BFS & Twitching | It's almost been 4 years

I'm back guys, after almost 4 years of silence on my channel I thought id come back to say hello and give you all an update on what's been happening.
I also suggest a couple ideas near the end of my video about what the channel could become or at least gradually become... Baby steps and all that.
Thanks for the support, I love reading your comments, its great knowing that my VLOG helps some people, it really makes it all worth while.
I'd love to hear your thoughts on what my channel could become, would you call in? would you like me to read your comments out and address it ?
Could it become a podcast for mental health or general support and good vibes?
If you want to follow my other channel, subscribe to @PhoenixFilmTV
Link to the FB support group / 854180221302634
Lets go guys!
Wishing you all a happy new year!

[@jefftayloralive]

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.

[@cosmichorror5646]

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.

[@cosmichorror5646]

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.

[@lucadinnocenzio8345]

nice,where you calf+random minor pops everywhere twitcher or standard body wide twitching?@@cosmichorror5646

[@bfsanxietysupport]

Hey love your story, thanks for sharing the positive vibes. Excellent news that you’re so much better and the twitching has greatly reduced.

[@bfsanxietysupport]

@@cosmichorror5646Absolutely, I’m always telling people to get out and stay active, do things they love. It really helps! Keep spreading the positive vibes!

[@theonejmv]

@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

[@garethdower9109]

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

[@bfsanxietysupport]

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.

[@drewyoung8226]

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!

[@bfsanxietysupport]

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.

[@user-ss6hc1hf9y]

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.

[@user-po2we3pl8f]

Thank you very much! I'm so happy that you're well :) GOOD JOB!

[@bfsanxietysupport]

Thank you, take care.

[@lucadinnocenzio8345]

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.

[@anshulyaduvanshi_]

Is your twitching constant or transient

[@bfsanxietysupport]

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.

[@zwikos14]

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

[@bfsanxietysupport]

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!

[@genergia]

I have been diagnosed BFS since 3 years ago. i am 56 years old. I have less and less anxiety about it now :)

[@bfsanxietysupport]

Great news the anxiety is reduced. I hope the twitching reduces too and you can filter it out.

[@genergia]

@@bfsanxietysupport Twitching and myoclonies are still here. In fact, if they wouldn’t be here anymore, I would miss them 😉

[@Harrycurls]

How are you doing now any improvement?

[@jcleat90]

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!

[@Ellen-85]

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 ❤

[@bfsanxietysupport]

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 😊

[@Ellen-85]

@@bfsanxietysupport 🥰❤️

[@jasonsrunning]

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

[@bfsanxietysupport]

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!

[@MrTropicalEYE]

Thank you so much!

[@bfsanxietysupport]

You're welcome! Thanks for watching.

[@theonejmv]

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

[@bfsanxietysupport]

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.

[@theonejmv]

@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

[@cathyparkinson3170]

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...

[@nathanwynne713]

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

[@bfsanxietysupport]

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.

[@AshleyKennedy-wb1kg]

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 .

[@Progressivelyyou]

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. 😊

[@bfsanxietysupport]

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.

[@nishantverma1346]

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.

[@ducheau100]

I've had BFS since August of 2024. Still twitch, and this evolved into a condition called Fibromyalgia, which comes and goes.

[@bfsanxietysupport]

Thanks for sharing your story. I hope the fibromyalgia stays at bay for you. Take care.

[@williamarks]

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]

Does this med reduce it massively and do you have twitching all the time?

[@williamarks]

@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.

[@devilsgaming7115]

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

[@mattnthat]

Hey, have your calves ever felt like tight or inflamed like you've just worked out?

[@davidgrab7036]

Hey friend, do your muscles get sore or tight after twitching?

[@bfsanxietysupport]

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.

[@davidgrab7036]

Thank you @@bfsanxietysupport

[@biljam972]

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.

[@katrinapomeroy3498]

Do you ever get twitches in multiple spots at the same time?

[@biljam972]

@@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.

[@user-jv8nx8th3f]

Do you have any form of contact for a one to one ?

[@anshulyaduvanshi_]

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

[@Progressivelyyou]

You're fine. Happens to me too. Ive had all the tests. All good.

[@bfsanxietysupport]

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.

[@anshulyaduvanshi_]

@@Progressivelyyou which body parts is your twitching and is your twitching constant or random

[@jamarisaiah3994]

I didn’t finish the video yet, but are doctors looking for a cure for this?

[@bfsanxietysupport]

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.

[@EmA-gb9cv]

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❤

[@bfsanxietysupport]

+@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.

[@EmA-gb9cv]

@@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 ...

[@nishantverma1346]

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.

[@user-ss4fn7im8o]

My both claves has facicultions twesting 24/7 ... Please help me

[@bfsanxietysupport]

Calves twitching are very common, please don’t panic. If worried please speak to your doctor.