Been dealing with BFS all over my body for almost a year. Got all the tests through my neurologist and they said i didn’t have anything but bfs driven by anxiety. Still sometimes I worry because it won’t stop. It hits me in waves and I have good and bad days but I just wanted to say thank you for your page it comforts me and helps me refocus. Happy to hear you are doing well!
Hey man, I started watching your videos when I experienced BFS symptoms myself. It hasn't been easy, but i am better than I was before. And yes i don't experience twitching like I used to it. I barely notice them even if they happen sometimes. Cheers to healing.
To anyone who's feeling anxious, I suggest you to take your time off google and the topic itself. Start focusing in life, and engage in physical activities like exercises, reduce caffeine and alcohol intake. I myself stopped twitching just 2-3 years after it started, 5 years later now I barely have any.
@@cosmichorror5646Absolutely, I’m always telling people to get out and stay active, do things they love. It really helps! Keep spreading the positive vibes!
Hey man, finally a new video, thank you so much for this. This is really helpful for people suffering this condition. Hope you continue the updates from time to time. God bless!
Thanks, I hope you’re doing well! I’ll try to make more content to keep the community updated. If you have questions, pop it in the comments and I’ll reply.
I have bfs for 1 year now. I thank you because your videos helped me with my anxiety in the beginning. Now I’m so relaxed and just accepting the twitching
I’m so pleased to hear you’re more relaxed and no anxiety about twitching. In time, I hope they stop or even if you can learn to filter them out to become background noise it’s a great result. Keep having fun!
great to hear you are ok,i think the fb group literally saved my life,now after 1 year my anxiety from twitching it's totally gone and in fact also twitching is way way less than when it started,thank you.
I’m so pleased to hear about your positive feedback, it’s great to know the group helped you so much. Amazing news the twitching is also considerably reduced.
Thank you!!! I was just diagnosed with BFS a couple days ago. I’ve had twitching for about nine months now. After a strenuous hike the twitching went insane for a week, got somewhat better but the twitching is worse now than before the hike. A good friend of mine passed a year ago today from ALS, so I have been really spinning out with everything you have talked about in your videos. Just watching them this morning has helped me a lot. They gave me reassurance that my doctor couldn’t or didn’t. My doctor didn’t give me anything other than it’s BFS, I’m confident that it’s not ALS,MS or Parkinson’s you’ll be fine. Which helped but didn’t help at the same time. Anyway I didn’t want to make this too long but already have. So thank you so much for sharing your experience in detail; it has helped mentally watching and listening.
Hello,can you tell please,where you have those fasciculations,how it started,other details?I have twitches too,and near 6 month now,so want to know other people experience.P.S. sorry for grammar mistakes,i'm from Ukraine,so don't know english perfectly😅
@@ЯрославРоманюк-ю9тhi. I had Covid for the second time September 2023, that is when constant twitching started. I think every day, but only a few twitches here and there. The twitching were mostly in my legs. Sometimes in an arm and in my face. In May went on a hike and got really dehydrated, and the twitching was all over my body. In my hands, feet, neck, tongue, everywhere. It was hard to sleep and it made my anxiety really bad. That lasted about a week, and then calmed down a bit. It has gotten less and less over the last three months. But I still twitch. I started taking electrolytes everyday and some other supplements I think have helped. And trying to keep my anxiety under control, which can be hard with all the twitching and my mind racing. My neurologist ran some test on me and ruled out anything other that BFS. This guys videos really helped me with my anxiety though. Almost instantly because he was describing my symptoms exactly.
@@TheVelvamilesthank you for answer.And yes,anxiety is big problem,when you googling especially those symptom.But that can help to understand that many of problems we have before are not so big as we thinked
Definitely reassuring video. Had this for 10 years now. Neuro thinks anxiety and "hyperawareness" ..how can you not be aware when your twitches are literally everywhere. Ive not been anxious for 10 years but think triggered by a lot of anxiety. Ive tried EVERYTHING to stop twitching. Nothing works for me, other than distraction for a while..then..bam..here it is again..its always there whatever I do. Not even sure why Im writing this..reassurance I guess...
Thanks for your Video Paul! Came across your initial videos after going through work ups with GP and neuro. 4 neuro appts, 1 EMG, MRI and CK bloods x 2, they found no clear signs of MND etc… Learned to l live them now after 18 months, but every now and again I question it when I have flare ups. Nuero wants me back for another review but still no sign of any other symptoms so maybe I’m wasting my money there. Really appreciate the recap, as it just reinforces and supports a positive outlook. I have also found the Facebook group extremely helpful, knowing there are many of us that have been frozen by fear and it’s clearly a benign condition for many. Cheers
You’re going great, just remember that BFS can always play on your mind but keep the rational mindset. If you’re feeling good take that as a positive sign.
It’s been a while! This just came up as a recommended video and it’s taken me back! I started experiencing BFS symptoms in 2019, so nearly 5 years ago. Needless to say I’m still alive 😂 and actually better than just alive, I’m living a happy and fulfilling life! This video has just reminded me of the horrific anxiety I experienced when this all started and made me realise just how different life is now. I remember watching your videos seeking reassurance, and during those dark days they did just that! So thanks very much, you don’t have to do this so it’s really commendable that you do! FYI….Do I still have symptoms? Absolutely! Do I care? Not one bit! I just view this as an annoying quirk in my physiology now and am living life like I did before it all started, maybe even happier because I appreciate it all more now!
