I'm so glad this video popped up in my feed I was basically diagnosed with FND exactly the same time you were last year. I was lucky enough to have only spent one night in the hospital but I have gone through just about everything you have in the last year except loosing my driver's license. Unfortunately we do not have the help here that is needed so I'm pretty much winging this on my own and from what I discover on the internet. I have suscry to your channel and will share with others I know going through the same thing as me . Again thank you thank you Do much clsrity now
I am so glad that you've shared your experience with FND. It was first suggested that I had it back in November last year after I had a full brain and spinal assessment done to check on severe pain in my lower spine from a very old horse riding injury. Having neurological symptoms such as chronic migraine in my adolescence years,along with a heart murmur was just the start of it all. I was officially diagnosed in March this year with FND by my headache Specialist I see to manage Hemiplegic migraine,with seizures. Then after having a freak accident in December last year where I had a head injury requiring CPR, more seizures occurred then and after that accident. I had an EEG performed this February which showed no abnormalities. I was seeing the Epilepsy team of a large hospital who officially gave me a diagnosis of Convulsive Functional seizures due to FND. I've had CPR done up to 4 times,mainly during a Hemiplegic migraine attack. I was also diagnosed in June this year with PFO Patent Foramen Ovale(Hole in the heart) by a Cardiologist and I am on the waiting list to see a Specialist for management and treatment of FND sometime next year. In a Nutshell that's been my life for these past 2 years,I've lost count on how many times I was misdiagnosed with other conditions and how long I have been in hospitals for. I am 52 yrs old and have support and walking aids,walkers and a wheelchair to help me with day to day activities,the daily tremors and monthly migraines are manageable but only with the constant support from my family and health care team.
Thank you for taking time to create videos. I know it must be exhausting. I was recently diagnosed by a neurologist, after over 35 years of searching for answers. Thankfully, no seizures but I get chronic fatigue, constant prickling and throbbing feeling all over, migraines, tinnitus, brain fog, imbalance, pain everywhere, dizziness, shortness of breath, anxiety, swelling at times, organ malfunctions, slurred speech at times, tremors at times. Every day is different. I react to the barometric pressure, medications, and certain scents. Some foods cause reactions, as well. So, treatment is taking propranolol for migraines and anxiety and cognitive behavioral therapy, physical therapy, and psychotherapy. I had to go part-time at work and semi-retire. I believe I’ve had this since I was a teen.
Thank you so much for sharing your journey 🫶 I'm two years on and it makes such a difference hearing how others are dealing with FND. Stronger together ⭐🫶
Good luck with the new physiotherapy. I was diagnosed in June 2020 - good days/bad days, but more good than bad for sure (I'm 62 and had to retire b/c of FND). I can do many of the things I've always done (I'm a very active person) but on a more limited basis. The hardest part is accepting your limitations. I got emotional hearing your story because you express it all so well. I'm glad to have found your channel. Thank you!
I’ve had ME/CFS for 45 years. It’s now got so bad that I’ve been diagnosed with FND. This came on worse after major trauma - someone close to me on holiday in New York and shot in a drive by shooting. I’m working with a psychotherapist - at my own expense. I’ve taken myself off all meds including Co-codamol and I am improving.
I have been unwell for I year, and I gave up last July I went to bed woke up the next day and had really awful bug , I was ill for 3 days, and then my legs wouldn't work I knew something was wrong and I stopped eating and walking by Oct, and started eating and walking again endcof April, I have had nerve conduction study , it came back normal, but I'm currently in a nursing home I am doing my own exercises and physio, I get about 36 symptoms, I'm waiting for general neurology appointment, it's a 50 week wait , the symptoms are horrendous
@@ChrisCFNDjourney yes a son but he’s out of state. I do get Botox. And have a neurologist at Cleveland clinic I live 2 hours south. Thanking you so much for your support your video gives me hope. I have a speech therapist at Cleveland who is encouraging the ultrasound it’s just hard because I depend on “caseworkers” through local mental health to arrange my rides but I’m not giving up again thank you so much
Currently 63. Symptoms for 24 years. Almost got used to the issues, ha ha. Can no longer walk, drive or ride my motorbike, having to use an electric wheelchair because my right side is almost useless. Having increasing speech and right eye problems. The feeling of frustration bordering on guilt for being unable to work for me was the hardest part of trying to cope. Unfortunately, due to the time it took to get a diagnosis (18 years) I've been told there is no treatment beyond my own coping stategies. The best one is make your brain giggle during an event (specially a drop attack). But the migraines are only occasional now (4 in a good year).
