Adults saying "stop complaining, you're young, it can't be that bad!"... yet they experience a fraction of it and cry and moan about it. Then maybe, if they dare, they apologize.
I have lived with pain for more than 20 years, iit's amazing how we manage to survive with these every day despite all we go through, most times the doctors don't help they either tell you it's all in your head and most of them are incompetent to find the cause of the pain which is the first step to getting it treated but most people are under-diagnosed.
That might be the case and also most of these pain meds have severe side effects, my wife have fibromyalgia for years but was late diagnosed she has been on some pain meds which have some effects on her I came across a mycologist who recommended mushrooms meds, I was skeptical that it will give the results needed but I gave it a try anyways and to my surprise it has been very effective, there has been some progress moving forward with no side effects.
I feel for you. We can't escape this awful disorder - even when we sleep. I get an average of 3-4 hours sleep every night. I often spend several hours just trying to fall asleep, and then wake up again 1-2 hours later.
My experience is the same!! The lack of sleep is crippling. We are incredible human beings to endure this pain and lack of sleep and still wake up every day. 😊
I strongly suspect that I’m autistic (I know for a fact that I’m neurodivergent) and your channel has been so amazingly helpful. So I wanted to say thank you first. I also suffer from a chronic illness (for the past 10 years) and about 2 weeks ago I had the worse flare up I’ve ever had. The pain was so severe I’ve never experienced anything like it. So I deeply deeply empathize with you. And I’ll be sending you so much love and positive thoughts. I sincerely sincerely hope we all (including every lovely person in the comment section) can find relief😢❤
I'm AuDHD with diagnosed Fibromyalgia and peripheral polyneuropathy and I can certainly relate to the 'What's the point of going to the doctor when they're just going to dismiss me as a drug seeker bc they can't find anything or they can't do anything because 'That's just fibro, here's some profen.' (which ridiculously enough is absolutely not true because Dilaudid in my body feels like they've just given me a shot of saline. Like opiates don't do anything for me so no, I want to know what the hell is WRONG so I can come up with ways to deal with said things)
It's so insulting to be treated like a drug seeker, especially when we aren't even asking for drugs. (Not that there's anything wrong with a genuine request for pain relief. Doctors act like it's an evil trait or something.)
@audhdvee are you hypermobile? Because I am, and opioids do absolutely nothing for me (I had a spinal fusion surgery and was in an INSANE amount of pain while on a morphine drip at the max dose), and I did some research a few years ago and found out that people with Ehlers-Danlos (including hypermobile type) often don’t get any pain relief from opioids
@@littlesaintKat I don't know for sure, but I'm about 90% sure that I am. I've always been able to bend and place my hands flat on the floor without bending my legs, and I have sprained my ankles so many times I lost count decades ago. I've never dislocated my shoulders, but my knee got dislocated when I was in bootcamp and it's never been the same. It would make sense that that's at least part of why opiates are like water in my veins. (Although, I did have morphine 90mg extended release a few times, and that helped but injections never did? It's so strange how differently different body types react to medications and such)
Thank you for sharing your story with us Irene! Living with chronic pain is so challenging. A few things that have helped on my journey: - Functional Medicine doctors - Inflammation support (supplements + reducing inflammatory foods) - Healing Trauma/mental health - Creating a lifestyle that allows for the flexibility my body needs In addition to the above, here are a few additional things that have helped others I know who have chronic illness (autoimmune): - Low-does Naltrexone - Continuing to uncover the layers (I know someone else mentioned Ehlers-Danlos Syndrome, and hypermobility as other layers, common for Autistic people) - Finding support for other areas of life - Low stress lifestyle/job I've been on a journey for the past 11 years of uncovering and healing health challenges. In the past 2 months, I've realized and started to accept that I'm Autistic. This has given me a different lens. My journey started with going to a bunch of different doctors and getting diagnosed with IBS, then anorexia, then SIBO (small intestine bacteria overgrowth), iron deficiency, migraines, hypermobility and I am now in the process of a potential PCOS diagnosis. I struggle to accept my limitations more than my diagnosis. Taking "no" for an answer has never my default, and so I keep searching. But because of that, I have also found more answers and found healing one layer at a time. It is super frustrating when doctors don't listen or have given up on you before they even get started. Keep searching! There are answers and options. 😊
Thanks for this! BTW I quit gluten, prob gonna quit dairy. Have you tried these, and if so what were your results? I'm also trying hypnotherapy! Wishing you the best!!!
thank you for this detailed list of what’s helped you on our journey! People think of this as a disorder needing fixing, when really we have sooo much to offer society and just have some different support needs. the current system is not “health care” it’s a 1 size fits all approach that leaves so many people frustrated blessings on yer journey!
My pain specialist Dr brought up low dose naltrexone, but I’m skeptical. How long does it take to make a difference in your experience? And is it a significant improvement or just slight? Ty!
your videos on meltdowns and shutdowns in particular have done so much for the relationship between my parents and I, coming into an autism diagnosis after 22 years undiagnosed. You've helped them to understand me, helped me to understand myself, and hopefully, helped yourself to understand. I just wanted to thank you for everything, and I am wishing you all the best; you are undoubtedly experiencing an incredible pain, and I am desperately hoping for your comfort and good health.
You articulated my own struggles so completely. I hate that so many of us are experiencing this same horrible reality. And most of all I hate going through it myself. I cannot be the person I want to be because I am in pain all the time and I can no longer recall not being in pain. It’s awful and I’m so sorry for you and me and everyone else that this resonates with.
I think that a video about having a high tolerance for pain but low threshold for discomfort would be really helpful and informative! I have always pushed through pain even when I shouldn’t, but have what feel like meltdowns when I get sick or am immobilized by it. I have an ADHD and learned at 24 that I am autistic also, although not Dx. I’m 26 now and channels like yours have helped me immensely to understand a lot of the difficulties I had growing up. I also suffer from chronic pain although it’s more joint and arthritic related and unfortunately have been treated the same way by doctors. Thank you for all that you do! I don’t know if it’s been said before, but I’ve found that for me when it’s difficult to take care of myself (because I don’t see myself of any worth/value) I like to pretend that I’m taking care of the child version of myself. I think it’s easier because I love kids and see them as blameless for their surroundings and that they are deserving of help, even when I don’t think I am
Personally, I feel like if you have chronic pain, you are likely to disassociate from it until it gets to the point you are having a meltdown. I guess it could be called having a high pain tolerance, but just because you aren’t in touch with the pain doesn’t mean it isn’t there. Similar to emotions and trauma. My mental breakdowns always occurred when I was in unbearable pain but I never realized it until it was too late because I have been chronically ill for a decade and have to disassociate from it to survive.
@@MyDuckSaysFuccYeah I understand that, I've been there. I do think it's possible to be more present and head off the meltdowns but you have to orient your whole life experience in that direction and it's hit or miss how much you can keep it up with everything life throws at you.
This is so true! I'm 45 but had never put that into words; 'high tolerance for pain but low threshold for discomfort' - exactly! Thank you for sharing, and indeed a great idea for a video.
Might be a good idea to look at/into Ehlers Danlos Syndrome (hypermobile type; type 3), and Hypermobility Specturm Disorder, they're reasonably similar. Pain and especially joint and arthritic-feeling pain come along with those conditions, almost always. There's a strong correlation with those conditions I mentioned and autism. Some conditions that are a common part of it too are POTS (postural orthostatic tachycardia syndrome) where blood doesn't flow effectively upon standing, digestion issues, etc. Definitely worth at the very least a quick search of, also as Ehlers Danlos Syndrome goes undiagnosed very often, not a lot of doctors are know of it sadly, even though it's not super uncommon.
Felt. I have hypermobility & just always thought it was normal to wake up in pain 100% of the time, & for most of your wake-ups in the night to be because you're in pain & need to reposition. I can't be comfortable in a chair without good arms because my unsupported body can't relax without being incredibly uncomfortable. a bed without 8 pillows & blankets to create a supportive nest LITERALLY feels just as bad as sleeping on the ground so when I travel I'm the *most* extra. Just like autism & adhd, figuring out that I had it was a relief & gave me the language to communicate what I needed.
Oh, this is so hard for me to hear as someone who treats chronic pain in dogs and cats, and thinking about all the things integrative therapies we do for our patients that lead to profound results. You as a person should be able to have access to the same care, and providers who listen to you and want to help you. I hope you can be referred to a pain specialist and can figure out what the pain is stemming from - one condition or multiple. Pregabalin, low dose naltrexone, ketamine infusions, acupuncture are amazing.
I just wanted to say that I see the bravery it took to share this, and I feel touched by it. I share many of the same diagnosis and am disabled by chronic pain, migraines, etc., and you speak truthfully and vulnerably about the experience in a way that feels profound. We need more voices lifting us up in this community, and I think that’s exactly what you’ve done here. Thank you for sharing this with us all.
The pattern I have noticed with myself is that when I’m eating healthy…well, healthiER…I have less pain. Not gone entirely but better. Lots of fruit in particular. I love your channel btw! Just found out I was autistic/adhd last week (I’m 46) and been binging you and several others since.
I enjoy the more personal vlogs. I've got Lupus, Antiphospholipid Syndrome, Autism, and so much more. Was diagnosed when I was 16 and a half (I'm 43 now) so I completely understand your struggle. As cliché as this may be, you're not alone, and even though we hear this all the time, we still need to hear it, because strangely, it lessens the burden in some way. Thank you for sharing your videos, especially when they are raw and emotional as this one. You're awesome!
I’m so sorry you’re experiencing so much pain, but I really appreciate you sharing this very tender and raw moment to show what it’s like to go through. If you haven’t already, please check out the podcast “The Cure for Chronic Pain” by Nicole Sachs. Her work centers around the concept that chronic pain, although 100% real and focused on certain physical conditions or areas of the body, is not necessarily caused by those physical structures. Instead, chronic pain has its genesis in the mind-body connection, where the brain actually causes pain to occur in the body, in order to distract you from an even greater emotional pain, usually the result of some unresolved emotional trauma. This occurs most prevalently among people who tend to be highly driven, perfectionistic, and people pleasing, among people both with and without ASD. The cure, according to her practice, is to use a type of brutally honest and open journaling to call out those unresolved emotional conflicts and respond to them in an emotionally powerful but safe way, by putting them down on paper (or digital), then after you’re finished, destroying what you wrote. By doing this, it addresses the unresolved emotional conflict by finally giving expression to your own emotions, which eliminates the reason why your brain was causing your body to create pain in the first place, and the chronic pain symptoms quickly begin to fade. She was recommended to me by a friend who was experiencing a great deal of chronic back pain, and I’ve found that listening to her has been very insightful. “The work” (as she refers to her journaling style) makes a lot of sense to me, as I find using writing to be a very effective way to express and process difficult emotions, which can be very cathartic and freeing. I hope you’ll give her a listen, and I hope that her technique might help you to once again live a pain-free life. You’re such a wonderful person and a beautiful soul, and I hate to see you suffer so much. Sending you love, caring, compassion, and lots of healing thoughts. ❤
Oh, and while typical pain medication doesn't tend to help with fibromyalgia pain specifically, antiinflammatories like ibuprofen or aspirin do help reduce system-wide inflammation and help me tons with tendon, muscle, and joint pain.
I rarely find myself writing comments, but I just wanted to say that I wish I could give you a big virtual hug. Nearly every detail of your story closely mirrors my own; from the stage of life that we're in, to our experience being invalidated by the medical system, to the worsening pain that makes every day a fight to survive. I've been trying to find the answer behind my pain for years now. Then I was diagnosed with autism in my mid-20's at the start of the year, and after the initial grieving period it's almost like something collapsed. I had to buy a walking cane with a fold-out seat for my lower back issues, and some days the fatigue, the physical pain is so debilitating that all I can do is lay in bed, wishing for better days. Wishing that I could function like I used to, be creative, just live like I used to. I wrote and released a song about my diagnosis this year, a message to my childhood self, as a way to cope with it all. Thank you for being open and vulnerable, sharing your life's experience, and helping all of us in this big, scary world feel just a little bit less alone. The truth is that living here is a triumph in itself. Wishing you and everyone like us out there light and comfort on this path that we bravely walk. 🤍
I kept seeing this on my recommended, and as a neurodivergent woman with fibromyalgia, you spoke everything I’ve been afraid to say out loud. I’ve been flaring up because of the summer heat, and it’s been taking all of my motivation and energy. Thank you for making me not feel alone.
What I hate most about fibromyalgia is the lack of understanding everyone around you has. No one understands that just a couple hours of work can make you bedridden for the next 3 days. Quality of life can be so low with this disease, but no one will ever know or believe because 1. No one actually cares about others pain all that much, and 2. It’s invisible. If you are young you will especially get dismissed and diminished. I have lived with it a decade from my teen years. Even having family with it, i still don’t feel like my effort is recognized by anyone. Choosing to go on each day knowing that you will continue to be in significant pain for ever, and any normal everyday action can make it significantly worse, takes a lot but no one will believe it just by looking at you. I live a middle class lifestyle with others looking after me, enough money to have hobbies, and yet I feel like my quality of life is still low. To be honest I’ve been passively su*cidal for years. I’m in my mid twenties now and it seems like working is going to be impossible unless it’s a very easygoing job. I try. But I honestly would stop choosing to be here if my living situation changed, because it’s just not fair to be tortured by your body 24/7 and have to work in that state. It’s impossible to go on very long for me at least even with a part time job let alone 9-5 and guess what, if you don’t get money from working many people don’t have the capacity to survive. And disability benefits for fibro is far from accessible. Society asks far too much of the chronically ill. When I see homeless people on the street, I know I would be like that if not for family and I just can’t comprehend ending up there.
I empathize with you on the passive feelings. From a very young age I knew I did not want to do all this forever. And it feels like people can’t understand that. I appreciate you sharing, it’s not talked about much.
i have adhd and while i don't have chronic pain, i have chronic fatigue and very very low energy, ever since i was little. i could only play with kids for a few minutes before i was exhausted. now i'm 43 and i seem lazy but i just CAN'T. now i'm starting to have sciatica problems from sitting all the time but i have no energy to do heavy exercise or move around a lot. i've spent 6 months in bed bc of intense pain so bad even morphine didn't help. and the worst part is people think i'm just pretending to be worse than i am or i'm just lazy? it's like an invisible "disability". i have a low pain threshhold (i'm a redhead, and redheads have a low pain tolerance). a doctor at the ER even yelled at me bc he thought i was faking it! i also don't trust doctors. for the most part they are useless. anyways, i hope you feel better
If you're interested l, Fascial Counterstrain is a gentle hands-on therapy provided by a specially trained physical therapist (my insurance covers it). It's helping with my chronic pain and I've heard it can be used to treat sciatica, too. ❤🍀🥄
I got my chronic pains when I was 22 and I turn 40 this year. I have tried so many things, medical and pseudoscience. But as you say the biggest issue is not being heard and helped by the medical proffessionals, just ignored and not believed. It's beyond hard. This year I got my ADHD and ASD diagnosis. It's been hard to accept the pain, the pain making the ADHD worse because I can't move like I used to. I can't use the same coping mechanisms etc I did when I was younger. Realising that I had the ADHD and ASD all along wasn't nearly as hard as the pain, but it does pose one problem I have a hard time dealing with and it's being seen differently, treated differently once the diagnosis is revealed. And I mean by doctors just as much as others. I really hope you get some help with your flare up. I suffered though one just this spring from february to late may. I really hope you get help faster.
