r/BFS

From all the research i've done on this condition, I firmly believe that a huge contributing factor towards frequency and intensity of muscle twitching is anxiety driven. How i've come to make the condition less intense has been focused on this. Below are some tips i've used to manage my anxiety, and overcome some extremely traumatic health anxiety that i experienced when all this started 6 months ago. I'm doing much, much better now. It took a lot of research and work, but I want to share what I've learned.

1. Stop naming the disease you're afraid of. This is a little psychological trick that my therapist told me about. We all know what disease i am talking about here. Those three letters. Stop using it. Whenever you get a flare up or a hot spot, and your mind starts going there, just tell yourself "I don't have any sort of disease. It's nothing serious". Tell yourself this multiple times a day, and do your best to believe yourself. I really believe that the ONLY reason this benign condition causes so much anguish for people is because of the existence of more serious and extremely rare diseases. We do not have anything but a benign annoying condition.
2. If your twitching moves around, you do not have a serious disease. More serious neurological diseases don't move around like that. BFS is annoying, that's all. Rest assured on this. This fact has helped me tremendously. Refer to point one whenever you feel a flare up in a new area that wasnt there before. And if you are having a flare up in one spot for a week, that is ALSO normal. Do not interpret me saying that its only benign if it moves around. It's super common for a flare up to last hours, or days, even weeks. Im just saying that if you have flare ups that come and go and move around, that is a TRUE indication of a benign condition. Serious diseases do not do that.
3. Another phrase i tell myself that has helped me tremendously is telling myself "this is just something my body does". Tell yourself this over and over again. Like people with skin conditions, or people with allergies. Benign fasiculations are just something our bodies do. It's annoying, we all wish they didnt, but we have to get to a point where it's just an annoying condition we need to live with. Some days are harder than others, but tell yourself its something your body does, and refer to points 1 and 2. I understand saying "we need to live with it" is no balm or help right now if you are going through it, but it's really the only way forward. Refer to points 1 and 2. Really try and believe the truth in them, and this point will begin to ring true.
4. Practice meditation. And no, meditation does not mean sitting cross legged on a yoga mat in the dark. Meditation simply means being totally, 100% present in the current moment. Focus all of your attention inwards towards your thoughts, emotions and feelings. Do not resist them, or judge them. Let ALL negative thoughts and feelings towards twitches come and just observe them. You will find that your anxious thoughts and mood evaporates. A nice simple trick you can use to practice meditation quite immediately is ask yourself "I wonder what my next thought will be?". Ask yourself that in your mind right now, and focus all your attention inside your brain. Ask the question, and just observe your thoughts until a thought creeps in. It usually takes quite a while. Wait for it. Wait for a thought to come in. You will notice that while you were waiting for your next thought, you were not thinking about twitching. With practice, you can use this meditation technique to pull yourself out of a nasty anxiety spiral before it gets going.
5. Keep your electrolytes up. You can flush them out if you pee a lot. A blood test may show your potassium levels are good, but that does not indicate the truth. Potassium is stored in the cells of your body, which does not show up on a blood test. Take supplements (specifically magnesium BISGLYCENATE, and potassium citrate). Also, take a b-complex. B vitamins are very important in nerve health. Get sunlight when you can for natural vitamin D.
6. I'd like to re-iterate a previous post i made where I recommend getting on an anti-anxiety medication. Talk with your doctor. The BIGGEST contributing factor to managing this condition is anxiety, in my opinion. Your nervous system simply doesn't relax if you are constantly anxious about having a serious disease or condition. For me, getting on an SSRI (selective seratonin reuptake inhibitor) made all the world of difference. These drugs increase seratonin levels in the brain, which regulate mood. It allows you to maintain an equilibrium of mood MUCH easier. It allows you to not have such intense anxiety spikes, and the frequency of them drops. Seriously take this advice and consider taking them with the assistance of your doctor.
7. Make sure you are not iron deficient. Ask your doctor for a blood test. Iron deficiency is the #1 cause of Restless Leg Syndrome (a condition where you h ave the overwhelming urge to move your legs and is temporarily relieved by moving them). It can also cause buzzing, leg cramps, and fatigue. Fatigue is a HUGE contributing factor for muscle fasciculations. Many people dont even know they are iron deficient. High iron rich foods include most shellfish (clams, mussels), and red meat.

