My FND 6 months post Diagnosis
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- Опубліковано 29 вер 2024
- Thanks for choosing to watch this video.
6 months ago, I was diagnosed with #fnd (functional neurological disorder) and #migraines.
As the 6 months have passed, I have been experiencing a lot of new symptoms, which have changed my life.
I hope you find this video of some interest. please help me and other FND sufferers raise awareness by sharing and liking and subscribing to my channel.
My videos are all about my journey through FND life and how it affects me.
It would be great to hear from other FND patients around the world.
Thanks again!
@FNDHope @FNDingMyWay @fnd @hemiplegicmigraine1917
Thank you for sharing, I was diagnosed in October 2023 and still not really understanding it all. I had what seemed like a mini stroke late 2019 and it took until late last year to get diagnosed by a neurologist who was very blunt and didn't explain it at all, made me feel like I was making it up. I think we could do with more specialists. I too was a personal trainer and dance teacher, not since 2019 hard to teach dance with a numb leg and vertigo - I think that has been the hardest part, the loss of my identity. It certainly is a learning curve I am so thankful to everyone who shares their experience it has really helped.
Thanks so much for your comment. FND has taken so much from me and my family. Its tough. I have also lost my identity but try to keep going with my mates. They are amazing, however..... I only have a few..... but thats all we need to get through the tough times.
I hope you're currently well?
Just letting you know that you're not alone. I have the same speech problems. I told my daughter that you were the male image of me. I hate that you are going through this. I wouldn't wish it on my worst enemy. Hang in there and thank you for helping me.
Did you have a covid jab and if so, when?
I had 2 astra zeneca! I believe this has triggered everything and made the symptoms worse for sure. I also had covid 4 times and quite badly
OMG!!!! Its like looking in the mirror, my eye drops, brian fog, the words are in my head but I can't get it out. I start & stop conversations as my mind goes completely blank. My memory & short time memory is poor. My speech goes slurry, then I stammer. Thee onset of the stammer is a warning sign as when that starts when my right arm & legs start shaking as if am having a seizure. My focus is affected. I already have M E. & Fibro, the fatigue is overwhelming. As well as FND I was diagnosed with Migraines. Every aspect of my life has changed dramatically, I was initially taken to hospital with suspected stroke, been diagnosed with FND April 2023. Thank you for sharing your journey 🙏
Thanks for your comment and thanks for following my journey.
I hope you're getting the support we deserve by the professionals and hope you have some support from family and friends. I'm finding that I know who my true friends are that's for sure. I'm in my own little bubble and daily routine doing what I can. How are you coping?
Thank you so much for your video! I received my diagnosis of FND yesterday by letter, and I feel completely lost and lonely... my husband knows I've git it, but I don't think he's really interested or worried... I just received a letter from the NHS Neurology team, and it was a complete surprise and the only thing they said it's that my GP received the same letter and I need urgent physiotherapy...that's all! I've been looking for info on the Internet as I've never heard of this condition before. And there's not a lot, but it gave me an idea of what I've got. Obviously the symptoms differ from person to person, but my cognitive and motor skills are definitely compromised and I think I've got it since my childhood due to physical and emotional/ psychological abuse... it all started with weakness on my legs and fatigue, but they're temporary. But as I was growing up, they started to be more frequent in my life, and now, at 48, I have had a huge flare-up... I felt this extreme fatigue and weakness in my body, especially my legs. My anxiety got worse, and I think I have depression too. This last flare-up made me feel completely overwhelmed and not able to go to work.
Hopefully, my GP will guide me or lead me to get the right approach/ path so I can start to feel better.
Thank you so much and I hope you and others with this awful condition can recover as much as possible 💗 🙏
@silviamarques75 many thanks for your comment. Since this video my wife and I have separated. It's beenna tough few years and the symptoms of this condition have been very difficult to deal with. I'm now using a cane daily to walk with and my right side is so weak now. If I manage to walk to my local cafe and have a coffee daily, that's my win. I need the sense of achievement every day and need to pace myself...... but this seems harder every day at the moment.
I hope youre getting support from close family and friends? We certainly find out who are our friends and those who care etc. Keep pushing through every day and learn what your body is able to do
Chris
@ChrisCFNDjourney thank you 🙏 I'm really sorry for your separation from your wife. Not everyone has got the compassion or empathy to understand what we're going through... even my family that I thought would call or text to check on how I am doing, they don't bother! I just have a few good friends I can rely on 🙏 I can resonate with you, unfortunately. Hope to have some good advice from the gp and get emotional/ psychological support too!
Hope you're getting all the support and help you need from the medical professionals!
Silvia 🙏
this is exactly what i’m going through!!! do you also have tics and tremors?
Thank you.. I am a 65 yr old college professor who has been dealing with the TIA symptoms for 6 yrs and previously as well... this is frustrating as all Hell and each day is a new challenge...I wish you all well and please enjoy every day... live, laugh. Love and pray... humor is a great spirit lifter😊
@ericprimuth845 love this! I'm so sorry you suffer with this illness. Butni definitely agree that we need to keep a sense of humour to get us through each day. Take care of yourself
Informative video thank you so much for sharing. Just was diagnosed this week, however now that I know the symptoms I think I have had FND for many months. It only became an issue when the tremors and jerking started.. I’ve struggled with fibromyalgia since 1997 but now I’m trying to digest all of these new symptoms and how my body has to adjust. I am feeling so very overwhelmed. I can so relate to the hearing issue and omg the vision issues are so hard to deal with. My symptoms are so erratic I think did I really feel this yesterday because it changes so much. I also can be trying to have conversation and I get stuck and a feeling of panic overtakes for a few seconds, and I have to think what was I just talking about, what was the point I wanted to make. Have you had the seizures from the beginning of your diagnosis. I feel like my brain gets stuck a lot and I’m off staring into space not really thinking about anything but just lost. The fatigue is so hard I feel like I’m sleeping my life away.