21 months in to both calves twitching now...appears and disappears all over my body...it's either intense background anxiety or an L5S1 nerve pinch in my lower back. Thank you for this channel
Yes the L5 S1 is also something that I have issues with and I also have constant valves twitching. I should say I rarely feel it now as it’s background noise but if I stop and look for it, I feel it and see it.
@bfsanxietysupport Thanks for the reply. Had to break from PT but going back, and considering acupuncture...almost 22 months in now...is worse on rainy days....mental health counseling helps ignore it/fade into the background
Hi Paul 👋🏻 such a great video! Thank you for the shoutout, the one positive thing I gained from BFS is gaining friends. You and Leanne are 2 of the best people I know and I am truly thankful to be able to call you my friends ❤ no one is more helpful, calm and patient with people in the group than you are. Blessed to have you 🙌🏻 truly thankful for all your support across the years ❤
It’s the same for me, I met you and Leanne and so many other great people! But the shout out had to be done, people need to know how helpful and supportive you guys have been to the community ❤️ Thanks for the kind words 😊
I've had BFS for 9 years. Im 24 now, so for me, it started very young. I just want anyone who reads this after first discovering their fasiculations that it does get better. I can be a very anxious person, so my twitches are still very much present. I also get a heap load of other symptoms such as tingles, numbness, burning sensations, and restless leg syndrome. Looking up these symptoms will only make things worse. Anxiety is your worst enemy with BFS. You can convince yourself that what you have is debilitating, but I promise you're fine. Keep living life. Your twitches are just a little quirk of yours.
Hi Paul, im so glad i came across your channel, ive been a bad mindset for months thinking o was alone so tha k you. If you could tell me if your have had numbness or tingling in your feet every now and again
Hey I’m glad you found the channel. Yes Tingling and numbness have been experienced by many with BFS. There’s quite a wide spectrum within BFS ranging from minor twitching to many symptoms. I’ve had many symptoms but they eventually faded and became background noise. Wishing you well on making this background noise.
Thanks Paul - good to see another fellow NI experience of BFS - finally 4 years and 10 months into my BFS journey definitely feeling more optimistic about it - it’ll always be here but seeing others that get on with it, helps! In terms of the running, did you stop due to the BFS, as I know it stiffens muscles which I have struggled with as it’s caused many a calf injury for me
Hey welcome, I’ve talked with quite a few from NI and Ireland in general. I stopped running as I got so busy with work and other commitments, nothing to do with BFS. Keep it up though, runnings so good!
Hi Paul, thank you for this. YES! Please start a podcast or other interactive group. I'm a podcaster myself and would love to listen in / interact / help out in any way I can. I was recently diagnosed with BFS, and it's been a terrifying roller-coaster of anxiety. After a 'normal' neurological exam, the doctors there said I've most likely just got BFS. Of course, they mentioned "the other disease" they were ruling out. And as you can imagine, I've spent the week since my appointment 'looking' for other symptoms. With the heightened anxiety (It's all so "chicken-or-the-egg," am I right?), I find myself overanalyzing the "symptom," which is very likely just a result of the anxiety.
Apart from twitching, esp.in my calves, I just can't fall asleep because I get woken up by my body's involuntary movements😢 I know it's something everyone experience but...in my case...they always wake me up, it's imposible for me to fall asleep. Does anyone experience something like this? Thanks❤
+@EmA-gb9cv involuntary limb movements is something I’ve seen mentioned among the BFS community. Anyone can jerk suddenly in rare enough isolations but if this is a regular thing, follow up for more answers with your doctor. It could be something that’s easily addressed, so please don’t panic or worry.
Yes brother I noticed for six months constantly. I couldn't able to sleep at night. It awaken me while i was trying to sleep. It bothers me. It's been two years now. I am feeling much better now. 90 percent relief from last one and half year. But since a week now I am disturbed now because of muscle twitches and heaviness in brain.
Thank you for your videos. These past two months have bee an nightmare. Out of no where i started getting spasms pluse twitching all over. I went to the dr where they ran blood test along with an MRI. They came out clean. At this point of course I jumped to the worst but i still have to go to the neurologist. My dr believes its BFS i trust them but i cant get the worst out my head. Since starting anxiety meds the twitching calmed down. I still get it in my my legs and my hot spot seemd to be my right hand .
In my both feet twitching happen constant when i take 30 minute rest without moving my feet twitching gone and when i walk twitching again start 😢 and tingling also happen what the reason and i am afraid from als. my age 19
Always see a doctor for advice on how you feel as there could be other simple reasons behind symptoms. Please do not fear worst case scenarios for each symptom, that’s the health anxiety talking. Many people twitch in feet and legs non stop.
Hello, how are you now, I’ve been watching your videos. My twitching started last year with my eyelid twitching, it stay for quite a while, even now I still have it , then my rear delt started to twitch then now my elbow started to twitch too when I hold my phone bending it or when I place my elbow on a table, sometimes to the extend that it will cause moving of my thumb, I’m so scared and worry, I do went to a neuro and they check me clinically and told me I do not have weakness. Everyday I’m worried and scared, you know what I’m afraid of. Thank you for the video and I do hope you can post more or even have any programs to tackle anxiety just like what you said anxiety can be a cause to it
I am from India and I had this muscle twitches since two years. It first happened on me on 12th March 2022 after two months of covid vaccine. I googled my symptoms and I thought i had read about ALS, MS. I cried whole night. I visited doctor next day with my father. The doctor said it's anxiety but I know that don't know the real cause of this disease. Twitching haapens when I was sleeping also. It bothererd me for six months. It was severe. My head pulsate and muscle twitches all over body. I could not able to sleep at night. Then after my symptoms improve and I noticed 90 percent of relief. But now since a week it bothers me again and I feel heaviness in my brain. Its not headache not pain, but something they i can't explain. It bothers me and distract me. I am taking B12 capsules now a days.