I had a meltdown today because I had to call out of work from pain+mental health. I find pain always makes my brain worse. I really relate to resenting the body and its problems and being jealous of people who live without those problems and not being able to handle it sometimes, worrying that we failed to take care of it. Thank you for reframing our youth in prospective to this (I'm 27 too) instead of saying why are we having so many health problems so young, saying we still have time to solve those problems and live without them. It does seem like the "pseudo-sciences" are more holistic, more up to date on the latest health research, are REALLY expensive, but a lot of people are havjng success with complicated cases with them as opposed to conventional medicine. I agree with the other comment that functional medicine is a good bet, I wish I could afford it right now. Don't worry about your uploads, we know you're doing your best ❤
I am angry that your doctors are doing nothing for you! Wait until it gets worse? What kind of doctor would say that?! 😡 I have chronic pain and have autism as well. I understand what you are going through. I been seeing a doctor as well. I cry and been feeling hopeless,and believe me,I understand what you are going through. This video helps me in a way that I am not alone,because as someone who has an autism spectrum feeling overwhelmed with life challenges in general,this video has HELPED ME SO MUCH! I hope you’ll not have ANY MORE chronic pain very soon (same with me as well),and I am sending you love and hugs your way. ❤️🤗🙏
I understand how you feel. I went to the doctors for stomach pain and to get diagnosed for autism. She said she will make a referral to a G. I. specialist, but she told me that last time and never did. Then she told me I couldn’t get an autism diagnosis. This isn’t the first time she told me no or she couldn’t help me or send me to a doctor that will help with my health. I feel like this doctor gaslights me so I’m going to go see if I can switch my doctor. I just want to be accommodated for my health. I want to not worry about being in pain or feeling lousy.
Yes, get a new provider! If your clinic has a mental health or behavioral health department, you may be able to look at their website or call their nurse line to see if they offer adult assessments for autism, what the process is (does a primary care provider need to make a referral, or a counselor or another provider?), or if they know another clinic or independent provider that does. A county or organization in your area might also have a phone number or website like 211, where you can ask for names and contact info for providers in their databases who accepted your insurance, offer sliding fees or pro Bono work, or provide a specific service, such as autism assessments for adults. A lot will only take children, but there are still folks out there who see adults. If you have insurance, their customer service number on the back of the card is another place to start. Best of luck 🍀🤞❤️❤️🥄🥄 Edit: Public and university libraries usually have community boards showing local resources, or librarians who can point you to an organization that might help. University clinics that serve the public also tend to take insurance, and might have providers who see adults, not just kids.
@@gamewrit0058 Yes, I understand. I will look into resources to get a diagnosis. The nurse told me on the back of my insurance card there’s a phone number to call for mental health. Thank you. 👍🏻😊
Thank you so much for sharing this with us. I too live with chronic pain & have been struggling for 10years now. It has significantly changed me. 90% of each month I’m in unbearable pain due to endometriosis & debilitating migraines. Can’t work, can’t exercise, living such a limited life. Doctors suck. Our healthcare system sucks. They have failed me. This year I made a promise to myself to put off seeing any more doctors. I see this as self care. May sound like bad advice to some who don’t have to spend years of theirs lives dealing with the stressors of our healthcare system. I couldn’t deal with yet another year of the rollercoaster ride of hopeful, awaiting appointment openings for specialist, awaiting results and then ultimately a major let down and big bill. Rinse and repeat. So I am prioritizing rest, play, pleaser, fun, boundaries, genuine authentic living at al costs. Trying to stay present and appreciate the good days with minimal pain or rare ones with no pain. It doesn’t remove the fact that my body is struggling, but ot helps me find peace and respite. Eating healthier (less junk food vegan and more whole food vegan) has helped me tremendously. My advice, Temper the dark with light. Focus on gratitude daily, multiple times a day. Give love & feel love. Be kind to yourself. Remain authentic. You are such a light to your viewers we are so incredibly lucky to have you. I feel for you. Hugs
Thank you for taking the time to comment this! I just had the same thought this morning, after having a meltdown yesterday at just the idea of going to see another neurotypical medical professional who doesn't understand, usually doesn't really help and at worst re-traumatizes me. It was helpful to read this from someone who has already come to + enforced this decision. How are you these days? Sending all the best your way 🌻
I feel you, sweetheart - seriously. I have been exploring the potential that I could be autistic and ADHD over the past few months and so much of my life makes sense in retrospect now. I've suffered with chronic back pain since I was a child and was never given a reason for it. When I feel sciatica coming on, I either press my thumb or a tennis ball really hard into the side of my buttcheek (you'll know it when you hit the spot, because it HURTS). And then the pain and sciatic symptoms subside for me. Also, a wireless TENS machine helps a LOT with my pain too. I hope some of this helps, if you don't already know about them. Gentle hugs!
I have recently diagnosed ADHD and undiagnosed autism. I endured severe physical and emotional abuse growing up and have Crohn’s Disease (an autoimmune IBD), knees that constantly dislocate, arthritic symptoms, and so much back/neck pain it’s unbearable at times. I’ve been consistent with yoga for a couple years and recently have been meditating more. I want these two practices to become daily habits for me, it’s just hard to even get out of bed some days. I really resonated with this video and I hope you are able to find ways to help your body. I just found your channel and I am so so thankful you made it!! I feel so seen and validated. much love 💗
Thank you for posting this video. I was looking for information on the link between chronic pain and autism. It has helped me realise how common it is for us. A friend recently asked me where my physical pain was and the only answer I could give her was everywhere and all the time. She encouraged me to look into this.
I have TMJ which triggers cluster headaches & chronic back, neck, and shoulder pain. I think it all starts at my foot; I have one arch that’s higher than normal and it ends up throwing my whole body off. I am the same way with sleeping, I can only breathe when I’m lying down on my stomach and that makes everything so much worse. My doctors dismiss me all the time. I’m so tired. Thank you for uploading this today, it’s a particularly bad pain day and I’m dragging through work until I can go home and try to nap. And of course I can’t get painkillers because you know, I’m in my early 20s and probably just drug seeking.
@@Truerealism747hi. no, never got that far in treatment with doctors. I went to a PT and found out the root cause is tissue damage in my neck, which is likely from long term postural issues. PT exercises did nothing for me but massage did. Look up self massage techniques for fascia release or gua sha. Over time I’ve been making it a habit to have correct tongue posture, stand straight, roll my shoulders back often, etc. it’s helped a lot and I have no TMJ symptoms right now, I just have to be extra careful not to clench because I am prone to carrying tension there.
I know this video is from a few months ago, I hope you’re feeling better now. I’m waiting for a private assessment for Autism, I’m 35, I have fibromyalgia and joint hyper mobility. I can definitely relate, I gave up going to the doctors once I got diagnosed with Fibromyalgia, I’m fortunate they don’t seem to mind prescribing me strongish painkillers. If I didn’t get regular pain relief there would be days I’d be completely bedridden. I’ve always suspected I developed it because of trying so hard to be ‘normal’ and suppressing my emotions, I had no idea these type of issues were prevalent amongst this community. And Yep I totally understand about being a different person when you’re in pain.
I just realized that mosquito bites could be a great analogy for how pain tolerance is different from discomfort tolerance, because I've had a spider bite too which hurt more but I didn't even notice it for three days, while a mosquito bite isn't that painful but it's so itchy and obvious
Sending love ❤ It sounds really uncomfortable and exhausting. I deal with bad menstrual cramps (possibly Endo) but I havent been diagnosed with it yet. I have an ultrasound I need to do that I’ve been putting off. What really was affecting me daily was some serious lower back pain and it lasted at least half a year to nine months where the pain was awful & constant. I couldn’t get up and down without it hurting and the pain was bad enough to audibly be in pain. Not sure if it was from an exercise I attempted or from lack of exercise and WFH.. but it was a lot to deal with and just difficult to do every day things. I can empathize with how you’re feeling. The video you shared about thanking our bodies for all that they do to keep us alive was a great reminder to hear. I’ve had that realization before.
The oral progesterone pill greatly reduced my severe PMS, and it makes life liveable for a friend of mine whose endo pain had her bed bound; it also stopped her excessive bleeding that was causing other health problems.
i have been researching trauma in the body, and how they are intertwined. i'm learning how trauma can be a root cause for some health issues. take care of yourself i am rooting for u, and everyone else with chronic pain. know your limits. Acknowledge the pain and feel it, attempt to find its origin, and learn how to heal one day at a time
I've been grappling with that one too, and have come to the conclusion that it's important to look at both trauma and chronic stress. Stress as a concept has kind of fallen out of favor, but I'm coming to understand that is does similar damage. Jessica at How To ADHD just did a video on the long term health effects of pushing yourself too hard for too long, and this was prompted by her realizing she needed to take a break from long hours writing her book. Orion just ran a piece on burning out, in part due to a long hard push as well. I've finally realized that my decline in functionality in recent years is largely due to pushing myself too hard for too long in my job, and further degrading my already-poor executive functioning, which has further impacted my ability to emotionally regulate. It's easy to overlook in a society that prizes hard work and success.
@@jimwilliams3816 yes!!! thank you for bringing that up. i have also been looking into that too. gabor mate and his ideas have been revolutionary in my process of understanding what even happened, and is happening to my body, as it exists in the world everyday. watching orions burnout video was a reflection of being autistic, regardless where you are located in the world. being violated... i feel for him so hard. we really really need to take it one day at a time. we need to accept great things can still happen for us without pushing our limits.
I am here witnessing you and sobbing with you. Recent Lupus diagnosis and have had a horrible migraine that's made me vomit for the last 3 days. Its resonating that our bodies are just trying our best
OMG, that is so true; the thing about people not realising you're struggling until you can't hold it back anymore. The same applies with autism and personality disorders, people always seem like they don't believe you because they've known you for so long and you've never expressed it to them. As someone with both of the above, as well as Dyspraxia; chronic pain just becomes part and parcel. Stick with it though and try to figure out what the best strategies are to minimise it. You can do this.
I'm officially diagnosed and yeah, I have bruxism and my body hurts and I sleep terribly. I actually waiting for doctor appointment and I'm pretty miserable, but I won't give up.
Late aspie diagnosis here. I used to have excruciating pain for many years. Never got a diagnosis, but fibro myalgia was floated as a possibility. I found that earthing does help to some extent, but what did help most was electronic foot baths. This wasn't planned. I had been on sick leave for years and the job agency wanted to send me somewhere for evalutaion of my abilities to uphold a job. I ended up at an alternative therapist - what are the chances...? - and he had just bought a couple of these baths. Being an electronics engineer I told him he was stupid believing in this Chinese BS. He told me to shut up and enjoy the fact that I would be sitting for an hour once or twice a week with my feet in hot water. Conceeding he had a point I accepted. After about two months, I realised it had been quite a while since I had had the usual debilitating pain (at least once per week). Yes, I bought a bath for myself and havent had that kind or level of pain since summer of 2011. What the baths does, I presume, is like turbo earthing drawing garbage from the blood stream out through the skin. The water often have a deep brownish tint and a metallic smell, like really old bed sheets that have turned yellow and smell bad.
sorry to hear about your struggles, hope you get better. also, I didn't even know fibromyalgia was even a thing. I have struggled with chronic musculoskeletal pain since I was 13-14 years old. for about 10 ten years now, it seems. did all the xray of every joint, of my back (they found scoliosis though). all of the blood studies for autoimmune disorders - nothing wrong. doctor told me I was just hypersensitive and it's the norm for me. I mean, my pain is probably significantly less severe than yours. But I still feel it everyday and to this point thought it was normal. Funny thing is, when I first 3 years ago watched videos on autistic traits, I thought "Wait, I always thought it was normal, I always did that". Sad that sometimes because of the lack of information we think our struggles don't matter and we just accept that it's just the way it should be for us. I wish people had more empathy towards the pain of other people.
Chronic pain invades & changes every aspect of my life. It's overwhelming. I was diagnosed with Fibromyalgia 6 years ago after 11 years of trying to figure out why I was in so much pain. It's never ending. And honestly, I don't always want to be here in this body anymore. But I would never consider taking my own life. 6 yrs ago I switched to a plant based diet, started doing yoga and got off of all prescribed medicine. They made me feel worse. I am currently looking to plants to help with the inflammation. I will be trying golden rod, which is growing wild where I live. I do hope it helps relieve some of the inflammation. I try anything I can to help. I prefer homeopathic remedies. But they don't make the illness go away. The impostor syndrome hasn't gone away, because so many loved ones feel like I could do more than i am. It's so frustrating.
I honestly can’t remember a point in my life where I wasn’t in chronic pain.ive stopped trying to get any help because I think I’m looked at like I’m a hypochondriac or drug seeking. I don’t want pain meds doc, I want you help me figure out why I’m in pain and make it stop. I understand you so much.
Oof, everything about this is relatable. You are describing my days--not just the pain, not the specifics, the sciatica, the migraines, everything. I can see I'm not the first to say this, but I think it bears repeating: look into Ehlers Danlos Syndrome. I have autism and hypermobile EDS, and found out that having one, you're ~5x more likely to have the other. I also have common comorbidities/caused-by-EDS: IBS, Chiari Malformation (cerebellar hernia into my neck), and CSF leaks that haven't healed on their own. Oh and endometriosis made my sciatica worse; my EDS means the hips fall out of the socket (subluxate), and the Endo caused monthly swelling that just made it more common and more painful. I'm listing these because none of these are things doctors thought of --many doctors hadn't even heard of them, or told me, "your symptoms don't match" -- but all of them were confirmed with tests. (If any of these sound like you, you need to get an upright MRI. It has to be upright, not supine. Trust me.) So I hope this list helps someone else, either you or someone reading the comments section here. As disabled, chronically ill, neurodiverse, AND afab people, usually only way we get good information is each other. I'm sending so much love and thoughts to you and everyone else like us.
I experience chronic pain and dysfunction in many aspects of my life. I've also fixed many through lifestyle changes, strength exercises, and de-stressing my life drastically. I'm not surprised you have migraines, TMJ, and Fibromyalgia as they seem to be very common in stressed women in Western countries. I'm thankful that you're able to share your thoughts and feelings :) Personally I've come to terms with chronic pain by expecting it and knowing that it doesn't control my life. It may always be present, I may not always be the best at managing it, yet I'm still represented by this body and the cool wiring of my brain. This comes with my practice of Karma Yoga, I do as I've assigned whilst not being attached to the results.