Hi, and thanks for your comment.
I can empathise with everything you've just written. It's crazy how FND has changed my life.
I no longer work or drive (atm) due to the unpredictablity and being unable to commit and manage a whole day without a symptom affecting me. It's very hard to wake up and adapt to something when you're unsure of what's gonna happen on the day.
Keep fighting and researching. And I hope you manage your FND well
Chris x
Thank you for sharing your story. I’m so grateful for everyone who is spreading awareness. I’m not yet diagnosed, but I truly believe this is what I have. I unexpectedly lost my mother back in May of 2022, and I quickly realized a difference in my cognitive function and started getting severe chronic pain. I thought it was just the grief. By October, I had severe neck pain and started having vision problems and severe migraines. I would lose partial vision during these migraines. Got checked out by an optometrist and ophthalmologist, and did not find any issues that would cause that (retinas are good). I also started having facial twitching and tingling that would come and go. In January 2023, i was at work in a meeting and suddenly the left side of my body from my head down felt like it was going numb and had twitching. They called an ambulance because we thought I was having a stroke. They did an evaluation and some tests to see if I might have had a heart attack or stroke, but found no cause for concerns. The next day, I broke out into hives, felt like I couldn’t think straight, got a severe migraine, and my face was twitching/tingling. Went to the hospital. They couldn’t figure out what it was. They gave me migraine medication and allergy medication, I felt a little better. Over the rest of 2023, I dealt with so much hell and NO ANSWERS. The only thing they found was that my vitamin D was low. Took supplements and got my levels back up. Multiple specialists and thousands dollars later, no answers. They’ve tested and scanned everything. I’ve done mental health therapy and physical therapy. Those seem to have helped some but not completely. I still struggle everyday. Thankfully, I feel so much better than I did last year, but I still don’t feel good.
My symptoms:
(In my face and basically entire body)
Migraines/auras
Vision problems
Vertigo
Weakness
Extreme fatigue and tired all the time
Tingling
Twitching
Numbness
Tightness
Convulsions
Memory problems and problems remembering words
Mobility issues
Chronic pain (nerve pain, muscle pain)
Sharp pain in my head and legs.
Sensitivity to light and sound
Lower stress tolerance
For a while, I also couldn’t tell when I needed to use the restroom or tell if I was hot or cold. I would just start feeling a tingling at the bottom of my spine and realized that’s when I needed to use the restroom.
I also have HIVES!!!! chronic horrible hives but have been tested for ALL autoimmune diseases and allergens. Antihistamines help. I wonder if there are others that have had hives too or if this is just separate and due to stress. I don’t know. But it’s horrible.
I genuinely thought I was dying last year and started getting my things in order just in case. It was traumatizing and also horrible just not knowing what’s wrong and everyone telling you that you have nothing physically wrong when YOU KNOW that something is wrong. These past two years have been the hardest years of my life.
I am discussing this with my therapist next week and have a follow up scheduled with my neurologist in may. I hope that I’ve finally found answers, but I wish there was a cure.
I hope we all find healing. I wish you all the best on your journey.
#thefriedpotatoes I am exactly lik you from 2 years. Did u find answers?😢
@thefriedpotatoes wow. What a read! I am so sorry to hear you've been through all of this and that you still have no answers. The human body is amazing isn't it. And it absolutely does sound like FND. Don't ever let anyone tell you it's all in your head or that you're imagining it. We know what we feel. And with the hives..... I also get this. Don't forget the skin is an organ and the nerves control this too. Like goosebumps etc. I get these everything I sneeze. It's nuts!
I really wish you all the best. Please keep us posted and updated with any progress woth diagnosis etc.
@thefriedpotatoes also. Just curious of you've had any covid vaccines?
I've been diagnosed for around a year and dont drop to the floor but the other symptoms you mentioned, yes.
Cognitive issues, eye problems (sometimes focusing, sometimes auras), severe fatigue and speech issues (slurring, stuttering, unable to get any words out on really bad days). I really resonate with what you said about not wanting to say anything to your partner because there are so many different random symptoms that come and go all the time apart from the main ones.
The only thing i have that you didnt mention is i often have severe sensitivity to light or noise now, lower pain threshold and occasionally limb paralysis (usually my hands)- then again i was told these were non epileptic seizures so maybe the same as you but i don't fall down or shake. Theres a trick that gets my limbs moving again that i found so its not as scary anymore.
I wish you well on your journey.
What is the trick you use? (I have severe ME/CFS and have not had this symptom in many years but it came back. In US they tell you if it's not epilepsy it can only be "emotional". I had to laugh.)
@@malainajeanthe trick weirdly is to have my limbs moved. I either have my partner move my legs back and forward or massage my hands. If I'm alone it depends on which limbs it is but it's basically using a combo of my limbs that aren't paralyzed and gravity to move the paralyzed limbs. For example, if my legs are ok but arms are paralyzed then il walk around while twisting my torso to swing my arms around, that usually takes me a few minutes but the sensation of feeling my arms moving and occasionally hit into me seems to reset something and then I can move them again.
@@AutumnsFlameDances Thank you for this! I am going to try. It's a pretty unnerving sensation and comes on at the most random times and wow, does it make me tired and scarmbled up for a while afterward. It would be a great releif to not have to experience all of it!