Thank you so much for sharing your Video of 1 yr in with us Chris💕What a terrible time you've had😢 I'm so happy for you that you have a good Support System and amazing Family 💞 💕from 🇨🇦
Keep going mate great vid! I notice stress has a massive impact too so the key here is do things that make you calm relaxed let go of negative thoughts the mind is such a powerfull tool ❤
I've only just been diagnosed. At the moment i have fatigue, dizzy, and body jerks. After a week in hospital i got 5 to 7 mins with the neuro. She seemed solid it was FND and all i got was a website... i am in the dark on what to do. Can anyone tell me how often symptoms change, get worse etc? Should i go back to my job of coding job. I find it stressful at times due to the brain fog i guess? Is it a good idea to go back will it make it worse?
Relate to everything you have shared Chris, it affects every area of our lives. You are doing such a brave thing in making these videos. Loneliness is abig thing in this condition.
Isolation and loneliness really is tough to accept after being very sociable years ago. However, you know who are your closest friends during times like these.
Hi Chris. Just came across your videos. I was diagnosed with fnd March last year also. I have migraines and tics both motor and vocal although the vocal only appear when very excited or very anxious. Great to hear your journey and willingness to share. As you have said its hard mentally when friends try to understand but can't. Keep the updates going. All the best
I feel for you man. Am on Aimovig now, second day. Migraines are debilitating. Thank you for sharing. People don't understand when I just can't function or even have visitors.
Tough isn't it?! Seriously, I just wish people understood it a bit more. Because there's this persona based around FND from the past due to medical professionals saying that "it's all in your head" or "stop pretending"..... but I really think it's becoming more medically understood now and will be in the future. I hope you're coping well at the moment??
Im strugging with the same issue its been about 4 years now I was able to go from paralysis and dystonia to walking in my home now. I still get flare ups and dont drive or walk outdoors much but every day is a new day. Stay strong
@stellaancimer8505 Good lord I won't go down that rabbit hole again 😅. I was positive in the hospital but treated aggressively for years and spent over 50k. On alternatives. I did not get better at all only caused more issues with abx and other alternatives. There is no conspiracy after a standard course and time the majority of the infection is well undercontrol. If anything remains its post lyme syndrome and that diffrent. Best to follow Columbia lyme online for any updates.
@@Zero-Cool_ i am sorry to Hear that, how they treat you? I had chronic lyme, but i didnt take any antibiotic, Just some herbs and changing the diet..for chronic lyme antibiotic dont work..for what you spent so much money? It is alot, did you go on stem cell therapy? :)
@@stellaancimer8505 Hbot,Herbs,Ozone,Magnetic therapy and a few others I still take luracidin, oil of oregano and the occasional cat's claw, and Japanese knotweed. I was lucky enough to work closely with Buhner before his passing.
Hi Chris my diagnosis is almost a year too. Got some neuro things to go to and have been given a date for some FND physio which will be interesting… if you want any info let me know and I’ll share the things they do with me :) thanks for posting again.
