Every time I watched Harry Potter, I was always frustrated why none of the wizards would say "Lord Voldemort". I mean, it's just a stupid name. Holy hell, just SAY IT!!!...
Now I get it. For the longest time, even occasionally now, I would shudder at the acronym ***, or as I will call it in this post: "Lord Voldemort", even long after I’ve made the assumption that I do in fact have Benign Fasciculation Syndrome and not something more sinister. 

Because when I started down this rabbit hole of terror 4 years ago from misinformation and doom scrolling endless medical information online, it was easily one of the worst times of my life. 

I first want to say that for most of you just starting off on your BFS journey, this is going to be one absolute hell of a roller coaster. Some of you are going to be more afraid of this ride than others. But as the coaster continues towards the station, the hills are going to get easier with less anxiety each climb and every dip you take until it flattens out again and you are for the most part back where you were pre-anxiety.

So here's my "quick" story:
I am now a 38 year old male. I've had the occasional twitch in random locations for the better part of a decade now. But it was always random and fairly rare. Maybe once a day or once every few days. I remember the trigger for me that set this off was some anxiety related to both a fitness test I was afraid I wasn't going to pass and, believe it or not, a simulator "game" that I play to reduce stress. The Simulator in question was Microsoft Flight Simulator 2020 and I was online via the VATSIM Network. 
Side note, VATSIM is a largely 1 for 1 simulation of aviation procedures and air traffic control across the entire world. People come on to simulate being Air Traffic Controllers and people come on to simulate being pilots in a variety of aircraft and following real world processes from your clearance on the ground to your taxi to the gate at your destination.

Any-who, I was concerned because I had not been on VATSIM for years and was afraid I was going to mess up the procedures for my arrival into KLAX and my anxiety was rising already due to that. So as I was inching closer to the Los Angeles Center controlled airspace (as nobody for San Francisco Center was online at the moment), I got a text that I needed to perform and pass a physical fitness test for my work. I'm certainly out of shape at the time and that concerned me. It was right about this time that I started twitching in earnest.

Now as stated above, I've always had twitches and pops here and there. But this time it was particularly noticeable. On top of that, it was occurring every minute or so as opposed to every day or so. I remember reading somewhere that twitching could be associated with something more sinister, so I did the exact same thing all of you did and went to "all powerful, all knowing, almighty" Google for information.
BAM!

Right there in front of me was the false diagnosis and my anxiety immediately shot through the roof.

And with that anxiety, came a very significant and noticeable increase in the twitching, and not a moment before. Now it was occurring every 10 seconds give or take and sometimes every second. I was absolutely terrified, and that's something I'm ashamed to admit as I'm a Marine Corps veteran with service in Iraq and having previously worked in law enforcement. I have always been willing to put myself between innocent people and harms-way. I have been in fights and struggles with "bad guys" and have always reacted with professionalism and calm, even when I knew it was coming.  I am absolutely convinced that should I ever, heaven forbid, get dispatched to a mass shooting event, that I will run into that situation immediately without a second thought and do everything in my power to stop the threat as quickly as possible. 

And yet here I was. Shaking. Scared. On the verge of a panic attack because of muscle twitching.

Well, as you can imagine or remember experiencing,  that first night was absolute hell. Goes without saying I couldn't sleep. And when I nod off, I woke up again minutes later. I had my first panic attack in over a decade. I was having severe twitching in my left calf and I finally couldn't take it anymore and jumped out of bed, pacing back and forth speaking out loud to myself and the cat watching my strange behavior in the corner as I repeated to myself "you're okay, relax...relax, it's ok...".

I finally got back in bed and put on any comedy shows or movies I could think of, to distract me. I even started watching SpongeBob from episode 1, season 1 and would try to turn away at the beginning credits before Stephen Hillenberg's name popped up because I remembered that he died of ***.

The twitching occurred all over. Calves, soles of feet, fingers, wrist, biceps, buttocks, lips, thigh, shoulder, head...but never in my eyelids or tongue that I can recall.
I couldn't focus on my online schoolwork and grades suffered a bit. The anxiety was so extreme I couldn't eat. That first week I maybe ate a few bites of a granola bar or candy bar. I lost at least 10 pounds, which compounded the anxiety further as I convinced myself it was due to muscle loss.

I took the P.T. Test. Besides obviously not feeling up for it in the slightest, I passed. But it had been so long since I worked out that hard, that I got muscle weakness symptoms in my arms and legs. The weakness lasted for 3 weeks, I was so sore and weak, additional compounding my anxiety that I was one of the unfortunate one in a million. Oh why me!!!? I made deals with God, promising to act better on this behavior or that one, if he would spare me this fate. I even thought once or twice, if it came down to it, would it be better to take my own life in some way than to suffer this fate?
I became absolutely obsessed with my muscles, particularly my calves, and even more particularly my left calf where the vast majority of the twitching, or as I now know it, the hotspot, was occurring. I would check my muscle mass probably 100 times a day, trying to reassure myself and having the exact opposite effect when I recognized my left calf was indented a bit in the middle unlike my right calf, now realizing that was completely normal depending on the person, which leg is dominate, etc.