For over a decade I’ve struggled with chronic pain, specifically gastrointestinal issues that greatly affect my mood and mental health. I know that feeling of frustration associated with going to the doctor, especially when it seems like there’s rarely anything they can do to help. So far, I’ve found that caring for myself and managing my health is a proactive journey. Even 10+ years on I don’t have many answers to why I experience near constant discomfort and the solutions are even more scarce. Still, I try to appreciate my body for all that it’s helped me endure and be kind to myself, even when I feel like it isn’t worth it-because it always is. I really appreciate the message of the clip you inserted and I’m going to try to remind myself to be kinder to my body and not allow myself to miss out on experiences because of the way I’ve been taught to perceive myself. Thank you for being so vulnerable and creating a space where we can have these more intimate discussions. Sending you love 💜
I can't comfort you with false hopes. I don't know if it will ever go away, but what it's worth, you are holding on with amazing strength, and I hope you continue to do so... Warm hugs coming your way ❤❤ I used to massage the aching areas with silicone cups, in the warm shower, helped a little. Need to get back to it now that I have a little more time and energy to spare. You could try it too, if you like.😊
I've lived with headaches, migraines, and pain since I was a kid, but I was always disbelieved or else told there was nothing that could be done about it, so I never know if it's worth even telling a doctor about anything that I want help with. Most of the time, it's been better for me to figure out what's wrong and then come to a doctor and say 'I think this is what's up' and they'll run tests to see if it's true, rather than me asking them what could be causing my symptoms I've lost so many days over my lifetime to shoulder, neck, and head pain, and last time I tried to get some physical therapy to help with it, not only was the specialist pretty condescending about my chronic fatigue, then the pandemic started and I couldn't even go in for my follow up, so I just kind of stopped
I also have scoliosis, autism, adhd and also chronic pain. The scoliosis is pinching my nerves and I get numbness and pain in my left arm. I really feel for you and relate to your story! Thank you for sharing this. I hope for healing for all of us who are in so much pain
I have exactly the same, but also with M.E/CFS and Fibro. There definitely has to be a connection between all these disorders, right? Wishing you the best for your healing journey 🌿
@@SOMETHINGTOSLOW yes I have all.these to the last diagnosed last week 43 aspergers.dr schubiner says pinched nerves dint just caused pain though always numbness so I always hope the muscle pain tension us sycosomatic from.the subconscious mind though not working yet I believe it's neurosthenia as Victorians called it
I’m on nortriptaline 20mg at night, it has helped my chronic pain a lot. I’m self diagnosed ASD. Not sure if you’re on medication but that and some strong painkillers (tramadol) on the bad days gets me through. When I’m feeling better exercise is what helps the most, swimming can be good with back pain. Drinking water, walking and therapy. Hope something of this helps. I’ve been where you are and it is so upsetting but I figured it out and so will you xx
You don't need to feel bad or lazy about posting this kind of entry. You are allowed, it was good and I think it means a lot to many of us. I so wish I could do something for you, and to be honest that feeling is a gift to me, because I have a hard time connecting with people and can usually only do it through painful emotions. I do not usually cry while watching a video but I did when you ran that TikTok message. I have only recently started to connect my chronic pain with my neurology. I developed debilitating trigger points in my late thirties, and it's only been in the last year that I realized it was connected in part to my hypervigilance and AuDHD frustration. Now when I get frustrated I start to notice my back starting to hurt. In large part just tensing up. I don't know if I have any namable reasons for my chronic pain. I'm starting to see some hints from throughout my life. My family was not much for doctors, and when I have asked questions I haven't gotten anywhere either. The best lessons I've learned, in case they are of use: I did do better from learning stretching, moving and muscle toning exercises, and these came from a physical therapist. Oddly they are part of the medical profession, and for some reason you need an rx from a PCP to see one. It is important to find one who understands compromised bodies. The well regarded PT I saw in 2004 was in great shape and showed me ambitious exercises that hurt to do, and I think I wisely gave them up. I next saw a very good PT in 2014 who gave me gentle exercises that I did, and they did help a lot. After that I was rarely bedridden. I don't think chiropractors are pseudoscience, but like "official" doctors they vary. I've had ones that are careful and ones that thought they could loosen up my vertebrae rather too aggressively. Someone who works gently to loosen you up and straighten you out I think has value, though I never stayed straight too long. There is some mandated chiropractic insurance coverage in my state, and the ACA may have added some too, but almost no chiropractor I've seen is in network, because insurance rates are honestly not a livable wage for them. So I've always paid cash. The feelings of despair in the night, for me, are all about my amygdala running amok. The pain, physical or emotional, takes its toll, but the feelings of doom are almost separate from that -- when my amygdala is at it, it colors everything, and the turmoil worsens pain. Mood affects my physical pain almost as much as vice versa. I'm much better at downward spirals than upward ones, but I can see that the latter is helpful if it can be achieved. I so hope you will be able to feel better, and soon. I have had things improve, both with my body and my mind. If it can happen to an unmotivated old schlub like me, you do have a real shot at things getting better.❤
Loudly seconding PTs, as well as occupational therapists!!! They've helped a large number with my Ehlers Danlos-related pains! Also seconding about the type of entry. Going through a lot of chronic pain myself today, and the vlogs are actually something of comfort videos. Really appreciate your comment~
i’m really sry if this is overstepping or unwanted/unnecessary advice, i just wanted to share that if u can afford it, which i know is of course a massive barrier for sm ppl, but physio can be incredibly helpful especially for scoliosis. i am so sorry u r struggling so immensely. what u said about talking to ur partner ab “what is it like to not wake up w in pain” i wept as soon as u said those words. same with what i said ab feeling trapped in ur own body. there is no catharsis. u r too tired and in pain to do anything u enjoy, but can’t rest. it is borderline indescribable because it simply doesn’t end with chronic pain. i am happy to at least have people like u to share these feelings in community with. thank you. i wish u the best
Irene, it made me so sad to hear your struggles 😢 I live with fibro too. It is so horrible. I am feeling very vulnerable atm too. Trying to function in the day can be just too much. One thing I have found that helps a little is myotherapy. They use cupping, dry needling, massage, stretching, exercises, etc. it helps me to connect with my body more and I feel like I can function a little better. I don’t have as many falls, accidents and it even makes it easier to breathe afterwards. Sending positive energy to you.
The more that I have researched autism and it’s correlation with my chronic pain I’m so surprised how intertwined they are. I have suffered for 30 years and have never gotten help by the medical field. If nothing else please know I know EXACTLY how you feel you are not alone and there are many of us that care and truly understand. CBT has helped me. I have never accepted the struggle it is very real very hard and lots don’t understand. Also massage has helped me a lot and also acupuncture and acupressure.
These sit-down type vlogs are great and super helpful for someone like me who needs to see a realistic point of view. You’re not lazy, you’re just moving at a different pace right now (learning this myself as well). Thanks for sharing and keep taking care ❤
Everything you’ve said in this I completely resonate with. And, so far in 3 years, I’ve been to idk around 10+ doctors? Some er visits where I was dismissed as well..pathetically, the only time I was ever taken seriously at the ER out of the 3 times in the last year, I was in sepsis. The other two times I had obvious & dangerous symptoms that got completely and entirely dismissed. I went to the ER this last month because I was having literal anaphylaxis 4+ times a day, the day I decided to actually go because I’ve already been treated so horribly by so many doctors, SO many. It happened for 4 days BEFORE I considered going because of past experiences. I went and the doctor basically yelled at me for giving her my symptoms and telling her what was going on, diagnosed me with anxiety when I was having continuous arrhythmias, really high bp (165/123 mmHg - I’m 22 years old ) - 140 heart rate and I hadn’t stood for a solid half hour? I was in a wheelchair.
I also struggle with Endometriosis and Fibromyalgia coming to terms with these has been such a struggle and I still struggle with it. I think just letting yourself grieve is helpful. I’ll go through periods where my cup gets fuller and fuller till I need to just spend the day grieving and crying, feeling all of the emotions that come with it. I really appreciate you talking about this and also love this format of video so please know that they’re aren’t viewed in a bad way. These feel very personal and it’s lovely. ❣️ I hope that this flare doesn’t last too long and that tomorrow is even a tiny bit easier to cope with! ❣️❣️
I have been following you for awhile and so much of the things you say feel like its been plucked straight from my brain. I have also been dealing with undiagnosed chronic pain for the last two years and have had the same treatment by doctors being dismissive and saying they cant help me, it truly is the worst feeling and makes you feel absolutely insane. I too get extremely emotional about it to the point I can barely talk about it without instant tears. I just want to thank you for documenting your experience because your words truly make others, including myself, feel less alone. Your videos have brought me so much comfort as I deal with both chronic pain and navigating my neurodivergency. Wishing you answers and relief
I was scrolling through your videos, unsure about watching. Not sure if I wanted to watch another autism channel, y’know? Then I came across this video and went, “Oh, this person has more in common with me than just also being autistic”. Thanks for the video.
I am probably autistic and I also struggle with chronic pain. Since around 14-15 I’ve been getting migraines, I don’t technically qualify as having chronic migraines anymore since my Emgality has brought it down to less than 15 days a week but for many years I was a chronic migraine sufferer. Then I also got diagnosed with POTS and IBS among my many MANY other conditions. The symptoms really suck but the community I’ve found has been really nice. The way I deal with chronic pain is taking meds, using heat pads, using distractions like watching TH-cam, meditation sometimes, and finding support groups. Also laying in a dark quiet room helps. And pacing myself, even just giving myself grace and acknowledging that it’s okay that I don’t have any more spoons to spend today makes things a little easier.
I love all of your videos, it's so rare to find someone who makes content like this on youtube. You've been so relatable in every video I've watched so far. Thank you.
As someone whos only hadchronic pain for about three years, my only advice is to always have something you enjoy doing. Ive had to find new passions as im no longer able to participate in sports or spent a whole day at school. No matter what you need to have something that makes you proud and happy. Im not saying its easy to find that in poor physical state, but its very much essential.
I'm 18, been dealing with the pain since... probably 6th grade so 11. When puberty slowed it brought a lot of problems to light. It's just slowly gotten worse, cracking knuckles and having a sore back sometimes slowly turned into constant pains and weaknesses. Like you said, some days are okay and some days are so difficult you have to cancel almost every plan and routine you have. I have eds, I'm not too sure what else. I cant afford going to the doctor enough to find the one that will take me seriously. I'm kinda waiting until I can move to a universal healthcare country to start. Personally, i just have to take things very very slow a lot of the time. Hot baths offer the most relief, I've practically abandoned my ibuprofen and pain meds because it barely feels any different. I'm always planning for a hot bath, taking 30minute breaks, wrapping my body in sports tape and ace bandages, moving like a sloth, and sighing heavily at everything because I don't even have the energy to be mad about things being difficult anymore. I've gotten better at taking care of myself and am very lucky to be in a position where i can afford to take my breaks and be slow. But it's always lingering in the back of my head, that one day it'll be even worse, it's only a matter of time before I find the next problem. I struggle with imposter syndrome towards it because it's that feeling of "i could push through it, I dont absolutely have to use these accommodations" (which i think is a mentality that comes from masking) but my health would be worse if i listened to those thoughts so i try my best to brush them off. I think I hate it the most that people 'dont want to hear it' they hate it when I talk about or joke about how the pain and my autism affects everyday of my life. And no one wants to give you any credit unless you fit in this box of completely debilitating problems and being a certain age or look. A lot of my experience can be described as just exhausted. There's maybe two days a week where i feel okay if I'm lucky. Anyway- I'm sorry if this turned into a bit of a rant but you asked those questions at the end so I thought i would share my experience. I know it's not quite as bad as what you're going through but, in lots of ways i understand the feeling. I hope you can find what helps you and live in better health. You're such a bright loving person and I hate to see the pain take away your ability to keep living in your light and love. It's really difficult, but I believe in us, we can get through this! 💕
I'm a bit jealous with 2 out of 10 times, I've had many, many doctors and only a couple have made any difference. I've also been told I have to wait till it gets worse. Our health system is fundamentally broken, by design. Other than those few doctors, a great chiropractor and a great massage therapist really changed my life for the better, but it did take years and ya, I paid out of pocket. When my chronic pain went away I did become a different person and was worried that my partner wouldn't like my 'new self'. Thankfully, it has made our relationship better as it interjected much needed positive aspect into our lives. It is good that you are figuring this out while only in you 20s.
I get it. I’m 49. Grew up with constantly having issues being sick, then chronic headaches and migraines at 11, rare infiltrating endometriosis as well, later diagnosed with early onset arthritis, fibromyalgia, Hashimoto’s, adhd, hypermobility syndrome, social anxiety, near agoraphobia, GAD, spine issues (mine is out of alignment forward to back rather than side to side) degenerating desiccating discs, cervical lordosis, occipital neuralgia, tmj which triggers the terminal nerve abs with the comorbidities, two of my docs figure also asd. I’m still hunting for answers.
Two years ago I started having issues with my knees and tailbone, they were hurting terribly and so I couldn't sit, lie down or walk without pain. I went to quite a few doctors and they only gave pills, creams that didn't really help and only eased the pain a little for a short time. They also suggested steroid pills, very expensive injection treatments and a surgery to change the form of my knees but neither options were very tempting. Then I went to a chiropractor and only after the first session the pain has actually stopped! I couldn't believe it. To be fair I had to go back a couple more times for some fine tuning and he gave me homework to make sure there is no relapse. The only thing is that you have to find someone who is truely good. I tried out once a different chiropractor and he did more harm than good... But if you find someone who can be trusted I would definitely recommend to give it a try, even if it requires more travel.
For me it's healthy eating, avoiding gluten, maize and soy, using comfrey on joints that hurt, having magnesium rich foods or salts in bath and building muscle tends to help with the pain since it creates a stronger threshold after.
