My son was diagnosed with FND 13 months ago. He is 41 and has a family of 4 children, ages 2-10. He too has been unable to work or drive. He is working with the FND clinic at Mass General Hospital in Boston. It's been so fustrating trying to identify the root cause---which no one has been able to do. He has done PT, OT, Physcotherapy, LENS treatments, cranial sacral therapy, and is currently working with a hypnotherapist and doing cognitive behavioral therapy. The results have been an ever so slighlt improvement, but ultimately he has basically become more aware of the triggers and how to avoid a full blown episode by doing breathing exercises and wearing noise cancelling headphones. It seems that acceptance of the situation is all that is available right now. So, so sad. Keep getting the word out by doing these videos and keeping the FND population in touch with each other. You are a very couragous young woman. Continue to care for yourself.
Hi Becky, Thanks for writing and sharing. I'm sorry to hear about your son. That is a lot of therapies! I am happy to hear that he has access to a lot of different therapy though. Maybe in time. I have definitely seen a change with my health with acceptance and being aware of my triggers and seeing small changes through that. Thank you for watching and thank you for such kind words! truly blesses my heart
I’m a grandmother also diagnosed with FND. I live in London England and I am entitled to disability living allowance and rightfully so, FND is a cruel and unpredictable disability that leaves you unable to work and we sadly cannot live on fresh air. My heart goes out to you 🙏
I was also recently diagnosed with FND, and discovered on my own, that when I do spinal lengthening practices, it allows my nervous system to work more efficiently, and completely eliminates the symptoms. For example, when lying down, I make sure that my chin is slightly tucked, and I lay perfectly flat with just a thin pillow. I had to provide the pillow myself, because the hospital pillow was too big, also, when I was standing up, I would lift my arms above my head, tuck my chin back so that my cervical spine was straight, then lift my shoulders up and raise my hands above my head, holding them together and doing my best to bring my biceps to my ears. Also, I squeezed my butt cheeks together to provide stability for the lower spine and allow more ease to lengthen my spine up. And finally I would reach as high up to the ceiling trying to touch it. When I would do that, I could walk perfectly without any mobility issues. And all the strength came back in my muscles. And all tremors stopped. So for me, I’ve learned that is super important for my healing. in addition, I wear earplugs because the amygdala is highly sensitive to unexpected sounds and movements. So when I’m in nature, away from people and busy places, all my symptoms go away. I also discovered that just by being in the hospital with all the unexpected noises and nurses and doctors coming and going, it continued my symptoms and even made them worse. So the hospital was not actually helping me to heal, and I needed to be transferred to a retreat center. If possible, it’s best not to hang out with family because they often create more stress and drama, which continually exacerbates the issue. What I’ve discovered is that it takes a couple of weeks for the amygdala to come back to baseline and no longer be sensitive to all the input. And now I’m symptom-free and I never needed to take medication either, I’m curious if these tips that I’ve discovered might work for you if you have FND.
Just felt stiff. I just needed to consciously relax and i was able to move more. When I walked, it felt like something was preventing me from moving my body.
I was finally dx with FND with non-epileptic seizures in 2018 after years of neurologists telling me it was psychological while psychiatrists & counslors telling me it was neurological. I also have myalgic encephalomyelitis/chronic fatigue syndrome, craniocervical instability, Autism, Adhd, and 2 balance disorders. The fight for finding the correct dx is real. I have found the my sensory sensitivity is now through the roof, and daylight or overhead lights will trigger my seizures faster than anything else. Thank you for putting yourself out there; reading has become nearly impossible for me so slogging through written info for *anything* out there is pretty impossible. ❤
Do you have heds with the autism it's the autism causing mcas ime late diagnosed heds autism ADHD CFS 27 years fybromyalgia 6 amagdalia is larger yes feals like what to pursue next ime doing CCI to
Thank you so much Cassey for your courage in sharing your FND diagnosis and what you've been going through. I also have FND and have been struggling with it for the past two years. Like yourself, all my tests came back normal. It's been a crazy and lonely journey for me which has been life altering. I feel for you and I understand what you're going through.
Awe Alex I'm sorry to hear that you are going through the same thing. Thank you for sharing. It is definitely lonely, challenging and frustrating. Thank you for your empathy. I really hope you find that help and some ease. Sending lots of love and healing vibes to you!
I have Myalgic Encephalomyelitis. I get tremors like that.. But very mild. Listen to your body... If it is telling you not to do certain things.. Then listen to body. Don't go on auto pilot. Don't push through. And definitely don't fatigue yourself mentally, emotionally or physically
Thanks for sharing. My experience is very similar to yours, as far as symptoms, getting diagnosed, out of work, financially struggling. Looking forward to more of your videos!
Also, it is not true that you cannot have a seizure while conscious. I was put in an epilepsy monitoring unit where they had me on an EEG for a week. They found that I was having epileptic seizures and non-epileptic seizures.
Wow this made me tear up, I am so so sorry you're going through this. I have a functional gastrointestinal disorder that started about a year ago and has made every day feel like a battle with my own body. Not the same condition as you but I know how it feels to not get any answers from doctors and to feel like you've been given a life sentence. Take care of yourself and I wish for better days ahead of you.
Hey Zac! Thank you for your kind words. Ive never heard of functional gastrointestinal disorder, I'll have to look it up. But yes chronic illness is so darn tough. Thanks for sharing a bit of your story. I wish you ease and healing. xo
I'm so glad that TH-cam recommended your video to me! I have FND too, and my symptoms are pretty similar to yours. I'm so sorry that you're going through this. Thank you so much for posting. This honestly helps me feel just a little bit less alone. I wish you the best of luck and hope that you are able to find some kind of treatment that helps you improve.
Hey Morgan, thanks for the sweet comment. Im glad youtube suggested it too! Im sorry you also have to experience it, it can be quite taxing on the body and mind. Sending healing energy your way !
It took 8 years for me to finally get a diagnosis here in Omaha, NE. We thought it was some type of epilepsy. I had a neurologist straight up ask me if I wanted an epilepsy or migraine diagnosis because he didn’t know what was going on. It’s why I got discharged from the Air Force. The episodes I had then was physically being unable to talk for like 3 hours at a time and since July of 2020 I developed face and neck tics that have been helped a ton by CBT. I was so hopeful when I got a new diagnosis that I found an answer and could have a treatment or cure and when my behavioral therapist who helped me with CBT told me it wasn’t curable it broke my heart. It’s been so crushing dealing with the pain and anxiety the tics give me. Hopefully you’ve found something now and things began looking up!
Hey from Omaha. Diagnosed at UNMC a year ago after they thought I had a stroke. Now just trying to figure out how to get better, CBT and EMDR helping…it’s lonely, nice to see a fellow Omaha resident 🧡💙
@@Owlberightback I was admitted and diagnosed by two different doctors with stroke. The MRI and EEG both showed stroke. Total right side not working, confusion, couldn’t walk or talk. They sent me to UNMC and there I was diagnosed NOT stroke (?!) but FND (2nd opinion agreed) I have tics, drop seizures, focal seizures, absence seizures. I have migraines and random body movements. Mental illnesses have gone through the roof, don’t really want to go into details in public, but fairly dramatic. I couldn’t read for a long time, had to retrain my brain to listen to music. I am sitting here with a black eye from a drop seizure onto my wooden kitchen floor. Physical symptoms too many to mention on here. It’s a lot. I feel like I am on a damn raft in the ocean and sharks are circling at any given time. 🤷🏼♀️
@@Kerrylovesmusic it was a UNMC neurologist that wasn’t able to diagnose me correctly the first time. Hope you find some resolve with those seizures ❤️
@@Owlberightback PNES is the diagnosis on that, no meds available for non epileptic seizures other than anti anxiety meds. It’s all just a damn mess. I hate it.
Thank you, I was just diagnosed last week with the conversion(5).. Still researching. Stress, emotions, anxiety & engaging in activity set my "flairs" off ..very disabling. I subscribed to you on you tube as I am deleting f.b app. So that I may work on self healing. I feel this is also a spiritual journey so I'm going to move forward with baby steps.
Hey April, I will happy to chat with you and help, support you in your journey. Feel free to connect via info@beyondrehab.org & more about my work www.beyondrehab.org
Thank you for the subscribe, it means a lot! I will keep up posting my journey in hopes that it can help others. Blessings, and yes take it day by day. Try to create a good support system and listen to your body as best you can 💗
I have a functional seizure disorder as well. And crazy sensory issues. My senses are through the roof. I fall on the floor with one load bang. But with these super senses I have super powers in how I see and perceive and experience my senses as they can bring equal pleasure and pain. I believe it’s spiritual as well.
@@bxstar5276 I haven't checked this in awhile, but today your message appeared upon waking up. I had every symptom of fnd including unable to walk or complete sentences as well as non epileptic seizures until Sept 8th when I went to bed crying out to the Lord to save me or take me because I couldn't live like that. God heard that cryful prayer, I woke Sept 9th completely healed from every symptom and pain. It's been almost 2months free of all of that and all meds. Jesus is the way , the only way to salvation, healing and forgiveness. I BELIEVE that anyone who surrenders themselves fully to the Lord can receive his mercy, grace and the miracle of healing. I pray for all who are afflicted by anything, but until I was at my worst , I too had doubts. Now many in my life have seen and believe, Jesus did die on that cross for us, and he is coming back. Lord Jesus please touch your healing hands to any who read my message and ask for you to come into their hearts. I will forever praise your holy name. AMEN
@@aprillitchfield8876 I’m glad you are finding your way in faith and it’s healing for you. I do not share your beliefs and I am very firm in this. Spiritual beliefs are personal and to respect others I wait till we are on the same page. I’m very glad for your healing. I’m finding mine as well. In medical cannabis, therapy, healing my nervous as and my own spiritual path as well. I fully undertake the pain in your prayer as I also gave up many times on this life. I couldn’t see the way out and now I do. All the best to you.
Thank you for posting this video! I saw a lot of the same twitches and tremors I have. I have been dealing with mild tremors for 3 years and they started getting worse after my 2nd MRI ruled out everything else, about a month and a half ago. I still do not have an official diagnosis, but I am sure it is Functional Movement Disorder. I work from home and just trying to sign in to my work computer causes me anxiety and major tremors. Now I need to see if I need to leave my job due to this. The financial part is hard and the being productive part is hard as well. I am also a caregiver to my father-in-law and hate for him to see me during my episodes. My husband and daughters try to help, but this is hard to understand. I went to one of those places that stretch you like an athlete, and that helped my leg tremors. Also just sitting, listening and accepting what God is trying to use me for has helped tremendously. I’ll subscribe and hopefully we can create awareness of this condition.
Wow thank you for sharing 💗 its so tough to have family watch us go through something that they don’t understand. I know it was super hard on my family and still is. I know stress can totally trigger it. I am fearful of having episodes in public and i have multiple times so when we go to the grocery store or restaurant ill have tremors in the car before we go in so i end up just staying in the car. Im really glad you have something to inspire yiu and keep you grounded. Having trust in god can put our hearts at ease. My prayers go out to you 🙏🏻
Please explore to see if any of the diagnostic criteria for Myalgic Encephalomyelitis fits for you. One hallmark is PEM Post Exertional Malaise, then there's light sensitivity, IBS... So many symptoms.. And many of us get tremors like these, especially with the combination of overstimulation and fatigue... Fatigue can come from emotional cognitive or physical output/input.
Hello Cassey , I just wanted to comment to say I also have FND same symptoms and double vision .. diagnosis took almost 3 years for me due to pandemic.it is very hard physically and mentally..I totally get it. you are not alone .see FND as a software issue..and distraction sometimes works for me .. you may have seen John stones you tube videos on here he is a UK specialist on FND , watching his videos really helped my mind set and coming to terms with FND ... but that is just me .... as FND is different for all . so here to show support and solidarity for others with FND , we are special ... we are FND Avengers .. even if sometime we don't feel it ... sending positive vibes to all .. embrace our super powers ..for me it's key to not feel scared. xx
Wow thanks for such a positive message. Very inspiring and well said. We definitely need to stay strong and fight. Ive had a lot of bad days but i trh to remember what is good in my life and what im living for despite the disorder. I actually havent watched his videos ill have to check it out. Thank you for sharing your story, its so important to come together. Lots of love and positive vibes out to you!
Thank you for sharing. I'm 45 and have only just started having seizures and FND is suspected, going through all the tests now- but I have been having tics, tremors, spasms etc for a long time that got written off as anxiety. Some of your footage is what I think I look like as well so its very helpful, thank you.
Thank you so much for sharing this video and your story Cassey. I'm 18 and was initially misdiagnosed with tourettes from 16 to 17 before my dad found out about FND and I was diagnosed with that. Watching your episodes was like looking into a mirror, I get tremors, verbal and motor tics, seizures where I'm awake (which also confused my doctors), issues with balance, increased fatigue, paralysis, and on and off mutism. It's been hard to accept I'm disabled and that this might be a life long issue that is going to change the trajectory of my life. All my friends went off to college and can drive and I'm stuck at home going to community College and taking the bus. It's sometimes hard relating to people my age since I'm so much more limited in what I can do. I find my FND is triggered by illness, stress, and sleep deprivation and the best thing to do when I am experiencing symptoms is to rest and be easy on myself. For me I find getting out in nature and doing things I love like birding really helps my mood and mental health which in turn improves my fnd symptoms. I have found since figuring out my triggers and minimizing and managing them my FND has by and large gotten better. When it first started I was having several seizures a week, on and off mutism, and tics all day. Now I only get seizures about once a month during times of high stress and my tics are much more manageable. Guided meditation just makes my tics worse, so does trying to control my tics and having other people telling me to control my tics. I hope since posting this video you are doing better and are taking care of and being kind to yourself.
Hey thank you so much for sharing some of your story. Im sorry to hear that you are affected by fnd at such a young age. I can related to you in a way that I cant related to my friends either because we are in different places as well. It can be so hard. Im really glad to hear you are finding ease and a good practice to keep your symptoms down. I am still struggling but I think it is related to medication. lots of love! xox
@@casseyklie I haven't found any medications that helped my FND directly. Instead I found medications and coping mechanisms that helped improve things that triggered my FND, like anxiety and sleep deprivation.
I have recently just been diagnosed with Functional Neurological Disorder im only 16 and all this came to me from having Ovarian cyst surgery i've had no symptoms of this before the surgery but after surgery everything just fell on me. I was very active on dance teams and more. I feel like my life is over cause I really don't know exactly when i'm going to be better or the doctors don't even know either. I'm getting ready to graduate as a college and a high school student next year. I can't walk at all like most FND patients can do, it has been a year since i've walked.My headaches won't go away. My voice is fully gone and so much more. I'm every single therapy you can think of now Occupational, Physical, Speech, and Physiological. I really hope everyone gets better. Thanks Cassey for sharing your experience with it 😊
Hi Cassey, I'm sorry this has happened to you ! I have recently been diagnosed with Functional Neurological Disorder .The first time this in September 2022 happened to me I could not ,walk ,talk ,think and it was presenting symptoms of a stroke also I was hallucinating, like you all physical tests came back as normal and had no answers for me and I was wrongly put in a psychiatric ward for two weeks without any help or medication eventually over the weeks it had calmed down by itself . Still no diagnosis was given . Then on Christmas eve it happened again which put me in hospital until the 10th January as they gave me physio to help me walk again not perfect but ok now. The thing that troubles me is that it can happen without any warning ! Like you I have been told there's not any answers as to why or how this has happened . Find it a bit scary to be honest . Enjoyed your video I was just like you when in Hospital. Hope your well would be good to hear of your experiences and how often FND rears its ugly head . All The Best Stephen x
Cassie, I can’t explain how much I can relate to you and your story. I was just recently diagnosed with FND and I too had quit my job, applied for disability, I have a 2 year old I can’t care for by myself, I can’t drive, there’s essentially no resources from The doctors. I have seizures/muscle spasms every single day and it feels like my muscles are on fire. I’m at the point where I am still struggling to accept this diagnosis and what happened and what my life is going to be like. I would love to have support. I don’t have any social media. I would love you connect with you if possible. Stay strong girl.