Totally hear all your recent unexplained plight -I’m newly diagnosed within a few weeks and can totally relate to everything you’re saying -and it’s exhausting to try and explain to others so I really appreciate your efforts to convey the whole essence -of what you’re having to face through all this -it’s very real and believable and I suffer too from all that you mentioned
As I suffer hemiplegic migraines as well -thx so much for sharing this it’s nice to know there are others who can sympathize and that we’re not alone through this difficult challenge-I’m still trying to process this and wanting it all to disappear so I can get on with my life but reality is it’s not going away -something new to have to wrap around this and try to do the best we can each day and appreciate our dear family supportive efforts to help us through -thx 🙏💕
Hi! So sorry tonhear you're going through this illness too. The migraines and fnd seem to trigger one another and the brain fog is chronic. I also now have vasovagal syncope where my blood pressure drops and I collapse to the floor 😮
I’m about 3 years into this FND journey.
I’ve come to the point that I can barely talk, it’s so frustrating & depressing.
It is my speech that has been affected the most too.
OMG I could be your twin sister in this journey! I am not yet diagnosed ( massive wait for urgent referral) but I have exactly the same story as you!!! My GP thinks it is FND, just waiting for my Neurology appointment. Thank you so much for sharing your story, you do not know how much your video has helped me.
Hey! I'm so sorry that you may have FND. But I'm so pleased you found this video helpful. I have recently done my 1 year review. And since then my mobility had deteriorated.... so I have another mri scan tomorrow. I hope you managed to get tonthe bottom of your symptoms? Many thanks for your coment 😊
Hi Chris, I am a lady which was diagnosed with FND 14yrs ago, I'm 58 now, but it's so hard to get any form of support where I live.
I lived daily in chronic pain for 14yrs and the doctors don't believe how much pain, and basically say its all in my head. And give me nothing for my pain.
I collasped 14rs ago was admitted into hospital, had every test needed and told I was ok everything's come back clear and told I could go home, having lost full use to my leftside of my body could not weightbare at all, on my discharge note before leaving tge hospital, it went through all the tests saying clear clear clear till I got to tge MRI scan it blatantly said abnormalities found I questioned it, they told me it was nothing to worry about, yet I had lost full use of leftside of my body.
Got home and spoke to my doctors then.. mentioned what I had read on discharge notes.. he read up on my notes it said I had a lesion to left side of my brain, I was oh wow really meaning what, he said I'm not sure I'm gonna send you for another MRI I said ok, in meantime still paralysed down one side and bedbound and housebound, had to have carers in 4 times a day, I get transported ti have my MRI scan and it shows a another lesion to my right side of my brain.
It was then I was diagnosed with FND, and basically sent home with a leaflet to get on with it.
It's been an awful journey having noone believe what your going through, saying it's all in my head, you should exercise more, get out more, it's heartwrenching they don't understand it hurts to do alot, I'm 58 used to be so on the go, but now just sit looking out my lounge window watching the world go by every day is a battle. I'm not trying to make you feel any worse than you do, but I can certainly understand what your going through.
Hi Chris
Thank you so much. Your videos really have made me feel less alone in this illness. Diagnosed on Tuesday after 10 years of symptoms. Finally getting my answers at 33
Chronic fatigue and dizziness and sickness are my most problematic symptoms. Dissociation too. Take care of yourself
Sounds like CFS 27 years muscle pain now my worst symptom 7 years do you have hypomobility 😊
I have just been diagnosed with this of yet I have no support this video has helped me as its scary having these symptoms and to finally know I am not the only one .I'm in my 60s been happy go lucky a runner ext to now hardly walking people asking me if I've got dimensior slow in responding slur speech, I wish I had support just to talk to someone with FND to understand this condition
Thank you so much for being open about your diagnosis, your issues and symptoms. As well life with it.
I just was diagnosed with it less than a week ago.
Sorry to hear you've been diagnosed with this very strange condition. My main bitnof advice to you is to make sure you self advocate. You know your own body and you know what is right and not etc. Make sure you chase up neuro and GP for referrals and if you have any new symptoms you just smget them checked etc
All the best and make sure you reach out for help
I was diagnosed October 2021, 4 weeks into a traumatic Covid experience. It's been extremely hard, not just with the symptoms but in understanding and getting my head around what FND is! I've just completed an extensive inpatient rehab programme for my FND. I learnt that the brain has a way of protecting us from trauma or stressful situations that isn't fully understood but there is research to show that vessels carrying blood to the emotional parts of the brain are flooded whereas to the mobility parts restricted. This causes distorted signals from the brain to different parts of the body, eg limbs etc. The distorted signals take the long route around which in FND is what causes the fatigue. I learnt that my normal pathways were still there but imagine those pathways covered in grass, so the signals to these pathways take a different route. I worked with my therapist's to get under the grass and remember the old route/pathway that is still in my memory. I'm sure I finally got what they meant when within 2 weeks of being there I walked down the corridor normally for the first time in nearly 3 years, it was like a miracle. I felt like I could use the technique and tools I learned to literally tap into my remembered walking ability. My symptoms are a kind of bopping gait just to move one leg in front of the other, totally debilitating and strange, constant large muscle jerking, tremors and shaking particulary in my left arm but can be all over. I woke up with a foreign accent nearly 3 years ago aswell and I also slur, stutter and have strained speach when relapsing. The fatigue feels like my whole body shuts down. I have a long way to go but armed with a better understanding and some tools and techniques to manage the disorder, it's now up to me to keep moving forward and progressing, but it's hard. Breathing techniques were a must for me in all areas.