I'm so sorry you were in such pain and can totally relate. Your videos are always so helpful and comforting in a way I can't describe. Since I'm following you I started a journey of acceptance and accomodation for myself I didn't let me do before.. I always beat myself because I strongly think I developed endometriosis because I lived so many years in stress and not knowing I was autistic. So many of us are in these conditions and it hurts so bad realizing it. Even the doctor that diagnosed me autism said I have to reduce the stress because I will probably develop an autoimmune disease. Now seeing you talking and saying these things felt like a big hug, like we were all together talking about these hurtful things and sharing our experiences. I have high tolerance to pain and everytime I explode is because I can't do things like I used to be before and I'm not that person anymore and probably will never be and this is very very painful to accept. These feelings and thoughrs are so difficult to clarify to us but you did it so well that now its a little clearer for me too. Thank you so much for sharing your experience, I sincerely hope you're doing better right now. ❤
I have something called McCune Albright Syndrome and I live with all sorts of pain and disorders/ diseases. I know what you’re going through. Thank you for sharing about your experience and being vulnerable and transparent about it. So many people struggle with chronic pain and undiagnosed (and diagnosed) health conditions and suffer in silence. We all suffer in silence and on our own ultimately, but it can feel good to be able to share to others who can understand. The power in having a supportive community cannot and should not be underestimated. Being connected to a patient advocacy community can be and often is a life saver. Videos like yours are often life savers. I was having a hard time connecting with my body but after listening to this I feel much more connected and less alone in my experience. (And it’s worth saying that I have about 30 years worth of experience w managing my health and I have a big team of health professionals who are able and willing to help if I ask for it, and I still have many days when I feel like you do now. The issue is that the symptoms are untreatable or need holistic treatment and are relentless and permanent and progressive; the complexity gets to be overwhelming so meltdowns and shutdowns are just part of the course). I hope you feel better soon. Sending hugs ❤
I've been having this same download the past year. It's taken a while but I am finally making progress - quitting ultra processed food, alcohol, smoking and other things, starting to exercise more, stretch more, prioritising me time and sleep has all made a huge difference. I'm still making mistakes all the time but every time I do I REALLY feel the difference, and it pushes me forward even more. Wishing you and everyone else here so much love and luck with your journey 🙏🏽 I hope we all get better together 💛
👍👍 I really feel for you, Irene. For what it's worth, my own chronic pain is closely connected with my mood and while the pain is never going to "get better" my mood absolutely improves and changes all the time and so sometimes one little thing gets better for a while and it makes everything else get a little better too. I'm really hoping for you that things start to feel a little easier as soon as they can, whether its mood first, or pain, fatigue or hormones, I really hope you get a bit of rest just as soon as you can. I don't have pain free days but I do still have good days. I am going to reflect specifically on my relationship with my body after hearing your thoughts today, so thank you for your insight 🙂 Speaking on my own experience in the healthcare system I was journaling recently about chasing doctors, getting rejected, making appointments, feeling ignored and all the anger and exhaustion I feel from trying to get help. I'm sure there's a term for it already but I ended up labeling these feelings as "diagnosis fatigue", anyone relate? Lots of love everyone 👍👍
Hello Irene, thank you so much for everything you do. Your videos are so helpful and you're such a sweet, genuine and articulate person. I'm sorry you're going through this chronic pain right now. Physical pain can be so mentally exhausting to deal with. I wish there was something I could do. I have autism, diagnosed at around age 16, as well as some physical health challenges. I have experienced the pain of being completely invalidated, dismissed and straight-up just mistreated by doctors who didn't take my problems seriously. The health care system has serious flaws that need to be addressed still. I see you and know that what you're going through is real and it is clearly excruciating. When I am feeling awful, I like to rap myself up in a soft fleece blanket and sit in the dark with white noise and let my mind go blank. None of this of course cures my problems, but it does add some peace and comfort to the pain. I have found your videos so relatable and helpful. I just want you to know that you've got a lot of folks here who look up to you and are sending you love. Take as much time as you need to rest, don't push yourself to work or post things if you're not feeling it. Keep being awesome, thank you again Irene, sending you love.
I ugly cried HARD while listening to this. I'm making my therapist watch this. Thank you for putting words to something I've not ever been able to describe.
I don't know you but I absolutely Love you you are truly helping me get through the same issues. I a 36 year old female who has never been diagnosed but I am 100 percent sure I am autistic. I have scoliosis anxiety and I have difficulty talking digestive issues im seeing a sleep specialist had surgery when I was younger for scoliosis but within these last couple of years I have been dealing with other health problems too and some days I barely can walk it's painful to stand on my feet the doctors dont even know how to treat me . I would have never even been aware that I'm autistic until I began ny spiritual journey which was also a couple years ago. Thank you for your videos and transparency so much coming from someone who have masked her whole life . I pray you see this and I pray that you continue to share your experiences. ❤
Girl! How did you even film this? I had an excruciating migraine and I just had to stop everything, couldn’t even finish washing my hair. Sat in the dark on my bed and drank two Tylenols. I couldn’t even cry because it would make the migraine worse. Much love and health and wellness to you. ❤
So much love to you Irene!!❤ Is there a link somewhere on here where we can donate some money to you? It feels like a thank you for all the ways your videos have helped us all xx
Hi Irene, I am so sorry to hear that you are experiencing so much pain and I am sorry that the medical system has not provided much help. I don't know if if you have tried Physical and/or Occupational therapy before. There are therapist out there that specialize in chronic pain and they can help you. PTs and OTs also understand how autism can exacerbate pain symptoms and limit function. I am an autistic physical therapist who lives with chronic pain and works with individuals who have chronic pain conditions like Fibromyalgia and endometriosis. I want to encourage you like your videos have encouraged me. There is hope and healing for you out there and with the right care it can be better than it is today. If you have any questions I can point you in the right direction.
"some days are really really bad and some days... it [just] hurts" that hit me so hard.I had to digest that for a minute, because no one had put it into simple words for me before. I was diagnosed with fibromyalgia at age 20, 5 years before my autism diagnosis. I've had breathing problems for as long as I can remember, the pcos diagnosis came recently right during a burnout. I had constant headaches and stomachaches since elementary until around college, the doctors never could figure out what was wrong, and looking back i'm almost positive it was just being extremely overstimulated and I didn't have the right words to communicate that. it scares me how much otc headache and stomach medicine I used to be given. no one around me wants to acknowledge my diagnosis for any of the health things or the autism, so i'm stuck draining the reserves of my reserves to mask. its so difficult and I feel really alone often. this video made me cry, I just feel seen
I can hear (and see) how agonising this is for you, I really hope this gets better for you soon and I understand to a limited extent (everyone is different) how much it suuuucks and affects your quality of life. I had tendonitis in my wrists and ankles, chronic migraines, back pain, some intense pain in my thigh that I was told was a pulled muscle but they don't usually take a year to get better and hurt the whole time. I was basically housebound for a year, couldn't lift a fork without pain and drank through straws so I didn't have to pick up the glass. I also think I'm autistic and maybe adhd too, as much as those distinctions serve to pathologize as well as potentially help. I'll have assessments when I can afford to, but for now it's pretty much just a strong suspicion. All of those things got better ('cured', in a sense) when I learned about Tension Myositis Syndrome and the late Dr Sarno, Dr Alan Gordon of the Pain Psychology Centre, Nicole Sachs' podcast or youtube videos, etc. Fibromyalgia is one of the more common problems that leads people to the work. I'm very scientifically minded so initially it sounded like a load of crap to me, but through the journaling and letting myself acknowledge my 'rage' (unfelt emotions) and doing some serious introspection I banished the pain. Kind of. It still comes back every now and again in different forms and it's appeared in other ways since then, but it's nowhere near the level it was at before and I know that I can come back from it by just asking myself "what's up?" with an understanding smile and a willingness to listen. I don't think YT likes links, but you can go to the TMS wiki (google it) and read about it. My life was saved by it, it sounds like you're in a similarly dark place. So if anyone reads this comment and decides to check it out, I sincerely hope it helps you understand the pain and understand yourself. My autism and adhd research has been a relatively recent thing, and I'm still trying to figure it out in the context of my life and also in the TMS work but I'm hopeful!
I'm in the same boat. Autism, ADHD, interstitial cystitis, gastroparesis/GERD/functional dyspepsia, dysmenorrhea/endometriosis... the chronic pain started about two years ago pretty much out of the blue (my early 20s), and it got so bad that I couldn't sleep, eat, drink, or walk. Doctors were no help. I have slowly pulled myself out of those bad times. Today I still deal with daily symptoms but they are quite manageable. I have full faith that it is only a matter of time until I am fully healed. And even though it was the hardest time in my life, I am very grateful for all that I learned through this process. I can confidently say that I am much happier than I would have been if I had never had any chronic pain conditions. Remember: you have all the healing potential you need contained within you. you can (and will) heal. take care of yourself, show yourself love and compassion. I was my own worst enemy. you don't know what the future holds. acceptance. your body is going to do what it is going to do. let go of any preconceived notions of what this experience should be or what experience you should have, trust the overall process: trust yourself.
I recently was diagnosed with autism and I was diagnosed at birth with sickle cell anemia(I also have scoliosis which has caused severe back pain). It seems majority of people don't know what sickle cell is but to sum up my point, its a disease where chronic pain is very prominent. I'm 30 years old and grateful that I'm still alive because others with my disease around my age haven't been so lucky.....but that doesn't take away from my reality, that being its difficult to keep going and stay motivated to keep living life. So before being diagnosed with autism, Ive lived a life constantly trying to cope with chronic pain and being gaslighted by health care professionals (I have some awful stories) and feeling helpless along with a compilation of difficult emotions that have chipped away at the well being of my mental health. Ive been suicidal several times just because I'm so tried of the pain and feeling like I have no way out of my body. Not to mention feeling wildly misunderstood by those around me. When you pointed out how you get emotional because the pain prevents you from carrying on with your routine and not being able to rely on that routine brings you distress, I cried so much because thats something Ive felt my whole life but it never seemed like anyone else understood that extra layer of complications I have to cope with. So thank you for this video....its truly what I needed when I needed it and its helped me to feel less misunderstood
I'm so sorry for the pain and health problems you've struggled with for so long! I am currently (for the past 2 1/2 years) desperately trying to find out what is wrong with me. I have been to many different doctors (regular allopathic and naturopathic/holistic) and at my insistence they have done all sorts of blood tests, but they always come back "normal" (some of them at the extreme low end of normal, but as long as you're "within normal", they won't do anything). I have felt suicidal at times these past few years, because of the pain and crippling exhaustion, and other symptoms. It does make you feel helpless, when no one really seems interested in finding out what's wrong. They just want to prescribe medicines to mask the symptoms, without knowing the cause! And talk about gaslighting, I also have some crazy stories! Those days when I feel suicidal I try to remind myself that I will feel stronger emotionally at some point (it's usually a few days or a week), so I just ask God to give me the endurance to keep going. I also feel completely and wildly misunderstood by those around me. As a result, I usually just prefer to be alone. It's easier for me that way. I'm so grateful for videos like this, and for this community where we can come to feel understood!
@@christinelamb1167 As much as it sucks that we have to endure this stuff, it also feels good to know theres others out here who understand this struggle :) Im so sorry you've been going through this stuff :/ I can imagine its caused so much anxiety at times you don't need additional negative emotions/experiences. Its an awful feeling when it seems like the people whose job it is to help you find ways to maintain your health (whether physical or mental) seem to care the least about your overall well being smh I'm pretty sure my bad experiences with health professionals alone has taken years off my lifespan lol (my dark coping humor) I admire your perseverance and thank you for the kind words! I pray you get some answers soon because you deserve good health care and you deserve to be treated like you matter!
It was researching the link between autoimmune disease and bullying that led me to the ASD diagnosis. I think ASD ppl get bullied so much and bullying often leads to developing autoimmune disease.
Sometimes all I can do is use my thc oil and watch movies or listen to a book. There are a lot of different strains to try these days, but I look for the ones that provide relaxation & relief from chronic pain.
turned 18 this year and have been diagnosed with adhd, (juvenile) rheumatoid arthritis, and ankylosing spondylitis in the same year. pain is such an oddly abstract feeling that i tend to have a lot of difficulty expressing what i’m experiencing - what you said about having a high pain tolerance and a low threshold for discomfort is so real and it was so soothing to hear what i’ve been feeling said so perfectly. thank you, thank you, thank you 🫶🏼
Some mainstream clinics in the USA have chiropractors and acupuncture, but it's not common. Also, some chiropractors and acupuncture providers do accept insurance, either directly or if your primary clinic provides a referral. Acupuncture and dry needling didn't help me, but chiropractic and Fascial Counterstrain help me a lot with managing my fibromyalgia.
Pain is such a complicated animal. I don't know if this helps, but I ended up using a multi-pronged approach. Pain is usually has both a physical and a psychological component, and treatment needs to take this into account. Personally, I found the psychological component the hardest - I was very resistant , but I finally worked through it all! Don't discount the power of exercise either. I know it can be counter-intuitive to exercise when you are in so much pain, but gentle strength exercise like yoga, Pilates etc. has so many benefits. I hope you find your winning combo. It also helps when doctors listen and don't just tell you its all in your head!
i feel your struggle so deeply, just got my referal to the ehlers danlos society im hoping they can help me it has been 10 years of excruciating pain. the trauma i have gotten from health care practitioners is disgusting.
You can get referred to acupuncture and/or chiropractics!! At least I’m able to here in California, but I still prefer out of network specialists. I struggle with posture and proprioception in general and i was just diagnosed w Autism+ADHD about a month ago. I just started taking ballet and it’s really helping me connect with a create a relationship with my body that i did not have before :)
I know how it feels what to be in pain…but hearing your painful experiences on dealing fibromyalgia is making me tear up and cry so much 🥺😢. I am very sorry to hear you go through this. …I just wanna ask, have you reached out to your family and have you told them about this discomforting situation. I know a lot of women who distrust the doctor and do not trust the hospital experience 😞. Please know that as your audience, we are there for you, we are there to hear your story, voice and experience. You are not alone Irene ❤. It’s okay to ask family to accommodate you. Because that is what family is for..
Most insurance does cover acupuncture and chiropractic. Problem is the # of visits and/or a deductible… I only get 10 chiro and 12 acupuncture. When I should be going 1-2x a week. Same with massage therapy. Those modalities help a ton, but I don’t have the time/energy/money to go as often as I should. My SI thoughts are much less intense when the pain is lower… I would do physical therapy too, but it takes away from my precious massage visits coverage, which then cost $100 a session out of pocket. I’m having a surprisingly good pain day today. I took a bunch of my gabapentin and baclofen AND saw chiro and acupuncturist back-to-back and had massage appt last week, and did some body rolling with my peanut roller, covered myself in tiger balm and now have 2 heat wraps on. There’s still some pain but it’s not consuming all of my mental awareness like on a normal day. Chronic pain and fatigue absolutely obliterates quality of life. And my PCP has given up on helping me, I have to advocate for myself at every step and it’s not enough… Thanks for the validating video. I’m sad how many people have to deal with this.
Right there with you. 5 1/2 years, doesn’t get easier. People don’t understand. Your channel is so valuable. You are so valuable. I’m a medical cannabis patient for pain. Much better than years of chemicals. Thank you.
Adults saying "stop complaining, you're young, it can't be that bad!"... yet they experience a fraction of it and cry and moan about it. Then maybe, if they dare, they apologize.
I have lived with pain for more than 20 years, iit's amazing how we manage to survive with these every day despite all we go through, most times the doctors don't help they either tell you it's all in your head and most of them are incompetent to find the cause of the pain which is the first step to getting it treated but most people are under-diagnosed.
That might be the case and also most of these pain meds have severe side effects, my wife have fibromyalgia for years but was late diagnosed she has been on some pain meds which have some effects on her I came across a mycologist who recommended mushrooms meds, I was skeptical that it will give the results needed but I gave it a try anyways and to my surprise it has been very effective, there has been some progress moving forward with no side effects.
@Simplyflorencemi get mine from albovegateway
...on Instagram, highly recommend.
Night mare diagnosed Asperger's add hypomobility hsd or eds do you have fybromyalgia pain
….On instagram
I feel for you. We can't escape this awful disorder - even when we sleep. I get an average of 3-4 hours sleep every night. I often spend several hours just trying to fall asleep, and then wake up again 1-2 hours later.
My experience is the same!! The lack of sleep is crippling. We are incredible human beings to endure this pain and lack of sleep and still wake up every day. 😊
Ugh. Same
I have the same problem.