Was your pain/is your pain anywhere .other than the migraines and chest) with your FND and if so, what helped you? Oh wow... the vision thing, the breathing thing, the trigeminal neuralgia, the muscle spasms, the chest squeezing thing,.. I have that on my entire rib cage and it is horrendous... it IS scary and I have had that too. It IS super scary. I was told I had vasovagal syncope or POTs but having read other folks stories I wonder if it is simply an FND thing... it is so hard to know. Amitryptiline caused me to have sinus tachycardia and when I changed that to a new med, it stopped, so if you are on that, perhaps mention that to your neuro. I really appreciate this channel. Thank you for making it. I am so sorry you have to experience this. I have FND too. And you're right.... there is literally no follow up and there should be - at least you have a neuro who is somewhat following up with you, that's a positive thing. I was simply left to my own devices and had to pay for a consult with a private neuro and this is quite common. As far as England goes, Brain and Mind, run privately by Mark Edwards who I have only heard good things about is meant to be excellent although as far as I am aware (from the reddit subforum fnd which is super helpful and supportive if you haven't been there) it isn't cheap, but someone on subreddit saved up for it and found it helpful. Also, what I have found helpful is Howard Schubiner's work. It's a website named Unlearn Your pain, but it covers multiple things, not just pain. He is also super nice and will respond to emails if you have questions and he has a free course, a book and a pay for course too... hopefully this may help you too, it has been very helpful to me although initially I was very sceptical! I hear you re the meds as well as how things get lumped under the FND umbrella - which can be quite problematic as it seems when you go to the emergency dept with a new symptom whatever it is they put it down to FND... I really feel for you, but be encouraged - people have gotten better from this, even though thus far mine has also progressed. I am hoping you and I fall into the category of ultimate recovery. Also, giving up work - I hear that.... I am so sorry you had to go through that. And yes, I was like you.... super fit, living a very positive and healthy life. I know you feel like a 70 year old.... so do I, but don't give up. You are not alone and I am so glad you have family support.
Thanks for your comment and support. Yeah I definitely get pains and lots of numbness. I forgot to say that I use a cane now my gait is awful. I get wobbly days and my feet feel like they're burning. The pains also shoot down my legs as well as cramps And dystonia. I hope you're coping well and getting support as well.
Thx Chris -sorry your FND journey has been so debilitating and discouraging-I too have very similar issues that are flaring up for me too -they want to try Prozac to help calm the brain between comorbidities im hesitant cause it seems like the side effects will kinda make my symptoms worse not better anyways I appreciate you sharing your experience with us cause it is helpful to know there are others going through similar challenges and it’s nice to know what helped and what didn’t Thx -hang in there -we’re routing for you to keep up the awareness as it is very real what you’re explaining and so many opposing opinions out there -positive thoughts are always welcome
Hey, thanks for your great comment. I appreciate that we're all different and each diagnosis is different for everyone. Everyone will have different symptoms and degrees of disability. But it's all coming to light now how common FND is becoming. It's such a shame. I hope you are well amd coping well? Chris
My son might have this, but I think it is caused by mold exposure. We are trying 3 teaspoons a day of Prodrome Glia and Prodrome Neuro, which has cured people with Parkinson’s an ALS.
I was diagnosed with FND due to a semi paralysed leg which began a few weeks after my 1st jibby jabby for covid. Could the jabs be causing this condition in some people.
This is the hardest part. It's so misunderstood. However I think its becoming more evident to specialists that there is something else going on and a new illness that they cannot see on current mri scans etc. I know there are trials for new scans going on atm.
I take tramadol, amitriptaline excuse spelling 😂 diazepam when really bad ive found it is a superdrug for leg pain even the day after my legs are like new again! unfortunately its not a long term drug because of addictive nature but arnt all drugs addictive if they work 😊 the amitriptaline seems to work with the insomnia! Im hoping i can cut out the tramadol soon slowly slowly ive found one of the best treatments is massage works wonders also i see a chiroprator thats also really good ❤
@@ChrisCFNDjourney what tests you had chriss? Im waiting on a another brain mri had one 2 year ago nothing seen but neuro recently found issues with pupil and dialation light test? So booked in again.. Im also having a emg and nerve conduction study for the twiching drives me nuts!!! is it the same road you have gone regards tests?
Do you have lesions in your brain? I do..I also have tons of symptoms, physical and bad neurological, tired 24/7 I did horrible on a cognitive test..On my mri it states chronic small vessel disease of the brain, with brain atrophy. So confused when the nero spyc diagnosed me with this fnd.
@@ChrisCFNDjourney yes I have fybromyalgia CFS part of it to but underlying thing what causes it is autism ADHD which just diagnosed after 27 years CFS fnd fybromyalgia.the link are you hypermobile?
I'm so glad this video popped up in my feed
I was basically diagnosed with FND exactly the same time you were last year.
I was lucky enough to have only spent one night in the hospital but I have gone through just about everything you have in the last year except loosing my driver's license.
Unfortunately we do not have the help here that is needed so I'm pretty much winging this on my own and from what I discover on the internet.
I have suscry to your channel and will share with others I know going through the same thing as me .