I am 57m. I am 37 months into twitching. It just continues to get more widespread and intense. No let up at all. Its hard to keep thinking that this is benign. I do realize over three years with no clinical weakness is good, I do have lots of muscle dents. I thank you for these reassuring videos and keeping us all sane. Can I ask how many twitches you estimate per day? Are they all over? Mine is head to toe. I am in the 1,000s per day.
I'd love to participate in a conversation for the viewers. I've had BFS for 1.5 yrs now. Been through lots, and now am feeling so much better (yes, still twitching) but I think my input could help. I am also a dietetics technician, so can give some input on nutritional info. 😊
So glad your feeling much better! Thanks for watching to the end and hear my ideas.. I’m putting you on the list if I go forward with the podcast. Thank you.
Twitching every single day for two years already. Starting after months of stress. It felt like it was starting to go away but I had a bad two weeks with a sick pet and then Twitching has gone through the roof again. I've had a hot spot on My left tricep for almost two weeks. First time I've had one last this long in one spot. I lost my fear of Twitching a long time ago so I'm not worried, it's just super annoying.
I’m 17 and I started twitching January of this year, it started with small twitching in my calf’s then thighs and then just everywhere. My eyelids, hands,toes, chin, even more recently my inner ear 😭 it drives me CRAZY I still don’t know why this is happening I think it might be BFS since it’s been happening for almost 6 months now… nonstop everyday I actually got open heart surgery April 16 and I thought my twitching went away but it came back the next day 😭 this twitching is driving me crazy I’ve been trying everything to make it go away but nothing as been working… have you been taking medication for your twitching? (before I knew about my heart condition I had super bad anxiety attacks because of my palpitations and high heart rate and not knowing why it was happening (I had a hole in my heart lol) and that’s when I noticed my twitching starting so I think it was triggered by my anxiety with my heart..)
Can we have twitching in 2 muscle at a same time means in eyelid and any other muscle random like thigh thumb ete and not any other symptoms plz reply I'm in so stress
Je suis francais donc difficile de tout comptendre .. Jai des fasiculation sur tout le corps , énormément au pied , au mollets et dans les cuisses ... Quel que fois dans les mains et les bras .. Cela fais maintenant 2 ans et jen ai encore plus qu'avant ... As tu un conseil a me donner ? Jai fais un emg il y a 1 ans il etait normal ... Bien a vous . Jonathan
Fellow NI guy here - got BFS symptoms in August 2020. Tested for ALS etc (negative- phew!) and it just got worse and worse. Finally my doctor prescribed Tegretol, an epilepsy treatment, and i take one tablet at night. The tablet greatly reduces severity as the twitches had become quite violent / mildly painful and disturbed my sleep. Mostly sleeping all night now and this has greatly helped my coping ability. My neurologist was worried about "medicalising" this condition, but i was needing some kind of intervention and this was the first treatment / therapy which made a difference.
@cathyparkinson3170 I still have twitches, they don't seem to want to go away. But the severity is reduced, I don't get the awful cramping which was hard to handle, and my sleep pattern was better. So it doesn't fix it, but eases some of the symptoms.
Not particularly though if I have a hotspot that’s going for days, weeks or months they feel kind of crampy on the exact spot.. like an ache. It’s totally normal due to constantly twitching.
As it’s benign, there’s not much urgency as far as I am aware. Look for triggers and things that help you. Try to reduce your thinking about it and it should help.
I need severe help i see my life ending and i am really suicidal what happens is that after a period of severe fearr i had twitches all over my body that i cannot sleep and even if i sleep it would n non restful due to anxiety i think my brain is bioling i also suffer ocd that tells me that these fassiculations will never go they will only decrease and you will never be able to spleep i am in hell really need help
Hey I can't empathize with the OCD or the suicidal thoughts. I'm very sorry you've been struggling with those. I cannot help with those. The only bit of wisdom I can offer for you is that anxiety and these twitches are only as debilitating as you allow. I've had twitches for 9 years. I am okay. Most of the time I do not notice them at all. When I do notice them, it's usually due to anxiety. The sleep thing is rough. I know exactly what you're talking about. You can't sleep due to the twitches, then you focus on the twitches begging for them to go away, then you get anxious because you can't sleep, and your twitches get worse. Cycle continues. I don't have any advice that I can apply to your life in particular. All I can say is that this is mostly a non issue for me now and I hope that brings you comfort. It still happens every few months or so, but that is more due to anxiety because anxiety interrupts sleep and causes twitches. What I do during these times now is remind myself that the only 2 things I know that I have are BFS and anxiety. Neither will kill me tonight. BFS will never kill me. Annoying? Sure. Won't kill me though. Distract yourself, move your legs around while you're trying to sleep so you don't feel it so much and watch something entertaining and engaging until you fall asleep without realizing it. You will be okay. I really so hope the best for you and everything you're going through.