Hey there, Thanks for sharing some of your story. I am sorry to hear of your tough situation. It can be so difficult. Maybe try to look into community resources? I hope that things get better for you. Hang in there
Good day Queen! I got Covid pneumonia three years ago and I had issues with my legs and had to go to rehab to learn how to walk again. Then my Dr said I had tremors but my brain MRI was normal. So last month I went to NIH they found that I have Orthostatic tremors and Functional tremors. So this Thursday I will see my new neurologist and see what he will request for me to do next. I have Long Haul Covid with over 20 symptoms. My life is like a box of chocolate I never know which systems will come out of the box and they drain my energy so much. But I'm grateful to be alive! I will subscribe and share in my research, please follow me back. Yes let's stick together and share our story to educate the public. Thank you for sharing your story! ❤
You nailed it girl - just diagnosed after a year of hell and what seems like a thousand doctors and nurses looking at me like wtf are you high on tranq or flakka or just making it up? Now thankful for diagnosis but trying to figure out how to deal and not live a crippled life Looking forward to more videos, thank you
Thank you for making this video. I was sent to the neurologist because my fainting spells transitioned in twitching and making weird "grr'ing" sounds after fainting. The first time it happened we went to the ER because it's one thing to faint, but it looked like seizure. CT was fine, but they kept happening. The Neurologist was seemed great at first. I told him I thought it was most likely FND, or some other kind of overload but not seizures. He agreed, suggest Ketamine, or Psilocybin but we should do the EEG just be sure it's not epilepsy. The EEG was like torture, and when they results were ready they scheduled the follow up. The doctor didn't see me, a nurse came in and talked to my husband, not me. She kept her back to me most of the time only looking at my husband or the computer screen. She said it's not epilepsy so we can't help you. You will have to try talk therapy or magnetic therapy combined with talk therapy. I left feeling like no one wanted to help me and it's all an emotional issue so no one cares just get over it. I live in the Dallas area, you'd think I could find a specialist for anything here, but no. I don't have a lot of hope anyone will help me and I'll just have to deal with it myself. It's nice to see other people working on this same issue.
@@casseyklie Thank you, you have a really sweet heart. Sometimes I feel hopeless but then I remember I beat the odds to be born, I beat the odds over and over again in life. I can do this. I simply need to relax and listen to my body. Can't push it but if I listen really listen I get warning signs and by listening to them and doing the work both mindfulness and gentle training as my body will accept it I'm going to be ok. I've got it easy compared to a lot of people in this world. FND might not be a "champagne problem" but everything else is, so I have one actual problem but I'm way too stubborn for one problem to get in the way even if it has many faces. I am blessed. Thank you for being on my list of blessings
I recently began to have some unusual symptoms and I started looking for videos online of people who’re experienced similar symptoms. This in turn made me realise how many people are suffering out there. It’s so easy to get caught up in trying to travel and live a worthy life, and ultimately forget about those who have had their lives changed overnight. Your video just randomly popped up on my channel. You’re beautiful by the way. Stay strong and I hope you’re healthy in the future. If not, I hope you find purpose in this condition; in helping others deal with with their trauma and grief.
@@casseyklieI wanted to come back to this to say I was diagnosed with FND after being to a neurologist. I might start making videos myself. Are you happy with your decision to make videos on how FND has affected you ?
Thank you for posting! This is my situation almost exactly! Very helpful since most ppl either don’t believe what’s going on or make you feel even crazier
You're not crazy. Your body is talking to you.. Your doctors just don't speak its language... Keep seeking excellent practitioners... And patient driven communities.. Answers are out there for you... Keep hope
Thank you for your video! I am just turned 39 years old and was diagnosed shortly before my birthday with FND. I've had symptoms for about 2 years and felt relief when I finally received a diagnosis. I've been doing all sorts of therapies over the 2 years since my first episode of leg paralysis and have had minimal improvements. I've been off work for 2 years now. I have a whole "bizzard" of functional symptoms as well. That's what my Neurologist calls it. Some affect my movement, some cause brain fog or cause me to pass out, phantom symptoms (feels like spiders on my skin or a cat walking on my body), extreme sound and light sensitivity, muscle spasms, headaches, gastroparesis..... on and on and on. New symptom as of the last 2 weeks: gag reflex spasms and extreme nausea. My gag reflex symptom sort of looks like your face ticks. Same here. I just keep going. Day by day by day. ❤ Wishing all of you FNDers (and all the people who love us, too) the very best. ❤ I found reading the comments section here helpful because it reminded me I'm not alone in this. ❤
Thank you for watching and thank you for sharing your story ❤️ you are not alone! We are all in this together. I’m wishing you so much luck and positivity on your healing journey
Thank you Cassey, my child has just been diagnosed with FND. We're still learning about it. It's really impacted on the memory. I'm still waiting to hear from the Specialist what treatment there is available. Please can you make a video about what treatment you received.
Awe im sorry to hear that your child is going through that. Its so tough, but we are all here together. If you go to my channel ive made 2 videos about treatment so far! 💗 blessings out to you and your family
That is such the hard thing about this diagnosis. So many unanswered questions, so much unknown futures. Gotta keep on though. Lots of love, thanks for watching. xox
@@casseyklie there is a premiere of a film called Paradise on TH-cam today at 5:00pm PT about functional seizures if you are interested th-cam.com/video/eVI6uFYfUnc/w-d-xo.html
My 16 year old daughter was just diagnosed with FND. She has had seizures since she was 13. She has had therapy and is on anti depressants. She has been dancing since she was 3 and recently started going to the gym doing weight training, and that seems to help her a lot. The specialist told her its good to keep that mobility. She still has seizures but a lot less. Instead of happening everyday, maybe 2 times a week. There is an FND clinic in Toronto that im looking into going so that they can do a full assessment. I want you to know that i feel for you and you are not alone in this. Good luck in your journey.
I have had it for a year now and the first time they thought I was having a stroke at the emergency, after 2 months in and out of hospital I was diagnosed with Functional Neurological Disorder. I just had a relapse and right side weak, numb then paralysis. It's tough because you scared to make plans too socialize cause it happens anytime anywhere. But thanks for sharing
I hear you going down same road except my symptoms include chronic pain, leg clumbsiness, twitching in spells, speech issues at times, back problems. Major depression. There are physical signs of damage but not to an extent the doctors can say is causing the symptoms. Its a long road and a terrible journey.
Thank you Cassey for doing these🙏🏼You are a natural at explaining how you are feeling and all of what you're going through, even being comfortable with video-taping yourself in the mids of it... You are and will be a valuable Teacher for the rest of us, especially Young People 💕🤗🫂😇I wish you all the best as you adjust to living with the uncertainty of this terrible Disorder and hope you get Disability soon! It took me 3 tries but finally got it, be persistant and be gentle with yourself 💕🫂🌷🇨🇦💛
Cassie, thank you so much for this video. I was diagnosed with functional neurological disorder about a month ago. I also have epilepsy but they are two different diagnoses so I do have seizures because of epilepsy but I also have FND. I have been going crazy with these symptoms because half of the time I think I’m making them happen myself and then the other half is grieving because I know this is FND. balance is one of my biggest issues. It comes and goes sometimes I can walk perfectly other times I get, what I call, my shaky legs. Sometimes they’re not too bad and I can walk properly just off-balance. But sometimes I cannot walk a straight line at all. My legs go all over the place and it’s hard for me to even walk to the car door when it gets that bad, I have no option then but to go to bed, I can see that you have some speech problems as well, so do I, kind of exactly like yours, forgetting words, but also the words can’t come out of my mouth correctly and right away. I am so bad at spelling now, and my hands shake so much that I am using the voice text right now, my voice sometimes, like, vibrates as I’m talking all while my body is also trembling from head to toe. A lot of times I don’t realize that my body is shaking because it’s so minute, everyone asks me why I’m shaking. Of course, there’s the other times when the ticks happen and my hands go like yours. I could go on and on about my symptoms, I’m sure you understand. But really I just needed to desperately thank you for this video. I truly felt like I was crazy and I’m the only one that has it this extreme or even have it at all. I’m heading to the Facebook pages now. Oh, and the purpose thing. 100%. Just trying to do things to use up my time. I’m also back at home with my mom and currently waiting to hear about disability. ❤ I’d love if we could connect more on an easier basis. Like texting or fb messenger, whatever. This video changed my thoughts and has given me hope. ❤
Hey there! Thank you so much for watching and sharing your story. We are in this together 💗 so much love for you. I pray you find some ease. You can find me on instagram @ casseyklie
God bless you Cassey I wish I could tell you about my fight with FND and only recently diagnosed after nearly 40yrs if fighting for my life and the most insanely painful disorder and the beyond inhuman things done to me especially by doctors n Literally laughing at me for what I'm going through over n over even when I was down to 140lbs n could hardly even stand up and all alone through it all even to this day. I know my case is extreme but it's so impossible that I'm even texting you now. But I don't want sympathy I actually want to Help you in any way I can to be there for someone when there has never been anyone for me!!! N I know I can help because I wouldn't still be here now if I hadn't had to find ways myself and in that way this has been a blessing that I want to share with you and others that may be fighting this alone or otherwise. Kevin!❤❤❤
Awe hi kevin! 💗 thank you for sharing that. Im so sorry to hear that you’re also fighting this fight but you are not alone. We can all be strong together and help eachother. Much love!
My husband is showing signs of FND. Several years ago he was diagnosed with Meinere’s disease. Now he is having tremors and at times cannot move-it’s been awful. Getting into a doctor that specializes in movement disorders We’ve been told he could have Parkinson’s. My husband has always been such a hard worker and now he can’t move at times. Such a change in personality.
Hello, I just got a possible diagnosis for FND and it is a route that we are going to try, I guess I have to see a psychiatrist, I’m not really sure how all this works yet. But I really appreciate you making these videos! If this is my final diagnosis I’m really hoping to find a community.
Hello everyone with FND / FMD. I also got diagnosed with FMD. There is hope as it is curable and treatable. I was starting to have issues every morning before going to work but I was fortunate to connect with a great neurologist at the Mayo clinic in Rochester who connected me with a great treatment. It is called BeST technique. I am just waiting to get started. In the meantime, mindfulness, yoga and plenty of rest is helping me. Wish you all luck. It is tough going day by day not being able to control your movement.
Hey there - I wish you the best of luck with your treatment. Sounds like you got a good routine going for yourself and are managing your symptoms. I hope you get the result you are looking for!
Great explanation of what FND means! Also at 12:46 you're holding your lower back in the exact same spot I do! Where you having a tingly sensation there or what made you hold your back there?
Thank you! So when have episodes I get weakness and loss of function in my left leg. I also have issues with my hip and tailbone and get a nerve pinching feeling there.
Hi, Cassey, I have just been diagnosed with FND, I am a 52 year old male in West Yorkshire, England. My symptoms are a dint in my right temple, giving me severe headaches, for nearly a year, gave up my Job, weakness in my legs, and arms, severe loss of memory, everybody's symptoms are different, it's hard to keep going. Paul.
Hi Paul! Thanks for writing and sharing. It's so important for all of us to share our stories. I'm sorry to hear that you are struggling. And I agree everyone has different symptoms! Its such a complex diagnosis. I can empathize with you, its so hard to not be able to work and do daily livings. My best wishes to you. I hope you can find some ease.
You are not alone Paul... Find strength and peace wherever you can. It's a lot to bear. I have counselling weekly to deal with intense emotions that come with so much change and limitation. It helps a lot... Doesn't fix my body.. But helps me feel a lot better and not alone, with the things happening to my life and health
I got a lot of things going on. Limb weakness, changes in my gait, facial spasms, distorted sense of touch, numbness in the "pelvic region"... test after test and no results. I just found out about FND last week and I've been diving down the rabbit hole ever since. I think we might have found it.
Hi, a year on what medications are you on? I’m receiving no help from anyone or the hospital. All this came on a month ago, and I have seizures and tic’s too. So scary. What was your main sources of help to stop it all. Thank you xx
Hi there - im so sorry to hear youre not getting help. It took me a couple of years for my dr to help. It took it to get really bad and then going to the hospital and them trying to figure out what was going on but once they found it was fnd the help got little. I see a psychiatrist because some drs think it is linked to mental health but I prefer to not be over medicate and instead change my life style. But I would recommend reaching out to your local health unit, dr, psychiatrist, physio therapist, occupational therapist, natural path. All these people can help you! I dont know that it can be stopped but it can get better. Definitely managing your stress and having an overall healthy lifestyle. My tics have stopped though! Currently im on pregablin and venlafaxine
Good luck my dear... You are very brave... And doing a great job of connecting others in a way that helps combat isolation.. Keep up... And hope you find accurate answers.
@@casseyklie hi Cassey, have you researched Myalgic Encephalomyelitis and Post Exertional Malaise (PEM) (Hallmark of Myalgic Encephalomyelitis)... Understanding PEM and Myalgic Encephalomyelitis might help you with your own symptoms long term with managing your current condition.... And have you heard of the "energy envelope"? For people with this disease, the more energy we put out physically, emotion or cognitively... The worse our symptoms get. The key for Myalgic Encephalomyelitis is to stay well within the energy envelope, which can be infuriating and restricting.. But remaining within that envelope for extended periods of time helps slowly rebuild more function or at least more predictability or stability in symptoms and function. I am wondering.. If you research these conditions and the health management strategies for Myalgic Encephalomyelitis, if it might have any positive impact on what you are experiencing... As the symptoms you have caught on camera resemble what it looks like with myalgic encephalomyelitis when we extend past our energy envelope, our neurological system just starts farting...its like our wiring goes haywire the farther past our energy threshold we get. And with the PEM Post Exertional Malaise.. It can be hard to track, as the reactions to the use of energy physically, mentally and emotionally can have a delayed reaction... Journaling energy output and symptom increase can help. Anyways, I'm babbling, but I wanted you to know about these things, so you can start learning about them, because there may be some relief or further diagnosis for you in learning about these things, and if nothing else, it may help with long term symptom management strategies as you are so young... So piggy back on the folks before you.. If you tap into the autoimmune community, you will likely find a lot of symptom and symptom management cross over. You will especially find that the impact on life and function is similar, so you will find a lot of compassionate, caring folks in the autoimmune community. I was 32 when I sustained a spinal injury (nervous system issues ever since) and then a harsh virus in 2014...and more nervous system fall out. So there are a lot of folks that have blazed the self management path.. And the courses through... Self Management BC... Are also awesome.. At least when they were running in person. I took the "Managing Chronic Conditions" course through Self Management BC... Which also helped restructure the thinking around life and medical issues.. And I met some great folks too. Stay connected my dear, stay inspired... You are helping so many. And are you in Vancouver? I'm in Kitsilano..
@@casseyklie also, check out this video published by the Complex Chronic Disease Program at BC Women's Hospital. The video is titled : Mitochondria not Hypochondria
Sorry to see you struggling, I was also recently diagnosed with FND so understand it can be quite cruel... It's interesting to learn just how vastly different everyone's experience with FND is. For me the worst flare ups emulate the same pain and neurological symptoms I experienced with a previous back injury/surgery (and more). Am finding other people's stories valuable so thank you for sharing and I hope you find some relief with future treatments :)
Im sorry to hear that FND hasnt been kind to you as well. I think it is a very broad spectrum. Almost like when they dont reallllly know whats going on they put the FND label on it. I have heard of people getting diagnosed with fnd and then later on diagnosed with something else. Im glad you enjoyed thank you for the well wishes :)
My grandson is 10 years old and was just diagnosed with conversion disorder. I was looking at your video and he had the same symptoms. I am extremely scared for him.
my wife has F,N,D had 4,years now she finds dancing helps to get her balance back when having bad days standing on tip toes help get balance back she walk backwards better but need a walker go forwards ( rollator walker) she has started driving again all you can try do set goals every day some day you will reach your goals but if don't there all ways tomorrow . F ighting N ot D efeated
I feel for you. Thank you for sharing the video. I was going through a similar phase last year, where I could not drive and do work due to it. I have been taking an Ayurvedic tablet called Triphala, which in Ayurveda is known to help manage all diseases. It is certainly helping me manage myself better day by day.
