Long Essay Ahead: Beware!

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MarioMasher

Well-known member
Warning, this essay might take a while to read. It's really long. That's what she said.-------------------------------------------------------------------------------------------------
 
PART 1I can still remember my first twitch like it was yesterday.I was sitting in a training class at work one day, in March of 2008. And I noticed that I had a funny little buzzing spot on the right side of my nose. And it was weird too. Just a funny little buzz, like there was a mosquito on my nose. I reached up and I touched it, and there was nothing there. Hmm, that's weird, I thought. I wonder what that is?A few days later, my ankles started to buzz.They didn't buzz all the time. It was only noticeable at the end of the day, after I had been walking around all day. I would sit down in the evening and put my feet up, and after a few seconds I noticed that both my right ankle and my left ankle would start buzzing. In fact, if I paid attention to it, I noticed that it wasn't just my ankles, it was actually the calf muscles all the way up to my knee. Both my left leg and my right leg would just start buzzing at the end of the day.I remarked about my buzzing legs to my wife, and of course she just rolled her eyes. After all, I am a notorious healthophobe. Always have been. By the age of 35, in my mind I had already had (and beaten) lung cancer, brain cancer, AIDS, pancreatic cancer, MS, a brain tumor, lupus, and skin cancer at least nine times. My wife knew better than to take me seriously when I started to point out that I had developed a new symptom somewhere.So I lived with the buzzing nose for a while. I lived with the buzzing legs for a while. I even lived with it when I started to develop "phantom glasses." Do you know what phantom glasses are? That is where you take off your glasses, but you can still feel them on your face. It was the weirdest feeling in the world. I was constantly reaching up to adjust my glasses, yet half the time they weren't even there. By this point, all these weird nerve issues were starting to seriously creep me out. I mean, come on. Some days I would get this shooting feeling of electricity that would go racing up my scalp. Some days my balance just didn't seem to be "right." Some days I would sneeze fifty to a hundred times, for no reason other than the inside of my nose would just feel itchy. And then all of a sudden my dentist suddenly stopped being able to numb my teeth. One day I was a model dental patient, who didn't really mind being drilled at all. The next day it would take me 8x more novocaine than the average person, just to numb my teeth to point I could get a tiny little cavity filled.Within the span of a few months, it was like every little nerve in my body had suddenly gone into overdrive. Everything was racing all the time. My mind was just flying, it was hard to sleep. I started to develop muscle twitches in my arms, my back. My face. My legs. I started to develop really bad back-of-the-head headaches.Well obviously at this point the common sense solution would be "go see a doctor." But I wasn't going to see a doctor. I was through seeing doctors. I had been a healthophobe for so long, I had run to so many doctors over the past fifteen years for what I thought were fatal diseases, that at this point it was borderline ridiculous. No I was NOT going to see a doctor for muscle twitches and weird nerve issues. I was NOT going to let my mind run away with this. No way, I was done with that stage in my life. I was going to let this whole thing play out naturally, and just see where my body was going with it.Well it didn't help. The headaches in the back of my head got worse. The jelliness and buzzing in my legs came back more and more. After a few weeks, I convinced myself that I must have developed a brain tumor.Against all my better judgement, I ran to my doctor. I said please give me an MRI. She gave me an MRI (an open MRI, of course, because you can't be high strung and not be claustrophobic on top of it) and of course it came back negative. No brain tumor. I said to her, well do you think I have M.S.? She said no, her dad died of MS, and this isn't how MS presents itself. She said my symptoms didn't look anything like what her dad had gone through.She said she was going to refer me to a neurologist. Maybe he could help with the headaches and the weird buzzing issues.Um, a neurologist?? Don't people who are only really, really sick go to neurologists? Why was she sending me there, did she think I was dying of something?So I went to the neurologist. I was scared sh*tless. I thought I was going to have a heart attack.He talked to me for about two minutes and he had already made his diagnosis."You have a trapped nerve in the back of your neck," he said. "That's what is giving you headaches. It's probably caused by your posture. You sit at a computer all day and you slouch."But what about the buzzing in my face?"We call that the creepy crawlies. It happens all the time when you have irritated nerves in your neck. The place you feel the buzzing isn't necessarily the place that the nerves are irritated. But it is all connected."He said he was going to send me to physical therapy for my neck. He said go there, get some massage, get some heat treatment, and I bet we will be able to untrap that nerve. And then maybe you will be able to calm down about all this..........
 