Again thank you thank you
Do much clsrity now
I am so glad that you've shared your experience with FND. It was first suggested that I had it back in November last year after I had a full brain and spinal assessment done to check on severe pain in my lower spine from a very old horse riding injury. Having neurological symptoms such as chronic migraine in my adolescence years,along with a heart murmur was just the start of it all. I was officially diagnosed in March this year with FND by my headache Specialist I see to manage Hemiplegic migraine,with seizures. Then after having a freak accident in December last year where I had a head injury requiring CPR, more seizures occurred then and after that accident. I had an EEG performed this February which showed no abnormalities. I was seeing the Epilepsy team of a large hospital who officially gave me a diagnosis of Convulsive Functional seizures due to FND. I've had CPR done up to 4 times,mainly during a Hemiplegic migraine attack. I was also diagnosed in June this year with PFO Patent Foramen Ovale(Hole in the heart) by a Cardiologist and I am on the waiting list to see a Specialist for management and treatment of FND sometime next year. In a Nutshell that's been my life for these past 2 years,I've lost count on how many times I was misdiagnosed with other conditions and how long I have been in hospitals for. I am 52 yrs old and have support and walking aids,walkers and a wheelchair to help me with day to day activities,the daily tremors and monthly migraines are manageable but only with the constant support from my family and health care team.
Thank you for taking time to create videos. I know it must be exhausting. I was recently diagnosed by a neurologist, after over 35 years of searching for answers. Thankfully, no seizures but I get chronic fatigue, constant prickling and throbbing feeling all over, migraines, tinnitus, brain fog, imbalance, pain everywhere, dizziness, shortness of breath, anxiety, swelling at times, organ malfunctions, slurred speech at times, tremors at times. Every day is different. I react to the barometric pressure, medications, and certain scents. Some foods cause reactions, as well. So, treatment is taking propranolol for migraines and anxiety and cognitive behavioral therapy, physical therapy, and psychotherapy. I had to go part-time at work and semi-retire. I believe I’ve had this since I was a teen.
Ive had all your symptoms are yiu diagnosed cfs fybromyalgia to fnd is part of it all are you hypermobile? 27 years for me pain worst symptom
Do you no more migraine can cause all thise symptoms to chdck out dr silver UA-cam
@@katkohlerschwartz7386 did you check for mast cells activation, or histamine intolerance?
Thank you so much for sharing your journey 🫶 I'm two years on and it makes such a difference hearing how others are dealing with FND. Stronger together ⭐🫶
Good luck with the new physiotherapy. I was diagnosed in June 2020 - good days/bad days, but more good than bad for sure (I'm 62 and had to retire b/c of FND). I can do many of the things I've always done (I'm a very active person) but on a more limited basis. The hardest part is accepting your limitations. I got emotional hearing your story because you express it all so well. I'm glad to have found your channel. Thank you!
Thank you so much for sharing your journey so far Chris. I'm 62 years of age and my FND journey is just beginning. So much to take in.
You got this!
❤❤ take care pleased you have good multidisciplinary team sadly my area doesn't
Yes fnd is a challenge everyday im also my own advocate. I wish you well thanks for your videos keep on going
Thanks for your comment. I hope you're well. It's so important to keep on top of much as you can. No one else will lol
I have been subscribed since may because I have fnd as well and can relate
Thanks for subscribing. Hope youre well
I’ve had ME/CFS for 45 years. It’s now got so bad that I’ve been diagnosed with FND. This came on worse after major trauma - someone close to me on holiday in New York and shot in a drive by shooting. I’m working with a psychotherapist - at my own expense. I’ve taken myself off all meds including Co-codamol and I am improving.
Do you have much pain with it ? Muscle pain for me do you have hypomobility heds highly comorbid
@@elainerobertson1988 my Fnd was caused by traumatic Events, do you went on psyhoterapy? I couldnt function without meds
Yes I have a lot of pain. I am using a wheelchair for over 100 metres. I do have 2 blood disorders and am sure they are connected.