Hi, thanks for your comment. I have also been having neuro psychology and waiting for another round of neuro physio. The neuro Psychologist has been amazing and we've identified some strategies to help. She has explained how our bodies cope with built up trauma and how it shuts it down and locks it away, but our bodies cannot cope and the nervous system basically malfunctions under the pressure - which really makes sense.
Have you had anything before this chris? Growing up etc do you have hypomobility😊
I have all of these awful symptoms, im yet to be diagnosed but i just know i have it , i have about 40 different symptoms its awful, i had seizures but at the moment they have gone away, ive never felt so unwell this last year, and you don't get the help, i have been trying everything i possibly can , i get all or nothing, but no drs help me , its frightening 😢
Face droop, anxiety, numbness and tingling etc caused by chronic hyperventilation. Slow down the breathing and it allows oxygen to do its thing with the help of co2. Anxiety feeds the pronlem and then blowing off too much co2 keeps the cycle going.
Are you taking any prescription medicine? If so, Have you looked into deprescribing and trying 30, 60, 90 days of beef, water, salt to taste ideally real salt vs table salt? I wish you exclusive results. Carnivore will work
Thank you for making these videos. I'm in Australia and live rurally. They have not even heard of FND here
It seems since covid it is becoming kore common here in the UK. I hadn't heard of it either. But I feel my calling to help spread awareness and my story to help others
Newly diagnosed. Finally an explanation for my seizures. I get auras then a fit
Brainfog n other cognitive probs. Used to be proud of my memory! Am widely read now I don’t remember a book I read yday. Hard to accept (getting there)
Thanx for doing these vids
Ps I totally changed my diet n things are better
The terrible vision issues …it was like I looked thru vaseline. Hard to read or concentrate on my photography. That was the hardest. Now either cutting out sugar, processed foods n wheat that’s cleared up!!!! The chronic fatigue has let up. I still can get super tired but it’s not like a black cape coming down weighing heavily on my shoulders
Please do some research for urself about gut health n cutting out the stuff I mentioned.
But yeah FND. Hard to explain to others isn’t it….
Thanks for your comment. It's great that you've been able to recover well. There isn't enough help out there but I definitely believe that our diets and lifestyle is important for recovery. It's a strange old illness and very unpredictable. I hate the not knowing and being unable to plan anything. I seem to have a few weeks where i am Stable and then 2 weeks where I really struggle. My migraines are the hardest condition to manage.
D@mn!!! you sound like me!!!!
The difference that I have an official MS diagnosis. It was 16 years ago. Also I'm a 50+ years old lady 🙂
I'm so sorry to hear this. 16 years?? How are you coping these days?
Hi my daughter has been diagnosed for 5 years now. It's been so hard but fantastic to hear your take on how it feels. It helps me to understand more. She has not had an easy ride of it. Really hope your good days out weight the bad. Stay strong X
Hey,nim so sorry tohhear about your daughter. It's very clear that every one of us gave a different journey with FND. Unfortunately this last month has bee. The hardest for me. My wife and I have separated 2 months ago and my symptoms are more mobility issues. It's so tough. I'm usually a cane now and struggle daily.
I have it also. Hard life. But so recognisable! Your symptoms are just like mine! I will follow you and it’s unbelievable difficult! I have the diagnose also a few moths. Treatment until 14 weeks starting. But exactly your symptoms! 😮
Newly diagnosed. Body had been glitching for last 8 days, like throwing fits while i am awake. Spent last week in a hospital and diagnosed with this. Got home and took some cbd and hhc drops probably overdone it as never used them before. Was a bit 'stoned' yesterday but the ticking has stopped for almost 24 hrs now. Still lightheaded but was before hand to but nice to het some repite from the body ticks.... My question is this. Are the symptoms likely to get worse or change to more severe ones? How can i cure or manage these conditions... Has cannibus extracts helped anyone else?
Yes, helps me - minimises certain physical symptoms, relaxes muscles, fewer ticks
Hi, so sorry you've had this diagnosis. Eachnperson is different and everyone's symptoms and disability will be different. It's now a year in and my disability has progressed and I'm now using a cane to walk as I have spasticity in my legs 😮
I’ve been diagnosed with FND recently, struggling with a lot of the symptoms, I just pray I can improve and make some progress this is all very scary. I can’t imagine my life being like this for any longer my quality of life is barely what it used to be.
Hi Chris. My daughter has had FND since March 2020, right before lockdown. Hers started as a panic attack that turned into severe tics (I believe hers was triggered by anxiety) now she has all manner of symptoms. Some of her mental symptoms are really scary, de realisation, dissociation and still severe anxiety and depression. She has intermittent paralysis of the lower half of her body. Seizures, loss of hearing, loss of voice… stuttering and tics. Yes, my daughter has constant vision problems. Bladder and bowels problems.
Also, I’ve noticed if she is ill for example with a virus, it will trigger a lot of FND symptoms. It’s an absolute mine field
However, I started her on a pre and pro biotic as your gut microbiome sends messages to your brain so maybe they can help support her? And I also give her a Vit d3 and magnesium supplement. It makes a difference to the severity of her symptoms for sure. And you’re right about anxiety being a major trigger which she has therapy for. I hope you are doing well and if you are not, please don’t give up hope. You’re not alone
I was diagnosed with FND and Long Covid, 4 weeks after getting Covid in Oct 2020 . The most life changing experience ever . Can be very frustrating when the bad days hit, without no warning and takes days to recover!! I feel like battery that's never fully charged . 🙄
@BeccaTugs you absolutely hit the nail on the head. So prior to my FND diagnosis I went to a private neuro who actually said I had long covid..... which I refused to accept as my diagnosis. So I'm unsure whether I gave this or not. However, FND is bad enough for me along with severe migraines and neurocardiogenic presyncope now as well. The list seems to be getting longer.