I strongly suspect that I’m autistic (I know for a fact that I’m neurodivergent) and your channel has been so amazingly helpful. So I wanted to say thank you first. I also suffer from a chronic illness (for the past 10 years) and about 2 weeks ago I had the worse flare up I’ve ever had. The pain was so severe I’ve never experienced anything like it. So I deeply deeply empathize with you. And I’ll be sending you so much love and positive thoughts. I sincerely sincerely hope we all (including every lovely person in the comment section) can find relief😢❤
I'm AuDHD with diagnosed Fibromyalgia and peripheral polyneuropathy and I can certainly relate to the 'What's the point of going to the doctor when they're just going to dismiss me as a drug seeker bc they can't find anything or they can't do anything because 'That's just fibro, here's some profen.'
(which ridiculously enough is absolutely not true because Dilaudid in my body feels like they've just given me a shot of saline. Like opiates don't do anything for me so no, I want to know what the hell is WRONG so I can come up with ways to deal with said things)
It's so insulting to be treated like a drug seeker, especially when we aren't even asking for drugs. (Not that there's anything wrong with a genuine request for pain relief. Doctors act like it's an evil trait or something.)
@@Discordia5blame the war on drugs and all that bull crap for that. Doctors are afraid to prescribe anything that can be abused any more.
@audhdvee are you hypermobile? Because I am, and opioids do absolutely nothing for me (I had a spinal fusion surgery and was in an INSANE amount of pain while on a morphine drip at the max dose), and I did some research a few years ago and found out that people with Ehlers-Danlos (including hypermobile type) often don’t get any pain relief from opioids
@@littlesaintKat I don't know for sure, but I'm about 90% sure that I am. I've always been able to bend and place my hands flat on the floor without bending my legs, and I have sprained my ankles so many times I lost count decades ago. I've never dislocated my shoulders, but my knee got dislocated when I was in bootcamp and it's never been the same. It would make sense that that's at least part of why opiates are like water in my veins. (Although, I did have morphine 90mg extended release a few times, and that helped but injections never did? It's so strange how differently different body types react to medications and such)
Thank you for sharing your story with us Irene! Living with chronic pain is so challenging.
A few things that have helped on my journey:
- Functional Medicine doctors
- Inflammation support (supplements + reducing inflammatory foods)
- Healing Trauma/mental health
- Creating a lifestyle that allows for the flexibility my body needs
In addition to the above, here are a few additional things that have helped others I know who have chronic illness (autoimmune):
- Low-does Naltrexone
- Continuing to uncover the layers (I know someone else mentioned Ehlers-Danlos Syndrome, and hypermobility as other layers, common for Autistic people)
- Finding support for other areas of life
- Low stress lifestyle/job
I've been on a journey for the past 11 years of uncovering and healing health challenges. In the past 2 months, I've realized and started to accept that I'm Autistic. This has given me a different lens. My journey started with going to a bunch of different doctors and getting diagnosed with IBS, then anorexia, then SIBO (small intestine bacteria overgrowth), iron deficiency, migraines, hypermobility and I am now in the process of a potential PCOS diagnosis.
I struggle to accept my limitations more than my diagnosis. Taking "no" for an answer has never my default, and so I keep searching. But because of that, I have also found more answers and found healing one layer at a time. It is super frustrating when doctors don't listen or have given up on you before they even get started. Keep searching! There are answers and options. 😊
Thanks for this!
BTW I quit gluten, prob gonna quit dairy.
Have you tried these, and if so what were your results?
I'm also trying hypnotherapy!
Wishing you the best!!!
thank you for this detailed list of what’s helped you on our journey! People think of this as a disorder needing fixing, when really we have sooo much to offer society and just have some different support needs.
the current system is not “health care” it’s a 1 size fits all approach that leaves so many people frustrated
blessings on yer journey!
My pain specialist Dr brought up low dose naltrexone, but I’m skeptical. How long does it take to make a difference in your experience? And is it a significant improvement or just slight? Ty!
your videos on meltdowns and shutdowns in particular have done so much for the relationship between my parents and I, coming into an autism diagnosis after 22 years undiagnosed. You've helped them to understand me, helped me to understand myself, and hopefully, helped yourself to understand. I just wanted to thank you for everything, and I am wishing you all the best; you are undoubtedly experiencing an incredible pain, and I am desperately hoping for your comfort and good health.
You articulated my own struggles so completely. I hate that so many of us are experiencing this same horrible reality. And most of all I hate going through it myself. I cannot be the person I want to be because I am in pain all the time and I can no longer recall not being in pain. It’s awful and I’m so sorry for you and me and everyone else that this resonates with.
Not remembering what it’s like to not be in pain is so sad now that i think of it but that’s really how i feel.
@@jubiterr Weed helps a little bit sometimes.
I think that a video about having a high tolerance for pain but low threshold for discomfort would be really helpful and informative! I have always pushed through pain even when I shouldn’t, but have what feel like meltdowns when I get sick or am immobilized by it. I have an ADHD and learned at 24 that I am autistic also, although not Dx. I’m 26 now and channels like yours have helped me immensely to understand a lot of the difficulties I had growing up. I also suffer from chronic pain although it’s more joint and arthritic related and unfortunately have been treated the same way by doctors. Thank you for all that you do! I don’t know if it’s been said before, but I’ve found that for me when it’s difficult to take care of myself (because I don’t see myself of any worth/value) I like to pretend that I’m taking care of the child version of myself. I think it’s easier because I love kids and see them as blameless for their surroundings and that they are deserving of help, even when I don’t think I am
I agree! 💯
Personally, I feel like if you have chronic pain, you are likely to disassociate from it until it gets to the point you are having a meltdown. I guess it could be called having a high pain tolerance, but just because you aren’t in touch with the pain doesn’t mean it isn’t there. Similar to emotions and trauma. My mental breakdowns always occurred when I was in unbearable pain but I never realized it until it was too late because I have been chronically ill for a decade and have to disassociate from it to survive.
@@MyDuckSaysFuccYeah I understand that, I've been there. I do think it's possible to be more present and head off the meltdowns but you have to orient your whole life experience in that direction and it's hit or miss how much you can keep it up with everything life throws at you.
This is so true! I'm 45 but had never put that into words; 'high tolerance for pain but low threshold for discomfort' - exactly! Thank you for sharing, and indeed a great idea for a video.
Might be a good idea to look at/into Ehlers Danlos Syndrome (hypermobile type; type 3), and Hypermobility Specturm Disorder, they're reasonably similar. Pain and especially joint and arthritic-feeling pain come along with those conditions, almost always. There's a strong correlation with those conditions I mentioned and autism. Some conditions that are a common part of it too are POTS (postural orthostatic tachycardia syndrome) where blood doesn't flow effectively upon standing, digestion issues, etc. Definitely worth at the very least a quick search of, also as Ehlers Danlos Syndrome goes undiagnosed very often, not a lot of doctors are know of it sadly, even though it's not super uncommon.
Felt. I have hypermobility & just always thought it was normal to wake up in pain 100% of the time, & for most of your wake-ups in the night to be because you're in pain & need to reposition. I can't be comfortable in a chair without good arms because my unsupported body can't relax without being incredibly uncomfortable. a bed without 8 pillows & blankets to create a supportive nest LITERALLY feels just as bad as sleeping on the ground so when I travel I'm the *most* extra.
Just like autism & adhd, figuring out that I had it was a relief & gave me the language to communicate what I needed.
Oh, this is so hard for me to hear as someone who treats chronic pain in dogs and cats, and thinking about all the things integrative therapies we do for our patients that lead to profound results. You as a person should be able to have access to the same care, and providers who listen to you and want to help you. I hope you can be referred to a pain specialist and can figure out what the pain is stemming from - one condition or multiple. Pregabalin, low dose naltrexone, ketamine infusions, acupuncture are amazing.
This video is such an important video to me. Makes me feel so validated knowing how real my experience is and that others experience the same
I just wanted to say that I see the bravery it took to share this, and I feel touched by it. I share many of the same diagnosis and am disabled by chronic pain, migraines, etc., and you speak truthfully and vulnerably about the experience in a way that feels profound. We need more voices lifting us up in this community, and I think that’s exactly what you’ve done here. Thank you for sharing this with us all.
Do you have fybromyalgia
The pattern I have noticed with myself is that when I’m eating healthy…well, healthiER…I have less pain. Not gone entirely but better. Lots of fruit in particular. I love your channel btw! Just found out I was autistic/adhd last week (I’m 46) and been binging you and several others since.
I enjoy the more personal vlogs. I've got Lupus, Antiphospholipid Syndrome, Autism, and so much more. Was diagnosed when I was 16 and a half (I'm 43 now) so I completely understand your struggle. As cliché as this may be, you're not alone, and even though we hear this all the time, we still need to hear it, because strangely, it lessens the burden in some way.
Thank you for sharing your videos, especially when they are raw and emotional as this one.
You're awesome!
You're awesome as well!
Hope you're doing better!
I’ve been a chronic pain goblin for 20 years and am finally seeing doctors for it because I can’t do it on my own anymore. It’s a wild ride.
What are you suffer ING with
Fuck, 20?!
Almost 10 here and it's hard.
@@wasabi333 have you got fybromyalgia
I’m so sorry you’re experiencing so much pain, but I really appreciate you sharing this very tender and raw moment to show what it’s like to go through. If you haven’t already, please check out the podcast “The Cure for Chronic Pain” by Nicole Sachs. Her work centers around the concept that chronic pain, although 100% real and focused on certain physical conditions or areas of the body, is not necessarily caused by those physical structures. Instead, chronic pain has its genesis in the mind-body connection, where the brain actually causes pain to occur in the body, in order to distract you from an even greater emotional pain, usually the result of some unresolved emotional trauma. This occurs most prevalently among people who tend to be highly driven, perfectionistic, and people pleasing, among people both with and without ASD. The cure, according to her practice, is to use a type of brutally honest and open journaling to call out those unresolved emotional conflicts and respond to them in an emotionally powerful but safe way, by putting them down on paper (or digital), then after you’re finished, destroying what you wrote. By doing this, it addresses the unresolved emotional conflict by finally giving expression to your own emotions, which eliminates the reason why your brain was causing your body to create pain in the first place, and the chronic pain symptoms quickly begin to fade.
She was recommended to me by a friend who was experiencing a great deal of chronic back pain, and I’ve found that listening to her has been very insightful. “The work” (as she refers to her journaling style) makes a lot of sense to me, as I find using writing to be a very effective way to express and process difficult emotions, which can be very cathartic and freeing. I hope you’ll give her a listen, and I hope that her technique might help you to once again live a pain-free life. You’re such a wonderful person and a beautiful soul, and I hate to see you suffer so much. Sending you love, caring, compassion, and lots of healing thoughts. ❤
Oh, and while typical pain medication doesn't tend to help with fibromyalgia pain specifically, antiinflammatories like ibuprofen or aspirin do help reduce system-wide inflammation and help me tons with tendon, muscle, and joint pain.
I rarely find myself writing comments, but I just wanted to say that I wish I could give you a big virtual hug.
Nearly every detail of your story closely mirrors my own; from the stage of life that we're in, to our experience being invalidated by the medical system, to the worsening pain that makes every day a fight to survive.
I've been trying to find the answer behind my pain for years now. Then I was diagnosed with autism in my mid-20's at the start of the year, and after the initial grieving period it's almost like something collapsed. I had to buy a walking cane with a fold-out seat for my lower back issues, and some days the fatigue, the physical pain is so debilitating that all I can do is lay in bed, wishing for better days. Wishing that I could function like I used to, be creative, just live like I used to. I wrote and released a song about my diagnosis this year, a message to my childhood self, as a way to cope with it all.
Thank you for being open and vulnerable, sharing your life's experience, and helping all of us in this big, scary world feel just a little bit less alone. The truth is that living here is a triumph in itself. Wishing you and everyone like us out there light and comfort on this path that we bravely walk. 🤍
At work, people often hear me say, "I need to go meditate. I'll be right back."
I kept seeing this on my recommended, and as a neurodivergent woman with fibromyalgia, you spoke everything I’ve been afraid to say out loud. I’ve been flaring up because of the summer heat, and it’s been taking all of my motivation and energy. Thank you for making me not feel alone.
For the longest time my experiences have felt so invisible, thank you so much
What I hate most about fibromyalgia is the lack of understanding everyone around you has. No one understands that just a couple hours of work can make you bedridden for the next 3 days. Quality of life can be so low with this disease, but no one will ever know or believe because 1. No one actually cares about others pain all that much, and 2. It’s invisible. If you are young you will especially get dismissed and diminished. I have lived with it a decade from my teen years. Even having family with it, i still don’t feel like my effort is recognized by anyone. Choosing to go on each day knowing that you will continue to be in significant pain for ever, and any normal everyday action can make it significantly worse, takes a lot but no one will believe it just by looking at you. I live a middle class lifestyle with others looking after me, enough money to have hobbies, and yet I feel like my quality of life is still low. To be honest I’ve been passively su*cidal for years. I’m in my mid twenties now and it seems like working is going to be impossible unless it’s a very easygoing job. I try. But I honestly would stop choosing to be here if my living situation changed, because it’s just not fair to be tortured by your body 24/7 and have to work in that state. It’s impossible to go on very long for me at least even with a part time job let alone 9-5 and guess what, if you don’t get money from working many people don’t have the capacity to survive. And disability benefits for fibro is far from accessible. Society asks far too much of the chronically ill. When I see homeless people on the street, I know I would be like that if not for family and I just can’t comprehend ending up there.
I empathize with you on the passive feelings. From a very young age I knew I did not want to do all this forever. And it feels like people can’t understand that. I appreciate you sharing, it’s not talked about much.
i have adhd and while i don't have chronic pain, i have chronic fatigue and very very low energy, ever since i was little. i could only play with kids for a few minutes before i was exhausted. now i'm 43 and i seem lazy but i just CAN'T. now i'm starting to have sciatica problems from sitting all the time but i have no energy to do heavy exercise or move around a lot. i've spent 6 months in bed bc of intense pain so bad even morphine didn't help. and the worst part is people think i'm just pretending to be worse than i am or i'm just lazy? it's like an invisible "disability". i have a low pain threshhold (i'm a redhead, and redheads have a low pain tolerance). a doctor at the ER even yelled at me bc he thought i was faking it! i also don't trust doctors. for the most part they are useless. anyways, i hope you feel better
If you're interested l, Fascial Counterstrain is a gentle hands-on therapy provided by a specially trained physical therapist (my insurance covers it). It's helping with my chronic pain and I've heard it can be used to treat sciatica, too. ❤🍀🥄
I got my chronic pains when I was 22 and I turn 40 this year. I have tried so many things, medical and pseudoscience. But as you say the biggest issue is not being heard and helped by the medical proffessionals, just ignored and not believed. It's beyond hard. This year I got my ADHD and ASD diagnosis. It's been hard to accept the pain, the pain making the ADHD worse because I can't move like I used to. I can't use the same coping mechanisms etc I did when I was younger. Realising that I had the ADHD and ASD all along wasn't nearly as hard as the pain, but it does pose one problem I have a hard time dealing with and it's being seen differently, treated differently once the diagnosis is revealed. And I mean by doctors just as much as others. I really hope you get some help with your flare up. I suffered though one just this spring from february to late may. I really hope you get help faster.
