Me too. Honestly, better to do something til it hurts than nothing til it hurts. Recovery from something is hard. Recovery from nothing is basically impossible.
I'm an orthotist, I see lots of autistic kids and they almost always have hypermobile joints. This is particularly apparent in the foot and ankle, lots of flat feet, knock knees and instability. Because of the misalignment there is a huge cost in energy expenditure when doing physical activity.
As well as being autistic, I've had a bunch of auto-immune problems for over 30 years and have seen many, many healthcare professionals over that time. In my experience, orthotists are the most helpful, impactful and empathetic. (The rest can go and take a running jump.) Keep doing what you do - it's really valuable and very much appreciated.
I'm autistic. Diagnosed at 51. I was always tired, but was forced to do PE anyway. Most of my childhood, I had one or both ankles sprained. I wish someone would have looked into it. I'm sure a lot of people think you're awesome. 😃
@dimpsthealien333 I had flat feet too. Probably still do. It might be why my ankles collapse frequently. I used to have those custom arch supports in my shoes. I still got sprains though.
Wow, had to reach the age of 50 and suffer from severe pain in my knee for 2 years now, to learn this from someone on the internet. All doctors before made me feel like it was MY fault to have flat feet. Well, they probably do not know themselves. By the way: I have a diagnosed kid and wanted to know about myself, but after a 2-year waiting period my „assessment“ was interrupted, cause in a brief first interview the psychologist thought I was too social to be autistic. 2024 and they still don‘t get it. 😂
I cried watching this because this is me! I've been suffering from chronic pain and fatigue since 2018 where it affects my mobility. I was diagnosed with Fibromyalgia but I have always felt there is something more. I have been seeing a Pain Psychologist at the hospital for over a year. Recently, she discussed with me that she highly suspects I am on the spectrum and how I have been highly masking things in all aspects of my life. After seeing my GP about it, I scored 44 out of 50 on the AQ50 and a referral has been made to seek an autism assessment. I am 39 years old. My daughter who is 4 years old is diagnosed with autism. Thankyou so much for doing this video and the work that you do. It really means a lot because it can feel isolating and that there is no support. Your videos really help 👍
Yes, very recognizable. Chronic pain in muscles and joints, looks like fibromyalgia but isn’t that. Irritable bowel syndrome Sleep disorders, mostly due to the above problems. Chronic fatigue due to the above problems. Keep doing exercises like walking, cycling and but don’t overdo it helps. ‘Niksen’ a few times a day helps too. Eat healthy, as less ultra processed foods as possible (better for your bowels and if they are functioning better, your whole body functions better). I’m 63 and discovered just 6 months ago that I’m autistic. Now all the unsolved puzzle pieces of my life fall in place.
I got misdiagnosed with fibromyalgia by a rheumatologist even though I already had a hypermobility syndrome diagnosis from another Australian rheumatologist. The guy who thought it was fibromyalgia spent about 10 minutes with me. He was an idiot. I shouldn't have paid him.
@@Truerealism747 When I need a doctor's note for the government my GP puts fibro on it. Even though I don't really identify with the diagnosis it is a handy label.
@@australiafair5926 yes it does group to much does your pain in body feals like migraine as mine does daily see Dr silvers work he says migraine can present without headache
Thanks for doing this. There definitely needs to be an increased awareness of the link between hyper mobility, EDS, MCAS and Autism/ADHD. They so often ride together, and yet nobody realizes
Everyone with hypermobility: you really need to protect your neck with good posture. Neck issues from hyper cause so many downstream symptoms, you really want to avoid it if at all possible!!!
finding a method with a professional to replace the first vertebra: called Atlas, helped me tremendously!!!!! For many people it is misplaced slightly and impacts the whole structure
My GP never mentioned that my constant fatigue nor how easily I bruise, is/could be a part of my hyper-mobility before. This is the first time that that is a possible explanation, that I've ever had for those two things. Neither my GP or psych ever let me know it is common for those with EDS to be autistic, or vice versa, before, either.
Don’t forget that hEDS has a cardiovascular type. It often affects the vessels in the head and can be the cause of brain bleeds. I’m an autistic hyper mobile mom whose autistic son has this form. It’s inherited from my mom’s side of the family. He had a brain bleed this summer and I was able to point his neurologist in the right direction because I know our family history. If you’re hyper mobile and often get headaches or migraines, get yourself checked out.
@@racheloramIt is, but I feel like there is a lot of overlap. Many people in my family have had both, and have also lived with POTS. I think it’s safe to say that there is a genetic connection.
As mentioned in the video, there is 100% a connection: all EDS types have a problem with connective tissue. Connective tissue is found everywhere in the body and affects multiple systems. Just because you don't have the specific genetic mutation for vascular, kyphoscoliotic, etc., and you've thus been diagnosed with hEDS, that doesn't mean you are off the hook when it comes to issues that are called out in those types. You're simply less at risk, but you're still at higher risk than the normal population.
My son has ASD and he was diagnosed by a rhumatologist as having hypermobility spectrum disorder. He sees a sports psychologist once a week to protect his joints. Thanks great information 😊
I call it "moving the pain around"...sit till that hurts, walk till that hurts, lie down till (yes) that hurts... Turns out I also have the corneal type (so I can't have laser surgery to correct my astigmatism because my corneas are too thin & my eyes are always dry👀) & the vascular type (which accounts for the dissection of my coronary artery🫀, which coincided with the 'unexplained' 6 weeks premature birth of my youngest ~ as well as why I will find random bruises in spots I know didn't get bumped). My skin is stretchy enough to be floppy (getting old doesn't help), but not enough to be useful like Elastigirl, darnit.
🤦🏼♂️🤦🏼♂️🤦🏼♂️ again another thing I’ve been called a liar for my whole life. Thank you Orion! But no matter how many of these I share still nobody wants to try to accept or understand me.
I have chronic fatigue and Fibromyalgia. I just have to push through. Nobody understands. H*ll, I put myself down. It's not right. I have no energy to keep everything in my life going, but it has to be done. It's horrible. Oh, and I have ASD and ADHD. Discovered at age 50 and 52. It's so frustrating. Nobody will help. Nobody gets it. Most nights i cry myself to sleep. 😢
It might be the most difficult thing you ever decide to do, but I'd recommend going to a health professional (GP) and telling them all of this. Be completely honest. Sometimes our brains work against us by believing that nobody will help, when we simply need to learn how to ask for it. Took me until my late twenties to realise that asking for help is a skill you can learn. As someone who has been through this, please don't give up on yourself
I get it. I am exhausted ALL the time, its awful 😢 I also often feel dizzy/spacey with brain fog. I have been to Drs many times but they can never seem to figure out whats wrong with me.
@@dimpsthealien333 yes the dizzy thing can be scary and can come on quite suddenly. If I'm at home I lie down and go to sleep but its very difficult when I'm at work and trying to fight through it. Once I came over all spacey when I was driving and I drove off the road and damaged my car! 🫣
I just came back from Walmart and I am so exhausted.... both mentally and physically tired. I wish I could just do normal basic human functions without being constantly fatigued, overwhelmed or out of energy...
@@brandongalland4633 well, yeah, it's not a great environment at all. That's why I avoid it like the plague. But for those of us with fatiguing health issues, we're just lamenting the fact it seems we can't do the most basic of tasks without being exhausted by it.
I typo'd Walmart as walkmart earlier to my partner and we both laughed bc it's true. We both have health conditions and getting back from the store is always cold stuff away and then not being vertical for a bit. I always feel a little bad bc by the time I get to the cashier I'm drained from fighting off dozziness or knee/hip pain, so I end up just standing there half spaced out and silent. 😅
FINALLY SOMEONE IS TALKING ABOUT THIS! My psychiatrist doesn't believe me when I talk about it to him : ( It's something rather new in the community and most doctors don't know enough about it apparently
Perhaps show him some links to videos that explain these conditions from other specialists? Would this help, do you think? Even this video from Orion! If not then if it's possible, maybe seek a different psychiatrist. No point banging your head against the wall if they're not listening to you.
Thanks for these videos Orion. I thought that I had just been dealing with fibromyalgia (chronic pain/inflammation/mobility problems) and depression. Yours along with a few other people in the TH-cam community have helped me realize I’m a 41-year-old undiagnosed autistic. I’ve never felt so understood before I found videos like yours. Keep up the amazing work, mate!
I can relate... in my late teens the pain became so bad, I couldn't even go to school... an unusally creative GP back then suggested taking up Tai Chi Chuan... I was pain free in 3 years and even to up more intense martial arts... so lots' of neurologically stimulating exercise that doesn't overstrain joints and teaches you to consciously use and relax all parts of your body...
Thank you for talking about EDS! I wish I'd known about this before I turned 40. It's especially tricky because you've grown up in your body and don't know how other peoples bodies feel. You simply don't know it's NOT normal to experience pain so often. And all the gaslighting if you choose to talk about it, because, well, you're autistic that doesn't help either.
@@brandongalland4633 Then why are non-autistic people usually so enthusiastic to dismiss or ignore the stated concerns from neurodivergent people? They sure seem confident that we're making things up or making a mountain out of an ignorable pebble. Gotta stop being autistic and be normal by stopping talking about the pain and discomfort.