I really hope you're having a good spell of health?
Thank you for sharing. It's a lonely condition because so few people, even Dr's. have never heard of it. I thought I'd found a great neurologist because he eas able to diagnose my condition but only told me to get a therapist. Six months later after developing more symptoms I returned him and he was very arrogant and condescending. Insisted that no one uses the term FND any more and now it's called psychogenic movement disorder. He said this is not neurological problem and seemed offended anyone would think so. I told him I was afraid of my future seeing that some sufferers actually became bed bound with peralsys. He scoffed and actually said "No one becomes paralyzed unless they want to...psychologically. I said I read alot that England is farther than the U.S. in understanding and treatment facilities. He said "Why don't you go to England then"
I won't be going back to him.
@janetwoodward6372 I'm so sorry to hear that you've been treated like this. Its awful. The thing is.... only we know how our bodies feel. I really believe that there's something going on and this illness just cannot be seen on scans. Just because they cannot see it on scans some believe that what they have been taught is the only think that can become an issue! It's utter rubbish. I'd advise you to see another neurologist, do some more research about specialists in the US. all the best and keep me posted with how you get on.
Thank you so much! My symptoms are dissociation, seizure like symptoms, numb legs, and Tourette's like ticks. I really needed this video! It's made me feel a whole lot less alone
@blindmusicalist I'm so pleased it's helped you have some comfort. It's a very unpredictable and stressful illness and one that is very misunderstood. I hope you're managing OK and have a good support network? Happy to help and advise if needed 😊
Until today I have been struggling to relate to anyone with FND. I too have been diagnosed with FND. Thank you for your video. I’ve subscribed, I look forward to further videos. Thanks for sharing
Glad it was helpful!
Hi, thanks for posting this video. It is so affirming to hear someone else with similar experiences and symptoms and also to hear you vent!
I am just in the diagnosis process at this stage, so not 100% sure it's FND. I still have nerve conduction studies to go, but my GP thinks it's looking like FND.
I can totally relate to the cognitive problems! Getting words out, memory, mangling words when they do come out. I also have issues coordinating swallowing sometimes. I also have a very physical job as a music tutor/musician. I am just managing to hang in there tutoring, but any live gigs are out at the moment. And yes for me, my music is definitely a go to for a mental health boost as well as hiking and kayaking. It's pretty hard to lose those joys, although I do occasionally manage a short kayak or short walk from time to time. I have lots of numbness in my limbs and fingers/toes - not good for a musician! No seizures, but dissociative episodes and spasms and cramps, mostly in my legs and feet. I have eye pain in one eye, and problems moving that eye when I am tired. It really is exhausting, just trying to get through a day. Wishing you all the best. 🎵
I'm so sorry that's really tough.FND has a horrible ripple affect into different areas of your life. Are you managing to get some help from any services ? Know it's a battle with this diagnosis. Sounds corny but your not alone honey. Wish I could make it go away for you. Have you ever gone to a support group ?
Thanks for your coment. And I hope you're well?
I'm very lucky to have such a great support team. I'm a year in now but unfortunately my mobility has deteriorated and I have another MRI tomorrow to check for MS . It's been tough. Hope you're well?
The talking thing is part of cfs
Chris,have you tried myofascial release? the myofascial is in every cell in the body, can heal most everything. I found one that I'm just starting with and doing some visualization on my own also, after watching John F. Barnes. His video on you tube is called "a word with John F. Barnes." start at 13 min for the gist of it. He's so comforting, loving, and caring too. I found it by accident. I'm hoping it helps my severe neuro symptoms of 16 mo. I feel for you as I understand what feels like torture at times. Hardly any of my family comes to visit me, or sends a get well card (I mean not that I really look for a get well card) because people just don't acknowledge brain issues like other health problems. I wish you well and will pray for your healing.
Lots of love from someone who's been through it and still is.
Yes yes yes ! Thankyou for sharing all my symptoms too..I have some demyelation so thought it was MS I have have white Matter lesions and half MS lesions since MRI March 2023...but now Super specialist in MS Neurology thinks it's FND !
Do you get electric shock through tongue or throat ?
Take care
I also had white matter on MRI, but they said it could have been my last serious Migraine attack. So i think they are keeping an eye on me. But they are still adamant it's FND! But it's so important to keep a record of symptoms cos that can quickly change!
