Does anyone here have 'Benign Fasciculation Syndrome'

Hi,

Does anyone here have BFS or BFS symptoms? I know there were a few threads on it but curious if anyone is active? Thanks!

 

I have all sorts of fasciculations, muscle twitches etc. Never really thought much of them really, since they are totally benign. I really don’t think they are a “syndrome”.

 

Huh, had never heard the word Fasciculation before. I've also had twitchy things in all kinds of body places for decades, and like Cactusflower, at some point early in my life I decided they weren't worth worrying about. Sometimes they are momentary, sometimes they last for minutes or even hours, sometimes they'll bug me off and on for days - until they don't. The most common twitch that recurs is in one eyelid and that can go on for a few days, but I can't even remember which one it is, that's how little I care. It wasn't BFS that brought me to Dr Sarno's work and this site way back in 2011.

But anyways, I love this term, Benign Fasciculation Syndrome, which I get to add to my list:

One word that only describes the symptom, literally translated as "muscle twitch".
One adjective stating that it's harmless.
And "Syndrome" tacked on to the end.​

They almost always tack Syndrome at the end (fibro being a notable exception):

Fibromyalgia (translates as "pain in the fibrous tissues")
Chronic Fatigue Syndrome
Complex Regional Pain Syndrome
and many others, including, I am quite sure, Benign Fasciculation Syndrome
​

And OMG, our fear-based TMS brains absolutely love an official-sounding diagnosis!

These phrases are given significance by the medical establishment, so it's up to us to learn that they are merely
impressive combinations of words that sound to us non-medical folks like a pathological diagnosis, but which are nothing of the sort, because the words do not describe any kind of pathology. These names are being used to replace the real answer, which is "we have no idea why this occurs, but don't worry about it (and if we as an industry were willing to be open-minded and honest, it's probably because you show signs of anxiety, stress, perfectionism, goodism, and in some cases depression, OCD, and possibly PTSD)" .

Unlike the majority of the medical establishment, Dr Sarno started to pay attention to the personality characteristics of the people coming to him with their chronic symptoms. And although he created his own "Syndrome" phrase to describe it, he also had the correct advice to treat it.

It's not necessarily easy, but one of the requirements for recovery is to let go of things that encourage an obsession with or a focus on pathology. A healthy start would be to stop using the term BFS and just refer to your symptoms as muscle twitches (where they occur doesn't matter). Do the emotional work we talk about and offer here (for free), exactly the same as anyone with back pain, or any of us with long lists of other stress-based symptoms.

 

I fell down the benign fasiculation syndrome rabbit hole. My legs twitched 24/7 for 9-10 months or so (when I say 24/7, I mean they literally crawled with twitches, as many as one twitch per second all day long). The truth is, it's actually pretty common for muscles to twitch at a relatively high frequency, but most people don't even notice them. I sat and watched my partners legs twitching and she was blissfully unaware they were even going. I never told her, as I don't want to drag her down the rabbit hole as well lol. Although BFS is not a pain condition, I believe it falls under the same umbrella as TMS/neuroplastic pain or whatever you want to call these sorts of things. Basically your nervous system is on high alert and becomes more sensitive, making you more prone to noticing things that once went unnoticed. This is entirely reversible, so no need to worry. On top of the twitching my legs used to feel like they had ants crawling all over them, water was running down them, internal vibrations, you name it. All of those sensory symptoms are long gone, because I have no fear attached to them anymore. Even if they came back, I wouldn't care, therefore they wouldn't become chronic again. I think the muscle fibers in my legs still twitch as much as they used to, I just don't feel them anymore, again because there is no fear there so my brain doesn't focus on them. Attempting to ignore them is a fools game, you can't force yourself to not notice them. You have to work on bringing down the fear that surrounds your symptoms and your brain will let go all by itself.

A word of advice, stay away from BFS forums. Most people there complain, saying things like "I used to be anxious, but now I'm not since the neuro cleared me of MND/ALS. But, I still twitch all the time, I need to know why, it's incurable and is going to ruin my life, it isn't just anxiety.....etc". They fail to realise how anxious they are, and the fear of noticing their twitches forever is the very thing that forces them to notice their twitching. Once you reach a point of believing "yeah, I twitch, so what", they melt into the background and you never notice them.