I would caution against bringing up somatic symptom disorder to your doctor if you have fasciculations or any symptoms at all. Don't bring up health anxiety, conversion disorder, hypochondriasis... They are a scarlet letter among doctors. Having one of these in your medical chart may make proper diagnosis and treatment impossible. I'd go to a good (private) clinical psychologist specializing in these disorders to talk about the mental stuff. Fasciculations have many different causes and treatments can work! Botox helped me most!
@bfsanxietysupport hello, thank you for your videos. I often watch them when I am struggling and feeling low. They help me refocus when attempting to be more positive. I’d really appreciate it if you could answer me one question please. Do your calves still twitch constantly? Both my calves and arches of my feet twitch every second of every day 24/7. All other twitches are random and sporadic with occasional hotspots. I’ve been to a neurologist and had all the usual tests and been diagnosed with BFS. I remember you saying in one of your videos that your calves always twitch but I just wondered if they still do and if so if you meant literally every single second or just occasionally. Thank you!
How do you know it's BFS? I have experienced various twitching over the years (at least 7-8 years maybe more) on various places of body, had 3 EMGs (last one was 8 months ago), and multiple tests and neuro and other exams. And I am still scared AF when they appear. Because they are always different! They are always on different part of body, face, leg, arm, shoulder... they are sometimes just constant little flickers, sometimes aggressive hard kicks under skin, sometimes, they are very localized to spot, sometimes spread in one or more areas, sometimes they last a day, sometimes weeks, sometimes months, sometimes they are constant or just at rest... I don't know how to live with this thing anymore! It's like constantly being in fear "what if this time it's not benign?". I know this is irrational thinking but why do I have this thing? These twitches? It can't be normal.
Ja, nach der ersten Impfung 2021. Zwei Monate danach fing es in beiden Fußinnenseiten an bis heute. Dieses Jahr im Juli kam die Zunge dazu, ein bis zweimal am Tag für ein paar Sekunden immer auf der selben Stelle.
I developed a twitch in my upper right chest/pec area in June of 2024. I didn’t think much of it but I figured it best to see my doctor. Doctor said to take magnesium and b12. I followed doctor’s orders and all was fine until August 12 when my left tricep started going insane. The twitch moved from my tricep to my back under my shoulder blade. It hasn’t gone away since. It’s been twitching everyday. I AM LOSING MY MIND. I can find no peace. I have struggled with anxiety since my 20’s. I am almost 42. I have a strange sensation at my left pinky toe. I wouldn’t call it numbness but it’s just feels strange. I am hyper aware of it along with my twitches. I have an MRI scheduled for September 4th. My doctor referred me for an EMG. Both at my request for mental health. My EMG has yet to be scheduled. I am struggling to find resources for mental health help. I doubt it would work anyway. I keep waking up in fear at 1:30am. I am certain that I have ALS. My wife has been great. I am so scared that my time will be cut short with my wife and 9 year old son. I love them so much.
I can relate to "losing your mind." Mine started in my chest, crept into my face, then jumped to every part of my body overnight. Strange sensation in my left quad that caused me to limp... I am 8 years into BFS and am far from dead. I still have debilitating symptoms at times but I got used to the constant twitching until I noticed they faded to infrequency. Your tests will come back clean and you will be okay.
Mine started in May in my lip- shifted to my tongue from July- Sept. now it’s in my calves, abs and feet. My doctor said I’m fine. Neurologist did strength tests, said no need for more testing if no weakness. It’s been 7 months. I have no weakness and actually at age 51, I’ve re-dedicated myself to the gym to prove to myself I’m not losing strength. It’s still so stressful and scary bec of Dr Google.
Been dealing with BFS all over my body for almost a year. Got all the tests through my neurologist and they said i didn’t have anything but bfs driven by anxiety. Still sometimes I worry because it won’t stop. It hits me in waves and I have good and bad days but I just wanted to say thank you for your page it comforts me and helps me refocus. Happy to hear you are doing well!
Hey man, I started watching your videos when I experienced BFS symptoms myself. It hasn't been easy, but i am better than I was before. And yes i don't experience twitching like I used to it. I barely notice them even if they happen sometimes. Cheers to healing.
To anyone who's feeling anxious, I suggest you to take your time off google and the topic itself. Start focusing in life, and engage in physical activities like exercises, reduce caffeine and alcohol intake. I myself stopped twitching just 2-3 years after it started, 5 years later now I barely have any.
nice,where you calf+random minor pops everywhere twitcher or standard body wide twitching?@@cosmichorror5646
Hey love your story, thanks for sharing the positive vibes.
Excellent news that you’re so much better and the twitching has greatly reduced.
@@cosmichorror5646Absolutely, I’m always telling people to get out and stay active, do things they love. It really helps! Keep spreading the positive vibes!
@cosmichorror5646 how are you doing now? One therapist told me to ignore it for 6 weeks and see what happens and I haven't managed to do that
Hey man, finally a new video, thank you so much for this. This is really helpful for people suffering this condition. Hope you continue the updates from time to time. God bless!
Thanks, I hope you’re doing well! I’ll try to make more content to keep the community updated. If you have questions, pop it in the comments and I’ll reply.