Listen to your body and keep reaching out! 😊
Has anyone had tests for MS with neurology because the symptoms are so similar just without physiologically visible causes? I have FND with ME and my neurologist feels that trauma and stress is the root, but I do have pain which they say isn’t a diagnostic of FND? Thank you x
All you can do is keep going, listen to your body and testing. Try not to worry too much and take it day by day. Neuro condriona can take years to diagnose properly. Keep going,, reach out! You're not alone 😊
I got a diagnosis in January I have been suffering from this for the past 10 years.ive had attacks on trains and have to drag myself of the train because I was paralysed.i suffered from disability for 15 months.every time I went to hospital I hav e been sent home with no answers the junior doctors all have look and multiple times have been sent home paralysed I feel like my life has been taken away from me doctors and nurses think I'm putting it on because it resolves sometimes.my toes and fingers contort for no reason I feel every emotion that you feel.the first diagnosis was hemepliegic migraine which I do have. I have cannabis and it relives some of my symptoms but when I don't have it all the symptoms come back with vengeance.i even had a procedure to close a heart murmer and a hysterectomy to help symptoms.Not enough is known about this condition. I have had no help from Australian health care or benefits unfortunately because I'm married,any disability doesn't exist in the eyes if australian government. I have been treated very unfairly and wish I could of found out about my condition from nhs when I lived in uk. I feel your pain and actually I don't feel alone anymore after seeing your video keep up the good work.xxxxx
It's so upsetting to hear how most of us are treated! But at the same time it's so important to listen to your body! You know how you feel and no money should tell. You other wise. Keep reaching out.... Spread awareness! You're not alone
Also ime looking qt cci and lymes test as nhs test are inaccurate
Hi there I also have fnd first diagnosed March 23 been a hard year struggle to walk nerve pain is so hard i get nerve pain in my mouth on a daily basis its like someone drilling my mouth
Sorry to hear this. FND is tough. But keep listening to your body and reaching out. You're not alone 😊
THANK YOU CHRIS🤗THANK YOU SO MUCH💕Im a month in, and I feel so confused and alone and needing so much to hear someone else, I'll be subscribing, following anytime you are up to sharing... THANK YOU FOR YOUR HONESTY ❤
I feel alone also. With all my severe neuro symptoms, all drs have discounted me and don't refer me to anyone. I need support badly but dont know who or where to turn to. I'm having my second session of myofascial release today, hoping it will help. If it does, I'll let the world know. I know I'll need several treatments as I've gone through torture at times for 16 mo. What kind of symptoms do you have. I have about 10 including severe insomnia - oh if only I could sleep. It's a wonder I can still think, I'm an otherwise healthy 74 yr old female. My husband has Asperger's and doesn't ever show any empathy, just says rude things like, "it would help if you didnt lay around all day'" or "you're not doing a thing to get well." I've done everything under the sun, it's a lot of work to be sick, especially when I have to fix my own meals, mostly shakes as my appetite has been a problem most of the time. Thanks for listening. I"m a compassionate person and will listen to anyone. I took care of my Dad for 9 yrs, have a son on the autism spectrum, etc. so "sorrow makes for a better heart."
Hey! So sorry to hear that you've been going through the painful process of diagnosis. It's long, but at least you have answers . It's so important to reach out. Stay in touch. 😊 Chris x
Thank you for posting, I’ve had FND for 8 years and you describe it perfectly 🥰
Thanks for your comment. Wow, 8 years?? How have your symptoms changed or even progressed?
My symptoms have changed massively, I was originally diagnosed with epilepsy and put on anti seizure meds. It took 4 years to get the FND diagnosis. Once I got the correct diagnosis it’s taken years to get treatment. My 1st specialist appointment is in May. I have moved from Australia to Uk in the middle of that tho ❤
Do you have hypomobility.ime diagnosed decdes cfs fybromyalgia with elements fnd but at 43 ive found out i have heds autism adhd causation
I've just been advised that My symptoms are probably FND related...You symptoms are very similar to mine, I find the leg tremors and speech issues my biggest issue, It's just draining and frustrating. Thank you for your videos it's helped me start to understand my symptoms.
I feel it's so important to spread awareness of this illness. I know how lonely you can feel
Thankyou for sharing this information
No worries
Hi Chris,
I was just diagnosed with FND a month ago but have been dealing with symptoms that have been deteriorating for well over 5 yts.
Like you I have migraines with constant dizziness and frequently have vertigo.
I have constant double/ blurry/ tunnel vision. I also have huge swallowing issues. Have you also lost your sense of smell?
Relate to everything you shared. I too have had to give up driving as I had a blackout while driving.. I havent been at works since April(24).
I feel like I have to justify being sick to everyone as FND is mostly seen as a mental health issue and people react to a PD diagnosis with sympathy , but just go owh and look away when you mention FND.
It is hard learning how to navigate through each exhausting moment , all the while those around you wondering when you are going to just snap out of it.
Grrrrr.
I explain the word/speech disconnect as a word train derailment. Other people can picture that in their own heads more easily than anything else I've tried. "Visualise" was the word I was struggling for. Edit to add the final phrase.
This is scarily familiar and I think you hit the nail on the head with the descriptions. Do you have any recommendations for FND physio exercises? I am on a list for FND physio and neuropschotherapy- this is currently at 2 years, I’ve done 1 year wait so far. Thank you Chris. So much x
Thank you 🎢
Hi, Chris.I have come across your video on UA-cam.Because today I have found out that I suffer with conversion disorder Which is another word for f.N.D I have trouble walking. Sometimes I have trouble getting words out properly even though my brain know what to say it come out completely wrong. I also suffer with ticks as in jolts. All of my body. They are very bad night times My left hand side of my body aint as strong as my right hand side.
Keep reaching out to others with FND. don't think you're alone. Listen to your body and don't over do it. Thanks for your comment
Chris
I really feel for you. I have ME and POTs which has caused some similar issues to yours. I used to do ironman, ultra running and outdoor sports.
Now i am mostly housebound and have given up work.
I hope we both manage to get some of our lives back
I have ME and fibromyalgia diagnosis and FND for the last year. It is so confusing to lose function and energy as a person who was constantly on the go.
Yes it's life destroying
Mate! I'm so sorry you have to deal with this or similar. I miss my exercise massively. I miss my old life..... But I'm working hard to get my life back.... Whether it will work or not. Keep push mate..... All the best!
