't feel like I can do what I need to because I don't feel secure in asking for help. I make too little money to get an easier job and I don't trust those around me to not make my stress worse.
I have had migraines for 12 days a month from the age of 27 until 50. It came in clusters of 3 days off which I would lay in bed, puking and sleeping. Always triggered by too much social interaction which gave me a lot of stress. When I had to get out and f.i. drive, it would be dangerous because my eyes were blurry. Without too much social interaction I'm fine. I am diagnosed with chronic migraine but also did 3 autism tests. Apparently, I'm 100% autistic. Though my family thinks I have adhd. I agree that I probably have both.
Do you have hypomobility to any pain in body
You mentioned this meet up with old friends and that it was somewhat nice, but not really satisfying because there were too many people, it´s been noisy etc etc. You went back to what you thought is what you really want to do, but maybe it´s not? Maybe you lack of emotional connection and now after this short experience of togetherness you´re grieving?
What I found out about myself and since then put as priority is that I basically inherited a profound lack of social contacts. It would take too long to explain the bad influence of my family system, but the result is severe general anxiety plus lack of social skills, always ending up with avoidant and/or toxic partners etc. I basically emotionally starved myself almost to death bc I couldn´t see how even my best friend/flat mate increased my isolation, constantly a back and forth, come close, no wait, leave me alone etc. It´s a severe imbalance in my brain and body chemistry which causes my chronic fatigue, fibromyalgia, depression, and it won´t vanish until I found my ways to form stabile emotional bonds.
I was diagnosed with cfs 20 years ago, Autism 6 months ago. I identify totally.
I think you're on to something. I have a rheumatic illness and managing the pain makes me way more capable of executive function. Coupled with sensory issues (sounds/lights) I burnout so fast, if both are present.
I have migraines too and I'm convinced it's connected with my autism. When I was in college I had migraines at least 2 or 3 days a week (!). After two years of putting college first and working so hard around my migraines: I burned out. It was quite bad, my mind and body were so out of sync, I couldn't even put on my coat and head out :( So I took a year off. And my migraines almost completely vanished! Maybe had 3 migraines in a year!!!
Since then I really try to take notice of fatigue and/or sensory overload. The sensory issues are hard, because I still don't really know how sensitive I am to that. I think it's more uncousious for me. When I go to work to the office there's ofcourse lights/sounds/smells/etc. But I don't feel I'm really bothered by it in the moment. More that it secretly takes energy. Because when I already am tired, they do bother me a lot. I'm still learning so much and trying to figure myself out.
I think that my anxiety is a main trigger for returning physical problems, ranging from exhaustion to contracting each and every virus to physical pain. Because I am used to that, I sometimes push myself to work regardless, which makes it worse of course. I find it especially hard to admit to myself that I can't do as much as I feel I should, or as other people can. I really want to be accepted, to be good enough.
Don't benchmark with neurotypicals different species
Audhd with fibromyalgia over here 😢 migraines every 3 days... Have tried everything, meds, all kinds of phisioteraphy, magnets, acupunture, electricity... Just knowing myself and try to rest every no and them have helped me. The Hard thing is working as a artist... I JUST dont know when or how to stop
Same here though they say my upper body pain is migraine.biw without headpain daily u have heds to do you
I'm diagnosed adhd but highly suspect austim (daughter is diagnosed) this really hit home. After starting adhd meds a few years ago, I thought it was a lifesaver, until I got really sick after I gave myself severe burnout. I became incredibly cold intolerant, dizzy, fatigued, brain fog, neurological symptoms, and those miracle meds stopped working entirely. I felt like a medical mystery as no one could tell me what was wrong until recently. I still don't have a name for it, but if seems that my blood vessels are always constricted, probably due to chronic stress from like... Daily living. I've had migraines since I was 7, cervicogenic headaches for the last decade or more. In my mind it's all due to burnout. The medication in currently taking helped all conditions, so it's probably been getting worse over the course of my life.
Burnout is no joke.
Me to I think that to sounds you have pots what medication helping
5 mental illness
Food allergies (intolerances)
Hayfever and other sinus problems to strong smells
Excma (sensitive skin)
Mild learning disability
That's just off the top of my head. Haven't been told that I have austim or ADHD (anything like that) but think I need to be tested.
I relate so fucking much!
And I do live in between two gates that squeeze me from both sides: randomness and unpredictability, and me knowing that if I stop pushing through, I'll have no work, support or money quite soon.
So I have to push. But I know how bad it is. That's why I dissociate to the degree "remembered that painkillers exist after being in severe pain for hours", and this is faaaaar from good sign hehe.
Almost-finished-official-diagnostic process for autism, and some very physical conditions are with me from day one if this strange life. Others joined them later😅