What is your full list of symptoms. You mentioned fatigue. You mentioned the tremors. Have you looked at Myalgic Encephalomyelitis? ME, ME/CFS, chemical sensitivity MCS, and sensitivity to EMF's? Your doctor can reach out to the CCDP Complex Chronic Disease Program at BC Women's Hospital to explore your symptoms. They do doctor consults on complex chronic disease. Do you have any IBS soft/hard, do you any sensitivity to light or sensitivity to sound? Do you have any pain or increased sensation in your skin? Especially face, back of hands/arms, front of knees, tops of feet? Do you get PEM Post Exertional Malaise? That can be a hard one to track because energy output today can have impact on tomorrow.. However tomorrow you might be fine, but the next day experience fatigue. Are you able to be as physically active as before? If the answer is no, do NOT let a doctor encourage exercise, as it can significantly or severely worsen ME. Try looking online and checking symptomology of autoimmune disorders. There are a lot of online communities like the one you found in Facebook. Some naturopaths have education in autoimmune disease. Internal medicine specialists are a HUGE ASSET in sleuthing out some disorders... Don't give up hope on discovering root causes or potentially more accurate diagnosis... But it takes time as our GP's do not have training in these areas, and as much of the knowledge in these areas is patient driven and continues to advance in accuracy and knowledge faster than the medical community can keep up with... As not patients are connected through the Internet... Keep searching, keep up your hopes. Watch Jennifer brea's Ted talk
Wow thank you for all the info Leslie! I just looked up ME. I often wondered if I had chronic fatigue but I wasnt sure how it tied into my FND. But I have very bad fatigue. I am finding that I have to sleep after meals, short exercises that are 15 mins, social events that are 1 hour, shopping. I cant drive because I will have these seizures that make me fall alseep at random. it can happen if im over stimulated or stressed or anxious. If I do some things one day I sleep all day the next 2 days. It feels very important to find the root but It seems hard living where I do and not having much health care. Some days I want to give up on myself. It is quite hard. But I really really appreciate all your info
@@casseyklie hi Cassey,.... Yes, I was hearing all that in your sharing in your videos... And knowing my own disease, and it's impact on function, I was hearing you in a way you might not have a lense on yet.... Please quickly become familiar with PEM (Post Exertional Malaise)... And symptom management strategies for Myalgic Encephalomyelitis,.... as regardless of your eventual diagnosis..., I think you need these management strategies immediately... For your well-being... Please do look into it quickly... Definitely Watch that video.. Mitochondria not Hypochondria... As you may potentially be struggling with ME Myalgic Encephalomyelitis... Undiagnosed... And be driving yourself and your symptoms into the ground... Those were the alarm bells that were ringing for me when I was watching your videos. And mental/emotional strength is also crucial to well-being with serious illness, ...and I Sense... you are at a bit of a turning point mentally/emotionally... I feel strongly that you need support from other folks that have blazed a bit of a path ahead of you... As at some times, the experience of chronic illness can be quite fatiguing, it can wear down your reserve strength...even for the strongest among us... and can be quite overwhelming, and it is quite possible to either feel quite terrible emotionally, or lose your way, or... Well,... There is a lot of depression and suicide in the chronic illness community.. So it's really key to have support of others with complex chronic illness, and to have ongoing mental health support for the pressures, stressors and changes that chronic illness creates... Because life is hard enough without all this... So please ensure you are well supported emotionally. Personally I have counselling weekly... Which bridges the issues that come up, and strengthens the self management strategies I've worked so hard on.. And keeps me on track. Counselling is expensive, but with the pressures of constant chronic illness, counselling for me, is as necessary as water. There are free services, and sliding scale services, and counsellors that are students... And There are also lots of online support groups for chronic illness as well. Any online group in the autoimmune community would be supportive and useful to you. And you may benefit from the support group run through the ME/FM Society of BC. And I co-facilitate a couple of support groups for Chronic pain and chronic illness as well. I'm not sure where you live, but both of these services are available virtually.... 1. (the ACT program of student counsellors at Burnaby Counselling Group) (their counsellors are from Trinity Western, and consistently excellent listeners)... And... 2. ADLER counselling group on west Broadway in Vancouver(NOT Adler university)(also available online) .. If you want a student that's excellent, you could ask for Lindsay, or if you can afford full price, their regular counsellor Kirsty Lewis is AMAZING.... and I have other resources if you ever what to chat or reach out. Good luck my dear... With you in spirit.. Xo
@@casseyklie FYI... Your description of your energy patterns is the exact description of PEM. it's quite possible to have a dual diagnosis, or incorrect diagnosis. Also look into EMF's as people with autoimmune are much more sensitive to EMF's... Make sure yih are not sleeping or spending time near a digital electric metre which is on the outside of homes.. They generate a tonne of EMF. And routers, computers, etc. There is a device you can get, not sure where, as I haven't had to look into it fir myself, but I hear others talking of it, so I know it's available.. Anyways, it's handheld, and measures EMF's in the home. A good rule of thumb.. All electronics booted down at night or when you're resting.. So not keeping your phone near you at night. Basically because your energy is so drastically impacted, you want to mitigate any of the common factors that can be contributing to your energy issues. Did you watch that video yet? It's just 6 minutes.. And it's packed with info about cellular function of the mitochondria, and overall body function with autoimmune. Do check it if you haven't already... It's published by the Complex Chronic Disease Program at BC Women's Hospital, and the video title in you tube it Mitochondria not Hypochondria. So, I've covered PEM, EMF's, your energy, and encouraged you to dig deep into some research and potential diagnosis of M.E (the purpose being to become quickly educated on disease management for M.E)(the purpose of that, being to help you mitigate your current symptoms, and to ensure they don't get worse if there's anything that can be done to minimize current symptomology, which in turn also minimizes long term disease impact)... So, let's talk about other contributing factors : boundaries, not just for others, but for yourself... You yourself ultimately really know what you can and cannot do, what you should Ir should not do, and how your body and brain may react to output or input of energy/stimulus..... So... It comes down to careful and mindful observation of impacts, with the eye on minimizing or stopping negative impacts, by not overdoing what you know might influence your symptoms... Boundaries with self are some of the hardest to watch, be aware of, and uphold.. However, you yourself are the one who holds the sense and knowledge of how much is okay for you day by day, hour by hour, minute by minute. And never be swayed by what others require of you, ask of you or expect of you. I'll give you a concrete example of one of our support group members... Cooking Xmas dinner for her family, when she knows it's not within her health status without causing harm. Part of it is keeping up with what her family and relatives expect.. But a bigger part is keeping up with what she expects of herself. It's a hard pill to swallow, but ultimately her family doesn't want her to get sicker, so they will rally. But her own expectations are harder to soften.. But necessary in order to not cause setbacks, or decline of health. Okay, so we talked about boundaries, self awareness, you as your own boss. So let's talk about journaling. I will admit, it is a tool I have zero discipline with myself. However, there are folks in the autoimmune community that get great benefit from tracking symptomology with their practitioners through journaling. Some use online apps, some an actual journal, some just draw or doodle the main theme of the day. Some folks have seen overall trends up or down, through reflecting on or sharing journal segments with practitioners. Thus can also be super helpful for the emotional side of dealing with chronic illness. I can't emphasize enough, how absolutely integral it is to have emotional support. Professional, ongoing emotional support. Once a month, once a week, you name the interval, and adjust the amount or frequency to match how much stress or change you are under. Stress has a massive impact on autoimmune disorders. And sleep is an issue with autoimmune disorders, and loss, grief, and ongoing health stressors... It's just too much. You're not meant to bear that much.. Nobody is... And with chronic conditions, the reality stretches ahead like a road that some days you don't want to walk down... I cannot emphasize enough how integral professional support is in this aspect of the journey. There are lots of online groups, and support groups. A good guideline is that support groups should be constructive, and must have focus on positives and strengths, otherwise the out pour of hardshiptips the balance of the group.. So when selecting(or creating) supports or groups, ensure there is an equal (approximately) focus on Positives and negatives. Gratitude 21 day challenges are also good when you get in a funk... As it has been studied to cause chemical shift in the mind and emotions... So use a 21 day gratitude exercise as an effective tool. And it can be simple. I'm glad it's not raining today. The content of the gratitude is not important, it's the mindset that shifts you. Anyways, I have M.E Myalgic Encephalomyelitis, so this is a, lot of output for me... So I'm going to stop here... But do quick research please on disease management for M.E, ME/CFS.... as regardless of diagnosis, you are living with some of the symptomology, and quick immediate action on mitigating some of the things that increase symptoms... Is necessary where you're at... Even without diagnosis... Please start with that video on you tube... Mitochondria not Hypochondria.... And please ensure you have emotional support, as the journey can get dark. Definitely can get overwhelming, sometimes can surprise you, so having support set up, and engaging regularly with emotional support is also key to wellness with autoimmune diseases that impact daily function. Good luck my dear... If any questions, do let me know. And there are great online sources. Try the website for CCDP Complex Chronic Disease Program at BC Women's Hospital, and try the ME/FM SOCIETY OF BC for resources and support groups, and they have advocacy groups making change for the long term landscape, like their MLA and ME program, as sometimes being part of something bigger can also help balance out any feeling of powerlessness, as we can't hit reset on our body.. So being a part of creating change can be empowering in a situation that is disempowering...can be helpful(being mindful of one's own health limitations)... And volunteering... If able... Also really helps with connection, belonging, purpose, and is hugely an antidote for how isolating chronic illness can be... So stay connected in order to stay hopeful... And connection is a huge piece of quality of life. As chronic illness can rob us of quality of life... So constantly examining ways to add or ensure quality of life is also integral to overall mental wellness with chronic disease. Anyways, I'm tired in the head... Reach out as needed. Xo Leslie, Vancouver BC, Canada
Sorry super long message... But this was all on my mind when watching your video... And you may get some long term value out of these, messages.. I encourage you to print them or screen shot them.. As, you are still early in your journey, and some of it may make more sense later on... And some bits are good to come back to a couple times a year, as it's quite possible to forget parts of disease management when there are so many moving parts and fluctuating symptoms. I wish you all the best. Xo Leslie, Vancouver BC
What medicine have you been taking that’s working for you? I have FND, but I work from home and thankfully it hasn’t impacted my job too much. But I suffer constantly with nerve pain and twisting and jerking in my right arm/shoulder and neck.
For nerve pain I’m on pregablin, however it does cause fatigue and memory issues and it’s hard to come off of! It’s also good to minimize the severity of tremors or convulsions!
Just started the video and have to say, the quality isn’t as bad as you think, and the light is rather flat and balanced (think the clouds are like giant softboxes, making the light less harsh and shadowy. It's not as dramatic as direct sunlight, granted, but as a photographer I do enjoy cloudy days for portaits! I think it looks nice - just for the record. Now for the rest of the video!
Was it FND? or the benzo you were on? Because everything you described I had....was even misdiagnosed with FND which I'm still pissed off about because it's a diagnose of exclusion like IBS. I got on a very strict diet and I got off my benzo and my symptoms went away eventually and I say eventually because benzos can last up to 18 months. But it's been 4 years, no symptoms
Try anti-oxidants... Resveratrol from Finlandia pharmacy West Broadway Vancouver BC... Ask their naturopaths and herbalists first... And their compounding pharmacy can Check drug interactions..
I got diagnosed in 2013 I have it really bad my days are hard to cope with when I have episodes all my body locks I can't control none of it I have little sleep comas after.
Hi im Sarah from New Brunswick i found out in july i have FND i spent 19 days in the hospital and hospitals are a trigger for me so i eneded up bed bound . Im terrified and no one can tell me anything about it . I really appreciate your video thank you for sharing ❤
@@justinebeliveau1346 Hi nice to hear from you. I'm half french but I can't speak it unfortunately, just some words . Would be interested in hearing about your experience and diagnosis. I know no one who ever heard of this seems really strange considering it's the second highest reasons why people see a neurologist 🤔. 💜
@@sarahcomeau7234 Ok! we could talk english, this is not my first language but i’m quite fluent (my my brain works 😆) I would love to talk to someone who live with it too! Let me know how we can reach
The doctors have diagnosed me with the same thing you have but I started icing under my legs with a hamstrings are and my arms the only thing that would help me is by doing Yin Yoga for the nervous system in the meditation and also I started looking up TH-cam videos and doing extra exercises I don't know if this would help you but I was doing good for about a year or two and proof I'm back to square one again so I'm starting all over again doing everything I did before it is not easy dealing with this
Hey, thanks for sharing your experience. I find mediation helpful - I go to the chiropractor and they have a special set up called brain tap and it comes with fancy headphones and a band that goes over your eyes. You close your eyes and while you do the 20 min meditation the headphones have infrared lights to help your ears accept certain tones and the meditation has binary beats and duel voices. Apparently 20 mins of this meditation is equal to 3 hours which is amazing. I would go in there ticing really bad or having issues walking and come out pretty well fine. I havent found much else helpful except sleep. Although I am slowly getting better with medication changes I would like to be drug free one day. I hope you find ease. xo
Was there anything significant or a combination of things that triggered a backslide in health? Any major stressors, disruption in sleep, new foods or chemicals, any physical or environmental stressors, or combination of these? And have you looked into Myalgic Encephalomyelitis...
Pamela liegh... Names of good neurologists? Any names... I support quite a few people with chronic health issues, in BC... And neurologists are something we are often seeking... Especially good ones...
@@casseyklie hi Casey, I couldn't find that in google... Is it UBC? And if you ever need to meet or chat... You can reach me through the ME/FM Society of BC... Just email, and ask to be put in touch with Leslie P, from their volunteers in the my MLA&ME project. And if you reach a dead end, you can ask for Hillary or Sue... They can put us in touch if you ever need or wish to reach out. I know there's a way to directly reach out to folks with you tube channels, however, I don't know how. I'm a technology dinosaur :) almost 50 years old... We still learnt typing in school... On type writers :) and all my college papers were still handwritten... Lol.. Gone are the simple ways.. However, through the wonder of technology, you are reaching a tonne of folks.
Cassie I was diagnosed with fnd about 4 years ago I was taken off my eltroxin for my thyroid by a specialist I loose my speech like you I am fully aware of what is going on around it’s like I’m in a trance I don’t know what it is I lost the function of my bladder I have 2 catathers in excuse my spelling brain fog I wear adult pull-ups because I’m still bypass and in chronic pain because of the wetting
Hey Geraldine. Thanks for sharing a bit of your story. That sounds so stuff. I have chronic bladder pain and have for years. It is such an uncomfortable hard to deal with issue. Im sorry to hear about the loss of control. I hope that you can find some answers and ease in your journey. Just remember you are not alone in this 💗 wishing you the best
Please check symptomology for autoimmune disease.. And see if a naturopath can uncover any clues, I know there are tests that can be done that are not widely available, that can help diagnose different toxicities and bacteria in the body... There ARE ways to figure out a lot more than the average doctor has training in... Please look into the autoimmune community.. Start asking about what types of tests are out there.. Amd watch for symptoms similar to yours. For example, I have Myalgic Encephalomyelitis.. And much of what is shared here is common in the ME community.