@@ThalanoxIt doesn't help too that EDS affects so many things and presents with so many issues, that you end up looking like a hypochondriac. And with the ASD, you've already convinced yourself it's no big deal and you shouldn't say anything until it's finally so big that you feel you need to, but you present it to the doc like you're sorry for even bringing it up and so they think it's just a passing thing.... Sigh.
Strange connection you wouldn't think they could be connected. My son is autistic and has Ankylosing Spondylitis. After, watching your video I looked up AS and they think it could be connected. His joints fuse together, he is on special medication. Spa, sauna, pool are very good
Thank you for bringing this up Orion - I didn't find out I had hEDS till I was nearly 50 and it was key to realizing I'm probably autistic as well as the disability community was mentioning the comorbidity with neurodevelopmental conditions. lots of rabbit holes later - hello autistic community 🥰
I also recently learned that EDS made me more prone to sleep apnea. I just started using a CPAP two nights ago. I wish I knew when I was much younger. It’s nice to go to bed without a sense of fear. Because my symptoms began when I was a kid in the 1980s, I did not hesitate to request that my 10 year old get assessed. Sleep apnea can lead to hypertension, heart disease, diabetes, and stroke. My dad had a stroke due to undiagnosed sleep apnea. This is serious. I was so used to the pain and fatigue that I thought it was what everyone lived with. When I cut dairy out of my diet at age 14, my quality of life was so improved that I thought that it was the solution to my problems. But several years later I benefited from cutting gluten. And on and on it went. Now that sleep apnea has been added to my diagnosis list, what is next I wonder. I did recently inquire about getting my overstretched belly from pregnancies operated on. I was denied because of my hypermobility syndrome, by 2 surgeons!
My son is 48 and found out he has EDS just 4 years ago! He has had issues for many years, but no doctor realized his issues were related. It is considered rare, but I have 5 friends with it. We both recently realized we are both high-masking autistic, I hope videos like yours help people learn that they have EDS earlier and can access support.
Thanks for tackling this subject. I've always been very flexible, but now as an adult I'm definitely feeling discomfort and getting injuries. I'm learning I need to slow down and strengthen my muscles to protect them. Great video! 👍
Balance activity!!! Rest breaks. Pacing. Argh....not one of my strengths. I am starting basic balance exercises and wow, have I ever needed to. I can see that these basic exercises are also great for core muscle strength. Basically, it's just standing on one leg, holding one leg out in front of you [I'm up to 30 seconds], then to the side, across to the other side, and then behind. Then walk toe to toe. It's harder than you would think. I am hoping to reduce my fall risk.
WARNING: Be very carefuI on a balance board and ask your doctor because our joints are not always in their correct places when we start to exercise. Our ribs can even dislocate/subluxate. Be very careful with warm therapy because you need your muscles to hold your Joints together because your ligaments and tendons do not hold your joints together. Cold can be better. Careful with massage because if you're too relaxed your joints can dislocate more easily. I just am so so so excited about this. My physical therapist (I go twice a week) is amazing. Please try to work with a PT who knows or will learn about EDS before starting to exercise more than just gentle movement that doesn't hurt!
I always preferred swimming for exercise because of the lower impact, but you still need to be careful. I've overextended my reach while doing a breaststroke and was out for two weeks recovering, which led to me not going back. :P Also, the annoyance of showering before/after swimming and having to do it where I felt people were always looking at me made it impossible for me to make it a routine. The key to any exercise you do: always, always, always pay attention to where your body is. Dedicate a large chunk of your awareness to proprioception. That is the main thing that helps avoid injury. And always warm up before engaging in activity. This means before a large bout of cleaning, before gardening, before walking to work, whatever. Take the time and warm up with light stretches and don't push so far that you overextend. This helps immensely.
I'd count Tai Chi in that list of low impact exercises. It has been very beneficial to me in many ways since I started doing it this spring, even if the spiritual aspect of it is lost on me. I do other forms of exercise, too, like standing workouts, pilates and nature walks.
Unfortunately, Tai Chi triggers me because of my poor short term memory. I have trouble remembering all the steps in class, fall behind, and feel "stupid". However, I LOVE QiGong, which I am better able to follow.
I was actually diagnosed with hEDS a number of years before I was diagnosed with Autism. I also have Mast Cell Activation Syndrome (MCAS) which you mentioned in the video is often co-morbid with EDS... I wanted to mention Post Orthostatic Tachycardia (POTS) is also a co-morbidity of EDS. I also wanted to give a word of warning to anyone dealing with hypermobility to be very careful with fluoroquinolone class antibiotics like Cipro, Levaquin etc. These drugs have a BLACK BOX warning for TENDON RUPTURE even for the general population, and are contraindicated in patients with connective tissue disorders like EDS. I was given Cipro before I was diagnosed with EDS and my symptoms became so much worse.
My daughter (she has hEDS, MCAS, POTS, autism, possible ADHD) just warned me about this the other day. I think it's VIP to get the message out there. She is convinced the hEDS comes from me, but asking my doc to refer me to someone to confirm this is impossible. He laughs, stating that I "just" have arthritis and I have to learn to live with it. 😢
I was diagnosed with fibromyalgia 25 years ago and AuDHD this year. The more I learn about ASD, the more I wonder if the fibro was misdiagnosed. I'm really surprised by the similarities between symptoms. Maybe you could do a video on that one day?
Print off the diagnosis criteria from the EDS website and take it to your doctor. I had to do this as no one where I live knows a thing about it and I was misdiagnosed with FND and given HRT for joint problems attributed to the menopause which I knew was wrong. The fatigue and pain were making me think I must have bone cancer but no it was hEDS which most GPs have never heard of much less know how to deal with.
I was diagnosed a number of years ago with joint hypermobility syndrome. Daily chronic fatigue and pain, and very likely to sprain my ankle yet again. By also having an anxiety disorder and autism impacting on pain and fatigue can make getting through the day a challenge. These are some of the things I use which may help someone else: exercise bike, stepper, balance board (also use a cushion as an alternative), therabands for resistance exercises, ice pack, hot water bottle, support braces, and a hand held massager. Balancing rest and activity is beneficial. I use alarms to remind me to take breaks due to hyperfocus. I do find it limiting on what I can do. I still have days of frustration which is why I always have a stash of chocolate. Thank you, from the UK.
Swimming is a good exercise for a great many people and I would add that the flotation effects of sea water containing salt gives you more choice too; the ocean better supports you so you have choice of how much effort you want to put in. In contrast with fresh water you might need to use greater effort to keep afloat. Another benefit of swimming is that cold water immersion seems to work as a nice mental health reset for many which can only be beneficial to the daily struggles of autism.
I also have mixed connective tissue disease which is hard to get diagnosed too it seems and it's definitely rough. Joint pain and fatigue, hyper mobility has been just a pain in general but these are good tips. Thank you for this video! Temperature therapy does help that's what I currently use.
How much collagen do you take in order to be noticeably better? I've tried taking some high-quality, chocolate-y flavored, but I still found it off-putting and it started turning me off to eating all food, unfortunately. Errrgg!
Using a good-quality rebounder (bungee cord, not springs) would cover the low joint impact AND improved proprioception. I am SO not an exercise person ... I will walk my dog pretty much solely because it's for HER benefit, not for my own (it probably IS of benefit to me, but that's a bonus, I guess!). If I had no dog, I just wouldn't go out. However, I got a rebounder during Covid and I've been surprised at how much I like it. I don't go mad ... just one 12 minute routine a day does me fine. Importantly, I do it immediately after getting back from the dog walk so it's not a big scary transition straight from being inactive. I can't handle 'cold starts', so tagging it on to the end of my dog's walk is perfect. I've found it's a mood-improver, too. The routine I follow is one here on TH-cam: th-cam.com/video/XHLdcEgB0co/w-d-xo.htmlsi=PZUO44RFTsAa6AJE . She mentions the proprioception and the low impact during the routine. Allegedly, it's as good as a 30-40 minute run, but I'll take that with a grain of salt!
Thank you for this post Orion. EDS has been so informative. We are held together by connective tissues. If these tissues are compromised we suffer greatly 😢😢😢. Every part of me deals with pain. This is such a rewarding study. Thank you so much
Wow how timely. I just saw my PCP to test me for EDS and POTS last Friday. I'm hypermobile without even trying to be flexible. It's been really painful and have chronic pain all over my body. I'm AuDHD with fibromyalgia and very clumsy. I thought there must be something more than fibromyalgia and here we are.
Great video! Even at the rate you are currently pumping out videos, they remain of the highest quality. Your daily postings are also very relatable, looking at the likes and numerous comments. Another good point of advice. Take time to do a good morning stretch before you get out of bed. You can identify new problem areas before you jump out of bed and find your knee isn't working or your back is out of sorts.
I don’t have hypermobility, but sure suffer from shoulder joint pain, always have but worsened being older. Any stress on my joints have always been sensitive. Resting, heating and ice pads, massages, all help. PT though can make it worse.