Seams it's the brain chemistry causing our pain had pain 26 years from CFS now fybromyalgia
I had a meltdown today because I had to call out of work from pain+mental health. I find pain always makes my brain worse. I really relate to resenting the body and its problems and being jealous of people who live without those problems and not being able to handle it sometimes, worrying that we failed to take care of it. Thank you for reframing our youth in prospective to this (I'm 27 too) instead of saying why are we having so many health problems so young, saying we still have time to solve those problems and live without them. It does seem like the "pseudo-sciences" are more holistic, more up to date on the latest health research, are REALLY expensive, but a lot of people are havjng success with complicated cases with them as opposed to conventional medicine. I agree with the other comment that functional medicine is a good bet, I wish I could afford it right now. Don't worry about your uploads, we know you're doing your best ❤
I am angry that your doctors are doing nothing for you! Wait until it gets worse? What kind of doctor would say that?! 😡
I have chronic pain and have autism as well. I understand what you are going through. I been seeing a doctor as well. I cry and been feeling hopeless,and believe me,I understand what you are going through. This video helps me in a way that I am not alone,because as someone who has an autism spectrum feeling overwhelmed with life challenges in general,this video has HELPED ME SO MUCH! I hope you’ll not have ANY MORE chronic pain very soon (same with me as well),and I am sending you love and hugs your way. ❤️🤗🙏
Yeah I would switch doctors immediately if one told me that.
I understand how you feel. I went to the doctors for stomach pain and to get diagnosed for autism. She said she will make a referral to a G. I. specialist, but she told me that last time and never did. Then she told me I couldn’t get an autism diagnosis. This isn’t the first time she told me no or she couldn’t help me or send me to a doctor that will help with my health. I feel like this doctor gaslights me so I’m going to go see if I can switch my doctor. I just want to be accommodated for my health. I want to not worry about being in pain or feeling lousy.
Yes, get a new provider! If your clinic has a mental health or behavioral health department, you may be able to look at their website or call their nurse line to see if they offer adult assessments for autism, what the process is (does a primary care provider need to make a referral, or a counselor or another provider?), or if they know another clinic or independent provider that does.
A county or organization in your area might also have a phone number or website like 211, where you can ask for names and contact info for providers in their databases who accepted your insurance, offer sliding fees or pro Bono work, or provide a specific service, such as autism assessments for adults.
A lot will only take children, but there are still folks out there who see adults.
If you have insurance, their customer service number on the back of the card is another place to start.
Best of luck 🍀🤞❤️❤️🥄🥄
Edit: Public and university libraries usually have community boards showing local resources, or librarians who can point you to an organization that might help.
University clinics that serve the public also tend to take insurance, and might have providers who see adults, not just kids.
@@gamewrit0058 Yes, I understand. I will look into resources to get a diagnosis. The nurse told me on the back of my insurance card there’s a phone number to call for mental health. Thank you. 👍🏻😊
...someone put it into words. Thank you.
Thank you so much for sharing this with us. I too live with chronic pain & have been struggling for 10years now. It has significantly changed me. 90% of each month I’m in unbearable pain due to endometriosis & debilitating migraines. Can’t work, can’t exercise, living such a limited life. Doctors suck. Our healthcare system sucks. They have failed me.
This year I made a promise to myself to put off seeing any more doctors. I see this as self care. May sound like bad advice to some who don’t have to spend years of theirs lives dealing with the stressors of our healthcare system. I couldn’t deal with yet another year of the rollercoaster ride of hopeful, awaiting appointment openings for specialist, awaiting results and then ultimately a major let down and big bill. Rinse and repeat. So I am prioritizing rest, play, pleaser, fun, boundaries, genuine authentic living at al costs. Trying to stay present and appreciate the good days with minimal pain or rare ones with no pain. It doesn’t remove the fact that my body is struggling, but ot helps me find peace and respite. Eating healthier (less junk food vegan and more whole food vegan) has helped me tremendously.
My advice, Temper the dark with light. Focus on gratitude daily, multiple times a day. Give love & feel love. Be kind to yourself. Remain authentic. You are such a light to your viewers we are so incredibly lucky to have you. I feel for you. Hugs
Thank you for taking the time to comment this! I just had the same thought this morning, after having a meltdown yesterday at just the idea of going to see another neurotypical medical professional who doesn't understand, usually doesn't really help and at worst re-traumatizes me.
It was helpful to read this from someone who has already come to + enforced this decision. How are you these days?
Sending all the best your way 🌻
I feel you, sweetheart - seriously. I have been exploring the potential that I could be autistic and ADHD over the past few months and so much of my life makes sense in retrospect now. I've suffered with chronic back pain since I was a child and was never given a reason for it. When I feel sciatica coming on, I either press my thumb or a tennis ball really hard into the side of my buttcheek (you'll know it when you hit the spot, because it HURTS). And then the pain and sciatic symptoms subside for me. Also, a wireless TENS machine helps a LOT with my pain too. I hope some of this helps, if you don't already know about them. Gentle hugs!
I have recently diagnosed ADHD and undiagnosed autism. I endured severe physical and emotional abuse growing up and have Crohn’s Disease (an autoimmune IBD), knees that constantly dislocate, arthritic symptoms, and so much back/neck pain it’s unbearable at times. I’ve been consistent with yoga for a couple years and recently have been meditating more. I want these two practices to become daily habits for me, it’s just hard to even get out of bed some days. I really resonated with this video and I hope you are able to find ways to help your body. I just found your channel and I am so so thankful you made it!! I feel so seen and validated. much love 💗
I wish you all the strength you need to handle this.
Thank you for posting this video. I was looking for information on the link between chronic pain and autism. It has helped me realise how common it is for us.
A friend recently asked me where my physical pain was and the only answer I could give her was everywhere and all the time. She encouraged me to look into this.
I have TMJ which triggers cluster headaches & chronic back, neck, and shoulder pain. I think it all starts at my foot; I have one arch that’s higher than normal and it ends up throwing my whole body off. I am the same way with sleeping, I can only breathe when I’m lying down on my stomach and that makes everything so much worse. My doctors dismiss me all the time. I’m so tired. Thank you for uploading this today, it’s a particularly bad pain day and I’m dragging through work until I can go home and try to nap. And of course I can’t get painkillers because you know, I’m in my early 20s and probably just drug seeking.
Have you tryed a tmj splint ime awaiting.mine
@@Truerealism747hi. no, never got that far in treatment with doctors. I went to a PT and found out the root cause is tissue damage in my neck, which is likely from long term postural issues. PT exercises did nothing for me but massage did. Look up self massage techniques for fascia release or gua sha. Over time I’ve been making it a habit to have correct tongue posture, stand straight, roll my shoulders back often, etc. it’s helped a lot and I have no TMJ symptoms right now, I just have to be extra careful not to clench because I am prone to carrying tension there.
I know this video is from a few months ago, I hope you’re feeling better now. I’m waiting for a private assessment for Autism, I’m 35, I have fibromyalgia and joint hyper mobility. I can definitely relate, I gave up going to the doctors once I got diagnosed with Fibromyalgia, I’m fortunate they don’t seem to mind prescribing me strongish painkillers. If I didn’t get regular pain relief there would be days I’d be completely bedridden. I’ve always suspected I developed it because of trying so hard to be ‘normal’ and suppressing my emotions, I had no idea these type of issues were prevalent amongst this community. And Yep I totally understand about being a different person when you’re in pain.
I just realized that mosquito bites could be a great analogy for how pain tolerance is different from discomfort tolerance, because I've had a spider bite too which hurt more but I didn't even notice it for three days, while a mosquito bite isn't that painful but it's so itchy and obvious
Sending love ❤ It sounds really uncomfortable and exhausting.
I deal with bad menstrual cramps (possibly Endo) but I havent been diagnosed with it yet. I have an ultrasound I need to do that I’ve been putting off. What really was affecting me daily was some serious lower back pain and it lasted at least half a year to nine months where the pain was awful & constant. I couldn’t get up and down without it hurting and the pain was bad enough to audibly be in pain. Not sure if it was from an exercise I attempted or from lack of exercise and WFH.. but it was a lot to deal with and just difficult to do every day things. I can empathize with how you’re feeling.
The video you shared about thanking our bodies for all that they do to keep us alive was a great reminder to hear. I’ve had that realization before.
The oral progesterone pill greatly reduced my severe PMS, and it makes life liveable for a friend of mine whose endo pain had her bed bound; it also stopped her excessive bleeding that was causing other health problems.
i have been researching trauma in the body, and how they are intertwined. i'm learning how trauma can be a root cause for some health issues. take care of yourself i am rooting for u, and everyone else with chronic pain. know your limits.
Acknowledge the pain and feel it, attempt to find its origin, and learn how to heal one day at a time
I've been grappling with that one too, and have come to the conclusion that it's important to look at both trauma and chronic stress. Stress as a concept has kind of fallen out of favor, but I'm coming to understand that is does similar damage. Jessica at How To ADHD just did a video on the long term health effects of pushing yourself too hard for too long, and this was prompted by her realizing she needed to take a break from long hours writing her book. Orion just ran a piece on burning out, in part due to a long hard push as well. I've finally realized that my decline in functionality in recent years is largely due to pushing myself too hard for too long in my job, and further degrading my already-poor executive functioning, which has further impacted my ability to emotionally regulate. It's easy to overlook in a society that prizes hard work and success.
@@jimwilliams3816 yes!!! thank you for bringing that up. i have also been looking into that too. gabor mate and his ideas have been revolutionary in my process of understanding what even happened, and is happening to my body, as it exists in the world everyday.
watching orions burnout video was a reflection of being autistic, regardless where you are located in the world. being violated... i feel for him so hard.
we really really need to take it one day at a time. we need to accept great things can still happen for us without pushing our limits.
Lyrica really helped me with the "feeling like muscles turn to rocks" - its also rxed for fibromyalgia.
I am here witnessing you and sobbing with you. Recent Lupus diagnosis and have had a horrible migraine that's made me vomit for the last 3 days. Its resonating that our bodies are just trying our best
OMG, that is so true; the thing about people not realising you're struggling until you can't hold it back anymore. The same applies with autism and personality disorders, people always seem like they don't believe you because they've known you for so long and you've never expressed it to them.
As someone with both of the above, as well as Dyspraxia; chronic pain just becomes part and parcel. Stick with it though and try to figure out what the best strategies are to minimise it. You can do this.
Praying for your healing sister. I have fibromyalgia too. It’s painful and the pain often shifts from one part of the body to the next.
I'm officially diagnosed and yeah, I have bruxism and my body hurts and I sleep terribly.
I actually waiting for doctor appointment and I'm pretty miserable, but I won't give up.
Late aspie diagnosis here. I used to have excruciating pain for many years. Never got a diagnosis, but fibro myalgia was floated as a possibility.
I found that earthing does help to some extent, but what did help most was electronic foot baths. This wasn't planned. I had been on sick leave for years and the job agency wanted to send me somewhere for evalutaion of my abilities to uphold a job. I ended up at an alternative therapist - what are the chances...? - and he had just bought a couple of these baths. Being an electronics engineer I told him he was stupid believing in this Chinese BS. He told me to shut up and enjoy the fact that I would be sitting for an hour once or twice a week with my feet in hot water. Conceeding he had a point I accepted. After about two months, I realised it had been quite a while since I had had the usual debilitating pain (at least once per week).
Yes, I bought a bath for myself and havent had that kind or level of pain since summer of 2011. What the baths does, I presume, is like turbo earthing drawing garbage from the blood stream out through the skin. The water often have a deep brownish tint and a metallic smell, like really old bed sheets that have turned yellow and smell bad.
sorry to hear about your struggles, hope you get better.
also, I didn't even know fibromyalgia was even a thing. I have struggled with chronic musculoskeletal pain since I was 13-14 years old. for about 10 ten years now, it seems. did all the xray of every joint, of my back (they found scoliosis though). all of the blood studies for autoimmune disorders - nothing wrong. doctor told me I was just hypersensitive and it's the norm for me. I mean, my pain is probably significantly less severe than yours. But I still feel it everyday and to this point thought it was normal.
Funny thing is, when I first 3 years ago watched videos on autistic traits, I thought "Wait, I always thought it was normal, I always did that". Sad that sometimes because of the lack of information we think our struggles don't matter and we just accept that it's just the way it should be for us.
I wish people had more empathy towards the pain of other people.
Chronic pain invades & changes every aspect of my life. It's overwhelming. I was diagnosed with Fibromyalgia 6 years ago after 11 years of trying to figure out why I was in so much pain. It's never ending. And honestly, I don't always want to be here in this body anymore. But I would never consider taking my own life.
6 yrs ago I switched to a plant based diet, started doing yoga and got off of all prescribed medicine. They made me feel worse. I am currently looking to plants to help with the inflammation. I will be trying golden rod, which is growing wild where I live. I do hope it helps relieve some of the inflammation. I try anything I can to help. I prefer homeopathic remedies. But they don't make the illness go away.
The impostor syndrome hasn't gone away, because so many loved ones feel like I could do more than i am. It's so frustrating.
I honestly can’t remember a point in my life where I wasn’t in chronic pain.ive stopped trying to get any help because I think I’m looked at like I’m a hypochondriac or drug seeking. I don’t want pain meds doc, I want you help me figure out why I’m in pain and make it stop.
I understand you so much.
Oof, everything about this is relatable. You are describing my days--not just the pain, not the specifics, the sciatica, the migraines, everything.
I can see I'm not the first to say this, but I think it bears repeating: look into Ehlers Danlos Syndrome. I have autism and hypermobile EDS, and found out that having one, you're ~5x more likely to have the other. I also have common comorbidities/caused-by-EDS: IBS, Chiari Malformation (cerebellar hernia into my neck), and CSF leaks that haven't healed on their own. Oh and endometriosis made my sciatica worse; my EDS means the hips fall out of the socket (subluxate), and the Endo caused monthly swelling that just made it more common and more painful.
I'm listing these because none of these are things doctors thought of --many doctors hadn't even heard of them, or told me, "your symptoms don't match" -- but all of them were confirmed with tests. (If any of these sound like you, you need to get an upright MRI. It has to be upright, not supine. Trust me.) So I hope this list helps someone else, either you or someone reading the comments section here. As disabled, chronically ill, neurodiverse, AND afab people, usually only way we get good information is each other.
I'm sending so much love and thoughts to you and everyone else like us.
I experience chronic pain and dysfunction in many aspects of my life. I've also fixed many through lifestyle changes, strength exercises, and de-stressing my life drastically. I'm not surprised you have migraines, TMJ, and Fibromyalgia as they seem to be very common in stressed women in Western countries. I'm thankful that you're able to share your thoughts and feelings :)
Personally I've come to terms with chronic pain by expecting it and knowing that it doesn't control my life. It may always be present, I may not always be the best at managing it, yet I'm still represented by this body and the cool wiring of my brain. This comes with my practice of Karma Yoga, I do as I've assigned whilst not being attached to the results.