If i think of any more tips along with my previous post, ill post them. If you are reading this trust me, i know exactly what you are going through. Especially if you are early on. I know how traumatic and scary it can be. But you WILL get better.

It was 2023 when I first started this journey. (It's a long journey, but bare with me). I remember walking back from swimming one day, midsummer, I think, and for some odd reason I stretched the left half of my top lip (yes, like an Elvis lip) I still don't know why, and it stuck there. Only for a second, but it stuck there. At the time, I wasn't all too worried; maybe I was overdoing my exercises, maybe I was undereating during my workouts, or dehydration; all sorts of things went through my mind about what it could be.

Every time I walked home from the pool, I would do the same thing, almost out of habit. It sort of amused me, at the time. A few weeks later, it started to worry me - but really not enough to go to the doctors or to see a professional. As with many of you, nothing indicated at the time what the next three years would be like.

A few months later, I was riding home on a bike from a friend's house. It was raining heavily, and I had a very heavy pack on my back. I was at the height of my fitness (I was 38 at the time) and felt great. As I was coming to a quiet junction on a road, a car pulled into the same side of the road I was on (I was on the correct side), and with nowhere to go, I had to swerve out of the way. I hit a very high curb and came tumbling off my bike. I scratched myself pretty badly, and though the driver showed some remorse, they drove off without ever getting out of their car to see if I was okay.

I got home and cleaned myself up, dried myself off. It hurt, but not badly, and I put it down to bad luck and stupidity on their part. Looking back, I honestly believe it was this incident that threw my nervous system over the edge. A few days later, completely out of the blue, the back of my head started to ripple, my first twitch. In a matter of hours, they spread, first to my left arm, then my left calf muscle, and then eventually into my right calf muscle. Endless, maddening, torturous fasciculations that went on for days and days. Over a short period of time, they attacked my legs, arms and torso ferociously. The calves, the knees, the ankles, the insteps. My toes cramped, my thighs buzzed. My lips had a life of their own. I remember my left peck twitching all day once. All day without any relief. There were deep cramps in my stomach. My eyes were puffy from the amount of incessant fluttering they were forced to be under.

One night, it felt like someone was rubbing the end of a pen up and down my legs - it was painful, and this is what forced me to at last go to the doctors.

Of course, when I went there, under observation, the bloody things decided to go away and leave me looking like an idiot. But my doctor decided to send me for some blood tests. After a while, they came back to say that I was folate-deficient. I remember sitting there, hearing that word — folate deficiency — and feeling something I hadn’t felt in weeks: relief.

Finally, there was an explanation. Something measurable. Something fixable.

All the chaos — the twitching, the cramping, the strange sensations that had taken over my body — suddenly had a name. It wasn’t something mysterious or sinister lurking in the shadows; it was a deficiency. A gap. A simple imbalance that could be corrected.

I clung to that.

I started thinking back over everything — the workouts, the diet, the long days, the sweat, the strain — and it all seemed to line up neatly. Of course. I’d pushed too hard. Not eaten enough of the right things. Let something essential slip through the cracks.

It made sense.

For the first time since that ripple at the back of my head, I felt like I was back in control. Like the ground beneath me had stopped shifting. Like this whole thing — this bizarre, creeping storm in my body — had an endpoint.

But the twitches kept going - despite having a course of folate medication.

I went back to the doctors, and I used that fateful phrase 'I think I am having health anxiety' - music to a doctor's ears. I was, then of course, to them, anxiety-ridden and no matter how much i tried to explain that I wasn't and that the faciculations were making me anxious, not the other way around, the more I sounded crazy.

And of course, the twitches hid away every time I had an appointment - even videos that I took didn't convince her.

Eventually, I started to get extreme numbness in my left hand, and my doctor scheduled an appointment with a Cubital Tunnel Syndrome specialist. She at last surrendered.

Feeling my plight and seeing nothing that indicated CTS, the specialist booked me in with a neurologist, the wait for an appointment. 12-friggin-months. That's right, a year.

It's been a long year. With lots of ups and downs. Over that year, though, I broke through the fear of having something worse, that horrible, awful condition that is extremely rare, MND. I broke through the strange, weird way your body, your mind, tells you have all these awful things; I clearly didn't. Brain tumour, when I saw flashes in my eyes, bowel cancer when my tummy was upset. I even thought I had bone cancer at one point. Your mind tries desperately to explain your condition, a condition that is, really, anything but benign.