I have bfs for 1 year now. I thank you because your videos helped me with my anxiety in the beginning. Now I’m so relaxed and just accepting the twitching
I’m so pleased to hear you’re more relaxed and no anxiety about twitching. In time, I hope they stop or even if you can learn to filter them out to become background noise it’s a great result. Keep having fun!
great to hear you are ok,i think the fb group literally saved my life,now after 1 year my anxiety from twitching it's totally gone and in fact also twitching is way way less than when it started,thank you.
Is your twitching constant or transient
I’m so pleased to hear about your positive feedback, it’s great to know the group helped you so much.
Amazing news the twitching is also considerably reduced.
Thank you!!! I was just diagnosed with BFS a couple days ago. I’ve had twitching for about nine months now. After a strenuous hike the twitching went insane for a week, got somewhat better but the twitching is worse now than before the hike. A good friend of mine passed a year ago today from ALS, so I have been really spinning out with everything you have talked about in your videos. Just watching them this morning has helped me a lot. They gave me reassurance that my doctor couldn’t or didn’t. My doctor didn’t give me anything other than it’s BFS, I’m confident that it’s not ALS,MS or Parkinson’s you’ll be fine. Which helped but didn’t help at the same time. Anyway I didn’t want to make this too long but already have. So thank you so much for sharing your experience in detail; it has helped mentally watching and listening.
Hello,can you tell please,where you have those fasciculations,how it started,other details?I have twitches too,and near 6 month now,so want to know other people experience.P.S. sorry for grammar mistakes,i'm from Ukraine,so don't know english perfectly😅
@@ЯрославРоманюк-ю9тhi. I had Covid for the second time September 2023, that is when constant twitching started. I think every day, but only a few twitches here and there. The twitching were mostly in my legs. Sometimes in an arm and in my face. In May went on a hike and got really dehydrated, and the twitching was all over my body. In my hands, feet, neck, tongue, everywhere. It was hard to sleep and it made my anxiety really bad. That lasted about a week, and then calmed down a bit. It has gotten less and less over the last three months. But I still twitch. I started taking electrolytes everyday and some other supplements I think have helped. And trying to keep my anxiety under control, which can be hard with all the twitching and my mind racing. My neurologist ran some test on me and ruled out anything other that BFS. This guys videos really helped me with my anxiety though. Almost instantly because he was describing my symptoms exactly.
@@TheVelvamilesthank you for answer.And yes,anxiety is big problem,when you googling especially those symptom.But that can help to understand that many of problems we have before are not so big as we thinked
@@TheVelvamiles are you had sometimes feeling like buzzing/vibrations or similar?
@@ЯрославРоманюк-ю9тnot really. But sometimes it feels like there’s a bug on me or a stray hair. The anxiety is the worst part about it.
Definitely reassuring video. Had this for 10 years now. Neuro thinks anxiety and "hyperawareness" ..how can you not be aware when your twitches are literally everywhere. Ive not been anxious for 10 years but think triggered by a lot of anxiety. Ive tried EVERYTHING to stop twitching. Nothing works for me, other than distraction for a while..then..bam..here it is again..its always there whatever I do. Not even sure why Im writing this..reassurance I guess...
Thanks for your Video Paul!
Came across your initial videos after going through work ups with GP and neuro. 4 neuro appts, 1 EMG, MRI and CK bloods x 2, they found no clear signs of MND etc…
Learned to l live them now after 18 months, but every now and again I question it when I have flare ups. Nuero wants me back for another review but still no sign of any other symptoms so maybe I’m wasting my money there.
Really appreciate the recap, as it just reinforces and supports a positive outlook.
I have also found the Facebook group extremely helpful, knowing there are many of us that have been frozen by fear and it’s clearly a benign condition for many.
Cheers
You’re going great, just remember that BFS can always play on your mind but keep the rational mindset. If you’re feeling good take that as a positive sign.
It’s been a while! This just came up as a recommended video and it’s taken me back!
I started experiencing BFS symptoms in 2019, so nearly 5 years ago. Needless to say I’m still alive 😂 and actually better than just alive, I’m living a happy and fulfilling life! This video has just reminded me of the horrific anxiety I experienced when this all started and made me realise just how different life is now. I remember watching your videos seeking reassurance, and during those dark days they did just that! So thanks very much, you don’t have to do this so it’s really commendable that you do!
FYI….Do I still have symptoms? Absolutely! Do I care? Not one bit! I just view this as an annoying quirk in my physiology now and am living life like I did before it all started, maybe even happier because I appreciate it all more now!
So viral infections like the flu or colds increase your BFS twitching?
21 months in to both calves twitching now...appears and disappears all over my body...it's either intense background anxiety or an L5S1 nerve pinch in my lower back. Thank you for this channel
Yes the L5 S1 is also something that I have issues with and I also have constant valves twitching. I should say I rarely feel it now as it’s background noise but if I stop and look for it, I feel it and see it.
@bfsanxietysupport Thanks for the reply. Had to break from PT but going back, and considering acupuncture...almost 22 months in now...is worse on rainy days....mental health counseling helps ignore it/fade into the background
Hi Paul 👋🏻 such a great video! Thank you for the shoutout, the one positive thing I gained from BFS is gaining friends. You and Leanne are 2 of the best people I know and I am truly thankful to be able to call you my friends ❤ no one is more helpful, calm and patient with people in the group than you are. Blessed to have you 🙌🏻 truly thankful for all your support across the years ❤
It’s the same for me, I met you and Leanne and so many other great people! But the shout out had to be done, people need to know how helpful and supportive you guys have been to the community ❤️
Thanks for the kind words 😊
@@bfsanxietysupport 🥰❤️
I have been diagnosed BFS since 3 years ago.
i am 56 years old.