I craved going to work to keep my mind occupied and dreaded going home to the peaceful little oasis I carved out for myself in the mountains because while I could remain busy at work, I had too much time to sit and think at home.

I needed the reassurance. And without immediate access to a medical professional, I did what we all did. Went online for answers. Reassurance. Something to tell me I was okay. What I found was what we lovingly have coined the rabbit hole. Article after article, including but not limited to, opinion, news story, forum post and medical journals. While one post would assure me that my exact symptoms and circumstances was completely fine, the next would assure me that it was "Lord Voldemort" and that it was only a matter of time before he came for me. Bouncing back and forth like a ping pong ball, I became absolutely exhausted. But I couldn't stop. I made a commitment to myself to stop looking online for good. I knew it was a "drug" that wasn't helping me in the slightest, but I couldn't help the "addiction". Between a few minutes to a few hours later, I was back on google, trying different phrases in the search bar, scrolling and clicking. Sometimes for a few seconds. Sometimes for literally hours on end.

Google picked up on this as well, and instead of helping me "detox", the suggested videos popped up like a tidal wave. I went on YouTube and for the first time in the history of my account, it was now suggesting video after video of "Lord Voldemort" stories or information.

It was right about here, a few days into this absolute agony and despair that I started to see a light at the end of the tunnel. A tiny, little speck of a thing. It started with the BFS forums. Reassurance after reassurance was helpful. People going through the same exact thing, with the same exact symptoms in the same exact spots with similar triggers, etc. I've always been a true introvert and scoffed at "group therapy", but that's basically what this BFS forum is. And it really does help.

Then I found a helpful YouTube channel from a content creator from the U.K named David Harvey that helps people overcome their BFS, before and after a visit to PCP/GP and beyond. He posted videos and even had a Patreon that offered one on one counseling. I took one of his one on one counseling sessions and it did help! https://youtube.com/c/DavidHarveyAnxietyrelief

Being able to talk LIVE, one on one, with a real person who went through the exact same thing. Not sure if he still does these sessions or not.

Then, fortunately in my case and by coincidence, I had an appointment with my doctor already set up for my annual physical from nearly a year ago. I went in and explained the situation. He did a bunch of tests on me including a complete blood and urine panel, checked my muscles, checked my strength, vision, etc . I asked for an EMG and he said "mmm, no". I said it would bring me reassurance and comfort he said "nah, you don't need it". I was literally at the point of begging for one and he sat me down and said "there's nothing that I can see here that would even have me lean towards the idea that "Lord Voldemort has cast a spell on you or you need an EMG". He went on to explain that EMG's can be painful and that they were booked for about 6 months. I finally relented and said "ok".

Now my primary care doctor is through the Department of Veteran Affairs. I use the VA because I have most of my records there, it's free and I have generally received better care there than I have at other health care providers I have used. However, I did have a Kaiser Permanente plan through my work and I went home, typed up a confidential message to my doctor in my account asking for an EMG and stopped myself right before I got the send button. I'm still not 100% sure why, but I decided not to proceed with the EMG request or fight it further at the VA, and as of this post, I still don't even have an official diagnosis of BFS.

I already have a long, long history with health anxiety since I was 7 years old. I still remember the day. Thanksgiving Dinner. 7 years old. Out of nowhere in an instant I convinced myself I was going to have a heart attack and die. Lots of doctor visits and counseling sessions later, I moved on. A few years later it was that I was going to choke to death if I ate anything solid. Lots of tomato soup later, I moved on. Then I got into this endless loop that no matter how much I tried to breathe, that my lungs were not getting enough oxygen and that I was slowly asphyxiating to death. Lots of hyperventilating symptoms later I moved on. Then it was waking up in the middle of the night, night after night, gasping for breathe. Lots of tests later I found out it was sleep apnea.

I remembered I had one more panic episode around 2013, which is as far back as the twitching started, but couldn't remember the details. At all.
Fortunately, because I've consistently used the VA for my healthcare, I have all my medical record accessible online. So I went to work. Going back record after record until I finally found what I was looking for, and the climax of the first hill of the roller coaster I was riding.

In December of 2013 I read that I was going through anxiety and occasional panic episodes. But why? I went back to August through October and found messages back and forth between my primary care doctor and myself talking about muscle twitching. I described exactly what I was going through now, down to the line. The twitching all over, my concern was that it was "Lord Voldemort". I came to the realization that I had been twitching for almost 10 years!