@@ChrisCFNDjourney thanks man. I hope we both make it out and get our old love of life back. All the best bud
@@sarahdawson798526 years me fybromyalgia pots with elements of fnd though pots in remission.do you have hypomobility heds found out I have autism causation
At least you have a diagnosis ,six years and still being told it is all in my head
Hello Chris thank you so much for your videos. First of all I would like to say how strong and brave you are to share your story. I myself used to be a very fit ex forces marathon runner etc. last September 2023 I had what I can only describe as a panic attack before hand I suffered with fatigue. I am now in the process of getting a diagnosis for M.E CFS. My symptoms are a mirror image of yours although I have not had a syger. But starting to get the shakes on my right side arm and leg I have started using a crutch and knee supports as they seem to help me stand for longer. I have to see a neurologist in 10 days time as I'll be checked for NFD. But your video is always my life I have a young family as well so thank you so much you have really helped me as I have been feeling very low and alone with it all and like you I could wish for a more understanding family God bless you Chris and thanks again I'll keep you posted.
Hey! Many thanks for your comment. How did it go? Any news?
@@ChrisCFNDjourney Hello Chris thank you for your kind reply. Well today I went to see the neurologist he thinks there is something wrong with my central nervous system!! They are booking me in for a CT scan to try and rule out MS the wait continues take care of yourself Chris 🙏
@bretsmith6473 I hope the scan goes well. I had a scary MRI today. They stopped the scan and I was in there for 5 minutes without anything happening. They found something and wanted to check the next protocol. Then carried on the scan. Just waiting for the results. 🙄
@@ChrisCFNDjourney Hope you get the results that will be positive going forward I had a lung capacity test today It really did me in half way through I had a new symptom I couldn't pronounce my words I went dizzy and stuttering every day it's something new stay strong 🙏 let me know how you get Chris you are a massive help to me and everyone else 👍
I have FND and a medical massage therapist..
Thankyou for sharing your story and for describing FND so perfect. I too have FND and like many others who have commented feel you have told our story too. Take care 😊
Thanks for your comment. I think everyone who goes through this illness can feel where I'm coming from. It's different for everyone who has it but we're in it all together...... Reach out!x
Thank you for your video. I have all your symptoms except for the frequent seizures and hearing loss (but have other ear related issues). Been suffering for many years and first went to GP for help around the age of 25. They systematically played down my symptoms and patronised me to this very day. Symptoms have gotten progressively worse over the years.
I'm now 39 and have been decidedly robbed of my life by the nhs. Been told it's in my head, just get on with it, and treated as if I'm lazy. Through my own research came to know all this have at least something to do with severe Magnesium and B12 deficiency. I don't know if you've looked into that? I'm taking about 2000mg Mg a day now. It has helped alot. Also helps vitamin D in the body do its job. Haven't started B12 yet. Anyhow wish you all the best.
Wow. I'm so sorry it's taken so long to get the diagnosis. But I think we have all heard that "it's in your head" or "you need to talk" etc. I think it really depends on the luck of who you get as a specialist. The main thing is that you know your body and you need to keep pushing for answers and help. You're not alone. Reach out 😊
So kind of you to reply. Means a lot thanks. Sometimes I feel like giving up as I've lost everything over the years through their neglect and treatment refusals. At 29 I asked a GP for migraine treatments as pills only make me more dizzy, etc, etc than I already am. She down played and sent me away. 3 years ago I found out she had made a note saying I think I have migraine, I imagine I have migraine, I imagine even briefly passing smokers by on the street gives me nausea and headache, that its probably just boyfriend problems. I had even disclosed I was 3rd generation with migraine in my family. What an unhinged "diagnosis". Looking back, that GP was about to go on her maternity leave so was probably unhinged and hormonal. Not fair on patients. I remember how invisible and disheartened I felt leaving that appointment. Didn't know the half of things she'd dreamt up and written down as "diagnosis" after no diagnostic scientific medical tests just a 5 minute appointment and lots of typing. Sorry about another long message I just typed you. All the very best to you. I'll continue following your channel and health progress. All the best fellow sufferer.
Everything you have mentioned about your FND is exactly what I have been going through for 2.5 years. Good luck with your own journey with FND and keep the videos coming 😊
Many thanks for your comment. This year has been tough! Hope you're coping ok.
@@ChrisCFNDjourney so you have much muscle pain daily
@@ChrisCFNDjourney my days vary, today was a good day but as you will probably know yourself, it can change like flipping a switch. I feel for my husband as he has had to be my carer and the breadwinner but he doesn't moan about it which I'm surprised at as I'm not a good patient 😁. I hope your day has been a good one and let's hope someone out there can eventually help us all.
I think it's more spasticity which causes the pain. Muscle tightness and spasms too.
@@MyPoppy09 yeah, it's so tough. Especially if I over do It the day before, I wake with numbness and serious fatigue. Hope you're doing ok though?
Hi Chris! I'm a fellow FND 'person' (I'm not sure I like the word patient or sufferer!). "There's lots going on" resonates with me in every way. I've had major symptoms since 30 years ago (but probably had it mildly before then). I've just been discharged from St. George's after 11 years with them - the letter says 'FND in remission with blips' (I love the highly medical term: blips :) ). Well done for sharing your story and journey. It's an exhausting condition and there is so little awareness of it. I've been lucky to have stayed in work throughout, but I completely get the stiffness, "walking like a robot" (I used to say "like a marionette"), dizziness, cognitive difficulties, etc. My speech has been very bad but isn't too bad at the moment. I also used to say "like wading through mud", too. I have a bad tremor on one side. I hope you reach an easier place soon. Sending lots of love and empathy x
Hi Lucy,
Thanks for your comments. I really hope you're coping ok since discharge. FND Has come and hit me quite hard and I appreciate it affects everyone differently! I'm still seeing my neuro thank goodness. My bladder and bowels have now been affected recently. So keeping an eye on this.