@@casseyklie Good evening Cassey. I Hope you will understand my English. I make mistakes in French with my condition but I love speaking and writing English. I feel younger when I used to travel for my studies ( In England, USA and Spain). I’m starting to learn Portuguese for my pleasure and make my brain working …🙂
Hi from France. I have FND. I’m a 51 years old woman. My country doesn’t know very well this condition. I speak quite fluently English. Are you English ou American? Take care of you. Friendly. Chris.
En France, il y a l'association Cap TNF, le Dr Parrain, l'hôpital Avicenne qui peuvent être des ressources importantes pour ceux atteints de cette pathologie
Might be a stretch but allergies can cause symptoms similiar to what you mention. May be worth while to get allergy tested if it is an option. Allergies cause inflammation in body creating problems. Regards
It can be inflammation based... Which can be deeply impacted by fluctuating hormone levels... Look into education and understanding around inflammation, anti-inflammatory diet, etc... There are some ways to mitigate the impacts of hormones on inflammation
I was going to ask if your symptoms get worse with hormonal fluctuations. I’m so sorry you are going through this. I came to your video because my last visit, my neurologist mentioned it possible I could have a functional movement disorder and not epilepsy. Or at least the things I think are seizures may not be. I have auras of the feeling of dread and rollercoaster in my stomach, then twitching that comes in clusters for a few seconds. Usually it is one shoulder that jerks. Also my hand will do like yours does sometimes. It does a writing motion. It has even happened in my sleep and I woke up to my hand “writing” I am on keppra and it does not seem to work. I started researching FND hoping that I could figure out what is going on with me. My systems get way worse with hormonal changes. I have gone vegan to curb inflammation, but so far I still have these episodes
Hey there. Im sorry to hear your daughter has been diagnosed at such a young age. I couldnt imagine how hard that must be. I had a hard time with my diagnosis too. Im wondering why she doesnt want to accept it? Im sure theres many reasons. For me I was in complete denial that my body wasnt able to function the same and tried to keep doing sports that I used too but found out quite quick that I couldnt. It is also hard to have an unknown future and not know how to treat the darn disorder. I would say all of these things are a part of grief and looking into how to guide her through grief may help. It looks different for everyone. Maybe getting some outside support like a counselor and making sure she still tries to lead a normal life as much as possible depending on her symptoms. Wishing the best of luck to you and your family
We each know our own body... Get her to write out her symptoms... And at 14 she can begin researching online... She may discover something that no one has brought up... Our doctors are not trained to know a lot in this area... Self education is the best solution to finding adequate and appropriate care/support... And your daughter may take on more ownership of her body and health issues if she takes on the project of researching what else it could be... Try autoimmune community... Try Myalgic Encephalomyelitis community.... There are people out there she can connect with... And emotional support is so key... It's really huge to wrap your mind around life changing illness.. Teens have enough going on without adding this too. I was 32 when I first started having serious health issues... That was young enough... It's got to be harder for her..
I was initially diagnosed about 11 years ago. The symptoms you have in your videos are almost exactly what I was experiencing, so many similarities. The specialist neurologist just called it a movement disorder, gave me no useful information and sent me home saying it might resolve on its own in a few months. That was it. Pretty much useless. A few months later I was able to find a holistic Dr who helped me tremendously. What I've found over the years is that my FND is worsened by what I'm eating. When I eat foods that cause inflammation it gets so much worse but when I cut out sugar and processed carbs it clears up significantly. I've been really strict for over a month now and I barely have any of my FND symptoms. I might jerk/spasm a few times when my kids make a loud noise whereas before I wouldn't be able to get up or would almost fall. It only happens when I'm really tired too, instead of all the time. Something like a keto diet that is very low carb or doing a stricter elimination diet to find food triggers could really help. Nobody ever talks about dietary causes for neurological or auto immune issues but I believe it's a big component.
@@casseyklie Cassey, you seem to be pretty informed on FND, and that may be what you just stick to as explanation. I had the sense that the onset of FND was sudden over a relatively short period of time in your life, and not something that has always been a problem. Like being born with ADD, or ADHD or Aspergers, where in those same difficulties have always been there since childhood. If this is true, the one of many possibilities, but not uncommonly, is chemical exposure affecting your brain functioning. You could look up neurological effects of organophosphates I suggest. To check the kind of neurological symptoms and changes that occur for people exposed. And perhaps organochlorides. These two names refer to whole groups of chemicals commonly used in our modern agriculture and society. There are hundreds of different specific chemicals that fall into each category, organophosphates and organochlorides. A number of these chemicals work as well on human biology as on pests. It is just that we are a lot bigger physically and so it takes much more of the same chemicals to affect us. One can get a health impacting and unknown chemical exposure sometimes from just walking through a park that has been sprayed, or swimming in a lake with recent chemical release into it somewhere, or driving through a region with agricultural spraying of fields, or local government spraying of roadsides has been happening not long before you drove or walked along that road. The presence of recent spraying is often invisible once the machinery has moved on. You might then pass through the cloud of residue not 20 minutes later. Certain other conditions like heat of the day, and wind direction could play a significant factor on the level of exposure being more intense. And so by chance, you get a unusually high spike in chemical exposure that is at a level that is poisoning and does harm to your body and brain in some ways. A case of you being just in the wrong place at the wrong time. Sometimes you get a significant health impacting exposure in view of by chance having two separate exposures within weeks. It takes time for the body to remove low level chemical exposures that normally you might not notice. Depending on the two different chemicals, the first may make you much more vulnerable to being affected by a second chemical at much lower dose. So your body and system is extra sensitive and vulnerable at the time of the second exposure. These things can happen with no physical symptoms at the time of exposure. Another source of brain impacting chemical exposure can be from staying in a cabin or building that has been sprayed prior to you getting there. If your symptoms began in weeks or a month after moving into a new accommodation, or workplace, then this could be an explanation. For those that get exposed to these kind of chemicals in a work related accident, those people get all sorts of neurological and health problems. Some of the symptoms and difficulties and cognitive changes are quite specific. Good to look those up if you can. Eg look up "Symptoms of organophosphate poisoning". Or "neurological symptoms of organophosphate poisoning." Unfortunately there is not a lot you can do about it once exposed, other than good healthy food, some exercise, and hope your body gradually removes the chemicals and heals the damage as best it can over months or years. If you learn more and suspect this may be the cause of the changes and difficulties you have been experiencing it is important to identify how you may have been exposed, eg from a new place you are living or starting a new job in an old building, recognising that the problems began weeks after that. This is so that you are not still being exposed. If this is the case, ask around if others staying in the same place are having any strange changes in their brain functioning and health as well, similar to yours. Another possibility is exposure to mold. The stuff that grows in damp places inside buildings etc. Often dark patches on walls or ceilings, behind sofas, in bathrooms, any damp places. Mold sounds lame, but for a number of people it can be quite impacting on brain function and health. The toxins are called mycotoxins. There are specific symptoms that are associated with mold exposure. Again net search. There is even a thing called "sick building syndrome" where lots of people get weird health and neurological symptoms in a particular building, where in either mold infestation or past pest extermination and hence ongoing chemical exposure is suspected to be the cause. You can look that phrase up. Separate to a general Google search, Wikipedia is a good online resource to look things up. Start there perhaps to learn more. Also you tube searching for people talking about their health changes and challenges and symptoms from either chemical exposure or mold exposure. I have supported many people over decades with Chronic Fatigue Syndrome, ME, now also Long Covid. These conditions bring strong brain and cognitive symptoms and changes. A number of individuals were in places, or think they may have had direct chemical exposure. They also find afterwards they become much more sensitive to even every day household products that have various normally harmless chemicals in them. I wonder if for some people, there is confusion in diagnosis between a post infection syndrome like Long Covid, and FND. So if your difficulties began after a flue or cold, or covid, or glandular fever, it may be worth checking out this possibility as well. Good to trust diagnosing doctors, but also doing your own research so you can ask and understand why they think that diagnosis is what is affecting you. The symptoms between a number of these conditions overlap a lot, and sometimes a person gets one diagnosis, but on their own research and talking to others it becomes clear to them that another condition with similar symptoms and changes fits what is happening to them much better. In which case you need to raise this with doctors and seek additional medical opinions. Taking time to give you a considered reply as you matter as a human being. We all do. Keep seeking answers. Hope this helps.
@@casseyklie Hey cassey. I posted a long but carefully considered reply and it has disappeared. Not sure if that is yourself or utube but just letting you know.
Hi, I don't know but is doesn't look like there is nothing wrong with your fysical health. I think the reason they find nothing is because they don't know it. It could be something with the food, parasites, lack of vit b, mold in the brain. My problems became bigger with bread, and thing like that. Cold weather makes is far more worse. Nsaid's helps me and benzo's. But i'm not able to do things with effort. Bowing my head is terrible and makes is more worse. I take vit d,c, zinc, and ginger in the thea. I've some appointments in the hospital but they already.said the think that everything would be negative.
Nsaids and ginger anti-inflammatory... I use Diclophenac twice daily.. Helps me tremendously.. No tremors now unless extreme fatigue, or when overstimulated by stress/emotions/physical output etc..
@@eliezer1060 everybody's body is different, and reacts differently with different medications. For me personally, I have taken 50mg diclofenac twice daily, and 20mg of baclophen twice daily for more than 10 years. My stomach is more affected by the constant stress on the body..including chronic levels of inflammation... Impacting the gut and digestion and sleep. Controlling my inflammation levels has been the key to wellness for me... Eating an anti-inflammatory diet, Mediterranean diet, paleo diet... TONNES of water has also been key for me. Digestion and stomach health are central for me, as so much of our health depends on our gut... Please do whatever you can to access professional advice for your ongoing gut health. I work with a Nutritionist that I access through a women's centre, and through Vancouver coastal health.. Whichever government health organization you are under.. They have primary care clinics for folks with complex care.. Providing access to counselling, nurse practitioners, dieticians, Nutritionist, etc.
@@eliezer1060 I have to watch my fatigue levels... I had to learn to stay within "the energy envelope"... That was tough, but I now have full mindfully awareness when I am using more energy than the body can spare... That's key in reducing symptoms for me... The more exhausted I am emotionally, cognitively, physically... The more symptoms I have. My tremors have always been mild compared to yours.. And way less invasive... But just like them... It visually looked like my tremors when you shake.. But like someone turned the volume up on the Richter scale. A lot of people with ME Myalgic Encephalomyelitis report tremors like yours with exhaustion.. When we run out of cellular energy... Try watching a you tube video by the CCDP Complex Chronic Disease Program at BC Women's Hospital.. It's titled.. Mitochondria not Hypochondria... And see Jennifer brea's Ted talk(s)? She is an avid advocate for complex disease, including autoimmune and Myalgic Encephalomyelitis... In the states it's under ME/CFS... But that term is no longer politically correct.. As chronic fatigue conjures up the vision of folks parked on the sofa... Which is a huge insult to the complex inner workings of a body that is struggling neuroligically on a cellular level. Do take a look at any info you can get... There is so much available online.. And lots of patient centred communities like the Facebook group you found. Most of the living breathing workable information of how to live well with chronic disease... Is found in the patient community, thanks to very few excellent practioners that take the time to educate their patients... And thanks to the wonders of the Internet... Where patients can congregate, and exchange information... Stay connected, stay brave. Maximize what you know of the body... And NEVER push through symptoms... They are talking to you... Find out what the symptoms mean... And work on supporting what the body needs.... And lots of water in my case. Some people have also benefited from detox, and heavy metal detox... There are tests, specialized, often through naturopaths I think... You have to seek around, but you get different diagnostic tools more than your doctors have access to... Keep the faith... And please keep sharing your journey with others... Your video has led me to reconnect with how far I've come... Even though we are not in the same point in our journey... It still really helped to find your video... Also with chronic illness.. It just drags along.. Sometimes I drag it behind me, sometimes it drags me... And it's easy to lose perspective.. Even when you practice mindful awareness of how you're doing.. (I use weekly counselling to stay on track as it's a hard road).. But even with that, you can feel a little lost... So thank you for your videos.. You reminded me that I'm on the path... I just gotta stay focused.. Sometimes hard not to burn out, as the situation doesn't resolve. Adding things that bring joy has helped a lot. Do you have a pet? Animal. Companionship is also excellent for mood with chronic illness... So you're not on you're own. And FYI.. I hear you about moving back with your folks.. I was 32, and parents were divorced, there was nowhere to move back to... As frustrating as it is... You are in a good spot(unless it's not good there)... Being supported when living with chronic illness is really important. I was single for a long time with this illness... And while being with my partner hasn't changed my illness... It really does make a difference in not facing each day alone... Support is key.
My son was diagnosed with FND 13 months ago. He is 41 and has a family of 4 children, ages 2-10. He too has been unable to work or drive. He is working with the FND clinic at Mass General Hospital in Boston. It's been so fustrating trying to identify the root cause---which no one has been able to do. He has done PT, OT, Physcotherapy, LENS treatments, cranial sacral therapy, and is currently working with a hypnotherapist and doing cognitive behavioral therapy. The results have been an ever so slighlt improvement, but ultimately he has basically become more aware of the triggers and how to avoid a full blown episode by doing breathing exercises and wearing noise cancelling headphones. It seems that acceptance of the situation is all that is available right now. So, so sad. Keep getting the word out by doing these videos and keeping the FND population in touch with each other. You are a very couragous young woman. Continue to care for yourself.
Hi Becky, Thanks for writing and sharing. I'm sorry to hear about your son. That is a lot of therapies! I am happy to hear that he has access to a lot of different therapy though. Maybe in time. I have definitely seen a change with my health with acceptance and being aware of my triggers and seeing small changes through that. Thank you for watching and thank you for such kind words! truly blesses my heart
Please look into Myalgic Encephalomyelitis... You are mentioning hallmark symptoms
I’m a grandmother also diagnosed with FND. I live in London England and I am entitled to disability living allowance and rightfully so, FND is a cruel and unpredictable disability that leaves you unable to work and we sadly cannot live on fresh air. My heart goes out to you 🙏
Thanks for sharing your experience ❤️
I was also recently diagnosed with FND, and discovered on my own, that when I do spinal lengthening practices, it allows my nervous system to work more efficiently, and completely eliminates the symptoms. For example, when lying down, I make sure that my chin is slightly tucked, and I lay perfectly flat with just a thin pillow. I had to provide the pillow myself, because the hospital pillow was too big, also, when I was standing up, I would lift my arms above my head, tuck my chin back so that my cervical spine was straight, then lift my shoulders up and raise my hands above my head, holding them together and doing my best to bring my biceps to my ears. Also, I squeezed my butt cheeks together to provide stability for the lower spine and allow more ease to lengthen my spine up. And finally I would reach as high up to the ceiling trying to touch it. When I would do that, I could walk perfectly without any mobility issues. And all the strength came back in my muscles. And all tremors stopped. So for me, I’ve learned that is super important for my healing. in addition, I wear earplugs because the amygdala is highly sensitive to unexpected sounds and movements. So when I’m in nature, away from people and busy places, all my symptoms go away. I also discovered that just by being in the hospital with all the unexpected noises and nurses and doctors coming and going, it continued my symptoms and even made them worse. So the hospital was not actually helping me to heal, and I needed to be transferred to a retreat center. If possible, it’s best not to hang out with family because they often create more stress and drama, which continually exacerbates the issue. What I’ve discovered is that it takes a couple of weeks for the amygdala to come back to baseline and no longer be sensitive to all the input. And now I’m symptom-free and I never needed to take medication either, I’m curious if these tips that I’ve discovered might work for you if you have FND.
Wow! Thats awesome that you’re symptom free. What an interesting idea. Ill have to try them out. Thank you for sharing
Do you happen to have hypomobility or heds as the amagdalia is larger in us check out j Eccles I now no I have asperger's causation for this
Spine lengthening and stabilizing stretches helps me too.