For over a decade I’ve struggled with chronic pain, specifically gastrointestinal issues that greatly affect my mood and mental health. I know that feeling of frustration associated with going to the doctor, especially when it seems like there’s rarely anything they can do to help. So far, I’ve found that caring for myself and managing my health is a proactive journey. Even 10+ years on I don’t have many answers to why I experience near constant discomfort and the solutions are even more scarce. Still, I try to appreciate my body for all that it’s helped me endure and be kind to myself, even when I feel like it isn’t worth it-because it always is. I really appreciate the message of the clip you inserted and I’m going to try to remind myself to be kinder to my body and not allow myself to miss out on experiences because of the way I’ve been taught to perceive myself. Thank you for being so vulnerable and creating a space where we can have these more intimate discussions. Sending you love 💜
I can't comfort you with false hopes. I don't know if it will ever go away, but what it's worth, you are holding on with amazing strength, and I hope you continue to do so... Warm hugs coming your way ❤❤
I used to massage the aching areas with silicone cups, in the warm shower, helped a little. Need to get back to it now that I have a little more time and energy to spare.
You could try it too, if you like.😊
I've lived with headaches, migraines, and pain since I was a kid, but I was always disbelieved or else told there was nothing that could be done about it, so I never know if it's worth even telling a doctor about anything that I want help with. Most of the time, it's been better for me to figure out what's wrong and then come to a doctor and say 'I think this is what's up' and they'll run tests to see if it's true, rather than me asking them what could be causing my symptoms
I've lost so many days over my lifetime to shoulder, neck, and head pain, and last time I tried to get some physical therapy to help with it, not only was the specialist pretty condescending about my chronic fatigue, then the pandemic started and I couldn't even go in for my follow up, so I just kind of stopped
I also have scoliosis, autism, adhd and also chronic pain. The scoliosis is pinching my nerves and I get numbness and pain in my left arm. I really feel for you and relate to your story! Thank you for sharing this. I hope for healing for all of us who are in so much pain
I have exactly the same, but also with M.E/CFS and Fibro. There definitely has to be a connection between all these disorders, right? Wishing you the best for your healing journey 🌿
@@SOMETHINGTOSLOW yes I have all.these to the last diagnosed last week 43 aspergers.dr schubiner says pinched nerves dint just caused pain though always numbness so I always hope the muscle pain tension us sycosomatic from.the subconscious mind though not working yet I believe it's neurosthenia as Victorians called it
I’m on nortriptaline 20mg at night, it has helped my chronic pain a lot. I’m self diagnosed ASD. Not sure if you’re on medication but that and some strong painkillers (tramadol) on the bad days gets me through. When I’m feeling better exercise is what helps the most, swimming can be good with back pain. Drinking water, walking and therapy. Hope something of this helps. I’ve been where you are and it is so upsetting but I figured it out and so will you xx
Also long term painkillers in the form of 6 month injections are an option too. Advocate for yourself, bring research papers etc.
You don't need to feel bad or lazy about posting this kind of entry. You are allowed, it was good and I think it means a lot to many of us. I so wish I could do something for you, and to be honest that feeling is a gift to me, because I have a hard time connecting with people and can usually only do it through painful emotions. I do not usually cry while watching a video but I did when you ran that TikTok message.
I have only recently started to connect my chronic pain with my neurology. I developed debilitating trigger points in my late thirties, and it's only been in the last year that I realized it was connected in part to my hypervigilance and AuDHD frustration. Now when I get frustrated I start to notice my back starting to hurt. In large part just tensing up. I don't know if I have any namable reasons for my chronic pain. I'm starting to see some hints from throughout my life. My family was not much for doctors, and when I have asked questions I haven't gotten anywhere either.
The best lessons I've learned, in case they are of use: I did do better from learning stretching, moving and muscle toning exercises, and these came from a physical therapist. Oddly they are part of the medical profession, and for some reason you need an rx from a PCP to see one. It is important to find one who understands compromised bodies. The well regarded PT I saw in 2004 was in great shape and showed me ambitious exercises that hurt to do, and I think I wisely gave them up. I next saw a very good PT in 2014 who gave me gentle exercises that I did, and they did help a lot. After that I was rarely bedridden. I don't think chiropractors are pseudoscience, but like "official" doctors they vary. I've had ones that are careful and ones that thought they could loosen up my vertebrae rather too aggressively. Someone who works gently to loosen you up and straighten you out I think has value, though I never stayed straight too long. There is some mandated chiropractic insurance coverage in my state, and the ACA may have added some too, but almost no chiropractor I've seen is in network, because insurance rates are honestly not a livable wage for them. So I've always paid cash.
The feelings of despair in the night, for me, are all about my amygdala running amok. The pain, physical or emotional, takes its toll, but the feelings of doom are almost separate from that -- when my amygdala is at it, it colors everything, and the turmoil worsens pain. Mood affects my physical pain almost as much as vice versa. I'm much better at downward spirals than upward ones, but I can see that the latter is helpful if it can be achieved.
I so hope you will be able to feel better, and soon. I have had things improve, both with my body and my mind. If it can happen to an unmotivated old schlub like me, you do have a real shot at things getting better.❤
Loudly seconding PTs, as well as occupational therapists!!! They've helped a large number with my Ehlers Danlos-related pains!
Also seconding about the type of entry. Going through a lot of chronic pain myself today, and the vlogs are actually something of comfort videos.
Really appreciate your comment~
i’m really sry if this is overstepping or unwanted/unnecessary advice, i just wanted to share that if u can afford it, which i know is of course a massive barrier for sm ppl, but physio can be incredibly helpful especially for scoliosis. i am so sorry u r struggling so immensely. what u said about talking to ur partner ab “what is it like to not wake up w in pain” i wept as soon as u said those words. same with what i said ab feeling trapped in ur own body. there is no catharsis. u r too tired and in pain to do anything u enjoy, but can’t rest. it is borderline indescribable because it simply doesn’t end with chronic pain. i am happy to at least have people like u to share these feelings in community with. thank you. i wish u the best
Irene, it made me so sad to hear your struggles 😢 I live with fibro too. It is so horrible. I am feeling very vulnerable atm too. Trying to function in the day can be just too much. One thing I have found that helps a little is myotherapy. They use cupping, dry needling, massage, stretching, exercises, etc. it helps me to connect with my body more and I feel like I can function a little better. I don’t have as many falls, accidents and it even makes it easier to breathe afterwards. Sending positive energy to you.
The more that I have researched autism and it’s correlation with my chronic pain I’m so surprised how intertwined they are. I have suffered for 30 years and have never gotten help by the medical field. If nothing else please know I know EXACTLY how you feel you are not alone and there are many of us that care and truly understand. CBT has helped me. I have never accepted the struggle it is very real very hard and lots don’t understand. Also massage has helped me a lot and also acupuncture and acupressure.
These sit-down type vlogs are great and super helpful for someone like me who needs to see a realistic point of view. You’re not lazy, you’re just moving at a different pace right now (learning this myself as well). Thanks for sharing and keep taking care ❤
Everything you’ve said in this I completely resonate with. And, so far in 3 years, I’ve been to idk around 10+ doctors? Some er visits where I was dismissed as well..pathetically, the only time I was ever taken seriously at the ER out of the 3 times in the last year, I was in sepsis. The other two times I had obvious & dangerous symptoms that got completely and entirely dismissed. I went to the ER this last month because I was having literal anaphylaxis 4+ times a day, the day I decided to actually go because I’ve already been treated so horribly by so many doctors, SO many. It happened for 4 days BEFORE I considered going because of past experiences. I went and the doctor basically yelled at me for giving her my symptoms and telling her what was going on, diagnosed me with anxiety when I was having continuous arrhythmias, really high bp (165/123 mmHg - I’m 22 years old ) - 140 heart rate and I hadn’t stood for a solid half hour? I was in a wheelchair.
I also struggle with Endometriosis and Fibromyalgia coming to terms with these has been such a struggle and I still struggle with it. I think just letting yourself grieve is helpful.
I’ll go through periods where my cup gets fuller and fuller till I need to just spend the day grieving and crying, feeling all of the emotions that come with it.
I really appreciate you talking about this and also love this format of video so please know that they’re aren’t viewed in a bad way.
These feel very personal and it’s lovely. ❣️
I hope that this flare doesn’t last too long and that tomorrow is even a tiny bit easier to cope with! ❣️❣️
I have been following you for awhile and so much of the things you say feel like its been plucked straight from my brain. I have also been dealing with undiagnosed chronic pain for the last two years and have had the same treatment by doctors being dismissive and saying they cant help me, it truly is the worst feeling and makes you feel absolutely insane. I too get extremely emotional about it to the point I can barely talk about it without instant tears. I just want to thank you for documenting your experience because your words truly make others, including myself, feel less alone. Your videos have brought me so much comfort as I deal with both chronic pain and navigating my neurodivergency. Wishing you answers and relief
Also never apologize, your sit down vlogs are the best!
I was scrolling through your videos, unsure about watching. Not sure if I wanted to watch another autism channel, y’know? Then I came across this video and went, “Oh, this person has more in common with me than just also being autistic”.
Thanks for the video.
I am probably autistic and I also struggle with chronic pain. Since around 14-15 I’ve been getting migraines, I don’t technically qualify as having chronic migraines anymore since my Emgality has brought it down to less than 15 days a week but for many years I was a chronic migraine sufferer. Then I also got diagnosed with POTS and IBS among my many MANY other conditions. The symptoms really suck but the community I’ve found has been really nice. The way I deal with chronic pain is taking meds, using heat pads, using distractions like watching TH-cam, meditation sometimes, and finding support groups. Also laying in a dark quiet room helps. And pacing myself, even just giving myself grace and acknowledging that it’s okay that I don’t have any more spoons to spend today makes things a little easier.
I love all of your videos, it's so rare to find someone who makes content like this on youtube. You've been so relatable in every video I've watched so far. Thank you.
As someone whos only hadchronic pain for about three years, my only advice is to always have something you enjoy doing. Ive had to find new passions as im no longer able to participate in sports or spent a whole day at school. No matter what you need to have something that makes you proud and happy. Im not saying its easy to find that in poor physical state, but its very much essential.
I'm 18, been dealing with the pain since... probably 6th grade so 11. When puberty slowed it brought a lot of problems to light. It's just slowly gotten worse, cracking knuckles and having a sore back sometimes slowly turned into constant pains and weaknesses. Like you said, some days are okay and some days are so difficult you have to cancel almost every plan and routine you have. I have eds, I'm not too sure what else. I cant afford going to the doctor enough to find the one that will take me seriously. I'm kinda waiting until I can move to a universal healthcare country to start. Personally, i just have to take things very very slow a lot of the time. Hot baths offer the most relief, I've practically abandoned my ibuprofen and pain meds because it barely feels any different. I'm always planning for a hot bath, taking 30minute breaks, wrapping my body in sports tape and ace bandages, moving like a sloth, and sighing heavily at everything because I don't even have the energy to be mad about things being difficult anymore. I've gotten better at taking care of myself and am very lucky to be in a position where i can afford to take my breaks and be slow. But it's always lingering in the back of my head, that one day it'll be even worse, it's only a matter of time before I find the next problem. I struggle with imposter syndrome towards it because it's that feeling of "i could push through it, I dont absolutely have to use these accommodations" (which i think is a mentality that comes from masking) but my health would be worse if i listened to those thoughts so i try my best to brush them off. I think I hate it the most that people 'dont want to hear it' they hate it when I talk about or joke about how the pain and my autism affects everyday of my life. And no one wants to give you any credit unless you fit in this box of completely debilitating problems and being a certain age or look. A lot of my experience can be described as just exhausted. There's maybe two days a week where i feel okay if I'm lucky. Anyway- I'm sorry if this turned into a bit of a rant but you asked those questions at the end so I thought i would share my experience. I know it's not quite as bad as what you're going through but, in lots of ways i understand the feeling. I hope you can find what helps you and live in better health. You're such a bright loving person and I hate to see the pain take away your ability to keep living in your light and love. It's really difficult, but I believe in us, we can get through this! 💕
I'm a bit jealous with 2 out of 10 times, I've had many, many doctors and only a couple have made any difference. I've also been told I have to wait till it gets worse. Our health system is fundamentally broken, by design. Other than those few doctors, a great chiropractor and a great massage therapist really changed my life for the better, but it did take years and ya, I paid out of pocket. When my chronic pain went away I did become a different person and was worried that my partner wouldn't like my 'new self'. Thankfully, it has made our relationship better as it interjected much needed positive aspect into our lives. It is good that you are figuring this out while only in you 20s.
I get it. I’m 49. Grew up with constantly having issues being sick, then chronic headaches and migraines at 11,
rare infiltrating endometriosis as well, later diagnosed with early onset arthritis, fibromyalgia, Hashimoto’s, adhd, hypermobility syndrome, social anxiety, near agoraphobia, GAD, spine issues (mine is out of alignment forward to back rather than side to side) degenerating desiccating discs, cervical lordosis, occipital neuralgia, tmj which triggers the terminal nerve abs with the comorbidities, two of my docs figure also asd.
I’m still hunting for answers.
Two years ago I started having issues with my knees and tailbone, they were hurting terribly and so I couldn't sit, lie down or walk without pain. I went to quite a few doctors and they only gave pills, creams that didn't really help and only eased the pain a little for a short time. They also suggested steroid pills, very expensive injection treatments and a surgery to change the form of my knees but neither options were very tempting.
Then I went to a chiropractor and only after the first session the pain has actually stopped! I couldn't believe it. To be fair I had to go back a couple more times for some fine tuning and he gave me homework to make sure there is no relapse. The only thing is that you have to find someone who is truely good. I tried out once a different chiropractor and he did more harm than good... But if you find someone who can be trusted I would definitely recommend to give it a try, even if it requires more travel.
I hear you about the shaking. I go through that a lot.
For me it's healthy eating, avoiding gluten, maize and soy, using comfrey on joints that hurt, having magnesium rich foods or salts in bath and building muscle tends to help with the pain since it creates a stronger threshold after.
So sorry you're going through that 😢
So sorry you are struggling with you're health you are a beautiful person love your videos hope you feel better soon
I'm so sorry you were in such pain and can totally relate. Your videos are always so helpful and comforting in a way I can't describe. Since I'm following you I started a journey of acceptance and accomodation for myself I didn't let me do before..
I always beat myself because I strongly think I developed endometriosis because I lived so many years in stress and not knowing I was autistic.
So many of us are in these conditions and it hurts so bad realizing it. Even the doctor that diagnosed me autism said I have to reduce the stress because I will probably develop an autoimmune disease.