Hope you're well. And stay in touch x
@@ChrisCFNDjourneyI've had IBS since 3 so I've been suffering before I was severe
Thank you for sharing. My 41 yr old daughter has fnd. It's a difficult disorder.
My symptoms started with my eyes, thank you for sharing your story. It’s like you are telling my story.
Thanks for your comment. FND seems to be coming more understood as the years go on. We need to get the awareness out there and it's important for us guys who have it to spread awareness. So important for you to reach out. 😊
Thank you for sharing. So much of this resonates for me too.
Glad it was helpful! Please keep reaching out and listen to your body. It's so important
My symptoms came on eight years ago, with what seemed like a mini stroke on my right side. For a long time it came to nothing and I was fine. Then one morning, four years ago I woke up blind in one eye, which lasted three days, after that, in no particular order, fatigue, light sensitivity, migraines, leg weakness, knee buckling, pins and needles, numbness, tremors, head wobbles, eyes rolling, tinnitus, cognitive issues, slurred speech, now, five years later, I can't walk further than a short walk, sometimes I can only get around the house. Of course depression set in and anxiety, I do work from home, and love my job, my husband has been brilliant, but I can't work for very long. I've now started to experience seizures too, so going out less and less. My symptoms used to remit and relapse, but I basically have them all of the time, some days are better than others. The fatigue is the worse tbh. I think the hardest part is friends starting to trail off. I can't make plans any more as I don't know from one day to the next how mobile I will be, or how I will be able to keep up with a conversation. FND is so poorly understood and I have had some very negative responses from medical staff. I'm due to go to hospital for a month in London, to finally get the help I need. Keep pushing, keep fighting, it's a tough road but there is help available on the NHS in the UK. Hope this helps Xxx
Thanks so much for your message. And I'm sorry you've struggled with this illness! Ive suffered with all of your symptoms. It's the not knowing and the unpredictability of it all. My migraines are also very hard to control and manage. It certainly is a tough road but it's gonna be a journey and new way of life with adapting.
Best wishes to you, keep fighting x
Thank you for sharing. I have limb and face spasms but not seizures. I think my pregnancy started it off. I have a theory that adrenaline plays a part for me as does looking into the far distance, peripheral vision and looking behind. I am embarrassed by my face spasms and tongue spasms as I sound like a cow lowing and can't communicate. At those time my hearing becomes very sharp. I wish you well and hope to follow your story. All the best.
Hi, thanks for your message.
Try not to be embarrassed by your symptoms. It's so hard not to be and I am very self conscious as well. When I walk through my village and I am limpingbor dragging my foot I see people staring. I was known as the 'fitness guy' before all this happened as I ran everyday and train locals. But now I need to accept it's part of me..... Which is hard to do.
Vision issues on a daily basis make me feel imbalanced and trigger migraines which I hate!
All the best and keep in touch
I'm so glad i found you on UA-cam! Im having the same cognitive and gait symptoms. Two weeks ago, i had my follow-up appointment to go over all my testing with my neurologist. She said, "Good news, all the tests came back negative, and you just have FND. Your psychiatrist needs to get to the root cause of mental health with Cognitive Behavioral Therapy." She made me feel like I'm crazy and it's all in my head. I went back to my primary care doctor, and she recommended I see another neurologist so that I can get the support I need. I will definitely be following you. Thank you for being so open with your symptoms. Take care.
Thanks for your comment. I think a lot of people feel like this and treated this way. It's such a shame. I'm one year in now and have another mri tomorrow as my mobility has deteriorated and been debilitating 😮. Hope you're well and coping OK?
I was diagnosed with dnd in 2021 and it's so hard to live with. I have similar symptoms as you. I recently have had drop attacks to where my knees buckle and I'm down.
Thanks for your comment. I've been having drop attacks where my blood pressure just suddenly drops and I collapse, can also trigger seizures and fatigue. Hope you're coping OK 👍?
Thanks for your comment. I also have drop attacks now and again. Its almost like I'm walking like I have parkinsons at times. Scary stuff.
I was diagnosed in July 2019, 4 months after an operation which caused a SCI. It took me 3 years to get my head round it, but understand how my emotions can trigger my symptoms.
I have alot of sensory symptoms, like blurred vision and blocked ears. Alot of nerve pain, skin will feel hot, freezing or pins and needles , but mostly only when I am actually in what I call a flare up.
These can start if my bowels or bladder have an organic problem, eg UTI or constipation. Change in weather temp, I can't get too hot or too cold.
Fatigue can be a trigger and a symptom.
I will get changes in the tone in my calves and feet, which feels like compression bandages to extreme cramps and spasms. This feeling sometimes starts from the waist down.
I don't have seizures or dissociative episodes anymore.
I walk with 4WW indoors and wheelchair outside.
I also have cognitive problems,especially memory.
My speech can change in the same conversation, sometimes I barely talk above a whisper.
My husband can always tell by the way I am talking, that I am not good.
I get headaches, but not migraines.
Ì have learnt to manage with my body, but it never makes it any easier.
HI ❤ I have the same thing
😊😅
Hi, I hope you are well with it and managing ok? Thanks for following my journey