@@irineojasondo you have hypomobility
Just felt stiff. I just needed to consciously relax and i was able to move more.
When I walked, it felt like something was preventing me from moving my body.
I was finally dx with FND with non-epileptic seizures in 2018 after years of neurologists telling me it was psychological while psychiatrists & counslors telling me it was neurological. I also have myalgic encephalomyelitis/chronic fatigue syndrome, craniocervical instability, Autism, Adhd, and 2 balance disorders. The fight for finding the correct dx is real. I have found the my sensory sensitivity is now through the roof, and daylight or overhead lights will trigger my seizures faster than anything else. Thank you for putting yourself out there; reading has become nearly impossible for me so slogging through written info for *anything* out there is pretty impossible. ❤
Wow thank you for sharing your story. ❤️ my heart goes out to you
Do you have heds with the autism it's the autism causing mcas ime late diagnosed heds autism ADHD CFS 27 years fybromyalgia 6 amagdalia is larger yes feals like what to pursue next ime doing CCI to
Thank you so much Cassey for your courage in sharing your FND diagnosis and what you've been going through. I also have FND and have been struggling with it for the past two years. Like yourself, all my tests came back normal. It's been a crazy and lonely journey for me which has been life altering. I feel for you and I understand what you're going through.
Awe Alex I'm sorry to hear that you are going through the same thing. Thank you for sharing. It is definitely lonely, challenging and frustrating. Thank you for your empathy. I really hope you find that help and some ease. Sending lots of love and healing vibes to you!
I have Myalgic Encephalomyelitis. I get tremors like that.. But very mild. Listen to your body... If it is telling you not to do certain things.. Then listen to body. Don't go on auto pilot. Don't push through. And definitely don't fatigue yourself mentally, emotionally or physically
Do you get much pain
Thanks for sharing. My experience is very similar to yours, as far as symptoms, getting diagnosed, out of work, financially struggling. Looking forward to more of your videos!
Awe thanks for watching and sharing. I hope that my journey can help you in some way. We all gotta stick together in this. Sending my best wishes!
I was diagnosed with FND- PNES this year. Thank you for sharing your experience with this.
Also, it is not true that you cannot have a seizure while conscious. I was put in an epilepsy monitoring unit where they had me on an EEG for a week. They found that I was having epileptic seizures and non-epileptic seizures.
Thank you for watching! And you can have seizures while being conscious- I think they are called focal seizures
My 12 yr old daughter was just diagnosed with FND. Thanks for making this video. It helps to know there’s more out there with this.
Sending big hugs and lots of hope 💗
Wow this made me tear up, I am so so sorry you're going through this. I have a functional gastrointestinal disorder that started about a year ago and has made every day feel like a battle with my own body. Not the same condition as you but I know how it feels to not get any answers from doctors and to feel like you've been given a life sentence. Take care of yourself and I wish for better days ahead of you.
Hey Zac! Thank you for your kind words. Ive never heard of functional gastrointestinal disorder, I'll have to look it up. But yes chronic illness is so darn tough. Thanks for sharing a bit of your story. I wish you ease and healing. xo
I'm so glad that TH-cam recommended your video to me! I have FND too, and my symptoms are pretty similar to yours. I'm so sorry that you're going through this. Thank you so much for posting. This honestly helps me feel just a little bit less alone. I wish you the best of luck and hope that you are able to find some kind of treatment that helps you improve.
Hey Morgan, thanks for the sweet comment. Im glad youtube suggested it too! Im sorry you also have to experience it, it can be quite taxing on the body and mind. Sending healing energy your way !
It took 8 years for me to finally get a diagnosis here in Omaha, NE. We thought it was some type of epilepsy. I had a neurologist straight up ask me if I wanted an epilepsy or migraine diagnosis because he didn’t know what was going on. It’s why I got discharged from the Air Force. The episodes I had then was physically being unable to talk for like 3 hours at a time and since July of 2020 I developed face and neck tics that have been helped a ton by CBT. I was so hopeful when I got a new diagnosis that I found an answer and could have a treatment or cure and when my behavioral therapist who helped me with CBT told me it wasn’t curable it broke my heart. It’s been so crushing dealing with the pain and anxiety the tics give me.
Hopefully you’ve found something now and things began looking up!
Hey from Omaha. Diagnosed at UNMC a year ago after they thought I had a stroke. Now just trying to figure out how to get better, CBT and EMDR helping…it’s lonely, nice to see a fellow Omaha resident 🧡💙
@@Kerrylovesmusic hey! What sort of symptoms do you have if I may ask?
Also yeah good to see someone nearby that has also been through the same!
@@Owlberightback I was admitted and diagnosed by two different doctors with stroke. The MRI and EEG both showed stroke. Total right side not working, confusion, couldn’t walk or talk. They sent me to UNMC and there I was diagnosed NOT stroke (?!) but FND (2nd opinion agreed) I have tics, drop seizures, focal seizures, absence seizures. I have migraines and random body movements. Mental illnesses have gone through the roof, don’t really want to go into details in public, but fairly dramatic. I couldn’t read for a long time, had to retrain my brain to listen to music. I am sitting here with a black eye from a drop seizure onto my wooden kitchen floor. Physical symptoms too many to mention on here. It’s a lot. I feel like I am on a damn raft in the ocean and sharks are circling at any given time. 🤷🏼♀️
@@Kerrylovesmusic it was a UNMC neurologist that wasn’t able to diagnose me correctly the first time. Hope you find some resolve with those seizures ❤️
@@Owlberightback PNES is the diagnosis on that, no meds available for non epileptic seizures other than anti anxiety meds. It’s all just a damn mess. I hate it.
Thank you, I was just diagnosed last week with the conversion(5).. Still researching. Stress, emotions, anxiety & engaging in activity set my "flairs" off ..very disabling. I subscribed to you on you tube as I am deleting f.b app. So that I may work on self healing. I feel this is also a spiritual journey so I'm going to move forward with baby steps.
Hey April, I will happy to chat with you and help, support you in your journey. Feel free to connect via info@beyondrehab.org & more about my work www.beyondrehab.org
Thank you for the subscribe, it means a lot! I will keep up posting my journey in hopes that it can help others. Blessings, and yes take it day by day. Try to create a good support system and listen to your body as best you can 💗
I have a functional seizure disorder as well. And crazy sensory issues. My senses are through the roof. I fall on the floor with one load bang. But with these super senses I have super powers in how I see and perceive and experience my senses as they can bring equal pleasure and pain. I believe it’s spiritual as well.
@@bxstar5276 I haven't checked this in awhile, but today your message appeared upon waking up. I had every symptom of fnd including unable to walk or complete sentences as well as non epileptic seizures until Sept 8th when I went to bed crying out to the Lord to save me or take me because I couldn't live like that. God heard that cryful prayer, I woke Sept 9th completely healed from every symptom and pain. It's been almost 2months free of all of that and all meds. Jesus is the way , the only way to salvation, healing and forgiveness. I BELIEVE that anyone who surrenders themselves fully to the Lord can receive his mercy, grace and the miracle of healing. I pray for all who are afflicted by anything, but until I was at my worst , I too had doubts. Now many in my life have seen and believe, Jesus did die on that cross for us, and he is coming back. Lord Jesus please touch your healing hands to any who read my message and ask for you to come into their hearts. I will forever praise your holy name. AMEN
@@aprillitchfield8876 I’m glad you are finding your way in faith and it’s healing for you. I do not share your beliefs and I am very firm in this. Spiritual beliefs are personal and to respect others I wait till we are on the same page. I’m very glad for your healing. I’m finding mine as well. In medical cannabis, therapy, healing my nervous as and my own spiritual path as well. I fully undertake the pain in your prayer as I also gave up many times on this life. I couldn’t see the way out and now I do. All the best to you.
Thank you for posting this video! I saw a lot of the same twitches and tremors I have. I have been dealing with mild tremors for 3 years and they started getting worse after my 2nd MRI ruled out everything else, about a month and a half ago. I still do not have an official diagnosis, but I am sure it is Functional Movement Disorder.
I work from home and just trying to sign in to my work computer causes me anxiety and major tremors. Now I need to see if I need to leave my job due to this. The financial part is hard and the being productive part is hard as well. I am also a caregiver to my father-in-law and hate for him to see me during my episodes. My husband and daughters try to help, but this is hard to understand.
I went to one of those places that stretch you like an athlete, and that helped my leg tremors. Also just sitting, listening and accepting what God is trying to use me for has helped tremendously.
I’ll subscribe and hopefully we can create awareness of this condition.
Wow thank you for sharing 💗 its so tough to have family watch us go through something that they don’t understand. I know it was super hard on my family and still is. I know stress can totally trigger it. I am fearful of having episodes in public and i have multiple times so when we go to the grocery store or restaurant ill have tremors in the car before we go in so i end up just staying in the car. Im really glad you have something to inspire yiu and keep you grounded. Having trust in god can put our hearts at ease. My prayers go out to you 🙏🏻
Please explore to see if any of the diagnostic criteria for Myalgic Encephalomyelitis fits for you. One hallmark is PEM Post Exertional Malaise, then there's light sensitivity, IBS... So many symptoms.. And many of us get tremors like these, especially with the combination of overstimulation and fatigue... Fatigue can come from emotional cognitive or physical output/input.
Thank you for sharing. My 32 yo son just got diagnosed in August and we as a family have been trying to learn more about FND.
Hello Cassey , I just wanted to comment to say I also have FND same symptoms and double vision .. diagnosis took almost 3 years for me due to pandemic.it is very hard physically and mentally..I totally get it. you are not alone .see FND as a software issue..and distraction sometimes works for me .. you may have seen John stones you tube videos on here he is a UK specialist on FND , watching his videos really helped my mind set and coming to terms with FND ... but that is just me .... as FND is different for all . so here to show support and solidarity for others with FND , we are special ... we are FND Avengers .. even if sometime we don't feel it ... sending positive vibes to all .. embrace our super powers ..for me it's key to not feel scared. xx
th-cam.com/video/MPSDi-jBBXA/w-d-xo.html JON Stone link
Wow thanks for such a positive message. Very inspiring and well said. We definitely need to stay strong and fight. Ive had a lot of bad days but i trh to remember what is good in my life and what im living for despite the disorder. I actually havent watched his videos ill have to check it out. Thank you for sharing your story, its so important to come together. Lots of love and positive vibes out to you!
same to you and yours ❤️ thanks for reading 🙂
Thank you for sharing. I'm 45 and have only just started having seizures and FND is suspected, going through all the tests now- but I have been having tics, tremors, spasms etc for a long time that got written off as anxiety. Some of your footage is what I think I look like as well so its very helpful, thank you.
Thank you so much for sharing this video and your story Cassey. I'm 18 and was initially misdiagnosed with tourettes from 16 to 17 before my dad found out about FND and I was diagnosed with that. Watching your episodes was like looking into a mirror, I get tremors, verbal and motor tics, seizures where I'm awake (which also confused my doctors), issues with balance, increased fatigue, paralysis, and on and off mutism. It's been hard to accept I'm disabled and that this might be a life long issue that is going to change the trajectory of my life. All my friends went off to college and can drive and I'm stuck at home going to community College and taking the bus. It's sometimes hard relating to people my age since I'm so much more limited in what I can do. I find my FND is triggered by illness, stress, and sleep deprivation and the best thing to do when I am experiencing symptoms is to rest and be easy on myself. For me I find getting out in nature and doing things I love like birding really helps my mood and mental health which in turn improves my fnd symptoms. I have found since figuring out my triggers and minimizing and managing them my FND has by and large gotten better. When it first started I was having several seizures a week, on and off mutism, and tics all day. Now I only get seizures about once a month during times of high stress and my tics are much more manageable. Guided meditation just makes my tics worse, so does trying to control my tics and having other people telling me to control my tics. I hope since posting this video you are doing better and are taking care of and being kind to yourself.
Hey thank you so much for sharing some of your story. Im sorry to hear that you are affected by fnd at such a young age. I can related to you in a way that I cant related to my friends either because we are in different places as well. It can be so hard. Im really glad to hear you are finding ease and a good practice to keep your symptoms down. I am still struggling but I think it is related to medication. lots of love! xox
@@casseyklie I haven't found any medications that helped my FND directly. Instead I found medications and coping mechanisms that helped improve things that triggered my FND, like anxiety and sleep deprivation.
I have recently just been diagnosed with Functional Neurological Disorder im only 16 and all this came to me from having Ovarian cyst surgery i've had no symptoms of this before the surgery but after surgery everything just fell on me. I was very active on dance teams and more. I feel like my life is over cause I really don't know exactly when i'm going to be better or the doctors don't even know either. I'm getting ready to graduate as a college and a high school student next year. I can't walk at all like most FND patients can do, it has been a year since i've walked.My headaches won't go away. My voice is fully gone and so much more. I'm every single therapy you can think of now Occupational, Physical, Speech, and Physiological. I really hope everyone gets better. Thanks Cassey for sharing your experience with it 😊
Wow that’s a lot. I’m so sorry you have to experience this so young. Sending you healing ❤️🩹
Hi Cassey, I'm sorry this has happened to you ! I have recently been diagnosed with Functional Neurological Disorder .The first time this in September 2022 happened to me I could not ,walk ,talk ,think and it was presenting symptoms of a stroke also I was hallucinating, like you all physical tests came back as normal and had no answers for me and I was wrongly put in a psychiatric ward for two weeks without any help or medication eventually over the weeks it had calmed down by itself . Still no diagnosis was given . Then on Christmas eve it happened again which put me in hospital until the 10th January as they gave me physio to help me walk again not perfect but ok now. The thing that troubles me is that it can happen without any warning ! Like you I have been told there's not any answers as to why or how this has happened . Find it a bit scary to be honest . Enjoyed your video I was just like you when in Hospital. Hope your well would be good to hear of your experiences and how often FND rears its ugly head .
All The Best
Stephen x
Cassie, I can’t explain how much I can relate to you and your story. I was just recently diagnosed with FND and I too had quit my job, applied for disability, I have a 2 year old I can’t care for by myself, I can’t drive, there’s essentially no resources from
The doctors. I have seizures/muscle spasms every single day and it feels like my muscles are on fire. I’m at the point where I am still struggling to accept this diagnosis and what happened and what my life is going to be like. I would love to have support. I don’t have any social media. I would love you connect with you if possible. Stay strong girl.
Hey there, Thanks for sharing some of your story. I am sorry to hear of your tough situation. It can be so difficult. Maybe try to look into community resources? I hope that things get better for you. Hang in there
Good day Queen! I got Covid pneumonia three years ago and I had issues with my legs and had to go to rehab to learn how to walk again. Then my Dr said I had tremors but my brain MRI was normal. So last month I went to NIH they found that I have Orthostatic tremors and Functional tremors. So this Thursday I will see my new neurologist and see what he will request for me to do next. I have Long Haul Covid with over 20 symptoms. My life is like a box of chocolate I never know which systems will come out of the box and they drain my energy so much. But I'm grateful to be alive! I will subscribe and share in my research, please follow me back. Yes let's stick together and share our story to educate the public. Thank you for sharing your story! ❤
I love your energy already! Such positivity. Thank you for sharing and watching 💗
You nailed it girl - just diagnosed after a year of hell and what seems like a thousand doctors and nurses looking at me like wtf are you high on tranq or flakka or just making it up?
Now thankful for diagnosis but trying to figure out how to deal and not live a crippled life
Looking forward to more videos, thank you
Thanks for watching ❤️
Thank you for making this video. I was sent to the neurologist because my fainting spells transitioned in twitching and making weird "grr'ing" sounds after fainting. The first time it happened we went to the ER because it's one thing to faint, but it looked like seizure. CT was fine, but they kept happening.
The Neurologist was seemed great at first. I told him I thought it was most likely FND, or some other kind of overload but not seizures. He agreed, suggest Ketamine, or Psilocybin but we should do the EEG just be sure it's not epilepsy.