I have less and less anxiety about it now :)
Great news the anxiety is reduced. I hope the twitching reduces too and you can filter it out.
@@bfsanxietysupport
Twitching and myoclonies are still here.
In fact, if they wouldn’t be here anymore, I would miss them 😉
How are you doing now any improvement?
I've had BFS for 9 years. Im 24 now, so for me, it started very young. I just want anyone who reads this after first discovering their fasiculations that it does get better. I can be a very anxious person, so my twitches are still very much present. I also get a heap load of other symptoms such as tingles, numbness, burning sensations, and restless leg syndrome. Looking up these symptoms will only make things worse. Anxiety is your worst enemy with BFS. You can convince yourself that what you have is debilitating, but I promise you're fine. Keep living life. Your twitches are just a little quirk of yours.
Thank you very much! I'm so happy that you're well :) GOOD JOB!
Thank you, take care.
Hi Paul, im so glad i came across your channel, ive been a bad mindset for months thinking o was alone so tha k you.
If you could tell me if your have had numbness or tingling in your feet every now and again
Hey I’m glad you found the channel. Yes Tingling and numbness have been experienced by many with BFS. There’s quite a wide spectrum within BFS ranging from minor twitching to many symptoms. I’ve had many symptoms but they eventually faded and became background noise. Wishing you well on making this background noise.
Thanks Paul - good to see another fellow NI experience of BFS - finally 4 years and 10 months into my BFS journey definitely feeling more optimistic about it - it’ll always be here but seeing others that get on with it, helps! In terms of the running, did you stop due to the BFS, as I know it stiffens muscles which I have struggled with as it’s caused many a calf injury for me
Hey welcome, I’ve talked with quite a few from NI and Ireland in general. I stopped running as I got so busy with work and other commitments, nothing to do with BFS. Keep it up though, runnings so good!
Can this go away? Or is it something we are stuck with. Thanks
Hi Paul, thank you for this. YES! Please start a podcast or other interactive group. I'm a podcaster myself and would love to listen in / interact / help out in any way I can. I was recently diagnosed with BFS, and it's been a terrifying roller-coaster of anxiety. After a 'normal' neurological exam, the doctors there said I've most likely just got BFS. Of course, they mentioned "the other disease" they were ruling out. And as you can imagine, I've spent the week since my appointment 'looking' for other symptoms. With the heightened anxiety (It's all so "chicken-or-the-egg," am I right?), I find myself overanalyzing the "symptom," which is very likely just a result of the anxiety.
Apart from twitching, esp.in my calves, I just can't fall asleep because I get woken up by my body's involuntary movements😢 I know it's something everyone experience but...in my case...they always wake me up, it's imposible for me to fall asleep. Does anyone experience something like this? Thanks❤
+@EmA-gb9cv involuntary limb movements is something I’ve seen mentioned among the BFS community. Anyone can jerk suddenly in rare enough isolations but if this is a regular thing, follow up for more answers with your doctor. It could be something that’s easily addressed, so please don’t panic or worry.
@@bfsanxietysupport thank you for your answer, yes, I'm waiting for an appointment with a neurologist but I'm scared to death to be honest ...
Yes brother I noticed for six months constantly. I couldn't able to sleep at night. It awaken me while i was trying to sleep. It bothers me. It's been two years now. I am feeling much better now. 90 percent relief from last one and half year. But since a week now I am disturbed now because of muscle twitches and heaviness in brain.
Thank you for your videos. These past two months have bee an nightmare. Out of no where i started getting spasms pluse twitching all over. I went to the dr where they ran blood test along with an MRI. They came out clean. At this point of course I jumped to the worst but i still have to go to the neurologist. My dr believes its BFS i trust them but i cant get the worst out my head. Since starting anxiety meds the twitching calmed down. I still get it in my my legs and my hot spot seemd to be my right hand .
In my both feet twitching happen constant when i take 30 minute rest without moving my feet twitching gone and when i walk twitching again start 😢 and tingling also happen what the reason and i am afraid from als. my age 19
You're fine. Happens to me too. Ive had all the tests. All good.
Always see a doctor for advice on how you feel as there could be other simple reasons behind symptoms. Please do not fear worst case scenarios for each symptom, that’s the health anxiety talking.
Many people twitch in feet and legs non stop.
@@Progressivelyyou which body parts is your twitching and is your twitching constant or random
Hello, how are you now, I’ve been watching your videos. My twitching started last year with my eyelid twitching, it stay for quite a while, even now I still have it , then my rear delt started to twitch then now my elbow started to twitch too when I hold my phone bending it or when I place my elbow on a table, sometimes to the extend that it will cause moving of my thumb, I’m so scared and worry, I do went to a neuro and they check me clinically and told me I do not have weakness. Everyday I’m worried and scared, you know what I’m afraid of. Thank you for the video and I do hope you can post more or even have any programs to tackle anxiety just like what you said anxiety can be a cause to it
Thanks for the videos, Paul
Thank you so much!
You're welcome! Thanks for watching.
Do muscles fatigue quicker (exercise and walking) with this condition?