Some days my faciculations would be awful. 24-hour twitching, cramps, pains in my legs, enough for me to not be able to walk some days. Weakness is my legs, arms and torso. Other days were a relief - nothing but a small flutter, sometimes nothing at all. I tried all manner of medications and supplements from sertraline to pregabalin. Nothing stopped it for good - in fact, the pregabalin turned me into a complete zombie for months and months. The summer of 2024 was a complete blur.

12 months of a revolving door of waiting, thinking and hoping.

In May 2025, I moved in with my partner in Brighton. Something changed. I was no longer fixating on my legs. I had things to do, someone to chat to and interests to pursue. I began to think less and less about the twitching and more about positive things - more about the good things in life, not the bad. Over the course of last summer and the winter, the twitches subsided massively, almost to nothing, and while my legs will never be the same (I still suffer some perceived weakness and pain (my knees are shot to bits) and I have a general loss of "strength" in my lower limbs for sure, my faciculations have faded to almost nothing.

I certainly feel that my mental health has changed; my outlook on life is different. I see life differently since the start of this journey for sure.

I had my MRI in January (clear), my bloods done for my neuro in the same month (clear), and tomorrow I have my EMG and NCT. I suspect they will come back with an all clear too.

We are all on this whacky, twitchy journey, and though people are understandably scared of where that journey will lead them, it very often leads to where I am: perfectly fine.

Your homework. Get out, do things, enjoy life. Go cycling, swimming, or horseback riding. Whatever it is you do, do that. Enjoy it. It's not worth the hassle. You're letting it beat you. You beat it by living life. You beat this thing by forgetting it was there in the first place.

It's summer now. You have no excuse. Go win.

M

Hi everyone,

I recently found this group, and I was surprised to see how common these symptoms are—the same ones I’ve been experiencing. I feel really sorry for everyone dealing with similar issues, but at the same time, it helps a bit to know I’m not alone. My story is a bit long, but I’ll try to summarize it.

It started about 8 years ago, when red spots appeared on my skin. I was given antihistamines and steroids. Around that time, I developed some double vision, so I was kept in the hospital. They diagnosed me with meningitis, gave me medication, and then discharged me. However, around that time I also noticed small twitching in my tongue. No one I told had ever heard of anything like that. I saw several neurologists and underwent thorough examinations, but everything came back negative. They explained it might be a residual effect of the meningitis.

Later, these twitching sensations spread throughout my whole body. I also visited infectious disease specialists, where I was diagnosed with a Bartonella infection. I received treatment again, but I somewhat felt like it was prescribed just to reassure me, not because they truly believed it was causing my symptoms. I’ve seen many doctors in different specialties, but all my test results keep coming back negative everywhere. Of course, I’m glad about that, but I don’t want to accept that this will stay like this forever.

From my most recent ophthalmology visit, I was told there might be a local issue with my eye, so I need special glasses.

Another thing I find strange is that there are periods when I’m completely free of twitching for days or even 1–2 weeks, and other times when it’s quite frequent. What could this depend on?

Thank you very much if you’ve read all of this! I would really appreciate any advice. If you have suggestions on what I could take or what might help, please let me know.

Hi guys. My first time here, but well...here we go.

My right feet started to vibrate a week ago. First I thought it was because i spend a lot of time sitting down because of work/ university and because I've been sedentary for the past three years for the same reasons. I thought it would pass in a few days, but it didn't.

I don't feel pain, I don't feel weakness, only this vibration in the sole of my foot that sometimes appears and disappears, sometimes becomes imperceptible, and sometimes returns relatively strong. (Sometimes I might feel some sensitivity in the area and stings, but it's occasional.) When I started reading the posts here, I began to remember some moments when my arm trembled, my eye did the same, especially when I was tired or I felt that my body was reacting to anxiety.

It was never something that lasted very long; it was something momentary that disappeared after a few days or hours. That's why I found it strange to have it on my foot for a whole week and it not going away. I'm nearing the end of my university studies, and I believe this is generating a huge amount of anxiety and fatigue in my body, since I'm not sleeping properly, I can't eat properly and I certainly can't relax at all. I think this might be a response from my nervous system, but I don't know exactly what to do.

I'm going to the doctor on the 20th this month, but I won't deny that I'm quite nervous and anxious about all this. I don't know if anyone has any advice on how to ease the feeling until then.