 

hi michaelg21,
I thank u for writing what you wrote. I’m a young teen who has been struggling with BFS for about 4 months now.. may seem like a short time but wow it’s been some depressing months. I feel like my teen and youth years have been destroyed and crushed. It started off with intense twitching, while at rest like lying down or sitting down. Slowly it became less frequent but not enough where I could go 5 minutes without a twitch. Literally everywhere. I mean it. My face, lips eyes cheeks forhead side of head at times rarely.. my thighs calf my toes omg so annoying. My fingers my wrist sometimes, my arms, ITS HORRIBLE. But it’s like I can’t live my life like this. I have health anxiety and when I tell you I’m convinced I have ALS or MS is crazy. I ask for prayers or just help in any way. Words of affirmation and encouragement. Thank you sm.

 

I don't know you, but I severely doubt you and MS or other such illnesses. Twitching (fasciculations) are a symptom not an illness, and MANY things can cause them - they are not typical of MS presentation at all, and you are too young for the other things you mentioned. You should go to a doctor to check things out, but the fact that it's reducing in twitching is a good sign even if it's still constant. MS will usually present fairly dramatically - as in 'I can't see' or 'I can't move my leg' yes it appear other ways that aren't so obvious, but those other ways are not your ways mentioned.

 

Hi,
I mean it isn’t normal for a teenager or anyone to experience consistent twitches right? I have gotten cat scans done, mri, and recently an EEG , the rest have been normal but I haven’t gotten a result for the eeg yet. Im anxious to know if ima live a life of worry. Im also getting a nerve test but all these exams are making me wonder if my nueroligist sees something wrong.

 

those are all really normal and common baseline tests. They are doing their due diligence to eliminate possibilities. I can say 100% based on your posts that you are wound, worried, and anxious (understandably) so that's a factor too. MRI will eliminate MS so 100% put that one out. By nerve test you probably mean nerve conduction study (measures speed at which your nerves are travelling) and EMG - both extremely common tests and pretty standard procedures. You are just getting a proper workup...

 

@hellokittylover22 - you will be just fine. At my worst, i couldn’t go 2 seconds without a twitch in my legs. I twitched all over, but the legs were constant. I also had ‘sensory’ symptoms (buzzing, tingling, prickling sensations) off and on throughout the day.

Given your age and clear results in tests you’ve had done, these are not symptoms of an organic disease. This is your brain/body on constant fear, hyper vigilant of every tiny twitch that’s occurring in your body. You would be amazed at the amount of twitching seems to occur in people who are blissfully unaware of it. Sometimes if I bother to look, I can still see twitches in my calves, but I don’t feel them anymore and forget about it as quickly as I remembered. That’s really the trick to this whole twitching thing - move on and forget about it. I used to agonise over ‘how do I move on, how do I forget about it?’. The answer to that is to remove all fear of the symptom. Stop worrying that it’s deadly, and stop letting the symptom itself bother you.

 

did u take anything to help at all? Vitamins? I’ve seen people take CBD OILS, I’ve tried magnesium I don’t see any difference tbh.

 

I feel the same rn with the tingling and all that. So all u did was forget? nothing taken to help?

 

Dear @hellokittylover22,

I can see that you are suffering from the fear of what is happening to you, which is understandable. It sounds like you have been thoroughly examined and that "they can't find anything wrong". This means that your symptoms have a psychological source, not a physical source.

You don't mention your parents or family. What is going on there? Where are your parents in all this, and what is your home life like?

Those are the questions I immediately have when I see somebody as young as you who has such extreme symptoms which have no cause. The cause is more likely to be extreme anxiety.

Have any of these medical people suggested psychotherapy, or a at least a program for reducing your anxiety?

How are you at reading books? I'm not sure what to recommend for a "young teenager" but there are a lot of books and other resources for addressing your issues from the psychological viewpoint. Is English your second language?

 

hi!
My parents r very involved and very supportive with my care. They have found me a therapist but it’s hard as I can only see her once a month. It’s basically useless to me. They’ve taken me to the doctors multiple times when I feel bad to just be ignored by them. Yea I’m sure it’s something to do with anxiety but I get anxiety BECAUSE of the twitches so I’m in a loophole. I’ve noticed the days I’m more stressed bc of the twitches the more they happen. I just need help to get rid of all this stress. Thank you

 

Look, @hellokittylover22, again - I can see you are really suffering. And I'm impressed that you found our forum, because based on what you have told us, it seems quite clear that you are suffering from the mind-body condition we call TMS.