Did you know: the genetic mutation known as 15q11.2 bp1 to bp2 (AKA Burnside-Butler Syndrome) whilst has a number of co-morbid conditions and among them is a 23% chance of autism which becomes regressive in terms of previously learned skills. I like the content of this video. I found out I have ASD at the age of 52 (4yrs a go). I was a Taekwondo practitioner for 30+ years - I trained 3 hours per day, 6 days per week and on the 7th day I was guilty and so doubled my jogging g miles from 6 miles per day to 12. I was obsessed!! I even, I believe, became addicted to the pain to the point when I broke finger, toes, arms ribs, nose, and had concussions -I missed very few days of training. I developed a bit of a rep in those days for being a tough opponent in the dojang and in the ring, blood, breaks, aches and sprains became challenges not barriers. I’m 56 now and live in a micro camper full time (my tiny safe space) - my new obsession!
Hypermobility (probably EDS) has made my life a LOT harder than ADHD and autism have. I've been uncomfortable and in pain every single day of my adult life.
My 9th rib on the right side popped out last year, took an entire year to actually get treatment. It's horrendous, it just pops out whenever it wants. As someone who has walked on a broken leg, it is the worst pain I've ever experienced.
Thank you, Orion! I feel very redeemed... I really needed this today. The tips you gave are good ones, based on my experience. You are the biggest "Star" of them all! I am very appreciative of you and your channel. You are making a difference! I am very grateful! Take care!😀
Another great video, Orion. I'm glad I don't have this, my hardass job gives me fatigue, and muscle and joint pain enough on its own!!! I supplement daily: collagen complex, curcumine, piperine, vit D3 & K2, vit C, omega (3, 4, 6, 7 & 9) balanced complex, magnesium & calcium, keratin and xanthohumol... and painkillers. A lot of painkillers. Plethora of them. And I still hurt, but manageable so. But also, I'm studying hard at eve, to get a more suitable job for me... which is most important, in the end. 8 more months of agony to go, so just counting down days also helps. 😅
You are taking good stuff. I wish I could be consistent with at least a few of those. I pray you get a more suitable job. I wasted my life, damn near killed it, burning myself out to survive.
Just an anecdote: If you like to be in nature and had ticks before I think looking into tick born illnesses might be a good idea if you are struggling with painful joints or general chronic pain/fatigue/weird synptoms. But in general just never give up on trying to get to the root of your health issues. Trust your gut. If you feel like something's off then something's off!
Funny this video comes today when on a (obviously) stressy weekend away with the family. Only the trip was so stressful that immediately on arrival my back gave. Luckily under normal routines i seem to have the physical more under control with a routine of swimming and light muscle exercises. I also recently started Feldenkrais which seems to work particularly well with ASD as you learn to rewire your brain in connection with body movements.
I have hypermobile joints according to a orthopaedic surgeon. I never had a lot of pain until last year. Now I’m suffering. Doctor can’t figure it out. I don’t think it’s hEDS because it’s just come on (although I read that there is late onset EDS). Still trying to figure it out. It started with two falls at the beginning of the year. I was in the best shape of my life. Now I’m in pain off and on all day (lower body) one night it felt like I had nerve bombs randomly going off. My knee has started to randomly scream with pain. I have arthritis but it doesn’t explain all this. Sadly physio is not covered under our healthcare system. Swimming… yes that would be great if I weren’t autistic and didn’t mind swimming in freezing public pools (I have the autistic thing where I take a long time to acclimatize to the cold and even heated pools feel cold to me) with a$$holes swapping me. Nowhere to bike around here. Yoga? Are you kidding me? Strangers calling themselves massage therapists touching me? ^ I’m my own worst enemy 😢
It me. I was diagnosed with fibro at 18, but that's not what's been going on at all. It's hypermobility. My body falls apart routinely on a monthly basis. The menstrual cycle causes your connective tissues to loosen, which worsens HSD and EDS symptoms. That's not found in fibro, but it is in hypermobility. Not to mention cervicocranial instability, which has gotten worse over time and has resulted in a bulging disk and bilateral foraminal stenosis - the pinching of nerves between neck vertebrae. I'm 32, this problem isn't supposed to happen until you're in your 50's, but it can happen much, much earlier if you're hypermobile.
I just received my autism / ADHD diagnosis at 38. Last year I found out about hyper mobility in my oldest son who had severe joint pain he is ADHD. I was like oh my goodness there’s a term for that! Most of my life people would let me know that I was moving my body weird especially in my wrist, fingers and my feet. I also have joint pain. I really wish I would’ve had some of this info earlier on. Wow!
Really interesting video. I've been suspecting that I'm autistic for around 5 years now and have been living with chronic pain issues (mostly joints, legs and arm pain as well as frequent headaches) and have seen many doctors (diferent types of specialists) but none were able to give me an answer on why I had all of these issues. I'm also hypermobile but since it's more or less a family trait it's not reallu something anyone took into account I guess. I've been told that it's not fribromyalgia tho and I'm still in the dark curently. I'd like to get a diagnosis but I'm scared they won't take it too seriously since I'm older and men tend to get diagnosed way earlier. Will give it a try tho. Thank you for this video.
I am hypermobile(not EDS) and AuDHD, and struggled massively before diagnosis, now I understand when and how to stop and take care of all my needs. My struggle is I am strong and have a muscular build, gaining muscles easily, so I have trained and used my muscles wrongfully, causing harm and imbalance, and too little real restitution. Exercise types and shoes that damage more than helps. Foot formed bearfooted shoes, to use my body and balance. Switching cardio for weight lifting with compound exercises, to fix balance and reduce pain caused by using muscles and joints wrongly. And fixing pain caused by autistic burnout body posture and burnout movements. Cardio is too hard on joints and muscles, and my ADHD energy levels, strength training gives me energy and fixes pain issues. My cardio today is normal life movements, gardening, playing with my girl, dancing with my girl, hiking for nature therapy, bicycling as a family, playing ball as a family. Being active, but not for intense cardio training sessions. Real Restitution is key though, for health in all areas, exercise, diet, for brain health, for muscles for joints, for digestion.
😮 We always called it double jointed but, eye opener!! I used to always hyper extend my legs (I wasn't concious of it until a PE teacher pointed it out. Apparently, it effected my ability to be athletic?) But - I would bet this is what goes on with my kid's back! She doesn't slouch but, often arches her back & then complains of growing pains. Thanks!! I will call this to her attention. ❤
Good luck with your competition! I haven’t seen many information on autism in the bodybuilding/fitness community. I definitely would like to know how this experience can be for a person in the spectrum :)
Can you please tell the NDIS all this?! OMFG 🙀 I have tried SO HARD to get support. Fibro symptoms are horrific. I am on crutches, can hardly move, constant injuries due to functional dysfunctions - my physio calls me “Wreck-it Ralph”. I have asked for a wheelchair, have medical and OT support, to try and prevent further disability and actually participate in life. I have been told already that it will be refused 😢. Lack of understanding and knowledge of how these chronic conditions are prevalent with ASD is systemic. Every ASD person is different (um, it a spectrum after all!) more emphasis on the whole person approach for support is vital. I am voicing my needs, but it is hard to advocate for yourself when nobody is listening 😢. Medical/system ableism is so … disabling. 🤦🏼♀️
My toe fungus created chronic pain for years up my leg, no doctors wanted to believe me, but it's nearly grown out now and funnily enough my leg stops hurting
2014 had so much joint pain a fatigue. It was poor posture. Autism brought on poor posture. Fixing it is really really hard. Like as kid and well into adulthood I was toe walker as they call it. It's really I walk on balls of my feet. This cause all kind of joint problem. I sit awkwardly in chair, I find the position very soothing but it's really bad. 10 years ago I started working with a physio therapist. My soothing position caused my rib cage to shift causing chest pain and should impingement and muscle on my left side atrophied. Toe walking caused me knee pain. So Don't Ignore this.
Interesting not, I'm on collagen supplements too even though my diet include food rich in collagen I still need more. I didn't now that had a condition. Just following doctors advice.
HI Orion, this is an amazing video! I have had Chronic pain my entire life. I use a lot of the things you mentioned in my daily like to keep me going. Heat, ice and exercise. Also resting when I need to is very beneficial. Thanks for all you do!
I was diagnosed with Ankylosing Spondylitis (Non-Radiographic) chronic pain and fatigue well before my spectrum diagnosis. I honestly can't help but believe undiagnosed autism contributed to generating my disease presentation.
I was diagnosed with hypermobility even before I got my ASD diagnose. nearly every junction can bend over 10% more than average. it got better since I got my dog and go out for walks regularly.
First of all a series of diseases are more common in people with autism, adhd, dyslexia ie autoimmune disorders so psoriasis, psoriatic arthrities, lupus ms, asthma, thyroid disease, arthrities, fibromyalgia, ME , allergies incl food allergies etc
I think we have to be careful as autistic people when using heat and cold as therapy for muscle and joint pain. It is very easy for us to use heat for too long without realizing and to cause additional heat damage. We will not feal the pain of the prolonged heat. I have been told not to use heat for more than 20 minutes on any one location. This includes baths and showers and to wait a couple hours minimum before using heat again. Please don't unknowingly make your problems worse by cooking your body. My dad would lay on a hot heating pad for hours because it felt good at the time. Then he wouldnot understand why his pain was worse the next day after cooking himself for several hours.
I don’t have hyper mobility at all. The opposite actually. But I sure do have a lot of joint pain and fatigue all the time. It feels like how chronic fatigue is described. I am not bendy though, I’m opposite. My joints bend less than other people.