@@elainerobertson1988 i am glad you have a whelchair 🙏
I have been unwell for I year, and I gave up last July I went to bed woke up the next day and had really awful bug , I was ill for 3 days, and then my legs wouldn't work I knew something was wrong and I stopped eating and walking by Oct, and started eating and walking again endcof April, I have had nerve conduction study , it came back normal, but I'm currently in a nursing home I am doing my own exercises and physio, I get about 36 symptoms, I'm waiting for general neurology appointment, it's a 50 week wait , the symptoms are horrendous
Will you be going home its trye no helpn27 years cfs fybromyalgia elements of fnd
@Truerealism747 I have gone home in a way, its Still frightening, challenging, and sometimes I can't cope
A year's wait for a neurologist is criminal.
I don’t have much of any support. Hanging on by a thread. Thanks for sharing
Hi, so sorry to hear that you think you have little support. Do you have any family? Any professionals who can help?.
@@ChrisCFNDjourney yes a son but he’s out of state. I do get Botox. And have a neurologist at Cleveland clinic I live 2 hours south. Thanking you so much for your support your video gives me hope. I have a speech therapist at Cleveland who is encouraging the ultrasound it’s just hard because I depend on “caseworkers” through local mental health to arrange my rides but I’m not giving up again thank you so much
Currently 63. Symptoms for 24 years. Almost got used to the issues, ha ha. Can no longer walk, drive or ride my motorbike, having to use an electric wheelchair because my right side is almost useless. Having increasing speech and right eye problems. The feeling of frustration bordering on guilt for being unable to work for me was the hardest part of trying to cope. Unfortunately, due to the time it took to get a diagnosis (18 years) I've been told there is no treatment beyond my own coping stategies. The best one is make your brain giggle during an event (specially a drop attack). But the migraines are only occasional now (4 in a good year).
Thank you so much for sharing your Video of 1 yr in with us Chris💕What a terrible time you've had😢 I'm so happy for you that you have a good Support System and amazing Family 💞 💕from 🇨🇦
Thanks for your supportive comment and for following my journey. Hope you're well
Keep going mate great vid! I notice stress has a massive impact too so the key here is do things that make you calm relaxed let go of negative thoughts the mind is such a powerfull tool ❤
@@alexbrookes5355 unfortunaly when you have ocd you cant let go of the thoughts 🙏
@@stellaancimer8505it's highly linked to fnd I've had OCD from 3 ling before chronic migraines fybromyalgia fnd symptoms
I've only just been diagnosed. At the moment i have fatigue, dizzy, and body jerks. After a week in hospital i got 5 to 7 mins with the neuro. She seemed solid it was FND and all i got was a website... i am in the dark on what to do. Can anyone tell me how often symptoms change, get worse etc? Should i go back to my job of coding job. I find it stressful at times due to the brain fog i guess? Is it a good idea to go back will it make it worse?
Relate to everything you have shared Chris, it affects every area of our lives. You are doing such a brave thing in making these videos. Loneliness is abig thing in this condition.
Isolation and loneliness really is tough to accept after being very sociable years ago. However, you know who are your closest friends during times like these.
All the very best and make sure to reach up
Hi Chris. Just came across your videos. I was diagnosed with fnd March last year also. I have migraines and tics both motor and vocal although the vocal only appear when very excited or very anxious. Great to hear your journey and willingness to share. As you have said its hard mentally when friends try to understand but can't. Keep the updates going. All the best
Thank you for sharing 🥰🥰
You are so welcome, thanks for following my journey
Thank you
I feel for you man.
Am on Aimovig now, second day.
Migraines are debilitating. Thank you for sharing.
People don't understand when I just can't function or even have visitors.
Tough isn't it?! Seriously, I just wish people understood it a bit more. Because there's this persona based around FND from the past due to medical professionals saying that "it's all in your head" or "stop pretending"..... but I really think it's becoming more medically understood now and will be in the future.
I hope you're coping well at the moment??
Do you have it daily
Im strugging with the same issue its been about 4 years now I was able to go from paralysis and dystonia to walking in my home now. I still get flare ups and dont drive or walk outdoors much but every day is a new day. Stay strong
Did you test for the lyme?😊
@stellaancimer8505 Good lord I won't go down that rabbit hole again 😅. I was positive in the hospital but treated aggressively for years and spent over 50k. On alternatives. I did not get better at all only caused more issues with abx and other alternatives. There is no conspiracy after a standard course and time the majority of the infection is well undercontrol. If anything remains its post lyme syndrome and that diffrent. Best to follow Columbia lyme online for any updates.