PART 2So I went to physical therapy.I thought it would be a nice experience. I thought it would be able to help. But all it did was freak me out a little bit.The very first day in PT, my therapist asked me what sort of symptoms I was experiencing, I said, well my nose is buzzing. She touched my neck in a certain spot and said, "Well is it buzzing now?" I said yes. Oh, and now my forehead is buzzing too. She said well that nerve doesn't go anywhere near your forehead. I said well now my forehead stopped and my left ear is buzzing.And then she said the words that no healthophobe ever wants to hear."WELL YOU OBVIOUSLY HAVE SOMETHING ELSE GOING ON."No! Don't say that to a person like me! Are you f*cking crazy? Don't tell a healthophobe that something mysterious is going on in his body. Something that a trained physical therapist wouldn't be able to identify. At this point I pretty much completely flipped out.She hooked me up to an electrical muscle stimulator (to help loosen my tight neck) and I could practically feel it throughout my entire body. It was like every single nerve in my body was electric. It wasn't a particularly unpleasant feeling (it was actually kind of like a massage), but it was way more intense than I think she expected it to be. I asked her if she could turn it off.That night I went home and I told my wife about what was going on in my body. I told her how it felt like I was charged with electricity from my head to my feet. I told her how frightened I was. I was frightened because I had just looked up my symptoms on the internet, and it said I could have MS.Well obviously my wife is used to my weird little medical panic attacks, so she sort of set me aside and gave me a talking to. She told me to stop looking up symptoms on the internet. You know it never helps, so knock it off. She said just give PT a chance, listen to what my neurologist said, and in a couple of weeks when you relax maybe it will all go away.This was good advice.So I gave PT a chance. I did the exercises. I even endured the electrical stimulation. And you know what? It did help. My headaches eventually went away. Pretty soon I was walking around just like a normal person, without all the excruciating head pain.The only problem was that the buzzing didn't go away. The buzzing never went away. The jelly legs and feeling of electricity never went away. In fact pretty soon it started to develop into muscle twitches. By the end of the summer, 2008, I now had widespread muscle twitches in my arms, my legs, my face, my back, and my stomach. They were everywhere..........
 
PART 3At this point I decided to look up muscle twitches on the internet. I figured, well what can it hurt? I mean, I know that if you have muscle cramps you are supposed to eat more bananas. Maybe there is some little piece of advice some expert can give me that will make muscle twitches go away.So I loaded up Dr. Google and I decided to do a quick little symptom search.Bam. You might have MS.Bam. You might have MS.Bam. You might have Lou Gehrig's Disease.Okay, that last one I just laughed off. Of course I don't have Lou Gehrig's disease. That is pretty much the rarest disease in the world. I knew that because I had been running historical baseball leagues ever since I was about twelve years old. I knew all about Lou Gehrig's Disease, and how few people get it. I knew all about Lou Gehrig's life story. So when ALS came up in the first Google search, I just laughed it off. Yeah, I'm gonna go run to my wife and tell her I have a disease that nobody gets, and that is the scariest disease in the world. I'm sure THAT'S going to go over well.I kept google searching and of course more MS and ALS stuff kept coming up. Of course it wasn't actually people -saying- they had those diseases. It was just page after page of people asking if they -might- have those diseases. In other words, it wasn't really a symptom search at all, it was more like a hypochondriac finder. It was as if I had just asked Google, "Hey please find more people who are exactly like me, thanks!"By this point I had decided I was just going to laugh at my symptoms. It was like, you know, f*ck it. This stuff is annoying me to death, sure, but weird symptoms are always annoying me to death. Why should these bizarre muscle twitches be any different?I had a follow up with my neurologist in a couple of days, and I made a promise to myself. I said, when I go in there, I am going to ask him to laugh at me. I am going to say, "Doctor Ries, could you please just tell me I'm an idiot and tell me to go home? If you call me an idiot I promise I will never bother you again. I promise I will just forget about this and move on with my life."..........
 
PART 4So my neuro appointment came. I went to my appointment and I asked him to call me an idiot.He just laughed."Well I can't really call my patients idiots," he said. "We can't do that, so no.""Can you at least tell me why I have muscle twitches all over?" I said. "And why I have jelly legs?"And this is where he said the words that would eventually change my life."Well there is a syndrome out there called Benign Fasciculation Syndrome...."I ran home and I immediately looked up BFS on the internet. Sure enough, there was a website called bfsforum.com. And sure enough, there was an article called "BFS in a Nutshell" () by some guy named Alonzo Johnson. I read through it and it was like he was talking about me."Holy crap," I thought. "I have benign fasciculation syndrome!"I ran to my wife and said "Hey I have BFS! It's not fatal!""Great," she said, "Now go bring in the trash. It's Monday."It was September of 2008. And thus began my experience in what I like to call "The BFS World."........
 