Anyone having low muscle tone as a child and teen? They were like mind your posture, they nagged every day. They meant it took no strength, but for me it did and was painful. They thought it was being lazy. I guess today a child would be given core exercise instead of yelling. I'm non EDS hypermobile, but it has only been discussed by a doc once and just saying some people are like that.
I have hEDS i also have MCAS, Vasile vaggal syncope and narcolepsy 1 with suspected Williams syndrome. (Asd and adhd ) Williams syndrome and hEDS are adjacent in the genome. 1 long leg of the 8 and 1 short leg of the 7.
I have had MCAS for 20 years. I also have pots, histamine intolerance, fibromyalgia, chronic fatigue, joint pain, food intolerances, anxiety, ADHD and possible autism. It's all connected. I ended up joining the Gupta Program which is brain retraining thru neuroplasticity. It fixed everything and improved my ADHD a ton! I actually was able to reduce my ADHD medication. I'm taking 1/3 of what I was taking. It has changed my life. I was so bad I was close to not being able to move without some sort of assistance. Now I can exercise again. The program helps you put into place a healthier lifestyle, set up routines and how to pace and rest. I know all these natural ways to calm down and relax now. It also helped majorly with emotional regulation as well. I never thought I'd get my health back.
@@sharonaumani8827 MCAS is Mast Cell Activation Syndrome. It's a nervous system disorder. Mast Cells are in our connective tissue, they line the mouth, throat, stomach, intestines, under your skin. They are the cells that protect the body from the environment.
Finally diagnosed with AuDHD in my 50s and diagnosed with hypermobility and likely due to EDS. My ankle's hurting again, my hip was out all yesterday so I had to walk around all day as much as I could with my hip out. I'm constantly getting fatigue and feel like I have a flu/cold constantly for no reason. Here in the US nobody really diagnosis EDS unless you have to pay thousands (they don't take insurance).
This is 100% my daughter. She's had chronic joint pain since she was 1 and we could never figure out what caused it. Docs always say it's growing pains 🫤. Growing pains everyday seem excessive
@isabellesmama10 I was told by an orthopedic surgeon that I had growing pains when I was 11. I'm 34 now, and I've never grown out of that pain in my knees. It also started to spread all over my body to the point where I can't remember what life felt like without pain 24/7. Keep advocating for her, please, and teach her how to do it for herself. That's the best piece of unsolicited advice I can give you. At least she has your support and understanding, and that alone means a lot 💚
Actually I think I am so lucky after reading all these replies hearing about all the posture problems people have. My grandmother pushed us to straighten up from an early age and consequently myself and my siblings have never had back or joint pain, no arthritis either and I am 70 I do have a financial burden though, because of it most clothing never sits well on me, especialy suits, there's always a ridge of material in my back so I have to get most of my cloths modified. Apparently most people have bad posture and walk with a stoop, so they adjust the cut of the clothing to suit. I do have some pritty severe pain though as I mentioned earlier sensory and information overload can cause pain to encourage me to move somewhere peaceful
Thank You Orion for your infomative videos. I'm a late-diagnosed autistic woman with autistic twins. Is there a support zoom group that meets? I suffer from severe chronic neuromuscular pain due to a trauma in 2020.
I have a very hard time in pools, and bath tubs. As soon as I submerge up to my upper abdomen, my lungs feeling like they're being squeezed and I can't breathe. For some reason, this sensation isn't nearly as prevalent when I go in the river by my house, so maybe it's the stand-still water of tubs and pools that creates the internal pressure. I've never met anyone else who this happens to.
Both me and my daughter, both autistic, were born with hypomobility - instead of hypermobility. Both of my ring fingers are missing the ability to bend the top joints, and my daughter's legs can't turn outward (like for a ballerina's plie). We've tried yoga and ballet, nothing helps. When my daughter was younger, like clockwork she would have about one week a month her entire childhood pre-puberty where her equilibrium was way off and she would constantly trip and fall. I've otherwise been pretty agile my whole life, but I've never liked sports just because it meant people.
I'm not hypermobile, however I was born with a swan neck deformity on both index fingers that I inherited from my mother, which I hear is strongly associated with EDS. I'm fortunate enough to live in an era where typing is done more than writing with pen and paper.
I freaked my wife out when we got together. I was clipping my toenails in the bathroom with my leg laying on the counter, and I'm hunched over clipping away. She sees me and says,"Why can't I see your other leg?" I presented my foot at chest height, and she yelled, "What the F@&%!? Fat people aren't supposed to bend like that!" I never thought about it, since my mom and sister also can bend like that. Another time I did a head stand on my shoulders with my head twisted out from under my body. She thought I was going to break my neck. And our daughter and I grossed her out by flexing our fingers the opposite direction. Again, I didn't know everyone couldn't lay their hand flat and raise their fingers off the table a few inches. I thought it was normal range of motion.
I wish I could find a doctor that has heard about this link. I am so tired of being blown off by doctors. I've had chronic pain and joint problems since I was a young child and had all kinds of misdiagnosis. With 5 minutes of online reading I can clearly see my symptoms sound a lot like a connective tissue disorder but in 50 years not a single doctor I've seen has read about it?
I have hypermobile knee joints that result in regular (though thankfully not frequent) extreme dislocations. I have a friend who has a similar condition, but she is able to pop her joints back, in while I am left utterly pinned to the floor until a medical professional resets my knee. The pain is like nothing I have ever experienced, so bad I occasionally have mildly bad flashbacks to the various dislocation events.
My party trick as a child was to lie on my tummy arching backwards then touch the back of my head with my feet. Friends used to respond like I was an Olympic medalist 😂 Have to be careful now in my 60's because joints/ligaments seem to to sometimes get locked in weird positions. Mostly fingers and toes so far, but occasionally knees and elbows. Crafting can be quite painful some days and bushwalking has had some concerning moments recently. Had put it down to aging on a supple active body, didn't know of the connection to AuDHD. More questions for my doc next week 😂
I'm level 2 autistic. I was diagnosed last year in November. I'm 53 years old. I was diagnosed with Fibromyalgia and seronegative arthritis 10 years ago. And osteoarthritis in my hips and right knee 2 years go. I'm just wondering if I'm missed diagnosed... I'm forever sore in all my joints, and I'm always so tired. At the moment, all my joints are on FIRE 🔥 and hurts so much 😢 I've been wanting to do water pilates for a long time but to do it in a warm heated pool. Thing is, it's an uncommon to have a heated public pool in Cairns. And there's only one pool that is heated. However, they're not offering water pilates there at all (Gordonvale), and it's some distance away from me. There's a pool closer by, but i don't enjoy the cold water pilates, particularly in winter as It hurts and hinders, and for me, it's freezing cold, particularly under the sail shade. 😢 My bathtub is hard for me to get into and out of. So, for me, showering in really hot water helps. I'm contemplating in buying a pump up heated spa. It will be easier for me to get out of and a nice hot soak. In saying all this, I need to make an appointment with my GP and discuss this. Thank you! You may have solved an unknown symptom in me. ❤❤❤
''doing nothing til it hurts or doing something til it hurts'' .... direct hit on my life! 🎯
Me too. Honestly, better to do something til it hurts than nothing til it hurts. Recovery from something is hard. Recovery from nothing is basically impossible.
I'm right there with you
I'm an orthotist, I see lots of autistic kids and they almost always have hypermobile joints. This is particularly apparent in the foot and ankle, lots of flat feet, knock knees and instability. Because of the misalignment there is a huge cost in energy expenditure when doing physical activity.
As well as being autistic, I've had a bunch of auto-immune problems for over 30 years and have seen many, many healthcare professionals over that time. In my experience, orthotists are the most helpful, impactful and empathetic. (The rest can go and take a running jump.) Keep doing what you do - it's really valuable and very much appreciated.
I'm autistic. Diagnosed at 51. I was always tired, but was forced to do PE anyway. Most of my childhood, I had one or both ankles sprained. I wish someone would have looked into it. I'm sure a lot of people think you're awesome. 😃
I had knock knees and flat feet. Had to wear special shoes.
@dimpsthealien333 I had flat feet too. Probably still do. It might be why my ankles collapse frequently. I used to have those custom arch supports in my shoes. I still got sprains though.
Wow, had to reach the age of 50 and suffer from severe pain in my knee for 2 years now, to learn this from someone on the internet. All doctors before made me feel like it was MY fault to have flat feet. Well, they probably do not know themselves.
By the way: I have a diagnosed kid and wanted to know about myself, but after a 2-year waiting period my „assessment“ was interrupted, cause in a brief first interview the psychologist thought I was too social to be autistic. 2024 and they still don‘t get it. 😂
I cried watching this because this is me! I've been suffering from chronic pain and fatigue since 2018 where it affects my mobility. I was diagnosed with Fibromyalgia but I have always felt there is something more. I have been seeing a Pain Psychologist at the hospital for over a year. Recently, she discussed with me that she highly suspects I am on the spectrum and how I have been highly masking things in all aspects of my life. After seeing my GP about it, I scored 44 out of 50 on the AQ50 and a referral has been made to seek an autism assessment. I am 39 years old. My daughter who is 4 years old is diagnosed with autism. Thankyou so much for doing this video and the work that you do. It really means a lot because it can feel isolating and that there is no support. Your videos really help 👍
❤ thank you for sharing. I’m going through similar process.