The EEG was like torture, and when they results were ready they scheduled the follow up. The doctor didn't see me, a nurse came in and talked to my husband, not me. She kept her back to me most of the time only looking at my husband or the computer screen. She said it's not epilepsy so we can't help you. You will have to try talk therapy or magnetic therapy combined with talk therapy.
I left feeling like no one wanted to help me and it's all an emotional issue so no one cares just get over it.
I live in the Dallas area, you'd think I could find a specialist for anything here, but no. I don't have a lot of hope anyone will help me and I'll just have to deal with it myself. It's nice to see other people working on this same issue.
Thank you for watching
@@casseyklie Thank you, you have a really sweet heart. Sometimes I feel hopeless but then I remember I beat the odds to be born, I beat the odds over and over again in life. I can do this.
I simply need to relax and listen to my body. Can't push it but if I listen really listen I get warning signs and by listening to them and doing the work both mindfulness and gentle training as my body will accept it I'm going to be ok.
I've got it easy compared to a lot of people in this world. FND might not be a "champagne problem" but everything else is, so I have one actual problem but I'm way too stubborn for one problem to get in the way even if it has many faces.
I am blessed.
Thank you for being on my list of blessings
@@victoriaangel4740 thats super inspiring of you to say - keep up the good mindset 💗
Ketamine and mushrooms? Wow
Ketamine and mushrooms? Wow
I recently began to have some unusual symptoms and I started looking for videos online of people who’re experienced similar symptoms. This in turn made me realise how many people are suffering out there. It’s so easy to get caught up in trying to travel and live a worthy life, and ultimately forget about those who have had their lives changed overnight. Your video just randomly popped up on my channel. You’re beautiful by the way. Stay strong and I hope you’re healthy in the future. If not, I hope you find purpose in this condition; in helping others deal with with their trauma and grief.
Thank you 💗
@@casseyklieI wanted to come back to this to say I was diagnosed with FND after being to a neurologist. I might start making videos myself. Are you happy with your decision to make videos on how FND has affected you ?
Thank you for posting! This is my situation almost exactly! Very helpful since most ppl either don’t believe what’s going on or make you feel even crazier
Thanks for watching! Im glad it was helpful. I dont want anyone to feel crazy!
You're not crazy. Your body is talking to you.. Your doctors just don't speak its language... Keep seeking excellent practitioners... And patient driven communities.. Answers are out there for you... Keep hope
Thank you for your video! I am just turned 39 years old and was diagnosed shortly before my birthday with FND.
I've had symptoms for about 2 years and felt relief when I finally received a diagnosis. I've been doing all sorts of therapies over the 2 years since my first episode of leg paralysis and have had minimal improvements. I've been off work for 2 years now.
I have a whole "bizzard" of functional symptoms as well. That's what my Neurologist calls it. Some affect my movement, some cause brain fog or cause me to pass out, phantom symptoms (feels like spiders on my skin or a cat walking on my body), extreme sound and light sensitivity, muscle spasms, headaches, gastroparesis..... on and on and on.
New symptom as of the last 2 weeks: gag reflex spasms and extreme nausea. My gag reflex symptom sort of looks like your face ticks.
Same here. I just keep going. Day by day by day. ❤
Wishing all of you FNDers (and all the people who love us, too) the very best. ❤ I found reading the comments section here helpful because it reminded me I'm not alone in this. ❤
Thank you for watching and thank you for sharing your story ❤️ you are not alone! We are all in this together. I’m wishing you so much luck and positivity on your healing journey
I also suffer from FND limb weakness in my legs. Guided meditation and breathing has really made a difference.
I wish you all well ❤️
Thank you very much for sharing this and raising awareness of FND.
Thank you for watching! 💗
Thank you Cassey, my child has just been diagnosed with FND. We're still learning about it. It's really impacted on the memory. I'm still waiting to hear from the Specialist what treatment there is available. Please can you make a video about what treatment you received.
Awe im sorry to hear that your child is going through that. Its so tough, but we are all here together. If you go to my channel ive made 2 videos about treatment so far! 💗 blessings out to you and your family
Me, too. There are so many of us, and yet they know so little. It sucks, doesn’t it? Hugs to you.
That is such the hard thing about this diagnosis. So many unanswered questions, so much unknown futures. Gotta keep on though. Lots of love, thanks for watching. xox
@@casseyklie there is a premiere of a film called Paradise on TH-cam today at 5:00pm PT about functional seizures if you are interested th-cam.com/video/eVI6uFYfUnc/w-d-xo.html
Thank you for this. I have been going through the exact same thing you are going through. Thank you for sharing.
Thanks for watching, I pray you find some ease
Hello I'm glad I found you on TH-cam tonight. I also have fnd . Thank you
Thank you for watching. Im glad to help in any way that i can. Sending you healing energy ❤️
My 16 year old daughter was just diagnosed with FND. She has had seizures since she was 13. She has had therapy and is on anti depressants. She has been dancing since she was 3 and recently started going to the gym doing weight training, and that seems to help her a lot. The specialist told her its good to keep that mobility. She still has seizures but a lot less. Instead of happening everyday, maybe 2 times a week. There is an FND clinic in Toronto that im looking into going so that they can do a full assessment. I want you to know that i feel for you and you are not alone in this. Good luck in your journey.
Thank you for sharing a bit of your daughter’s journey ❤️ I’m glad to hear that she is doing better!
What is the clinic in Toronto?
I have had it for a year now and the first time they thought I was having a stroke at the emergency, after 2 months in and out of hospital I was diagnosed with Functional Neurological Disorder. I just had a relapse and right side weak, numb then paralysis. It's tough because you scared to make plans too socialize cause it happens anytime anywhere. But thanks for sharing
Thanks for watching
I hear you going down same road except my symptoms include chronic pain, leg clumbsiness, twitching in spells, speech issues at times, back problems. Major depression. There are physical signs of damage but not to an extent the doctors can say is causing the symptoms. Its a long road and a terrible journey.
Thank you Cassey for doing these🙏🏼You are a natural at explaining how you are feeling and all of what you're going through, even being comfortable with video-taping yourself in the mids of it... You are and will be a valuable Teacher for the rest of us, especially Young People 💕🤗🫂😇I wish you all the best as you adjust to living with the uncertainty of this terrible Disorder and hope you get Disability soon! It took me 3 tries but finally got it, be persistant and be gentle with yourself 💕🫂🌷🇨🇦💛
Thank you for the sweet message ❤️
You can do this, girl. Don't give up
Thanks for the postive words, really appreciate it 😌
Cassie, thank you so much for this video. I was diagnosed with functional neurological disorder about a month ago. I also have epilepsy but they are two different diagnoses so I do have seizures because of epilepsy but I also have FND. I have been going crazy with these symptoms because half of the time I think I’m making them happen myself and then the other half is grieving because I know this is FND. balance is one of my biggest issues. It comes and goes sometimes I can walk perfectly other times I get, what I call, my shaky legs. Sometimes they’re not too bad and I can walk properly just off-balance. But sometimes I cannot walk a straight line at all. My legs go all over the place and it’s hard for me to even walk to the car door when it gets that bad, I have no option then but to go to bed, I can see that you have some speech problems as well, so do I, kind of exactly like yours, forgetting words, but also the words can’t come out of my mouth correctly and right away. I am so bad at spelling now, and my hands shake so much that I am using the voice text right now, my voice sometimes, like, vibrates as I’m talking all while my body is also trembling from head to toe. A lot of times I don’t realize that my body is shaking because it’s so minute, everyone asks me why I’m shaking. Of course, there’s the other times when the ticks happen and my hands go like yours. I could go on and on about my symptoms, I’m sure you understand. But really I just needed to desperately thank you for this video. I truly felt like I was crazy and I’m the only one that has it this extreme or even have it at all. I’m heading to the Facebook pages now. Oh, and the purpose thing. 100%. Just trying to do things to use up my time. I’m also back at home with my mom and currently waiting to hear about disability. ❤ I’d love if we could connect more on an easier basis. Like texting or fb messenger, whatever. This video changed my thoughts and has given me hope. ❤
Hey there! Thank you so much for watching and sharing your story. We are in this together 💗 so much love for you. I pray you find some ease. You can find me on instagram @ casseyklie
God bless you Cassey I wish I could tell you about my fight with FND and only recently diagnosed after nearly 40yrs if fighting for my life and the most insanely painful disorder and the beyond inhuman things done to me especially by doctors n Literally laughing at me for what I'm going through over n over even when I was down to 140lbs n could hardly even stand up and all alone through it all even to this day. I know my case is extreme but it's so impossible that I'm even texting you now. But I don't want sympathy I actually want to Help you in any way I can to be there for someone when there has never been anyone for me!!! N I know I can help because I wouldn't still be here now if I hadn't had to find ways myself and in that way this has been a blessing that I want to share with you and others that may be fighting this alone or otherwise. Kevin!❤❤❤
Awe hi kevin! 💗 thank you for sharing that. Im so sorry to hear that you’re also fighting this fight but you are not alone. We can all be strong together and help eachother. Much love!
My husband is showing signs of FND. Several years ago he was diagnosed with Meinere’s disease. Now he is having tremors and at times cannot move-it’s been awful. Getting into a doctor that specializes in movement disorders We’ve been told he could have Parkinson’s. My husband has always been such a hard worker and now he can’t move at times. Such a change in personality.
Hmm thats so tough. Im sorry that you guys have to go through that. Stay strong. Sending healing vibes ❤️
Best wishes. I think you are most courageous for doing this video. ❤️
Thank you so much!
@@casseyklie You're very welcome. I hope you are as well as you can be. 🤗
Thank you for sharing with us
Hello, I just got a possible diagnosis for FND and it is a route that we are going to try, I guess I have to see a psychiatrist, I’m not really sure how all this works yet. But I really appreciate you making these videos! If this is my final diagnosis I’m really hoping to find a community.
Thanks for watching, I hope you find the answers youre looking for
Hello everyone with FND / FMD. I also got diagnosed with FMD. There is hope as it is curable and treatable. I was starting to have issues every morning before going to work but I was fortunate to connect with a great neurologist at the Mayo clinic in Rochester who connected me with a great treatment. It is called BeST technique. I am just waiting to get started. In the meantime, mindfulness, yoga and plenty of rest is helping me. Wish you all luck. It is tough going day by day not being able to control your movement.
Hey there - I wish you the best of luck with your treatment. Sounds like you got a good routine going for yourself and are managing your symptoms. I hope you get the result you are looking for!
Great explanation of what FND means! Also at 12:46 you're holding your lower back in the exact same spot I do! Where you having a tingly sensation there or what made you hold your back there?
Thank you! So when have episodes I get weakness and loss of function in my left leg. I also have issues with my hip and tailbone and get a nerve pinching feeling there.
Hi, Cassey, I have just been diagnosed with FND, I am a 52 year old male in West Yorkshire, England.
My symptoms are a dint in my right temple, giving me severe headaches, for nearly a year, gave up my Job, weakness in my legs, and arms, severe loss of memory, everybody's symptoms are different, it's hard to keep going.
Paul.
Hi Paul! Thanks for writing and sharing. It's so important for all of us to share our stories. I'm sorry to hear that you are struggling. And I agree everyone has different symptoms! Its such a complex diagnosis. I can empathize with you, its so hard to not be able to work and do daily livings. My best wishes to you. I hope you can find some ease.
You are not alone Paul... Find strength and peace wherever you can. It's a lot to bear. I have counselling weekly to deal with intense emotions that come with so much change and limitation. It helps a lot... Doesn't fix my body.. But helps me feel a lot better and not alone, with the things happening to my life and health
I got a lot of things going on. Limb weakness, changes in my gait, facial spasms, distorted sense of touch, numbness in the "pelvic region"... test after test and no results. I just found out about FND last week and I've been diving down the rabbit hole ever since. I think we might have found it.
Hmmm it’s so tough. Good luck on your journey friend 💗
@@casseyklie thank you. Hope things are going well with you.
Hi, a year on what medications are you on? I’m receiving no help from anyone or the hospital. All this came on a month ago, and I have seizures and tic’s too. So scary. What was your main sources of help to stop it all. Thank you xx
Hi there - im so sorry to hear youre not getting help. It took me a couple of years for my dr to help. It took it to get really bad and then going to the hospital and them trying to figure out what was going on but once they found it was fnd the help got little. I see a psychiatrist because some drs think it is linked to mental health but I prefer to not be over medicate and instead change my life style. But I would recommend reaching out to your local health unit, dr, psychiatrist, physio therapist, occupational therapist, natural path. All these people can help you!
I dont know that it can be stopped but it can get better. Definitely managing your stress and having an overall healthy lifestyle. My tics have stopped though!
Currently im on pregablin and venlafaxine
Good luck my dear... You are very brave... And doing a great job of connecting others in a way that helps combat isolation.. Keep up... And hope you find accurate answers.
Thank you so much 🤗
@@casseyklie hi Cassey, have you researched Myalgic Encephalomyelitis and Post Exertional Malaise (PEM) (Hallmark of Myalgic Encephalomyelitis)... Understanding PEM and Myalgic Encephalomyelitis might help you with your own symptoms long term with managing your current condition.... And have you heard of the "energy envelope"? For people with this disease, the more energy we put out physically, emotion or cognitively... The worse our symptoms get. The key for Myalgic Encephalomyelitis is to stay well within the energy envelope, which can be infuriating and restricting.. But remaining within that envelope for extended periods of time helps slowly rebuild more function or at least more predictability or stability in symptoms and function. I am wondering.. If you research these conditions and the health management strategies for Myalgic Encephalomyelitis, if it might have any positive impact on what you are experiencing... As the symptoms you have caught on camera resemble what it looks like with myalgic encephalomyelitis when we extend past our energy envelope, our neurological system just starts farting...its like our wiring goes haywire the farther past our energy threshold we get. And with the PEM Post Exertional Malaise.. It can be hard to track, as the reactions to the use of energy physically, mentally and emotionally can have a delayed reaction... Journaling energy output and symptom increase can help. Anyways, I'm babbling, but I wanted you to know about these things, so you can start learning about them, because there may be some relief or further diagnosis for you in learning about these things, and if nothing else, it may help with long term symptom management strategies as you are so young... So piggy back on the folks before you.. If you tap into the autoimmune community, you will likely find a lot of symptom and symptom management cross over. You will especially find that the impact on life and function is similar, so you will find a lot of compassionate, caring folks in the autoimmune community. I was 32 when I sustained a spinal injury (nervous system issues ever since) and then a harsh virus in 2014...and more nervous system fall out. So there are a lot of folks that have blazed the self management path.. And the courses through... Self Management BC... Are also awesome.. At least when they were running in person. I took the "Managing Chronic Conditions" course through Self Management BC... Which also helped restructure the thinking around life and medical issues.. And I met some great folks too. Stay connected my dear, stay inspired... You are helping so many. And are you in Vancouver? I'm in Kitsilano..
@@casseyklie also, check out this video published by the Complex Chronic Disease Program at BC Women's Hospital. The video is titled : Mitochondria not Hypochondria
That video is super short, but packed with info on the body and nervous system.. And worth watching and learning about
@@leslie6189 Wow thank you for sharing so much info. I am Northern BC Terrace!
Thank you for posting
Thanks for watching!
I can understand in many way personally.
Keep going, don’t give up and keep telling your story… it is making a difference.
- Friendly Side Hug-
Thanks for watching!
I have cerebral palsy and been diagnosed with small fiber neuropathy
Sorry to see you struggling, I was also recently diagnosed with FND so understand it can be quite cruel...