PART 5The very first thing I did on bfsforum.com was I read through the archives. I saw that there were about eight years of archived material there, and I wanted to see what kind of stuff I was going to be in for. After all, why not? Like I said, I'm a computer programmer. I sit in front of a computer all day. If there is one thing I am good at in life, it is sitting down in front of a computer screen and just reading things.So I dug through the archives. I dug through eight years of bfsforum.com posters and stories and experiences. And do you know what I identified as the most common themes and rules when it came to BFS? Here is a summary of everything you will ever find if you dig through the archives here:1. No, BFS doesn't turn into anything. BFS has never turned into anything.2. Work on your anxiety, and the symptoms will eventually get better3. No you aren't dying.Well okay. That was pretty reassuring. So I'm not going to die? So this will all eventually get better? Sweet.At this point I decided I was going to contact the big man himself. I wanted to get in touch with Alonzo. I wanted to write to the man who had written "BFS in a Nutshell", which had made such a big impact on my life.So I wrote Alonzo, and I introduced myself. I told him a quick summary of my backstory. I told him everything I had learned through the archives. I told him how I figured that if I worked on my anxiety, I could control my symptoms. I asked him if he agreed that that was a good plan for me.I don't remember Alonzo's exact response, but when it came, it was like a decree had been handed down directly from God. He said something like "Wow, you figured it out a lot sooner than most people do. Nice work."............
 
PART 6So anyway, that's where I am now.At this point (in August of 2011) I have had BFS for more than three and a half years. Although if I go back and think about it, I bet I have had it for even longer than that. I have -always- had a very nervous and jumpy body. I have -always- been the type of person who sneezes for no reason, or who is easily startled out of sleep. I have -never- been able to handle jump scares in movies. I have woken up in the middle of the night screaming from nighttime calf cramps for more than fifteen years. My body has "jerked" violently right when I fall asleep for as long as I can remember. In fact, one time it saved my life when I "jerked" back awake right when I fell asleep while driving a car.After three and a half years, I have tried every remedy in the book when it comes to trying to deal with BFS.I have tried vitamin D supplements. They didn't work. Neither did magnesium, garlic tablets, vitamin B12, or Magnesium Asporotate.I have tried VitaSpice, the spice supplement that is advertised every so often here on bfsforum.com, which was developed by a doctor named Keith Scott to help stop muscle twitching. I tried VitaSpace for 5 months. It didn't do anything.I have tried Klonopin, the benzodiazepine which seems to work very well for a lot of people here. I have a prescription for Klonopin, and I take it every so often if I am having a particularly nasty flare up of BFS. It really doesn't do much for my symptoms. All it does is it makes me feel sleepy.I was on Lexapro for about eight months back in 2009. Now, Lexapro is one of the few things that might have actually helped. I was on it for eight months, and towards the end I really wasn't having any symptoms at all. In fact I kind of just weaned myself off of Lexapro at the end because I didn't feel like I needed it anymore. So if there is one drug that I think -might- have helped with BFS symptoms for me, it was Lexapro.For me, the only thing that has ever helped with BFS is the time honored combination of patience, time, relaxation, acceptance, and sleep. Which is funny, because that is pretty much what EVERY old timer in the archives has ever tried to tell people. That is pretty much the only thing that Alonzo has ever said too. That is the message that comes through time and time again when you talk to ANYONE who has dealt with BFS for more than a couple of years.The only true medicine is to learn to relax, to learn not to give in to your panic, and to just live your life.Anything else, and all you are doing is throwing adrenaline on your already frazzled nervous system............
 
PART 7The greatest tool I had in my fight against BFS was a Canadian website called The Anxiety Centre. A poster here by the name of kevintwister turned me on to The Anxiety Centre, and after about two weeks of reading through their members section, I kind of understood what BFS was, and what it was doing to my body. I understood the role that adrenaline and stress chemicals and the body's fight or flight mechanism played in why I was feeling tired all of the time. There was a lot of stuff on that site that you just don't know because nobody ever taught it to us in school.Now a lot of people hear "anxiety" and they just roll their eyes. They think, "No in my case it's not just anxiety. In my case, my symptoms are real."Well my symptoms were real too. My symptoms have always been real. All of our symptoms are real. We are not just hallucinating them.What causes BFS in the first place? Who knows. It could be a virus. It could be an illness. It could be anxiety. Hell, you could have been zapped by a laser from Mars. I doubt we will ever know what causes it. And honestly, I think you are wasting your life away if you are still obessing over the "why" and the "how did it start?" Who cares how it started. All that matters now is that you DO have it, and that it is time to do something about it.What the Anxiety Centre taught me is that BFS is just a catch all term for an overstressed nervous system. What happened is that your body got fried by something at some point in time (virus, nerves, antibiotics, whatever), and it just completely zapped your nervous system. Everything went haywire. Your muscles stopped getting nutrients. Your adrenaline was allowed to run rampant. You got tired more easily and needed more time to recover.All of a sudden these weird and scary things started happening in your body, and what happened is, you panicked. You sent your body into fight or flight mode. This is the survival mode we have had in our DNA since the time we were born, and is based on when our ancient ancestors had to stand up and fight danger, or run away from it. Now, fight or flight mode is a very powerful tool in a human being. By activating it, you can send incredible rushes of energy into your body. You can send enough adrenaline into your muscles to lift a car. You can make your legs fast enough to outrun a dog. It is an amazing and powerful tool.But the problem is... IT IS NOT MEANT TO BE ACTIVATED FOR MORE THAN A COUPLE OF MINUTES.What happens with BFS is that somewhere along the way, you went into fight or flight mode. And you did it too long. You sent way too many stress chemicals into your body, and you completely zapped yourself. And unfortunately, what happens if you zap too much adrenaline into your nervous system is that sooner or later this becomes your new resting state. Sooner or later this becomes your new "normal". Your body feels panicked and jumpy even if your brain is no longer panicked and jumpy.
 