Yes, very recognizable.
Chronic pain in muscles and joints, looks like fibromyalgia but isn’t that.
Irritable bowel syndrome
Sleep disorders, mostly due to the above problems.
Chronic fatigue due to the above problems.
Keep doing exercises like walking, cycling and but don’t overdo it helps. ‘Niksen’ a few times a day helps too.
Eat healthy, as less ultra processed foods as possible (better for your bowels and if they are functioning better, your whole body functions better).
I’m 63 and discovered just 6 months ago that I’m autistic. Now all the unsolved puzzle pieces of my life fall in place.
I got misdiagnosed with fibromyalgia by a rheumatologist even though I already had a hypermobility syndrome diagnosis from another Australian rheumatologist. The guy who thought it was fibromyalgia spent about 10 minutes with me. He was an idiot. I shouldn't have paid him.
@@australiafair5926same as myself UK but they say it's still fybromyalgia from the heds as the autism causes central sensitisation threw spd
@@Truerealism747 When I need a doctor's note for the government my GP puts fibro on it. Even though I don't really identify with the diagnosis it is a handy label.
@@australiafair5926 yes it does group to much does your pain in body feals like migraine as mine does daily see Dr silvers work he says migraine can present without headache
Thanks for doing this. There definitely needs to be an increased awareness of the link between hyper mobility, EDS, MCAS and Autism/ADHD. They so often ride together, and yet nobody realizes
Yes thats me diagnosed late 44 causing fybromyalgia or how much is autism burnout
Everyone with hypermobility: you really need to protect your neck with good posture. Neck issues from hyper cause so many downstream symptoms, you really want to avoid it if at all possible!!!
finding a method with a professional to replace the first vertebra: called Atlas, helped me tremendously!!!!! For many people it is misplaced slightly and impacts the whole structure
My GP never mentioned that my constant fatigue nor how easily I bruise, is/could be a part of my hyper-mobility before. This is the first time that that is a possible explanation, that I've ever had for those two things.
Neither my GP or psych ever let me know it is common for those with EDS to be autistic, or vice versa, before, either.
autism OR ADHD! or both too...
Don’t forget that hEDS has a cardiovascular type. It often affects the vessels in the head and can be the cause of brain bleeds. I’m an autistic hyper mobile mom whose autistic son has this form. It’s inherited from my mom’s side of the family. He had a brain bleed this summer and I was able to point his neurologist in the right direction because I know our family history. If you’re hyper mobile and often get headaches or migraines, get yourself checked out.
@@katieyoung7271 cardiovascular eds is different from heds
@@racheloramIt is, but I feel like there is a lot of overlap. Many people in my family have had both, and have also lived with POTS. I think it’s safe to say that there is a genetic connection.
As mentioned in the video, there is 100% a connection: all EDS types have a problem with connective tissue. Connective tissue is found everywhere in the body and affects multiple systems. Just because you don't have the specific genetic mutation for vascular, kyphoscoliotic, etc., and you've thus been diagnosed with hEDS, that doesn't mean you are off the hook when it comes to issues that are called out in those types. You're simply less at risk, but you're still at higher risk than the normal population.
Thank you for writing that. I didn't know.
My son has ASD and he was diagnosed by a rhumatologist as having hypermobility spectrum disorder. He sees a sports psychologist once a week to protect his joints. Thanks great information 😊
I call it "moving the pain around"...sit till that hurts, walk till that hurts, lie down till (yes) that hurts...
Turns out I also have the corneal type (so I can't have laser surgery to correct my astigmatism because my corneas are too thin & my eyes are always dry👀)
& the vascular type (which accounts for the dissection of my coronary artery🫀, which coincided with the 'unexplained' 6 weeks premature birth of my youngest ~ as well as why I will find random bruises in spots I know didn't get bumped).
My skin is stretchy enough to be floppy (getting old doesn't help), but not enough to be useful like Elastigirl, darnit.
🤦🏼♂️🤦🏼♂️🤦🏼♂️ again another thing I’ve been called a liar for my whole life. Thank you Orion! But no matter how many of these I share still nobody wants to try to accept or understand me.
I have chronic fatigue and Fibromyalgia. I just have to push through. Nobody understands. H*ll, I put myself down. It's not right. I have no energy to keep everything in my life going, but it has to be done. It's horrible. Oh, and I have ASD and ADHD. Discovered at age 50 and 52. It's so frustrating. Nobody will help. Nobody gets it. Most nights i cry myself to sleep. 😢
It might be the most difficult thing you ever decide to do, but I'd recommend going to a health professional (GP) and telling them all of this. Be completely honest. Sometimes our brains work against us by believing that nobody will help, when we simply need to learn how to ask for it. Took me until my late twenties to realise that asking for help is a skill you can learn. As someone who has been through this, please don't give up on yourself
I get it. I am exhausted ALL the time, its awful 😢 I also often feel dizzy/spacey with brain fog. I have been to Drs many times but they can never seem to figure out whats wrong with me.
@krissyk9767 aww hun I'm sorry. I get the dizzy feelings. It's scary too. Be safe.
@@dimpsthealien333 yes the dizzy thing can be scary and can come on quite suddenly. If I'm at home I lie down and go to sleep but its very difficult when I'm at work and trying to fight through it. Once I came over all spacey when I was driving and I drove off the road and damaged my car! 🫣
@krissyk9767 oh no! That's terrible. It could have gone way worse. So glad you are OK. Be safe!
I just came back from Walmart and I am so exhausted.... both mentally and physically tired. I wish I could just do normal basic human functions without being constantly fatigued, overwhelmed or out of energy...
You need to go out for a walk or something. I’ll never give sympathy to someone who’s tired from going to walmart
@@brandongalland4633 I hope that was sarcasm. Come on, now.
@@nancysmith8626 If I’m to take my words back, it would be because Walmart is the closest grocery store to a zoo.
@@brandongalland4633 well, yeah, it's not a great environment at all. That's why I avoid it like the plague. But for those of us with fatiguing health issues, we're just lamenting the fact it seems we can't do the most basic of tasks without being exhausted by it.
I typo'd Walmart as walkmart earlier to my partner and we both laughed bc it's true. We both have health conditions and getting back from the store is always cold stuff away and then not being vertical for a bit. I always feel a little bad bc by the time I get to the cashier I'm drained from fighting off dozziness or knee/hip pain, so I end up just standing there half spaced out and silent. 😅
FINALLY SOMEONE IS TALKING ABOUT THIS!
My psychiatrist doesn't believe me when I talk about it to him : ( It's something rather new in the community and most doctors don't know enough about it apparently
Perhaps show him some links to videos that explain these conditions from other specialists? Would this help, do you think? Even this video from Orion! If not then if it's possible, maybe seek a different psychiatrist. No point banging your head against the wall if they're not listening to you.
Thanks for these videos Orion. I thought that I had just been dealing with fibromyalgia (chronic pain/inflammation/mobility problems) and depression. Yours along with a few other people in the TH-cam community have helped me realize I’m a 41-year-old undiagnosed autistic. I’ve never felt so understood before I found videos like yours. Keep up the amazing work, mate!
I can relate... in my late teens the pain became so bad, I couldn't even go to school... an unusally creative GP back then suggested taking up Tai Chi Chuan... I was pain free in 3 years and even to up more intense martial arts... so lots' of neurologically stimulating exercise that doesn't overstrain joints and teaches you to consciously use and relax all parts of your body...
As a consequence, Chinese and Indian martial arts and their medical systems became one of my special interests...
Thank you for talking about EDS! I wish I'd known about this before I turned 40. It's especially tricky because you've grown up in your body and don't know how other peoples bodies feel. You simply don't know it's NOT normal to experience pain so often. And all the gaslighting if you choose to talk about it, because, well, you're autistic that doesn't help either.
No one knows how other people bodies feel. That’s the point.
@@brandongalland4633 Then why are non-autistic people usually so enthusiastic to dismiss or ignore the stated concerns from neurodivergent people? They sure seem confident that we're making things up or making a mountain out of an ignorable pebble. Gotta stop being autistic and be normal by stopping talking about the pain and discomfort.
@@ThalanoxIt doesn't help too that EDS affects so many things and presents with so many issues, that you end up looking like a hypochondriac. And with the ASD, you've already convinced yourself it's no big deal and you shouldn't say anything until it's finally so big that you feel you need to, but you present it to the doc like you're sorry for even bringing it up and so they think it's just a passing thing.... Sigh.
Strange connection you wouldn't think they could be connected. My son is autistic and has Ankylosing Spondylitis. After, watching your video I looked up AS and they think it could be connected. His joints fuse together, he is on special medication. Spa, sauna, pool are very good
This is the first time I hear of autism being linked to joint pain, but not at all surprised about fatigue!
Aw yes, finally! Joint pain and chronic fatigue!! Thank you, Orion. God bless you 🙏🏻💙
Seams most of us have it is yours daily
Thank you for bringing this up Orion - I didn't find out I had hEDS till I was nearly 50 and it was key to realizing I'm probably autistic as well as the disability community was mentioning the comorbidity with neurodevelopmental conditions. lots of rabbit holes later - hello autistic community 🥰
I also recently learned that EDS made me more prone to sleep apnea. I just started using a CPAP two nights ago. I wish I knew when I was much younger. It’s nice to go to bed without a sense of fear. Because my symptoms began when I was a kid in the 1980s, I did not hesitate to request that my 10 year old get assessed. Sleep apnea can lead to hypertension, heart disease, diabetes, and stroke. My dad had a stroke due to undiagnosed sleep apnea. This is serious.