It's interesting to learn just how vastly different everyone's experience with FND is. For me the worst flare ups emulate the same pain and neurological symptoms I experienced with a previous back injury/surgery (and more). Am finding other people's stories valuable so thank you for sharing and I hope you find some relief with future treatments :)
Im sorry to hear that FND hasnt been kind to you as well. I think it is a very broad spectrum. Almost like when they dont reallllly know whats going on they put the FND label on it. I have heard of people getting diagnosed with fnd and then later on diagnosed with something else. Im glad you enjoyed thank you for the well wishes :)
My Functional Neurological Disorder legs do that too!! ❤
My grandson is 10 years old and was just diagnosed with conversion disorder. I was looking at your video and he had the same symptoms. I am extremely scared for him.
Wow that’s intense. So young. I really hope he can get some help to ease his symptoms 💗
my wife has F,N,D had 4,years now she finds dancing helps to get her balance back when having bad days standing on tip toes help get balance back she walk backwards better but need a walker go forwards ( rollator walker) she has started driving again
all you can try do set goals every day some day you will reach your goals but if don't there all ways tomorrow .
F ighting N ot D efeated
I'm having different issue but neuro also due to a brain injury.. suckss
I feel for you. Thank you for sharing the video. I was going through a similar phase last year, where I could not drive and do work due to it. I have been taking an Ayurvedic tablet called Triphala, which in Ayurveda is known to help manage all diseases. It is certainly helping me manage myself better day by day.
I’m glad you found something that helps you!
What is your full list of symptoms. You mentioned fatigue. You mentioned the tremors. Have you looked at Myalgic Encephalomyelitis? ME, ME/CFS, chemical sensitivity MCS, and sensitivity to EMF's? Your doctor can reach out to the CCDP Complex Chronic Disease Program at BC Women's Hospital to explore your symptoms. They do doctor consults on complex chronic disease. Do you have any IBS soft/hard, do you any sensitivity to light or sensitivity to sound? Do you have any pain or increased sensation in your skin? Especially face, back of hands/arms, front of knees, tops of feet? Do you get PEM Post Exertional Malaise? That can be a hard one to track because energy output today can have impact on tomorrow.. However tomorrow you might be fine, but the next day experience fatigue. Are you able to be as physically active as before? If the answer is no, do NOT let a doctor encourage exercise, as it can significantly or severely worsen ME. Try looking online and checking symptomology of autoimmune disorders. There are a lot of online communities like the one you found in Facebook. Some naturopaths have education in autoimmune disease. Internal medicine specialists are a HUGE ASSET in sleuthing out some disorders... Don't give up hope on discovering root causes or potentially more accurate diagnosis... But it takes time as our GP's do not have training in these areas, and as much of the knowledge in these areas is patient driven and continues to advance in accuracy and knowledge faster than the medical community can keep up with... As not patients are connected through the Internet... Keep searching, keep up your hopes. Watch Jennifer brea's Ted talk
Typo... "not" should read "now"
Wow thank you for all the info Leslie! I just looked up ME. I often wondered if I had chronic fatigue but I wasnt sure how it tied into my FND. But I have very bad fatigue. I am finding that I have to sleep after meals, short exercises that are 15 mins, social events that are 1 hour, shopping. I cant drive because I will have these seizures that make me fall alseep at random. it can happen if im over stimulated or stressed or anxious. If I do some things one day I sleep all day the next 2 days. It feels very important to find the root but It seems hard living where I do and not having much health care. Some days I want to give up on myself. It is quite hard. But I really really appreciate all your info
@@casseyklie hi Cassey,.... Yes, I was hearing all that in your sharing in your videos... And knowing my own disease, and it's impact on function, I was hearing you in a way you might not have a lense on yet.... Please quickly become familiar with PEM (Post Exertional Malaise)... And symptom management strategies for Myalgic Encephalomyelitis,.... as regardless of your eventual diagnosis..., I think you need these management strategies immediately... For your well-being... Please do look into it quickly... Definitely Watch that video.. Mitochondria not Hypochondria... As you may potentially be struggling with ME Myalgic Encephalomyelitis... Undiagnosed... And be driving yourself and your symptoms into the ground... Those were the alarm bells that were ringing for me when I was watching your videos. And mental/emotional strength is also crucial to well-being with serious illness, ...and I Sense... you are at a bit of a turning point mentally/emotionally... I feel strongly that you need support from other folks that have blazed a bit of a path ahead of you... As at some times, the experience of chronic illness can be quite fatiguing, it can wear down your reserve strength...even for the strongest among us... and can be quite overwhelming, and it is quite possible to either feel quite terrible emotionally, or lose your way, or... Well,... There is a lot of depression and suicide in the chronic illness community.. So it's really key to have support of others with complex chronic illness, and to have ongoing mental health support for the pressures, stressors and changes that chronic illness creates... Because life is hard enough without all this... So please ensure you are well supported emotionally. Personally I have counselling weekly... Which bridges the issues that come up, and strengthens the self management strategies I've worked so hard on.. And keeps me on track. Counselling is expensive, but with the pressures of constant chronic illness, counselling for me, is as necessary as water. There are free services, and sliding scale services, and counsellors that are students... And There are also lots of online support groups for chronic illness as well. Any online group in the autoimmune community would be supportive and useful to you. And you may benefit from the support group run through the ME/FM Society of BC. And I co-facilitate a couple of support groups for Chronic pain and chronic illness as well. I'm not sure where you live, but both of these services are available virtually.... 1. (the ACT program of student counsellors at Burnaby Counselling Group) (their counsellors are from Trinity Western, and consistently excellent listeners)... And... 2. ADLER counselling group on west Broadway in Vancouver(NOT Adler university)(also available online) .. If you want a student that's excellent, you could ask for Lindsay, or if you can afford full price, their regular counsellor Kirsty Lewis is AMAZING.... and I have other resources if you ever what to chat or reach out. Good luck my dear... With you in spirit.. Xo
@@casseyklie FYI... Your description of your energy patterns is the exact description of PEM. it's quite possible to have a dual diagnosis, or incorrect diagnosis. Also look into EMF's as people with autoimmune are much more sensitive to EMF's... Make sure yih are not sleeping or spending time near a digital electric metre which is on the outside of homes.. They generate a tonne of EMF. And routers, computers, etc. There is a device you can get, not sure where, as I haven't had to look into it fir myself, but I hear others talking of it, so I know it's available.. Anyways, it's handheld, and measures EMF's in the home. A good rule of thumb.. All electronics booted down at night or when you're resting.. So not keeping your phone near you at night. Basically because your energy is so drastically impacted, you want to mitigate any of the common factors that can be contributing to your energy issues. Did you watch that video yet? It's just 6 minutes.. And it's packed with info about cellular function of the mitochondria, and overall body function with autoimmune. Do check it if you haven't already... It's published by the Complex Chronic Disease Program at BC Women's Hospital, and the video title in you tube it Mitochondria not Hypochondria. So, I've covered PEM, EMF's, your energy, and encouraged you to dig deep into some research and potential diagnosis of M.E (the purpose being to become quickly educated on disease management for M.E)(the purpose of that, being to help you mitigate your current symptoms, and to ensure they don't get worse if there's anything that can be done to minimize current symptomology, which in turn also minimizes long term disease impact)... So, let's talk about other contributing factors : boundaries, not just for others, but for yourself... You yourself ultimately really know what you can and cannot do, what you should Ir should not do, and how your body and brain may react to output or input of energy/stimulus..... So... It comes down to careful and mindful observation of impacts, with the eye on minimizing or stopping negative impacts, by not overdoing what you know might influence your symptoms... Boundaries with self are some of the hardest to watch, be aware of, and uphold.. However, you yourself are the one who holds the sense and knowledge of how much is okay for you day by day, hour by hour, minute by minute. And never be swayed by what others require of you, ask of you or expect of you. I'll give you a concrete example of one of our support group members... Cooking Xmas dinner for her family, when she knows it's not within her health status without causing harm. Part of it is keeping up with what her family and relatives expect.. But a bigger part is keeping up with what she expects of herself. It's a hard pill to swallow, but ultimately her family doesn't want her to get sicker, so they will rally. But her own expectations are harder to soften.. But necessary in order to not cause setbacks, or decline of health. Okay, so we talked about boundaries, self awareness, you as your own boss. So let's talk about journaling. I will admit, it is a tool I have zero discipline with myself. However, there are folks in the autoimmune community that get great benefit from tracking symptomology with their practitioners through journaling. Some use online apps, some an actual journal, some just draw or doodle the main theme of the day. Some folks have seen overall trends up or down, through reflecting on or sharing journal segments with practitioners. Thus can also be super helpful for the emotional side of dealing with chronic illness. I can't emphasize enough, how absolutely integral it is to have emotional support. Professional, ongoing emotional support. Once a month, once a week, you name the interval, and adjust the amount or frequency to match how much stress or change you are under. Stress has a massive impact on autoimmune disorders. And sleep is an issue with autoimmune disorders, and loss, grief, and ongoing health stressors... It's just too much. You're not meant to bear that much.. Nobody is... And with chronic conditions, the reality stretches ahead like a road that some days you don't want to walk down... I cannot emphasize enough how integral professional support is in this aspect of the journey. There are lots of online groups, and support groups. A good guideline is that support groups should be constructive, and must have focus on positives and strengths, otherwise the out pour of hardshiptips the balance of the group.. So when selecting(or creating) supports or groups, ensure there is an equal (approximately) focus on Positives and negatives. Gratitude 21 day challenges are also good when you get in a funk... As it has been studied to cause chemical shift in the mind and emotions... So use a 21 day gratitude exercise as an effective tool. And it can be simple. I'm glad it's not raining today. The content of the gratitude is not important, it's the mindset that shifts you. Anyways, I have M.E Myalgic Encephalomyelitis, so this is a, lot of output for me... So I'm going to stop here... But do quick research please on disease management for M.E, ME/CFS.... as regardless of diagnosis, you are living with some of the symptomology, and quick immediate action on mitigating some of the things that increase symptoms... Is necessary where you're at... Even without diagnosis... Please start with that video on you tube... Mitochondria not Hypochondria.... And please ensure you have emotional support, as the journey can get dark. Definitely can get overwhelming, sometimes can surprise you, so having support set up, and engaging regularly with emotional support is also key to wellness with autoimmune diseases that impact daily function. Good luck my dear... If any questions, do let me know. And there are great online sources. Try the website for CCDP Complex Chronic Disease Program at BC Women's Hospital, and try the ME/FM SOCIETY OF BC for resources and support groups, and they have advocacy groups making change for the long term landscape, like their MLA and ME program, as sometimes being part of something bigger can also help balance out any feeling of powerlessness, as we can't hit reset on our body.. So being a part of creating change can be empowering in a situation that is disempowering...can be helpful(being mindful of one's own health limitations)... And volunteering... If able... Also really helps with connection, belonging, purpose, and is hugely an antidote for how isolating chronic illness can be... So stay connected in order to stay hopeful... And connection is a huge piece of quality of life. As chronic illness can rob us of quality of life... So constantly examining ways to add or ensure quality of life is also integral to overall mental wellness with chronic disease. Anyways, I'm tired in the head... Reach out as needed. Xo Leslie, Vancouver BC, Canada
Sorry super long message... But this was all on my mind when watching your video... And you may get some long term value out of these, messages.. I encourage you to print them or screen shot them.. As, you are still early in your journey, and some of it may make more sense later on... And some bits are good to come back to a couple times a year, as it's quite possible to forget parts of disease management when there are so many moving parts and fluctuating symptoms. I wish you all the best. Xo Leslie, Vancouver BC
What medicine have you been taking that’s working for you? I have FND, but I work from home and thankfully it hasn’t impacted my job too much. But I suffer constantly with nerve pain and twisting and jerking in my right arm/shoulder and neck.
For nerve pain I’m on pregablin, however it does cause fatigue and memory issues and it’s hard to come off of! It’s also good to minimize the severity of tremors or convulsions!
Just started the video and have to say, the quality isn’t as bad as you think, and the light is rather flat and balanced (think the clouds are like giant softboxes, making the light less harsh and shadowy. It's not as dramatic as direct sunlight, granted, but as a photographer I do enjoy cloudy days for portaits! I think it looks nice - just for the record. Now for the rest of the video!
Thank you ☺️
Try getting a tilt table test and skin biopsy. Maybe you might get additional diagnosis.
I'm not sure what those are but I'll look into it. I'm suppose to see a specialist sometime to run more tests!
Was it FND? or the benzo you were on? Because everything you described I had....was even misdiagnosed with FND which I'm still pissed off about because it's a diagnose of exclusion like IBS. I got on a very strict diet and I got off my benzo and my symptoms went away eventually and I say eventually because benzos can last up to 18 months. But it's been 4 years, no symptoms
The fnd started years before I started fnd! But that’s a very interesting experience
Try anti-oxidants... Resveratrol from Finlandia pharmacy West Broadway Vancouver BC... Ask their naturopaths and herbalists first... And their compounding pharmacy can Check drug interactions..
Thank you ❤
I got diagnosed in 2013 I have it really bad my days are hard to cope with when I have episodes all my body locks I can't control none of it I have little sleep comas after.
Wow! You’ve been fighting for awhile. You are so strong. Keep healing 💗
Hi im Sarah from New Brunswick i found out in july i have FND i spent 19 days in the hospital and hospitals are a trigger for me so i eneded up bed bound . Im terrified and no one can tell me anything about it . I really appreciate your video thank you for sharing ❤
Hi Sarah from New Brunswick. I’m so sorry to hear you’re having a tough time in the hospital. Hang in there, you are so strong 💗🙏
Hi Sarah! I’m from Quebec, do you speak french too? I’m on my way to get a diagnosis too. Courage 💪🏼
@@justinebeliveau1346 Hi nice to hear from you. I'm half french but I can't speak it unfortunately, just some words .
Would be interested in hearing about your experience and diagnosis. I know no one who ever heard of this seems really strange considering it's the second highest reasons why people see a neurologist 🤔. 💜
@@sarahcomeau7234 Ok! we could talk english, this is not my first language but i’m quite fluent (my my brain works 😆) I would love to talk to someone who live with it too! Let me know how we can reach
Yes its hard to know what to do..especially when we are still young
The doctors have diagnosed me with the same thing you have but I started icing under my legs with a hamstrings are and my arms the only thing that would help me is by doing Yin Yoga for the nervous system in the meditation and also I started looking up TH-cam videos and doing extra exercises I don't know if this would help you but I was doing good for about a year or two and proof I'm back to square one again so I'm starting all over again doing everything I did before it is not easy dealing with this
Hey, thanks for sharing your experience. I find mediation helpful - I go to the chiropractor and they have a special set up called brain tap and it comes with fancy headphones and a band that goes over your eyes. You close your eyes and while you do the 20 min meditation the headphones have infrared lights to help your ears accept certain tones and the meditation has binary beats and duel voices. Apparently 20 mins of this meditation is equal to 3 hours which is amazing. I would go in there ticing really bad or having issues walking and come out pretty well fine. I havent found much else helpful except sleep. Although I am slowly getting better with medication changes I would like to be drug free one day. I hope you find ease. xo
Was there anything significant or a combination of things that triggered a backslide in health? Any major stressors, disruption in sleep, new foods or chemicals, any physical or environmental stressors, or combination of these? And have you looked into Myalgic Encephalomyelitis...
Victoria BC 🇨🇦. Same FND. We have a few good neurologists here in BC.
Pamela liegh... Names of good neurologists? Any names... I support quite a few people with chronic health issues, in BC... And neurologists are something we are often seeking... Especially good ones...
Have you been to the movement clinic in vancouver?
@@casseyklie is that out at UBC?