@@Zero-Cool_ i am sorry to Hear that, how they treat you? I had chronic lyme, but i didnt take any antibiotic, Just some herbs and changing the diet..for chronic lyme antibiotic dont work..for what you spent so much money? It is alot, did you go on stem cell therapy? :)
@@stellaancimer8505 Hbot,Herbs,Ozone,Magnetic therapy and a few others I still take luracidin, oil of oregano and the occasional cat's claw, and Japanese knotweed. I was lucky enough to work closely with Buhner before his passing.
Thank you 👍
Hi Chris my diagnosis is almost a year too. Got some neuro things to go to and have been given a date for some FND physio which will be interesting… if you want any info let me know and I’ll share the things they do with me :) thanks for posting again.
No neuro psych apt as yet. 2 years wait in Sheffield and I’ve done around a year wait so far…
Thanks for your comment Sarah. I really hope that the physio works well for you. Keep us posted and reach out
Chris
Was your pain/is your pain anywhere .other than the migraines and chest) with your FND and if so, what helped you? Oh wow... the vision thing, the breathing thing, the trigeminal neuralgia, the muscle spasms, the chest squeezing thing,.. I have that on my entire rib cage and it is horrendous... it IS scary and I have had that too. It IS super scary. I was told I had vasovagal syncope or POTs but having read other folks stories I wonder if it is simply an FND thing... it is so hard to know. Amitryptiline caused me to have sinus tachycardia and when I changed that to a new med, it stopped, so if you are on that, perhaps mention that to your neuro. I really appreciate this channel. Thank you for making it. I am so sorry you have to experience this. I have FND too. And you're right.... there is literally no follow up and there should be - at least you have a neuro who is somewhat following up with you, that's a positive thing. I was simply left to my own devices and had to pay for a consult with a private neuro and this is quite common. As far as England goes, Brain and Mind, run privately by Mark Edwards who I have only heard good things about is meant to be excellent although as far as I am aware (from the reddit subforum fnd which is super helpful and supportive if you haven't been there) it isn't cheap, but someone on subreddit saved up for it and found it helpful. Also, what I have found helpful is Howard Schubiner's work. It's a website named Unlearn Your pain, but it covers multiple things, not just pain. He is also super nice and will respond to emails if you have questions and he has a free course, a book and a pay for course too... hopefully this may help you too, it has been very helpful to me although initially I was very sceptical! I hear you re the meds as well as how things get lumped under the FND umbrella - which can be quite problematic as it seems when you go to the emergency dept with a new symptom whatever it is they put it down to FND... I really feel for you, but be encouraged - people have gotten better from this, even though thus far mine has also progressed. I am hoping you and I fall into the category of ultimate recovery. Also, giving up work - I hear that.... I am so sorry you had to go through that. And yes, I was like you.... super fit, living a very positive and healthy life. I know you feel like a 70 year old.... so do I, but don't give up. You are not alone and I am so glad you have family support.
Thanks for your comment and support.
Yeah I definitely get pains and lots of numbness. I forgot to say that I use a cane now my gait is awful. I get wobbly days and my feet feel like they're burning.
The pains also shoot down my legs as well as cramps And dystonia.
I hope you're coping well and getting support as well.
Do you have hypomobility is your pain fybromyalgia fnd seams all same condition
Thx Chris -sorry your FND journey has been so debilitating and discouraging-I too have very similar issues that are flaring up for me too -they want to try Prozac to help calm the brain between comorbidities im hesitant cause it seems like the side effects will kinda make my symptoms worse not better anyways I appreciate you sharing your experience with us cause it is helpful to know there are others going through similar challenges and it’s nice to know what helped and what didn’t
Thx -hang in there -we’re routing for you to keep up the awareness as it is very real what you’re explaining and so many opposing opinions out there -positive thoughts are always welcome
Hey, thanks for your great comment. I appreciate that we're all different and each diagnosis is different for everyone. Everyone will have different symptoms and degrees of disability. But it's all coming to light now how common FND is becoming. It's such a shame. I hope you are well amd coping well? Chris
Prozac help me so much on high dose, unfortunaly i Got convulsions and i need to stop taken it..but it really helps with paralysis 😊
Do you have hypomobility? Pain is worst symptom daily@@stellaancimer8505
I take prozac. Really helps. Why not try?