The thing is, on this forum, we are devoted to MENTAL and EMOTIONAL recovery in order to eliminate our physical symptoms. We remind ourselves constantly to think PSYCHOLOGICALLY instead of physically. We don't spend time discussing treatments or supplements or diets, because those don't generally help at all - at best, they work briefly because of the mindbody process known as the Placebo Effect.

Doing the emotional work takes a lot of concentrated effort, and I am not qualified to say whether someone as young as you (I'm going to guess 14) can do this work on their own. I'm not sure it is even ethical for any of the adults here to suggest that you should even try - not without the help of a professional.

You've been assigned to a therapist, and I would advise asking that person to work on your anxiety with you. As someone who has suffered from anxiety and TMS-induced symptoms all my life, which is more than 70 years, I am here to tell you that you absolutely DO have anxiety which undoubtedly existed before you had these symptoms. The symptoms have appeared because your anxiety is being triggered excessively by something else.

In order to start your healing process, you have to accept this, and then be willing to explore it with an open mind. But you simply cannnot have an open mind until you can figure out how to stop the cycle of fear that you are currently experiencing.

Perhaps we have some TMS-fluent parents out there who can help advise @hellokittylover22.

It is well known and discussed frequently that today's teenagers who are exposed to technology and an overload of information, along with the stress of social media, are suffering from a massive mental health crisis. Wars, climate change, and injustice everywhere only add to the distress. Although your individual suffering is unique to you, in reality you are just one of many teens who are in crisis right now, and it expresses itself in all kinds of strange physical symtpoms, all over the world.

You can try to educate yourself about this, but you won't be able to do anything if you doom-scroll about your symptoms, or if you engage in forums where people encourage you to catastrophize and worry. You really MUST STOP the catastrophizing. The truth is that if you've been thoroughly checked out, you must accept that there is nothing physically wrong with you, and that your fearful brain is causing these symptoms in order to keep you from acknowledging and experiencing some kind of emotional pain. This is what our brains evolved to do - it makes no sense in today's world, but it is what it is.

To maybe get help from adults here who have experience with teenagers, I recommend that you start a new thread in the Support subforum, and choose a subject line like "Teenager with severe stress symptoms needs advice". Tell your story briefly, and include the fact that you have been medically checked out and that they can't find anything wrong.

To get started on our resources, you can check out our Structured Educational Program at tmswiki.org. It's free, and does not require any kind of registration - you just click on the link for each "Day" and start learning.

 

Twitching was a major symptom of mine. Now, muscle twitches are my first clue that I'm suppressing my feelings and/or am overwhelmed. My biceps, triceps, and every large muscle in my legs will twitch when I lay down at night to go to sleep. I just tell myself, "ahhhhhh, I see you. I will listen better. Let's rest now." It usually stops within moments or I fall asleep. The next day I have to be more cognizant of stress, workload, etc. All the best...

 

I can go days depressed and no matter how hard I try to ignore the twitches and just be happy and more emotionally stable… it’s impossible. I’ve tried, I really have.

 

What can we do for you?

 

I’m not sure. I’ve had great support from my parents but I just wish to go to my happier version of myself. I guess I just have to get used to it.

 

You can "just get used to it" or you can take action:

1. Three other people besides myself responded to you and tried to offer you comfort. Try thanking them for their concern and their willingness to respond. Thinking about others besides yourself helps to feel positive about your future.

2. Read my longer post above and take note of the two action steps I suggest. Then do at least one of them.

3. Don't just reject therapy out of hand. That is your fearful brain, which would like you to stay in fear and keep twitching for the rest of your life. You need professional help to get out of this spiral, take it from someone who is much older and much wiser than you are. Open up your mind and your heart and take a risk.


I get it that this doesn't make sense, especially because you have very little life experience, but the good news is that somehow you found your way here, and we have a ton of information and a safe environment in which to learn from others who have the life experience that you lack. The information is right here, to teach you WHY your fearful brain is doing this to you. It's your choice: be a victim, or take action, learn, and start your recovery.

 

Yep! I get these. Was just looking them up on this forum last week... They only bother my when in particular areas, others I could care less about. But I do tend to notice that when I get them, I'm holding a lot of tension in my body. When I let myself relax and release that a little, they tend to calm down.

They also come and stick around for a week or so and then I won't have any for a while. So I think that helps me to believe they appear when I'm stressed about something. Definitely benign. Definitely TMS.