@@casseyklie hi Casey, I couldn't find that in google... Is it UBC? And if you ever need to meet or chat... You can reach me through the ME/FM Society of BC... Just email, and ask to be put in touch with Leslie P, from their volunteers in the my MLA&ME project. And if you reach a dead end, you can ask for Hillary or Sue... They can put us in touch if you ever need or wish to reach out. I know there's a way to directly reach out to folks with you tube channels, however, I don't know how. I'm a technology dinosaur :) almost 50 years old... We still learnt typing in school... On type writers :) and all my college papers were still handwritten... Lol.. Gone are the simple ways.. However, through the wonder of technology, you are reaching a tonne of folks.
@@leslie6189 Yes I believe so!
Cassie I was diagnosed with fnd about 4 years ago I was taken off my eltroxin for my thyroid by a specialist I loose my speech like you I am fully aware of what is going on around it’s like I’m in a trance I don’t know what it is I lost the function of my bladder I have 2 catathers in excuse my spelling brain fog I wear adult pull-ups because I’m still bypass and in chronic pain because of the wetting
Hey Geraldine. Thanks for sharing a bit of your story. That sounds so stuff. I have chronic bladder pain and have for years. It is such an uncomfortable hard to deal with issue. Im sorry to hear about the loss of control. I hope that you can find some answers and ease in your journey. Just remember you are not alone in this 💗 wishing you the best
Please check symptomology for autoimmune disease.. And see if a naturopath can uncover any clues, I know there are tests that can be done that are not widely available, that can help diagnose different toxicities and bacteria in the body... There ARE ways to figure out a lot more than the average doctor has training in... Please look into the autoimmune community.. Start asking about what types of tests are out there.. Amd watch for symptoms similar to yours. For example, I have Myalgic Encephalomyelitis.. And much of what is shared here is common in the ME community.
I also have FND. I post about it a bit on my channel
Me too. FND.
Have you been tested for covid or cirs or lyme?
Be careful with mobile phones ...the radiation.
Side effects from rolling your sleeve up? Post viral issues? Allergies? See a decent chiropractor. That will help.
I wish you a happy new year.
☃️❄️☃️❄️☃️❄️☃️
Happy New Year! :)
@@casseyklie
Good evening Cassey.
I Hope you will understand my English. I make mistakes in French with my condition but I love speaking and writing English. I feel younger when I used to travel for my studies ( In England, USA and Spain).
I’m starting to learn Portuguese for my pleasure and make my brain working …🙂
@@christellemege9479 Awesome good for you! Your english is fantastic :)
Hi from France.
I have FND.
I’m a 51 years old woman.
My country doesn’t know very well this condition.
I speak quite fluently English.
Are you English ou American?
Take care of you.
Friendly.
Chris.
Hi Chris! Thanks for sharing a bit about yourself. I am from Canada. FND is a hard condition im not sure many places know it well
En France, il y a l'association Cap TNF, le Dr Parrain, l'hôpital Avicenne qui peuvent être des ressources importantes pour ceux atteints de cette pathologie
Might be a stretch but allergies can cause symptoms similiar to what you mention. May be worth while to get allergy tested if it is an option. Allergies cause inflammation in body creating problems. Regards
That’s a good thought! I have been allergy tested
What were your first symptoms years ago?
Small tremors when stressed as well as non epileptic seizures when I smoked weed
How are you now?
Did u ever have an injury? How old are u? Also can this be hormone changes??
Ive never had any injuries, im 25 and I dont think it has to do with hormone changes but I think hormone changes could possibly worsen your symptoms!
It can be inflammation based... Which can be deeply impacted by fluctuating hormone levels... Look into education and understanding around inflammation, anti-inflammatory diet, etc... There are some ways to mitigate the impacts of hormones on inflammation
I was going to ask if your symptoms get worse with hormonal fluctuations. I’m so sorry you are going through this. I came to your video because my last visit, my neurologist mentioned it possible I could have a functional movement disorder and not epilepsy. Or at least the things I think are seizures may not be. I have auras of the feeling of dread and rollercoaster in my stomach, then twitching that comes in clusters for a few seconds. Usually it is one shoulder that jerks. Also my hand will do like yours does sometimes. It does a writing motion. It has even happened in my sleep and I woke up to my hand “writing” I am on keppra and it does not seem to work. I started researching FND hoping that I could figure out what is going on with me. My systems get way worse with hormonal changes. I have gone vegan to curb inflammation, but so far I still have these episodes
I have actually injured myself I broke my wrist . 😢
Did you get disability? Thank you for all the videos*
I did! Thank you for watching 🙏❤️
@@casseyklie so amazing, happy for you *
My 14 year old is refusing to accept her FND diagnosis, any help is appreciated
Hey there. Im sorry to hear your daughter has been diagnosed at such a young age. I couldnt imagine how hard that must be. I had a hard time with my diagnosis too. Im wondering why she doesnt want to accept it? Im sure theres many reasons. For me I was in complete denial that my body wasnt able to function the same and tried to keep doing sports that I used too but found out quite quick that I couldnt. It is also hard to have an unknown future and not know how to treat the darn disorder. I would say all of these things are a part of grief and looking into how to guide her through grief may help. It looks different for everyone. Maybe getting some outside support like a counselor and making sure she still tries to lead a normal life as much as possible depending on her symptoms. Wishing the best of luck to you and your family
We each know our own body... Get her to write out her symptoms... And at 14 she can begin researching online... She may discover something that no one has brought up... Our doctors are not trained to know a lot in this area... Self education is the best solution to finding adequate and appropriate care/support... And your daughter may take on more ownership of her body and health issues if she takes on the project of researching what else it could be... Try autoimmune community... Try Myalgic Encephalomyelitis community.... There are people out there she can connect with... And emotional support is so key... It's really huge to wrap your mind around life changing illness.. Teens have enough going on without adding this too. I was 32 when I first started having serious health issues... That was young enough... It's got to be harder for her..
I was initially diagnosed about 11 years ago. The symptoms you have in your videos are almost exactly what I was experiencing, so many similarities. The specialist neurologist just called it a movement disorder, gave me no useful information and sent me home saying it might resolve on its own in a few months. That was it. Pretty much useless.
A few months later I was able to find a holistic Dr who helped me tremendously. What I've found over the years is that my FND is worsened by what I'm eating. When I eat foods that cause inflammation it gets so much worse but when I cut out sugar and processed carbs it clears up significantly. I've been really strict for over a month now and I barely have any of my FND symptoms. I might jerk/spasm a few times when my kids make a loud noise whereas before I wouldn't be able to get up or would almost fall. It only happens when I'm really tired too, instead of all the time.
Something like a keto diet that is very low carb or doing a stricter elimination diet to find food triggers could really help. Nobody ever talks about dietary causes for neurological or auto immune issues but I believe it's a big component.
Cassey, in your case I would suspect chemical exposure.
You may not have been aware you were being exposed at the time.
That’s an interesting thought! What sorts of chemicals do you mean? I haven’t heard of this being of cause
@@casseyklie Cassey, you seem to be pretty informed on FND, and that may be what you just stick to as explanation.
I had the sense that the onset of FND was sudden over a relatively short period of time in your life, and not something that has always been a problem. Like being born with ADD, or ADHD or Aspergers, where in those same difficulties have always been there since childhood.
If this is true, the one of many possibilities, but not uncommonly, is chemical exposure affecting your brain functioning.
You could look up neurological effects of organophosphates I suggest. To check the kind of neurological symptoms and changes that occur for people exposed. And perhaps organochlorides.
These two names refer to whole groups of chemicals commonly used in our modern agriculture and society. There are hundreds of different specific chemicals that fall into each category, organophosphates and organochlorides.
A number of these chemicals work as well on human biology as on pests. It is just that we are a lot bigger physically and so it takes much more of the same chemicals to affect us.
One can get a health impacting and unknown chemical exposure sometimes from just walking through a park that has been sprayed, or swimming in a lake with recent chemical release into it somewhere, or driving through a region with agricultural spraying of fields, or local government spraying of roadsides has been happening not long before you drove or walked along that road. The presence of recent spraying is often invisible once the machinery has moved on.
You might then pass through the cloud of residue not 20 minutes later. Certain other conditions like heat of the day, and wind direction could play a significant factor on the level of exposure being more intense. And so by chance, you get a unusually high spike in chemical exposure that is at a level that is poisoning and does harm to your body and brain in some ways. A case of you being just in the wrong place at the wrong time.
Sometimes you get a significant health impacting exposure in view of by chance having two separate exposures within weeks. It takes time for the body to remove low level chemical exposures that normally you might not notice. Depending on the two different chemicals, the first may make you much more vulnerable to being affected by a second chemical at much lower dose. So your body and system is extra sensitive and vulnerable at the time of the second exposure. These things can happen with no physical symptoms at the time of exposure.
Another source of brain impacting chemical exposure can be from staying in a cabin or building that has been sprayed prior to you getting there. If your symptoms began in weeks or a month after moving into a new accommodation, or workplace, then this could be an explanation.
For those that get exposed to these kind of chemicals in a work related accident, those people get all sorts of neurological and health problems. Some of the symptoms and difficulties and cognitive changes are quite specific. Good to look those up if you can. Eg look up "Symptoms of organophosphate poisoning". Or "neurological symptoms of organophosphate poisoning."
Unfortunately there is not a lot you can do about it once exposed, other than good healthy food, some exercise, and hope your body gradually removes the chemicals and heals the damage as best it can over months or years.
If you learn more and suspect this may be the cause of the changes and difficulties you have been experiencing it is important to identify how you may have been exposed, eg from a new place you are living or starting a new job in an old building, recognising that the problems began weeks after that. This is so that you are not still being exposed. If this is the case, ask around if others staying in the same place are having any strange changes in their brain functioning and health as well, similar to yours.
Another possibility is exposure to mold. The stuff that grows in damp places inside buildings etc. Often dark patches on walls or ceilings, behind sofas, in bathrooms, any damp places. Mold sounds lame, but for a number of people it can be quite impacting on brain function and health. The toxins are called mycotoxins. There are specific symptoms that are associated with mold exposure. Again net search.
There is even a thing called "sick building syndrome" where lots of people get weird health and neurological symptoms in a particular building, where in either mold infestation or past pest extermination and hence ongoing chemical exposure is suspected to be the cause. You can look that phrase up.
Separate to a general Google search, Wikipedia is a good online resource to look things up. Start there perhaps to learn more. Also you tube searching for people talking about their health changes and challenges and symptoms from either chemical exposure or mold exposure.
I have supported many people over decades with Chronic Fatigue Syndrome, ME, now also Long Covid. These conditions bring strong brain and cognitive symptoms and changes. A number of individuals were in places, or think they may have had direct chemical exposure. They also find afterwards they become much more sensitive to even every day household products that have various normally harmless chemicals in them. I wonder if for some people, there is confusion in diagnosis between a post infection syndrome like Long Covid, and FND. So if your difficulties began after a flue or cold, or covid, or glandular fever, it may be worth checking out this possibility as well.
Good to trust diagnosing doctors, but also doing your own research so you can ask and understand why they think that diagnosis is what is affecting you. The symptoms between a number of these conditions overlap a lot, and sometimes a person gets one diagnosis, but on their own research and talking to others it becomes clear to them that another condition with similar symptoms and changes fits what is happening to them much better. In which case you need to raise this with doctors and seek additional medical opinions.
Taking time to give you a considered reply as you matter as a human being. We all do. Keep seeking answers.
Hope this helps.
@@casseyklie Hey cassey. I posted a long but carefully considered reply and it has disappeared. Not sure if that is yourself or utube but just letting you know.
Covid vaccines gave me mine
Chiropractor!
Hi,
I don't know but is doesn't look like there is nothing wrong with your fysical health.
I think the reason they find nothing is because they don't know it.
It could be something with the food, parasites, lack of vit b, mold in the brain.
My problems became bigger with bread, and thing like that.
Cold weather makes is far more worse.
Nsaid's helps me and benzo's.
But i'm not able to do things with effort.
Bowing my head is terrible and makes is more worse.
I take vit d,c, zinc, and ginger in the thea.
I've some appointments in the hospital but they already.said the think that everything would be negative.
Nsaids and ginger anti-inflammatory... I use Diclophenac twice daily.. Helps me tremendously.. No tremors now unless extreme fatigue, or when overstimulated by stress/emotions/physical output etc..
@@leslie6189
That is awesome !
I took this also but the dr was afraid of my stomach.
How do you protect yoit stomach.
@@eliezer1060 everybody's body is different, and reacts differently with different medications. For me personally, I have taken 50mg diclofenac twice daily, and 20mg of baclophen twice daily for more than 10 years. My stomach is more affected by the constant stress on the body..including chronic levels of inflammation... Impacting the gut and digestion and sleep. Controlling my inflammation levels has been the key to wellness for me... Eating an anti-inflammatory diet, Mediterranean diet, paleo diet... TONNES of water has also been key for me. Digestion and stomach health are central for me, as so much of our health depends on our gut... Please do whatever you can to access professional advice for your ongoing gut health. I work with a Nutritionist that I access through a women's centre, and through Vancouver coastal health.. Whichever government health organization you are under.. They have primary care clinics for folks with complex care.. Providing access to counselling, nurse practitioners, dieticians, Nutritionist, etc.
@@leslie6189
Where do you live?
Our healthsystem seems to be collapsing.
@@eliezer1060 I have to watch my fatigue levels... I had to learn to stay within "the energy envelope"... That was tough, but I now have full mindfully awareness when I am using more energy than the body can spare... That's key in reducing symptoms for me... The more exhausted I am emotionally, cognitively, physically... The more symptoms I have. My tremors have always been mild compared to yours.. And way less invasive... But just like them... It visually looked like my tremors when you shake.. But like someone turned the volume up on the Richter scale. A lot of people with ME Myalgic Encephalomyelitis report tremors like yours with exhaustion.. When we run out of cellular energy... Try watching a you tube video by the CCDP Complex Chronic Disease Program at BC Women's Hospital.. It's titled.. Mitochondria not Hypochondria... And see Jennifer brea's Ted talk(s)? She is an avid advocate for complex disease, including autoimmune and Myalgic Encephalomyelitis... In the states it's under ME/CFS... But that term is no longer politically correct.. As chronic fatigue conjures up the vision of folks parked on the sofa... Which is a huge insult to the complex inner workings of a body that is struggling neuroligically on a cellular level. Do take a look at any info you can get... There is so much available online.. And lots of patient centred communities like the Facebook group you found. Most of the living breathing workable information of how to live well with chronic disease... Is found in the patient community, thanks to very few excellent practioners that take the time to educate their patients... And thanks to the wonders of the Internet... Where patients can congregate, and exchange information... Stay connected, stay brave. Maximize what you know of the body... And NEVER push through symptoms... They are talking to you... Find out what the symptoms mean... And work on supporting what the body needs.... And lots of water in my case. Some people have also benefited from detox, and heavy metal detox... There are tests, specialized, often through naturopaths I think... You have to seek around, but you get different diagnostic tools more than your doctors have access to... Keep the faith... And please keep sharing your journey with others... Your video has led me to reconnect with how far I've come... Even though we are not in the same point in our journey... It still really helped to find your video... Also with chronic illness.. It just drags along.. Sometimes I drag it behind me, sometimes it drags me... And it's easy to lose perspective.. Even when you practice mindful awareness of how you're doing.. (I use weekly counselling to stay on track as it's a hard road).. But even with that, you can feel a little lost... So thank you for your videos.. You reminded me that I'm on the path... I just gotta stay focused.. Sometimes hard not to burn out, as the situation doesn't resolve. Adding things that bring joy has helped a lot. Do you have a pet? Animal. Companionship is also excellent for mood with chronic illness... So you're not on you're own. And FYI.. I hear you about moving back with your folks.. I was 32, and parents were divorced, there was nowhere to move back to... As frustrating as it is... You are in a good spot(unless it's not good there)... Being supported when living with chronic illness is really important. I was single for a long time with this illness... And while being with my partner hasn't changed my illness... It really does make a difference in not facing each day alone... Support is key.
This looks far more like Tourette’s with all the repetitive movements .