(Sorry for my english btw, I'm not fluent)

This started for me back into 2023. It sent me into absolute spiral and depression. After many doctors visits there truly was no explaination. Except one. Stress and anxiety. I did therapy and that truly did help me. Sure they still happen, but I welcome them. I no longer fear or focus on them. I let them do their thing and pass. You too can do it!!

I notice they are far worse after a few nights of poor sleep. And my potassium was measured as low during a blood test.

Trying to lower my stress and anxiety and drink more. Coconut water is great for electrolytes.

Benign fasciculations

I want to say these past two weeks have been very scary, up and down roller coaster for me. I’m 24 (f) and it all started with my arm feeling like it’s giving out, I don’t know the word for it but for example doing my hair or cutting veggies would wear my arm out and it would last I want to say the whole day, then with rest it’s fine . I will like to say I have dislocated both shoulders a good amount of times but really I’m noticing it really with my right arm. Other symptoms I’m having is my right arm just feeling sore, I pressed on where I felt like it hurt the most and I it was like a shock to my whole body, left leg numbness, legs falling asleep easy , and ear ringing ( not sure if this is connected) Anyways then I started to have muscle twitches (things I’ve had before ) but these were becoming more frequent I get them every hour to minutes of the day and even in parts I didn’t know could twitch. I’m really worried and I am constantly looking at tik tok and most videos I see with the muscle twitches all have *** , I’m young and I have a baby to take care of, my biggest worry is this being what I’m scared of and not being there for my son… it breaks me to a million pieces. Anyways I finally found someone to see me at the end of the month a neurologist, I’m really hoping he will give me a EMG to just give me a peace of mind. I just don’t want to feel alone. And honestly I’m terrified.

Just me? Man it's freaking me out

Has anyone had something like this?

I had a hotspot in my left tricep for 1-2 days and now it feels tired and sore and also when I outstretch my arm (thus activating my tricep) it tremors on that side way more and quicker than the other arm.

My symptoms are as followed:

Twitching widespread

Occasional Cramping in neck

Cramping if weight is applied onto muscle

Cramping in certain positions and

Left side is weaker than right but generally weak all over

Perceived undiagnosed left side atrophy

Muscle dents everywhere

Shortness of breath

Clean EMG 1 year 4 months ago, Symptoms have progressed since, no failure of muscles yet.

Been officially diagnosed with bfs

Symptoms include

Severe pain in legs

Twitches everywhere

Hyper salivating

Muscle cramps

Numbness and tingling especially in calves

Pain everywhere

4 clinical exams

2 ncs and emg

Neuro says it’s impossible to have the big bad with your strength after 2 years of symptoms

I asked him why the tests were so pathetic

He done tests a lot harder and said I will injure him if we continue

I pulled the bed forward on testing arms

He said he cannot offer any more tests considering what I’ve had recently

He said only explanation is bfs

Complete mystery

da quasi 8 mesi ormai combatto ogni giorno con fascicolazioni diffuse in tutto il corpo e spasmi alle dita di mani e piedi…stanchezza generale, ma nessuna perdita di forza o debolezza, riesco a fare tutto…quello che più mi fa paura è che il mio corpo è cambiato in una maniera spaventosa…ho una flaccidità diffusa in tutto il corpo che non ho mai avuto prima d’ora…è come se le zone colpite dalle fascicolazioni apparissero sempre più molli oppure riuscissi a sentire troppo le ossa…7 mesi fa ho fatto un’Emg ed un’elettroneuromiografia in quasi tutto il corpo ed il risultato era pulito…poi visita neurologica da un luminare (che mi ha lasciato un po’ perplessa) che detto essere tutto okay…una settimana fa ho fatto un’ecografia muscolare in tutto il braccio destro per vedere se ci fosse atrofia…ed il referto riporta che i muscoli sono sani e normoconservati…i sintomi però continuano a peggiorare…qualcun altro ha vissuto la mia stessa situazione? ogni giorno il pensiero che possa trattarsi di sla mi fa vivere nella disperazione…continuerò a fare visite ed esami fin quando non troverò una soluzione

I have constant fasciulations in my leg. waiting on neurologist. they don't see my referral as urgent. what could this be. my leg has gone a weird shape, certain areas have dipped in. I can still walk on it and tip toe ect.