I was so used to the pain and fatigue that I thought it was what everyone lived with. When I cut dairy out of my diet at age 14, my quality of life was so improved that I thought that it was the solution to my problems. But several years later I benefited from cutting gluten. And on and on it went. Now that sleep apnea has been added to my diagnosis list, what is next I wonder.
I did recently inquire about getting my overstretched belly from pregnancies operated on. I was denied because of my hypermobility syndrome, by 2 surgeons!
My son is 48 and found out he has EDS just 4 years ago! He has had issues for many years, but no doctor realized his issues were related. It is considered rare, but I have 5 friends with it. We both recently realized we are both high-masking autistic,
I hope videos like yours help people learn that they have EDS earlier and can access support.
Thanks for tackling this subject. I've always been very flexible, but now as an adult I'm definitely feeling discomfort and getting injuries. I'm learning I need to slow down and strengthen my muscles to protect them. Great video! 👍
Balance activity!!! Rest breaks. Pacing. Argh....not one of my strengths.
I am starting basic balance exercises and wow, have I ever needed to. I can see that these basic exercises are also great for core muscle strength. Basically, it's just standing on one leg, holding one leg out in front of you [I'm up to 30 seconds], then to the side, across to the other side, and then behind. Then walk toe to toe. It's harder than you would think. I am hoping to reduce my fall risk.
WARNING: Be very carefuI on a balance board and ask your doctor because our joints are not always in their correct places when we start to exercise. Our ribs can even dislocate/subluxate. Be very careful with warm therapy because you need your muscles to hold your Joints together because your ligaments and tendons do not hold your joints together. Cold can be better. Careful with massage because if you're too relaxed your joints can dislocate more easily. I just am so so so excited about this. My physical therapist (I go twice a week) is amazing. Please try to work with a PT who knows or will learn about EDS before starting to exercise more than just gentle movement that doesn't hurt!
I always preferred swimming for exercise because of the lower impact, but you still need to be careful. I've overextended my reach while doing a breaststroke and was out for two weeks recovering, which led to me not going back. :P Also, the annoyance of showering before/after swimming and having to do it where I felt people were always looking at me made it impossible for me to make it a routine.
The key to any exercise you do: always, always, always pay attention to where your body is. Dedicate a large chunk of your awareness to proprioception. That is the main thing that helps avoid injury. And always warm up before engaging in activity. This means before a large bout of cleaning, before gardening, before walking to work, whatever. Take the time and warm up with light stretches and don't push so far that you overextend. This helps immensely.
I suspect that I have HEDS, but my job delivering packages rarely lets me rest 😅. My job is destroying my joints, but hey, the bills are payed....
I'd count Tai Chi in that list of low impact exercises. It has been very beneficial to me in many ways since I started doing it this spring, even if the spiritual aspect of it is lost on me. I do other forms of exercise, too, like standing workouts, pilates and nature walks.
Unfortunately, Tai Chi triggers me because of my poor short term memory. I have trouble remembering all the steps in class, fall behind, and feel "stupid". However, I LOVE QiGong, which I am better able to follow.
Shame the ndis won’t cover any activities like this for us
I was actually diagnosed with hEDS a number of years before I was diagnosed with Autism. I also have Mast Cell Activation Syndrome (MCAS) which you mentioned in the video is often co-morbid with EDS... I wanted to mention Post Orthostatic Tachycardia (POTS) is also a co-morbidity of EDS. I also wanted to give a word of warning to anyone dealing with hypermobility to be very careful with fluoroquinolone class antibiotics like Cipro, Levaquin etc. These drugs have a BLACK BOX warning for TENDON RUPTURE even for the general population, and are contraindicated in patients with connective tissue disorders like EDS. I was given Cipro before I was diagnosed with EDS and my symptoms became so much worse.
My daughter (she has hEDS, MCAS, POTS, autism, possible ADHD) just warned me about this the other day.
I think it's VIP to get the message out there.
She is convinced the hEDS comes from me, but asking my doc to refer me to someone to confirm this is impossible. He laughs, stating that I "just" have arthritis and I have to learn to live with it. 😢
I was diagnosed with fibromyalgia 25 years ago and AuDHD this year. The more I learn about ASD, the more I wonder if the fibro was misdiagnosed. I'm really surprised by the similarities between symptoms. Maybe you could do a video on that one day?
Print off the diagnosis criteria from the EDS website and take it to your doctor. I had to do this as no one where I live knows a thing about it and I was misdiagnosed with FND and given HRT for joint problems attributed to the menopause which I knew was wrong. The fatigue and pain were making me think I must have bone cancer but no it was hEDS which most GPs have never heard of much less know how to deal with.
I was diagnosed a number of years ago with joint hypermobility syndrome. Daily chronic fatigue and pain, and very likely to sprain my ankle yet again. By also having an anxiety disorder and autism impacting on pain and fatigue can make getting through the day a challenge. These are some of the things I use which may help someone else: exercise bike, stepper, balance board (also use a cushion as an alternative), therabands for resistance exercises, ice pack, hot water bottle, support braces, and a hand held massager. Balancing rest and activity is beneficial. I use alarms to remind me to take breaks due to hyperfocus. I do find it limiting on what I can do. I still have days of frustration which is why I always have a stash of chocolate. Thank you, from the UK.
Swimming is a good exercise for a great many people and I would add that the flotation effects of sea water containing salt gives you more choice too; the ocean better supports you so you have choice of how much effort you want to put in. In contrast with fresh water you might need to use greater effort to keep afloat. Another benefit of swimming is that cold water immersion seems to work as a nice mental health reset for many which can only be beneficial to the daily struggles of autism.
I also have mixed connective tissue disease which is hard to get diagnosed too it seems and it's definitely rough. Joint pain and fatigue, hyper mobility has been just a pain in general but these are good tips. Thank you for this video! Temperature therapy does help that's what I currently use.
I finally had to start taking collagen to help with this issue. Made a massive difference for me and WOW do I notice if I stop taking it.
How much collagen do you take in order to be noticeably better? I've tried taking some high-quality, chocolate-y flavored, but I still found it off-putting and it started turning me off to eating all food, unfortunately. Errrgg!
I have to say from personal experience there's no relief and autism. We just exist
Have been trying to get assessed for this for the last few weeks, it's like trying to get an adhd/asd assessment all over again.
Using a good-quality rebounder (bungee cord, not springs) would cover the low joint impact AND improved proprioception.
I am SO not an exercise person ... I will walk my dog pretty much solely because it's for HER benefit, not for my own (it probably IS of benefit to me, but that's a bonus, I guess!). If I had no dog, I just wouldn't go out. However, I got a rebounder during Covid and I've been surprised at how much I like it. I don't go mad ... just one 12 minute routine a day does me fine. Importantly, I do it immediately after getting back from the dog walk so it's not a big scary transition straight from being inactive. I can't handle 'cold starts', so tagging it on to the end of my dog's walk is perfect. I've found it's a mood-improver, too. The routine I follow is one here on TH-cam: th-cam.com/video/XHLdcEgB0co/w-d-xo.htmlsi=PZUO44RFTsAa6AJE . She mentions the proprioception and the low impact during the routine. Allegedly, it's as good as a 30-40 minute run, but I'll take that with a grain of salt!
By the way, I am ASD and hypermobility diagnosed.
Thank you for this post Orion. EDS has been so informative. We are held together by connective tissues. If these tissues are compromised we suffer greatly 😢😢😢. Every part of me deals with pain. This is such a rewarding study. Thank you so much
Wow how timely. I just saw my PCP to test me for EDS and POTS last Friday. I'm hypermobile without even trying to be flexible. It's been really painful and have chronic pain all over my body. I'm AuDHD with fibromyalgia and very clumsy. I thought there must be something more than fibromyalgia and here we are.
I have all you symptoms decdes se Dr lenz channel
Great video! Even at the rate you are currently pumping out videos, they remain of the highest quality. Your daily postings are also very relatable, looking at the likes and numerous comments. Another good point of advice. Take time to do a good morning stretch before you get out of bed. You can identify new problem areas before you jump out of bed and find your knee isn't working or your back is out of sorts.
I don’t have hypermobility, but sure suffer from shoulder joint pain, always have but worsened being older. Any stress on my joints have always been sensitive. Resting, heating and ice pads, massages, all help. PT though can make it worse.
Did you know: the genetic mutation known as 15q11.2 bp1 to bp2 (AKA Burnside-Butler Syndrome) whilst has a number of co-morbid conditions and among them is a 23% chance of autism which becomes regressive in terms of previously learned skills.
I like the content of this video. I found out I have ASD at the age of 52 (4yrs a go). I was a Taekwondo practitioner for 30+ years - I trained 3 hours per day, 6 days per week and on the 7th day I was guilty and so doubled my jogging g miles from 6 miles per day to 12. I was obsessed!! I even, I believe, became addicted to the pain to the point when I broke finger, toes, arms ribs, nose, and had concussions -I missed very few days of training. I developed a bit of a rep in those days for being a tough opponent in the dojang and in the ring, blood, breaks, aches and sprains became challenges not barriers.