@@msms4659 it helped me to, but then it gave me huge convulsions
My son might have this, but I think it is caused by mold exposure. We are trying 3 teaspoons a day of Prodrome Glia and Prodrome Neuro, which has cured people with Parkinson’s an ALS.
Also, L-tyrosine helps symptoms because it raises dopamine levels.
I loved walking and it's been taken away from me , I use a walking aid
Sorry to hear this. It's tough but we need to keep positive and fighting
Same, I loved walking 12 km every day; now I can barely walk one block using a stick and with someone accompanying me, and I'm just 36 years old
I haven't had much help with my illness, , I fight it every day
@julietyler7300 what kind of food you are eating?😊
So sorry to hear this. Keep reaching out and researching. So important.
Yes barometer affects me terribly
Definitely have noticed this. This triggered my migraines mainly.
❤
Hi there, have you tried TMS therapy?
I was just piano with FND
Is there a link to the face book group please? Thank you
facebook.com/share/mwT5nBTycSqmS1qF/
Hope to see you in the group
@@sarahdawson7985 I've just joined the group on Facebook waiting for admin to approve
I was diagnosed with FND due to a semi paralysed leg which began a few weeks after my 1st jibby jabby for covid. Could the jabs be causing this condition in some people.
I believe it could certainly have triggered FND for a lot of people as the spike protein gets into the nervous system and affects people differently.
Yes it does especially in autism adhd
I didn't get the jab but spent a lot of time with family members who did. And I had covid 2x.
Been sick since I got the booster. Headaches, weak, painful legs, fatigue. I'm terrified. I have no idea what is wrong with me.
I think people think that your putting it on , I have had to really concentrate to stay walking
This is the hardest part. It's so misunderstood. However I think its becoming more evident to specialists that there is something else going on and a new illness that they cannot see on current mri scans etc. I know there are trials for new scans going on atm.
I'm 63
What meds did they give you for FND?
Sertraline (low dose), pregabalin low dose, nortryptyline
I take tramadol, amitriptaline excuse spelling 😂 diazepam when really bad ive found it is a superdrug for leg pain even the day after my legs are like new again! unfortunately its not a long term drug because of addictive nature but arnt all drugs addictive if they work 😊 the amitriptaline seems to work with the insomnia! Im hoping i can cut out the tramadol soon slowly slowly ive found one of the best treatments is massage works wonders also i see a chiroprator thats also really good ❤
@@ChrisCFNDjourneyhi mate i tried gabbapentin tbh it made me worse swelling in legs mad fatigue i was like a zombie 😂
@@alexbrookes5355 yeah? I have weaned down to 75mg a day. Now just been prescribed baclofen for muscle spasms
@@ChrisCFNDjourney what tests you had chriss? Im waiting on a another brain mri had one 2 year ago nothing seen but neuro recently found issues with pupil and dialation light test? So booked in again.. Im also having a emg and nerve conduction study for the twiching drives me nuts!!! is it the same road you have gone regards tests?
Have you seen the psychologist?
Yes I have and am having another 12 weeks . Neuro is still testing for other conditions
@@ChrisCFNDjourneyarnt all your tests clear?
Do you think fnd is related to ither illness ms Parkinson's.or mimicking it symptoms do you mean
FND definitely mimics other neurological illnesses which is scary. The number of times I thought to myself that I had ms or parkinsons
@@ChrisCFNDjourneyyes scary pain upper body my worst symptom daily do you get much of this and do you have hypomobility it's highly linked to fnd
Do you have lesions in your brain? I do..I also have tons of symptoms, physical and bad neurological, tired 24/7 I did horrible on a cognitive test..On my mri it states chronic small vessel disease of the brain, with brain atrophy. So confused when the nero spyc diagnosed me with this fnd.
Thats pots
I think I may have lots on top of FND. The Neuro is on top of it all and having more tests. Thanks for your comment
@@ChrisCFNDjourney yes I have fybromyalgia CFS part of it to but underlying thing what causes it is autism ADHD which just diagnosed after 27 years CFS fnd fybromyalgia.the link are you hypermobile?
Pathways in your brain get confused I have awful shaking inside myself it's very hard, a battle
@@julietyler7300ive had rhat symptom do you get pain