I am from India and I had this muscle twitches since two years. It first happened on me on 12th March 2022 after two months of covid vaccine. I googled my symptoms and I thought i had read about ALS, MS. I cried whole night. I visited doctor next day with my father. The doctor said it's anxiety but I know that don't know the real cause of this disease. Twitching haapens when I was sleeping also. It bothererd me for six months. It was severe. My head pulsate and muscle twitches all over body. I could not able to sleep at night. Then after my symptoms improve and I noticed 90 percent of relief. But now since a week it bothers me again and I feel heaviness in my brain. Its not headache not pain, but something they i can't explain. It bothers me and distract me. I am taking B12 capsules now a days.
I am 57m. I am 37 months into twitching. It just continues to get more widespread and intense. No let up at all. Its hard to keep thinking that this is benign. I do realize over three years with no clinical weakness is good, I do have lots of muscle dents. I thank you for these reassuring videos and keeping us all sane. Can I ask how many twitches you estimate per day? Are they all over? Mine is head to toe. I am in the 1,000s per day.
Hello,are you have twiches in both calfs 24/7,i mean small twiches that you find when watch into calfs with special light angle?
I'd love to participate in a conversation for the viewers.
I've had BFS for 1.5 yrs now.
Been through lots, and now am feeling so much better (yes, still twitching) but I think my input could help.
I am also a dietetics technician, so can give some input on nutritional info. 😊
So glad your feeling much better! Thanks for watching to the end and hear my ideas.. I’m putting you on the list if I go forward with the podcast. Thank you.
Twitching every single day for two years already. Starting after months of stress. It felt like it was starting to go away but I had a bad two weeks with a sick pet and then Twitching has gone through the roof again. I've had a hot spot on My left tricep for almost two weeks. First time I've had one last this long in one spot. I lost my fear of Twitching a long time ago so I'm not worried, it's just super annoying.
I’m 17 and I started twitching January of this year, it started with small twitching in my calf’s then thighs and then just everywhere. My eyelids, hands,toes, chin, even more recently my inner ear 😭 it drives me CRAZY I still don’t know why this is happening I think it might be BFS since it’s been happening for almost 6 months now… nonstop everyday I actually got open heart surgery April 16 and I thought my twitching went away but it came back the next day 😭 this twitching is driving me crazy I’ve been trying everything to make it go away but nothing as been working… have you been taking medication for your twitching?
(before I knew about my heart condition I had super bad anxiety attacks because of my palpitations and high heart rate and not knowing why it was happening (I had a hole in my heart lol) and that’s when I noticed my twitching starting so I think it was triggered by my anxiety with my heart..)
I have been dealing with fasciculations (especially on my calves) for at least seven years.
Can we have twitching in 2 muscle at a same time means in eyelid and any other muscle random like thigh thumb ete and not any other symptoms plz reply I'm in so stress
Je suis francais donc difficile de tout comptendre ..
Jai des fasiculation sur tout le corps , énormément au pied , au mollets et dans les cuisses ...
Quel que fois dans les mains et les bras ..
Cela fais maintenant 2 ans et jen ai encore plus qu'avant ...
As tu un conseil a me donner ?
Jai fais un emg il y a 1 ans il etait normal ...
Bien a vous .
Jonathan
Fellow NI guy here - got BFS symptoms in August 2020. Tested for ALS etc (negative- phew!) and it just got worse and worse. Finally my doctor prescribed Tegretol, an epilepsy treatment, and i take one tablet at night. The tablet greatly reduces severity as the twitches had become quite violent / mildly painful and disturbed my sleep. Mostly sleeping all night now and this has greatly helped my coping ability. My neurologist was worried about "medicalising" this condition, but i was needing some kind of intervention and this was the first treatment / therapy which made a difference.
Does this med reduce it massively and do you have twitching all the time?
@cathyparkinson3170 I still have twitches, they don't seem to want to go away. But the severity is reduced, I don't get the awful cramping which was hard to handle, and my sleep pattern was better. So it doesn't fix it, but eases some of the symptoms.
I've had BFS since August of 2019. Still twitch, and this evolved into a condition called Fibromyalgia, which comes and goes.
Thanks for sharing your story. I hope the fibromyalgia stays at bay for you. Take care.
@@bfsanxietysupport I meant August of 2019. Maybe BFS is messing with my mind.
@@ducheau100 may I ask how you knew it was fibromyalgia.
I have similar symptoms and I have GERD
Hey friend, do your muscles get sore or tight after twitching?
Not particularly though if I have a hotspot that’s going for days, weeks or months they feel kind of crampy on the exact spot.. like an ache. It’s totally normal due to constantly twitching.
Thank you @@bfsanxietysupport
My both claves has facicultions twesting 24/7 ... Please help me
Calves twitching are very common, please don’t panic. If worried please speak to your doctor.
I didn’t finish the video yet, but are doctors looking for a cure for this?
As it’s benign, there’s not much urgency as far as I am aware. Look for triggers and things that help you. Try to reduce your thinking about it and it should help.