I’m 56 now and live in a micro camper full time (my tiny safe space) - my new obsession!
Hypermobility (probably EDS) has made my life a LOT harder than ADHD and autism have. I've been uncomfortable and in pain every single day of my adult life.
The autism adhd is causing the central sensitisation threw spd though
My 9th rib on the right side popped out last year, took an entire year to actually get treatment. It's horrendous, it just pops out whenever it wants. As someone who has walked on a broken leg, it is the worst pain I've ever experienced.
I'm currently going through this chronic pain and fatigue. I am scheduled for evaluations by several specialists. glad you are covering this.
Thank you, Orion! I feel very redeemed... I really needed this today. The tips you gave are good ones, based on my experience. You are the biggest "Star" of them all! I am very appreciative of you and your channel. You are making a difference! I am very grateful! Take care!😀
Today I woke up in pain as per usual but more than some days. I then see your video!... The timing. Thanks
Another great video, Orion. I'm glad I don't have this, my hardass job gives me fatigue, and muscle and joint pain enough on its own!!! I supplement daily: collagen complex, curcumine, piperine, vit D3 & K2, vit C, omega (3, 4, 6, 7 & 9) balanced complex, magnesium & calcium, keratin and xanthohumol... and painkillers. A lot of painkillers. Plethora of them. And I still hurt, but manageable so. But also, I'm studying hard at eve, to get a more suitable job for me... which is most important, in the end. 8 more months of agony to go, so just counting down days also helps. 😅
You are taking good stuff. I wish I could be consistent with at least a few of those. I pray you get a more suitable job. I wasted my life, damn near killed it, burning myself out to survive.
Just an anecdote: If you like to be in nature and had ticks before I think looking into tick born illnesses might be a good idea if you are struggling with painful joints or general chronic pain/fatigue/weird synptoms.
But in general just never give up on trying to get to the root of your health issues. Trust your gut. If you feel like something's off then something's off!
Funny this video comes today when on a (obviously) stressy weekend away with the family. Only the trip was so stressful that immediately on arrival my back gave. Luckily under normal routines i seem to have the physical more under control with a routine of swimming and light muscle exercises. I also recently started Feldenkrais which seems to work particularly well with ASD as you learn to rewire your brain in connection with body movements.
I have hypermobile joints according to a orthopaedic surgeon. I never had a lot of pain until last year. Now I’m suffering. Doctor can’t figure it out. I don’t think it’s hEDS because it’s just come on (although I read that there is late onset EDS). Still trying to figure it out.
It started with two falls at the beginning of the year. I was in the best shape of my life. Now I’m in pain off and on all day (lower body) one night it felt like I had nerve bombs randomly going off. My knee has started to randomly scream with pain.
I have arthritis but it doesn’t explain all this.
Sadly physio is not covered under our healthcare system.
Swimming… yes that would be great if I weren’t autistic and didn’t mind swimming in freezing public pools (I have the autistic thing where I take a long time to acclimatize to the cold and even heated pools feel cold to me) with a$$holes swapping me. Nowhere to bike around here. Yoga? Are you kidding me? Strangers calling themselves massage therapists touching me?
^ I’m my own worst enemy 😢
It me. I was diagnosed with fibro at 18, but that's not what's been going on at all. It's hypermobility. My body falls apart routinely on a monthly basis. The menstrual cycle causes your connective tissues to loosen, which worsens HSD and EDS symptoms. That's not found in fibro, but it is in hypermobility. Not to mention cervicocranial instability, which has gotten worse over time and has resulted in a bulging disk and bilateral foraminal stenosis - the pinching of nerves between neck vertebrae. I'm 32, this problem isn't supposed to happen until you're in your 50's, but it can happen much, much earlier if you're hypermobile.
I just received my autism / ADHD diagnosis at 38. Last year I found out about hyper mobility in my oldest son who had severe joint pain he is ADHD. I was like oh my goodness there’s a term for that! Most of my life people would let me know that I was moving my body weird especially in my wrist, fingers and my feet. I also have joint pain. I really wish I would’ve had some of this info earlier on. Wow!
Thank you for this video! I feel so seen when I listen to your content. I really wish we could get everyone in our lives to watch your channel!
THANK YOU!
This might help inform my young person's healthcare providers
Really interesting video. I've been suspecting that I'm autistic for around 5 years now and have been living with chronic pain issues (mostly joints, legs and arm pain as well as frequent headaches) and have seen many doctors (diferent types of specialists) but none were able to give me an answer on why I had all of these issues. I'm also hypermobile but since it's more or less a family trait it's not reallu something anyone took into account I guess. I've been told that it's not fribromyalgia tho and I'm still in the dark curently. I'd like to get a diagnosis but I'm scared they won't take it too seriously since I'm older and men tend to get diagnosed way earlier. Will give it a try tho. Thank you for this video.
My Autismo loves you, thx m8!!!
Am I still a Star Of Orion even though I wasn't brave enough to send a photo?
I’ve suspected I had this for a long time and have CFS but didn’t know there was a link to Autism. Very interesting to know.
Same here with fybromyalgia and how much is autism burnout the autism causes central sensitisation threw mcas
I am hypermobile(not EDS) and AuDHD, and struggled massively before diagnosis, now I understand when and how to stop and take care of all my needs.
My struggle is I am strong and have a muscular build, gaining muscles easily, so I have trained and used my muscles wrongfully, causing harm and imbalance, and too little real restitution.
Exercise types and shoes that damage more than helps.
Foot formed bearfooted shoes, to use my body and balance.
Switching cardio for weight lifting with compound exercises, to fix balance and reduce pain caused by using muscles and joints wrongly.
And fixing pain caused by autistic burnout body posture and burnout movements.
Cardio is too hard on joints and muscles, and my ADHD energy levels, strength training gives me energy and fixes pain issues.
My cardio today is normal life movements, gardening, playing with my girl, dancing with my girl, hiking for nature therapy, bicycling as a family, playing ball as a family.
Being active, but not for intense cardio training sessions.
Real Restitution is key though, for health in all areas, exercise, diet, for brain health, for muscles for joints, for digestion.
😮 We always called it double jointed but, eye opener!! I used to always hyper extend my legs (I wasn't concious of it until a PE teacher pointed it out. Apparently, it effected my ability to be athletic?) But - I would bet this is what goes on with my kid's back! She doesn't slouch but, often arches her back & then complains of growing pains. Thanks!! I will call this to her attention. ❤
I have hEDS, am autistic & have adhd! Accommodations are ur bff! Wish me luck as I’m training for my first ever bikini competition! 👙 🦓
Good luck with your competition! I haven’t seen many information on autism in the bodybuilding/fitness community. I definitely would like to know how this experience can be for a person in the spectrum :)
Can you please tell the NDIS all this?! OMFG 🙀 I have tried SO HARD to get support.
Fibro symptoms are horrific. I am on crutches, can hardly move, constant injuries due to functional dysfunctions - my physio calls me “Wreck-it Ralph”. I have asked for a wheelchair, have medical and OT support, to try and prevent further disability and actually participate in life. I have been told already that it will be refused 😢.
Lack of understanding and knowledge of how these chronic conditions are prevalent with ASD is systemic. Every ASD person is different (um, it a spectrum after all!) more emphasis on the whole person approach for support is vital.
I am voicing my needs, but it is hard to advocate for yourself when nobody is listening 😢. Medical/system ableism is so … disabling. 🤦🏼♀️
They discriminate against us they’ve taken away all my social supports and the activities I want to do like dance, yoga, drama and singing
Thank you for another GREAT and helpful video. Much love.
It's nice to hear about activities I could do that won't just make me hurt more or tierder. Thanks!
My toe fungus created chronic pain for years up my leg, no doctors wanted to believe me, but it's nearly grown out now and funnily enough my leg stops hurting
2014 had so much joint pain a fatigue. It was poor posture. Autism brought on poor posture. Fixing it is really really hard. Like as kid and well into adulthood I was toe walker as they call it. It's really I walk on balls of my feet. This cause all kind of joint problem. I sit awkwardly in chair, I find the position very soothing but it's really bad. 10 years ago I started working with a physio therapist. My soothing position caused my rib cage to shift causing chest pain and should impingement and muscle on my left side atrophied. Toe walking caused me knee pain.
So Don't Ignore this.
Interesting not, I'm on collagen supplements too even though my diet include food rich in collagen I still need more. I didn't now that had a condition. Just following doctors advice.
HI Orion, this is an amazing video! I have had Chronic pain my entire life. I use a lot of the things you mentioned in my daily like to keep me going. Heat, ice and exercise. Also resting when I need to is very beneficial. Thanks for all you do!
I was diagnosed with Ankylosing Spondylitis (Non-Radiographic) chronic pain and fatigue well before my spectrum diagnosis.
I honestly can't help but believe undiagnosed autism contributed to generating my disease presentation.
I was diagnosed with hypermobility even before I got my ASD diagnose. nearly every junction can bend over 10% more than average. it got better since I got my dog and go out for walks regularly.