I immediately and finally found the sweet relief and reassurance I had been been looking for for about 3 weeks. Now, after this, the roller coaster ride wasn't over, even though I was at the bottom of the first hill. There were still a few more hills to coast over. I would accidentally sleep on my hand and wake up to panic that I could move or use it like my other hand...sometimes for an hour. I would still occasionally trip and on the back of my mind, Lord Voldemort would be there, smiling and taunting me.
I would start to doubt myself again or get the urge for just one more peek of information, then I got to my one month anniversary and could still walk, could still talk, could still swallow, could still breathe, could still be lifting 80 pound star barrier (tank barrier) at my work, often lifting it up above my head just to prove to myself I could still do it.

I took a new outlook on life as a whole. I felt like I had dodged a real bullet, when in fact I was fine the whole time. But the relief was so incredible, it was like being told you might have terminal cancer then doing a test and being told "our mistake, you are 100% fine". I became much more grateful for each day and the smaller, finer things in life. The whole stopping to look at the flowers and not being as pissed off when that a-hole cut you off on the freeway.

I made the commitment to get the F out of the house and go do something, ANYTHING, bare minimum once a week, if not 3 says a week on my 3 day weekend. For all the bad there is to living in Southern California, there sure is a hell of a lot to do! I went to zoos, museums, Theme Parks, downtown areas, aquariums, whale watching, bike rides in state parks, the beach, I walked the Hollywood Walk of Fame for the first time even though I've lived here for 35 years, I went on short hikes, visited gardens and arboretums, walked some of our beautiful college and university campuses, went to Broadway shows and musicals... absolutely anything. On a particular trip to Universal Studios Hollywood, about two weeks after the twitching really ramped up, I walked 19,000 steps. Nobody suffering from the affects of Lord Voldemort could accomplish that. I gained my weight back, which sucks, but was also reassuring to some degree that I wasn't to losing muscle weight.
I've been typing this on my phone for about 2 1/2 hours, and I've had at least 100 twitches all over in that time...

When at home, I started on home improvement projects I had been putting off for years. I started some late spring cleaning, gardening, got more comfortable on VATSIM and back into Flight Simulator, started on relaxing games like Animal Crossing, Stardew Valley and Cities Skylines (although I hated the deathcare part of the game). I started a whole list of comedy shows to release stress. Staple movies like Benchwarmers and strangely hilarious shows like The Ricky Gervais show (should be called the Karl Pillkington Show).

Now here I am 4 years to the date later. Still alive, not losing any muscle. Still gaining weight 🤦, still able to walk between 5 and 20,000 steps a day, etc. With that, I just want to add three things that helped me through this in hopes that it may help you:

1. So this whole post is all well and good, as are everyone else's stories on the BFS Subreddit, but I know what you are thinking. "But how do you know I don't have it"!!! Brutally honest answer, I don't and neither do you. But I do know how to calculate odds and risk and this isn't the Hunger Games. It's not "may the odds be in your favor". It's "the odds are exceedingly in your favor." To an extreme, almost ridiculous amount. You should be far more terrified getting into your car or flying Malaysia Airlines.

But I know that doesn't necessarily help most people. It didn't help me when this started.

So...
​
Go to you PCP/GP as soon as possible. Get checked out. Insist on a EMG (unlike me). Get that reassurance and put this to BS to rest instead of suffering. Get recommended to a therapist in the meantime, and don't necessarily turn away from prescription medications if needed to control anxiety. We are lucky AF to live in 2025, so use the fruits of human knowledge and scientific understanding our ancestors worked so hard for to help you live a better life. Then get out there and return the favor when possible.

2. Get the F out of the house. Go do something. Not just stuff you might like to do like a concert or sports event, try something new! The zoo, a museum, a local hike, that day trip you've wanted to do but put off. Go spend time with the people that matter, not because "time is running out", but because it makes everyone happy, including you. I literally went to the Ballet to see Swan Lake by myself because I never did it and it was something new to try just because of my "get out of the house" policy, and I liked it.

It really, really helps to get out there, exercise and give your mind a rest from near constant anxiety and worry.

3. I truly know what you folks are going through. I know the absolute hell of this. It's real suffering and our brains are so powerful, it makes this fiction seem like the real Lord Voldemort. It's not. But I know just assuring you on Reddit won't be enough. It wasn't for me. The only fix for that, unfortunately, is time. You are going to have to ride this rollercoaster for a month or two (or more). You are in the seat, and the safety bar is down, and it absolutely f'n sucks. But it does get better with each passing week. Get those tests done, stay clear off of the internet (except the YouTube Channel I linked to and this subreddit, if it helps like it did me), and look forward to a long, worry free life.

As Al Swearingen said in Deadwood when Doc told him he wasn't going to see patients anymore because he thought he had a communicable disease and that he would not risk spreading to others: "nobody gets out alive Doc".

How true is that. While true, it's not going to be Lord Voldemort that's going to get us.
All the best folks. Feel free to ask any questions if needed. 

ONE MORE VIDEO THAT ABSOLUTELY HELPED SLAP SOME SENSE INTO ME (I still watch it from time to time):
IT'S BENIGN!