Now seeing you talking and saying these things felt like a big hug, like we were all together talking about these hurtful things and sharing our experiences. I have high tolerance to pain and everytime I explode is because I can't do things like I used to be before and I'm not that person anymore and probably will never be and this is very very painful to accept. These feelings and thoughrs are so difficult to clarify to us but you did it so well that now its a little clearer for me too. Thank you so much for sharing your experience, I sincerely hope you're doing better right now. ❤
I have something called McCune Albright Syndrome and I live with all sorts of pain and disorders/ diseases. I know what you’re going through. Thank you for sharing about your experience and being vulnerable and transparent about it. So many people struggle with chronic pain and undiagnosed (and diagnosed) health conditions and suffer in silence. We all suffer in silence and on our own ultimately, but it can feel good to be able to share to others who can understand. The power in having a supportive community cannot and should not be underestimated. Being connected to a patient advocacy community can be and often is a life saver. Videos like yours are often life savers. I was having a hard time connecting with my body but after listening to this I feel much more connected and less alone in my experience. (And it’s worth saying that I have about 30 years worth of experience w managing my health and I have a big team of health professionals who are able and willing to help if I ask for it, and I still have many days when I feel like you do now. The issue is that the symptoms are untreatable or need holistic treatment and are relentless and permanent and progressive; the complexity gets to be overwhelming so meltdowns and shutdowns are just part of the course).
I hope you feel better soon. Sending hugs ❤
I've been having this same download the past year. It's taken a while but I am finally making progress - quitting ultra processed food, alcohol, smoking and other things, starting to exercise more, stretch more, prioritising me time and sleep has all made a huge difference. I'm still making mistakes all the time but every time I do I REALLY feel the difference, and it pushes me forward even more. Wishing you and everyone else here so much love and luck with your journey 🙏🏽 I hope we all get better together 💛
👍👍 I really feel for you, Irene.
For what it's worth, my own chronic pain is closely connected with my mood and while the pain is never going to "get better" my mood absolutely improves and changes all the time and so sometimes one little thing gets better for a while and it makes everything else get a little better too.
I'm really hoping for you that things start to feel a little easier as soon as they can, whether its mood first, or pain, fatigue or hormones, I really hope you get a bit of rest just as soon as you can.
I don't have pain free days but I do still have good days. I am going to reflect specifically on my relationship with my body after hearing your thoughts today, so thank you for your insight 🙂
Speaking on my own experience in the healthcare system I was journaling recently about chasing doctors, getting rejected, making appointments, feeling ignored and all the anger and exhaustion I feel from trying to get help. I'm sure there's a term for it already but I ended up labeling these feelings as "diagnosis fatigue", anyone relate?
Lots of love everyone 👍👍
Hello Irene, thank you so much for everything you do. Your videos are so helpful and you're such a sweet, genuine and articulate person. I'm sorry you're going through this chronic pain right now. Physical pain can be so mentally exhausting to deal with. I wish there was something I could do. I have autism, diagnosed at around age 16, as well as some physical health challenges. I have experienced the pain of being completely invalidated, dismissed and straight-up just mistreated by doctors who didn't take my problems seriously. The health care system has serious flaws that need to be addressed still. I see you and know that what you're going through is real and it is clearly excruciating. When I am feeling awful, I like to rap myself up in a soft fleece blanket and sit in the dark with white noise and let my mind go blank. None of this of course cures my problems, but it does add some peace and comfort to the pain. I have found your videos so relatable and helpful. I just want you to know that you've got a lot of folks here who look up to you and are sending you love. Take as much time as you need to rest, don't push yourself to work or post things if you're not feeling it. Keep being awesome, thank you again Irene, sending you love.
"Somedays it's really bad & somedays it hurts"
I ugly cried HARD while listening to this. I'm making my therapist watch this. Thank you for putting words to something I've not ever been able to describe.
I don't know you but I absolutely Love you you are truly helping me get through the same issues. I a 36 year old female who has never been diagnosed but I am 100 percent sure I am autistic. I have scoliosis anxiety and I have difficulty talking digestive issues im seeing a sleep specialist had surgery when I was younger for scoliosis but within these last couple of years I have been dealing with other health problems too and some days I barely can walk it's painful to stand on my feet the doctors dont even know how to treat me . I would have never even been aware that I'm autistic until I began ny spiritual journey which was also a couple years ago. Thank you for your videos and transparency so much coming from someone who have masked her whole life . I pray you see this and I pray that you continue to share your experiences. ❤
Girl! How did you even film this? I had an excruciating migraine and I just had to stop everything, couldn’t even finish washing my hair. Sat in the dark on my bed and drank two Tylenols. I couldn’t even cry because it would make the migraine worse. Much love and health and wellness to you. ❤
So much love to you Irene!!❤ Is there a link somewhere on here where we can donate some money to you? It feels like a thank you for all the ways your videos have helped us all xx
You can always donate by hitting the heart “thanks” button on the bottom of my videos 🥺 thank you for wanting to!
That's no problem! I'm rubbish with technology hah. ❤
Hi Irene,
I am so sorry to hear that you are experiencing so much pain and I am sorry that the medical system has not provided much help. I don't know if if you have tried Physical and/or Occupational therapy before. There are therapist out there that specialize in chronic pain and they can help you. PTs and OTs also understand how autism can exacerbate pain symptoms and limit function. I am an autistic physical therapist who lives with chronic pain and works with individuals who have chronic pain conditions like Fibromyalgia and endometriosis. I want to encourage you like your videos have encouraged me. There is hope and healing for you out there and with the right care it can be better than it is today. If you have any questions I can point you in the right direction.
"some days are really really bad and some days... it [just] hurts" that hit me so hard.I had to digest that for a minute, because no one had put it into simple words for me before. I was diagnosed with fibromyalgia at age 20, 5 years before my autism diagnosis. I've had breathing problems for as long as I can remember, the pcos diagnosis came recently right during a burnout. I had constant headaches and stomachaches since elementary until around college, the doctors never could figure out what was wrong, and looking back i'm almost positive it was just being extremely overstimulated and I didn't have the right words to communicate that. it scares me how much otc headache and stomach medicine I used to be given. no one around me wants to acknowledge my diagnosis for any of the health things or the autism, so i'm stuck draining the reserves of my reserves to mask. its so difficult and I feel really alone often. this video made me cry, I just feel seen
I can hear (and see) how agonising this is for you, I really hope this gets better for you soon and I understand to a limited extent (everyone is different) how much it suuuucks and affects your quality of life. I had tendonitis in my wrists and ankles, chronic migraines, back pain, some intense pain in my thigh that I was told was a pulled muscle but they don't usually take a year to get better and hurt the whole time. I was basically housebound for a year, couldn't lift a fork without pain and drank through straws so I didn't have to pick up the glass. I also think I'm autistic and maybe adhd too, as much as those distinctions serve to pathologize as well as potentially help. I'll have assessments when I can afford to, but for now it's pretty much just a strong suspicion.
All of those things got better ('cured', in a sense) when I learned about Tension Myositis Syndrome and the late Dr Sarno, Dr Alan Gordon of the Pain Psychology Centre, Nicole Sachs' podcast or youtube videos, etc. Fibromyalgia is one of the more common problems that leads people to the work. I'm very scientifically minded so initially it sounded like a load of crap to me, but through the journaling and letting myself acknowledge my 'rage' (unfelt emotions) and doing some serious introspection I banished the pain. Kind of. It still comes back every now and again in different forms and it's appeared in other ways since then, but it's nowhere near the level it was at before and I know that I can come back from it by just asking myself "what's up?" with an understanding smile and a willingness to listen. I don't think YT likes links, but you can go to the TMS wiki (google it) and read about it. My life was saved by it, it sounds like you're in a similarly dark place. So if anyone reads this comment and decides to check it out, I sincerely hope it helps you understand the pain and understand yourself.
My autism and adhd research has been a relatively recent thing, and I'm still trying to figure it out in the context of my life and also in the TMS work but I'm hopeful!
I'm in the same boat. Autism, ADHD, interstitial cystitis, gastroparesis/GERD/functional dyspepsia, dysmenorrhea/endometriosis... the chronic pain started about two years ago pretty much out of the blue (my early 20s), and it got so bad that I couldn't sleep, eat, drink, or walk. Doctors were no help. I have slowly pulled myself out of those bad times. Today I still deal with daily symptoms but they are quite manageable. I have full faith that it is only a matter of time until I am fully healed. And even though it was the hardest time in my life, I am very grateful for all that I learned through this process. I can confidently say that I am much happier than I would have been if I had never had any chronic pain conditions.
Remember: you have all the healing potential you need contained within you. you can (and will) heal. take care of yourself, show yourself love and compassion. I was my own worst enemy. you don't know what the future holds. acceptance. your body is going to do what it is going to do. let go of any preconceived notions of what this experience should be or what experience you should have, trust the overall process: trust yourself.
I recently was diagnosed with autism and I was diagnosed at birth with sickle cell anemia(I also have scoliosis which has caused severe back pain). It seems majority of people don't know what sickle cell is but to sum up my point, its a disease where chronic pain is very prominent. I'm 30 years old and grateful that I'm still alive because others with my disease around my age haven't been so lucky.....but that doesn't take away from my reality, that being its difficult to keep going and stay motivated to keep living life. So before being diagnosed with autism, Ive lived a life constantly trying to cope with chronic pain and being gaslighted by health care professionals (I have some awful stories) and feeling helpless along with a compilation of difficult emotions that have chipped away at the well being of my mental health. Ive been suicidal several times just because I'm so tried of the pain and feeling like I have no way out of my body. Not to mention feeling wildly misunderstood by those around me. When you pointed out how you get emotional because the pain prevents you from carrying on with your routine and not being able to rely on that routine brings you distress, I cried so much because thats something Ive felt my whole life but it never seemed like anyone else understood that extra layer of complications I have to cope with. So thank you for this video....its truly what I needed when I needed it and its helped me to feel less misunderstood
I'm so sorry for the pain and health problems you've struggled with for so long! I am currently (for the past 2 1/2 years) desperately trying to find out what is wrong with me. I have been to many different doctors (regular allopathic and naturopathic/holistic) and at my insistence they have done all sorts of blood tests, but they always come back "normal" (some of them at the extreme low end of normal, but as long as you're "within normal", they won't do anything).
I have felt suicidal at times these past few years, because of the pain and crippling exhaustion, and other symptoms. It does make you feel helpless, when no one really seems interested in finding out what's wrong. They just want to prescribe medicines to mask the symptoms, without knowing the cause! And talk about gaslighting, I also have some crazy stories!
Those days when I feel suicidal I try to remind myself that I will feel stronger emotionally at some point (it's usually a few days or a week), so I just ask God to give me the endurance to keep going.
I also feel completely and wildly misunderstood by those around me. As a result, I usually just prefer to be alone. It's easier for me that way. I'm so grateful for videos like this, and for this community where we can come to feel understood!
@@christinelamb1167 As much as it sucks that we have to endure this stuff, it also feels good to know theres others out here who understand this struggle :)
Im so sorry you've been going through this stuff :/ I can imagine its caused so much anxiety at times you don't need additional negative emotions/experiences. Its an awful feeling when it seems like the people whose job it is to help you find ways to maintain your health (whether physical or mental) seem to care the least about your overall well being smh
I'm pretty sure my bad experiences with health professionals alone has taken years off my lifespan lol (my dark coping humor)
I admire your perseverance and thank you for the kind words! I pray you get some answers soon because you deserve good health care and you deserve to be treated like you matter!
It was researching the link between autoimmune disease and bullying that led me to the ASD diagnosis. I think ASD ppl get bullied so much and bullying often leads to developing autoimmune disease.
Sometimes all I can do is use my thc oil and watch movies or listen to a book. There are a lot of different strains to try these days, but I look for the ones that provide relaxation & relief from chronic pain.
Thank you for this transparency and openness. It has helped more than I can express.
turned 18 this year and have been diagnosed with adhd, (juvenile) rheumatoid arthritis, and ankylosing spondylitis in the same year. pain is such an oddly abstract feeling that i tend to have a lot of difficulty expressing what i’m experiencing - what you said about having a high pain tolerance and a low threshold for discomfort is so real and it was so soothing to hear what i’ve been feeling said so perfectly. thank you, thank you, thank you 🫶🏼
Some mainstream clinics in the USA have chiropractors and acupuncture, but it's not common. Also, some chiropractors and acupuncture providers do accept insurance, either directly or if your primary clinic provides a referral.
Acupuncture and dry needling didn't help me, but chiropractic and Fascial Counterstrain help me a lot with managing my fibromyalgia.
Pain is such a complicated animal. I don't know if this helps, but I ended up using a multi-pronged approach. Pain is usually has both a physical and a psychological component, and treatment needs to take this into account. Personally, I found the psychological component the hardest - I was very resistant , but I finally worked through it all! Don't discount the power of exercise either. I know it can be counter-intuitive to exercise when you are in so much pain, but gentle strength exercise like yoga, Pilates etc. has so many benefits. I hope you find your winning combo. It also helps when doctors listen and don't just tell you its all in your head!
i feel your struggle so deeply, just got my referal to the ehlers danlos society im hoping they can help me it has been 10 years of excruciating pain. the trauma i have gotten from health care practitioners is disgusting.
You can get referred to acupuncture and/or chiropractics!! At least I’m able to here in California, but I still prefer out of network specialists. I struggle with posture and proprioception in general and i was just diagnosed w Autism+ADHD about a month ago. I just started taking ballet and it’s really helping me connect with a create a relationship with my body that i did not have before :)
I have HMO insurance but many practitioners accept PPO
Yay, that's so exciting that you're dancing! Have fun!
I know how it feels what to be in pain…but hearing your painful experiences on dealing fibromyalgia is making me tear up and cry so much 🥺😢. I am very sorry to hear you go through this.
…I just wanna ask, have you reached out to your family and have you told them about this discomforting situation.
I know a lot of women who distrust the doctor and do not trust the hospital experience 😞.
Please know that as your audience, we are there for you, we are there to hear your story, voice and experience. You are not alone Irene ❤.
It’s okay to ask family to accommodate you. Because that is what family is for..
Most insurance does cover acupuncture and chiropractic. Problem is the # of visits and/or a deductible… I only get 10 chiro and 12 acupuncture. When I should be going 1-2x a week. Same with massage therapy.
Those modalities help a ton, but I don’t have the time/energy/money to go as often as I should. My SI thoughts are much less intense when the pain is lower…
I would do physical therapy too, but it takes away from my precious massage visits coverage, which then cost $100 a session out of pocket.
I’m having a surprisingly good pain day today. I took a bunch of my gabapentin and baclofen AND saw chiro and acupuncturist back-to-back and had massage appt last week, and did some body rolling with my peanut roller, covered myself in tiger balm and now have 2 heat wraps on. There’s still some pain but it’s not consuming all of my mental awareness like on a normal day.
Chronic pain and fatigue absolutely obliterates quality of life. And my PCP has given up on helping me, I have to advocate for myself at every step and it’s not enough…
Thanks for the validating video. I’m sad how many people have to deal with this.
Right there with you. 5 1/2 years, doesn’t get easier. People don’t understand.
Your channel is so valuable. You are so valuable.
I’m a medical cannabis patient for pain. Much better than years of chemicals.
Thank you.