First of all a series of diseases are more common in people with autism, adhd, dyslexia ie autoimmune disorders so psoriasis, psoriatic arthrities, lupus ms, asthma, thyroid disease, arthrities, fibromyalgia, ME , allergies incl food allergies etc
Totally auto immune conditions got folliculitis all over my entire body and the COVID jabs made me loose my hair
If you can't connect the issues, think connective tissues... That was a sentence so true. Plus the brain is also built from it ^^
I think we have to be careful as autistic people when using heat and cold as therapy for muscle and joint pain. It is very easy for us to use heat for too long without realizing and to cause additional heat damage. We will not feal the pain of the prolonged heat.
I have been told not to use heat for more than 20 minutes on any one location. This includes baths and showers and to wait a couple hours minimum before using heat again.
Please don't unknowingly make your problems worse by cooking your body. My dad would lay on a hot heating pad for hours because it felt good at the time. Then he wouldnot understand why his pain was worse the next day after cooking himself for several hours.
I don’t have hyper mobility at all. The opposite actually. But I sure do have a lot of joint pain and fatigue all the time. It feels like how chronic fatigue is described.
I am not bendy though, I’m opposite. My joints bend less than other people.
I really appreciate this video. So important to speak about! Much love
I love your channel! You bring up so many important topics!
Anyone having low muscle tone as a child and teen? They were like mind your posture, they nagged every day. They meant it took no strength, but for me it did and was painful. They thought it was being lazy. I guess today a child would be given core exercise instead of yelling. I'm non EDS hypermobile, but it has only been discussed by a doc once and just saying some people are like that.
Bro, that crackling sound drove me to temporary agggghhhh!
Thats very interesting Orion. I walk on my toes, if sitting, still crouching on toes at the end of my seat. If I don't I feel unbalanced.
I have hEDS i also have MCAS, Vasile vaggal syncope and narcolepsy 1 with suspected Williams syndrome. (Asd and adhd )
Williams syndrome and hEDS are adjacent in the genome. 1 long leg of the 8 and 1 short leg of the 7.
What is MCAS?
@sharonaumani8827 mast cell activation syndrome.
I have had MCAS for 20 years. I also have pots, histamine intolerance, fibromyalgia, chronic fatigue, joint pain, food intolerances, anxiety, ADHD and possible autism. It's all connected. I ended up joining the Gupta Program which is brain retraining thru neuroplasticity. It fixed everything and improved my ADHD a ton! I actually was able to reduce my ADHD medication. I'm taking 1/3 of what I was taking. It has changed my life. I was so bad I was close to not being able to move without some sort of assistance. Now I can exercise again. The program helps you put into place a healthier lifestyle, set up routines and how to pace and rest. I know all these natural ways to calm down and relax now. It also helped majorly with emotional regulation as well. I never thought I'd get my health back.
@@sharonaumani8827 MCAS is Mast Cell Activation Syndrome. It's a nervous system disorder. Mast Cells are in our connective tissue, they line the mouth, throat, stomach, intestines, under your skin. They are the cells that protect the body from the environment.
Finally diagnosed with AuDHD in my 50s and diagnosed with hypermobility and likely due to EDS. My ankle's hurting again, my hip was out all yesterday so I had to walk around all day as much as I could with my hip out. I'm constantly getting fatigue and feel like I have a flu/cold constantly for no reason. Here in the US nobody really diagnosis EDS unless you have to pay thousands (they don't take insurance).
This is 100% my daughter. She's had chronic joint pain since she was 1 and we could never figure out what caused it. Docs always say it's growing pains 🫤. Growing pains everyday seem excessive
@isabellesmama10 I was told by an orthopedic surgeon that I had growing pains when I was 11. I'm 34 now, and I've never grown out of that pain in my knees. It also started to spread all over my body to the point where I can't remember what life felt like without pain 24/7. Keep advocating for her, please, and teach her how to do it for herself. That's the best piece of unsolicited advice I can give you. At least she has your support and understanding, and that alone means a lot 💚
Actually I think I am so lucky after reading all these replies hearing about all the posture problems people have. My grandmother pushed us to straighten up from an early age and consequently myself and my siblings have never had back or joint pain, no arthritis either and I am 70 I do have a financial burden though, because of it most clothing never sits well on me, especialy suits, there's always a ridge of material in my back so I have to get most of my cloths modified. Apparently most people have bad posture and walk with a stoop, so they adjust the cut of the clothing to suit.
I do have some pritty severe pain though as I mentioned earlier sensory and information overload can cause pain to encourage me to move somewhere peaceful
I love swimming laps. It is the best.
Thank You Orion for your infomative videos. I'm a late-diagnosed autistic woman with autistic twins. Is there a support zoom group that meets? I suffer from severe chronic neuromuscular pain due to a trauma in 2020.
Oh my goodness, what a load. Reiki [healing energy] to you!!!
@@sharonaumani8827 why thank you!
I have a very hard time in pools, and bath tubs. As soon as I submerge up to my upper abdomen, my lungs feeling like they're being squeezed and I can't breathe. For some reason, this sensation isn't nearly as prevalent when I go in the river by my house, so maybe it's the stand-still water of tubs and pools that creates the internal pressure. I've never met anyone else who this happens to.
That would explain why it hurts when I rest too long, or when I have long drive or when I’m at my desk too long 😢
Both me and my daughter, both autistic, were born with hypomobility - instead of hypermobility. Both of my ring fingers are missing the ability to bend the top joints, and my daughter's legs can't turn outward (like for a ballerina's plie). We've tried yoga and ballet, nothing helps. When my daughter was younger, like clockwork she would have about one week a month her entire childhood pre-puberty where her equilibrium was way off and she would constantly trip and fall. I've otherwise been pretty agile my whole life, but I've never liked sports just because it meant people.
I'm not hypermobile, however I was born with a swan neck deformity on both index fingers that I inherited from my mother, which I hear is strongly associated with EDS. I'm fortunate enough to live in an era where typing is done more than writing with pen and paper.
i didnt know about this
i thought everything was just supposed to hurt?
my feet are full flat cambered like the front end of a drift car lmao
allignment set for quick turn in
I've been waiting for someone to talk about joints and autism. I don't think I am that flexible but all my joints have been uncomfortable all my life
My pain and fatigue levels have been so bad this year that I was recently tested for Lupus. Test was negative, at least.
I’m an autistic bodybuilder and I’ve been ignoring pain and injuries
Oh and Orion, could you please link the studies? Have found plenty already, but would be interested in more info
I freaked my wife out when we got together. I was clipping my toenails in the bathroom with my leg laying on the counter, and I'm hunched over clipping away. She sees me and says,"Why can't I see your other leg?" I presented my foot at chest height, and she yelled, "What the F@&%!? Fat people aren't supposed to bend like that!" I never thought about it, since my mom and sister also can bend like that.
Another time I did a head stand on my shoulders with my head twisted out from under my body. She thought I was going to break my neck. And our daughter and I grossed her out by flexing our fingers the opposite direction. Again, I didn't know everyone couldn't lay their hand flat and raise their fingers off the table a few inches. I thought it was normal range of motion.
Mine are flat too suffering from plantar fasciitis and neuritis of the tendons
I wish I could find a doctor that has heard about this link. I am so tired of being blown off by doctors. I've had chronic pain and joint problems since I was a young child and had all kinds of misdiagnosis. With 5 minutes of online reading I can clearly see my symptoms sound a lot like a connective tissue disorder but in 50 years not a single doctor I've seen has read about it?
Me too. Medical gaslighting sucks. 😢
I have hypermobile knee joints that result in regular (though thankfully not frequent) extreme dislocations. I have a friend who has a similar condition, but she is able to pop her joints back, in while I am left utterly pinned to the floor until a medical professional resets my knee. The pain is like nothing I have ever experienced, so bad I occasionally have mildly bad flashbacks to the various dislocation events.
My party trick as a child was to lie on my tummy arching backwards then touch the back of my head with my feet. Friends used to respond like I was an Olympic medalist 😂 Have to be careful now in my 60's because joints/ligaments seem to to sometimes get locked in weird positions. Mostly fingers and toes so far, but occasionally knees and elbows. Crafting can be quite painful some days and bushwalking has had some concerning moments recently. Had put it down to aging on a supple active body, didn't know of the connection to AuDHD. More questions for my doc next week 😂
I'm level 2 autistic. I was diagnosed last year in November. I'm 53 years old.
I was diagnosed with Fibromyalgia and seronegative arthritis 10 years ago. And osteoarthritis in my hips and right knee 2 years go.
I'm just wondering if I'm missed diagnosed... I'm forever sore in all my joints, and I'm always so tired. At the moment, all my joints are on FIRE 🔥 and hurts so much 😢
I've been wanting to do water pilates for a long time but to do it in a warm heated pool. Thing is, it's an uncommon to have a heated public pool in Cairns. And there's only one pool that is heated. However, they're not offering water pilates there at all (Gordonvale), and it's some distance away from me. There's a pool closer by, but i don't enjoy the cold water pilates, particularly in winter as It hurts and hinders, and for me, it's freezing cold, particularly under the sail shade. 😢
My bathtub is hard for me to get into and out of. So, for me, showering in really hot water helps.
I'm contemplating in buying a pump up heated spa. It will be easier for me to get out of and a nice hot soak.
In saying all this, I need to make an appointment with my GP and discuss this.
Thank you! You may have solved an unknown symptom in me. ❤❤❤