I need severe help i see my life ending and i am really suicidal what happens is that after a period of severe fearr i had twitches all over my body that i cannot sleep and even if i sleep it would n non restful due to anxiety i think my brain is bioling i also suffer ocd that tells me that these fassiculations will never go they will only decrease and you will never be able to spleep i am in hell really need help
Hey I can't empathize with the OCD or the suicidal thoughts. I'm very sorry you've been struggling with those. I cannot help with those. The only bit of wisdom I can offer for you is that anxiety and these twitches are only as debilitating as you allow. I've had twitches for 9 years. I am okay. Most of the time I do not notice them at all. When I do notice them, it's usually due to anxiety. The sleep thing is rough. I know exactly what you're talking about. You can't sleep due to the twitches, then you focus on the twitches begging for them to go away, then you get anxious because you can't sleep, and your twitches get worse. Cycle continues. I don't have any advice that I can apply to your life in particular. All I can say is that this is mostly a non issue for me now and I hope that brings you comfort. It still happens every few months or so, but that is more due to anxiety because anxiety interrupts sleep and causes twitches. What I do during these times now is remind myself that the only 2 things I know that I have are BFS and anxiety. Neither will kill me tonight. BFS will never kill me. Annoying? Sure. Won't kill me though. Distract yourself, move your legs around while you're trying to sleep so you don't feel it so much and watch something entertaining and engaging until you fall asleep without realizing it. You will be okay. I really so hope the best for you and everything you're going through.
Magnesium glycerinate has improved 70% of my twitching. It was recommended by my pcp after my neurologist said I have bfs.
how long you take magnesium and see some results
I would caution against bringing up somatic symptom disorder to your doctor if you have fasciculations or any symptoms at all. Don't bring up health anxiety, conversion disorder, hypochondriasis... They are a scarlet letter among doctors. Having one of these in your medical chart may make proper diagnosis and treatment impossible. I'd go to a good (private) clinical psychologist specializing in these disorders to talk about the mental stuff. Fasciculations have many different causes and treatments can work! Botox helped me most!
@bfsanxietysupport hello, thank you for your videos. I often watch them when I am struggling and feeling low. They help me refocus when attempting to be more positive. I’d really appreciate it if you could answer me one question please. Do your calves still twitch constantly? Both my calves and arches of my feet twitch every second of every day 24/7. All other twitches are random and sporadic with occasional hotspots. I’ve been to a neurologist and had all the usual tests and been diagnosed with BFS. I remember you saying in one of your videos that your calves always twitch but I just wondered if they still do and if so if you meant literally every single second or just occasionally. Thank you!
Do you have any form of contact for a one to one ?
How do you know it's BFS? I have experienced various twitching over the years (at least 7-8 years maybe more) on various places of body, had 3 EMGs (last one was 8 months ago), and multiple tests and neuro and other exams. And I am still scared AF when they appear. Because they are always different! They are always on different part of body, face, leg, arm, shoulder... they are sometimes just constant little flickers, sometimes aggressive hard kicks under skin, sometimes, they are very localized to spot, sometimes spread in one or more areas, sometimes they last a day, sometimes weeks, sometimes months, sometimes they are constant or just at rest... I don't know how to live with this thing anymore! It's like constantly being in fear "what if this time it's not benign?". I know this is irrational thinking but why do I have this thing? These twitches? It can't be normal.
Do you ever get twitches in multiple spots at the same time?
@@katrinapomeroy3498 mostly at one spot at the time, but it can be constant and last for weeks even months. Like now, in my left thigh.
I started twitching after the first Covid vaccine. Has anyone else had the same ? @bfs and anxiety support , did you get it ?
Yes two weeks after the second vaccine, three years ago. Still have them and anxiety because of it.
Ja, nach der ersten Impfung 2021. Zwei Monate danach fing es in beiden Fußinnenseiten an bis heute. Dieses Jahr im Juli kam die Zunge dazu, ein bis zweimal am Tag für ein paar Sekunden immer auf der selben Stelle.
Hey, have your calves ever felt like tight or inflamed like you've just worked out?
I developed a twitch in my upper right chest/pec area in June of 2024. I didn’t think much of it but I figured it best to see my doctor. Doctor said to take magnesium and b12. I followed doctor’s orders and all was fine until August 12 when my left tricep started going insane. The twitch moved from my tricep to my back under my shoulder blade. It hasn’t gone away since. It’s been twitching everyday. I AM LOSING MY MIND. I can find no peace. I have struggled with anxiety since my 20’s. I am almost 42. I have a strange sensation at my left pinky toe. I wouldn’t call it numbness but it’s just feels strange. I am hyper aware of it along with my twitches. I have an MRI scheduled for September 4th. My doctor referred me for an EMG. Both at my request for mental health. My EMG has yet to be scheduled. I am struggling to find resources for mental health help. I doubt it would work anyway. I keep waking up in fear at 1:30am. I am certain that I have ALS. My wife has been great. I am so scared that my time will be cut short with my wife and 9 year old son. I love them so much.
I can reassure you that's it's not ALS. Weakness comes first in ALS. Eg being unable to grip properly, dropping things, dragging your foot .
I can relate to "losing your mind." Mine started in my chest, crept into my face, then jumped to every part of my body overnight. Strange sensation in my left quad that caused me to limp... I am 8 years into BFS and am far from dead. I still have debilitating symptoms at times but I got used to the constant twitching until I noticed they faded to infrequency. Your tests will come back clean and you will be okay.
Bonjour quelle est le nom du groupe Facebook sil vous plait ?
Que je me sente moins seul..
Merci😊
Mine started in May in my lip- shifted to my tongue from July- Sept. now it’s in my calves, abs and feet. My doctor said I’m fine. Neurologist did strength tests, said no need for more testing if no weakness. It’s been 7 months. I have no weakness and actually at age 51, I’ve re-dedicated myself to the gym to prove to myself I’m not losing strength. It’s still so stressful and scary bec of Dr Google.