PART 8If you subscribe to the fight or flight theory behind BFS (which I do, and many others do), the solution to BFS, obviously, is "get your resting state back to normal." You have to find some way to get your body to realize you are no longer in danger.Now obviously this is much harder said than done. BFS people (from my experience) are generally way smarter than the average person. We are way more imaginative, we are way more educated, and we have way more knowledge about things like neurological diseases and motor neurons than your average person. This is why doctors often wind up with BFS. You have to know a lot about how the body works to even get BFS in the first place. It is simply not a stupid person's condition.The key to dealing with BFS is you have to learn to shut down that brain. You have to train it not to always be running rampant all the time. This is why the old timers will recommend things like exercise. Or meditation. Or walks. Or activities that keep you busy. Or more sleep. Anything you can do to keep from sitting there and obsessing 24 hours a day over why you are twitching. Because honestly, if all you do is sit there and panic over your twitches all day, you are never going to get better. You are going to twitch for the rest of your life. And yes, in that case it might as well not be called BENIGN fasciculation syndrome anymore. At that point it might as well not be benign, because if you keep up with that pace, the overload of panic and adrenaline and stress chemicals is eventually going to catch up with you.One of the things I always say to keep things in perspective is that BFS doesn't kill anybody. But anxiety and heart attacks do. Just keep that in mind if you decide you are going to panic about BFS every single minute of your life.
 
PART 9One of the things I learned at the Anxiety Centre is that the physical effects of anxiety take seven times as long to go away as they do to appear. This was a survival skill our bodies picked up eons and eons ago, and our bodies have remained like that for a reason. If you are running away from a sabre toothed tiger, your brain wants to be sure it is safe before it stops sending you stress chemicals. Hence anxiety effects can build up very quickly in your body, yet they tend to go away much more slooooooooowly.This is the obstacle that I think a lot of BFS people run into when they are working on their recovery. I think most people figure out eventually that they are causing their own symptoms. But when they relax for a while and nothing seems to happen, they get frustrated and give up. Then some new symptom pops up, they go running to their doctor for another appointment, and then the whole panic cycle starts up again. And then it just becomes a vicious cycle of adrenaline.So here is my suggestion to anyone who is new to BFS and is looking for a way to defeat it. Give it time. Look, your BFS symptoms did not just pop up overnight. There was a slow and steady progression to you being able to completely fry your nervous system, and now you need to give it time to recover. And you need to give it a lot of time. If you have had BFS for three months, you need to learn to relax for more than a year. If you have had nasty BFS for years, you might as well just do a complete lifestyle overhaul. Because these symptoms aren't going to go away right away. It takes time, it takes relaxation, and it takes a lot of mental discipline. In particular, it takes discipline not to always be running to your doctor every couple of weeks.The good news, of course, is that if you start living this way (taking it easy, stopping to smell the flowers, appreciating what you have in life), you are doing two things for your body. Not only are you going to make BFS go away, in effect you will also just be living a more healthy existence. You will probably be sleeping better. You will probably be eating better. You will probably be doing less binge eating, less drinking, and taking less pills. In short, you will be living the life you should have been living in the first place.This is the reason that a lot of old timers will tell you that BFS was "a blessing." A lot of people will say, I hated BFS at the time, but it really opened my eyes to how unhappy I was, and how unhealthy my lifestyle was. Once I started relaxing and sleeping more and not stressing over everything, it really sort of changed my life. I just learned to appreciate life more.
 
PART 10As for me, I went through my "BFS panic" in the summer of 2008. It has never been back.Through the Anxiety Centre, and through meditation, and through just learning to calm the f--- down and not panic over everything, I went through about a year and half where I didn't have any BFS symptoms at all. Seriously, I would go weeks without a single twitch. Oh, I still sneezed a lot. And I am still almost impossible for a dentist to numb. And I still itch even though there is no reason to itch. But you know what, maybe I am just a nervous person. Maybe I have always been like that. Maybe we BFS people are just more susceptible to stimuli than other people.Maybe we have always had hyperexcited nerves, and we just didn't realize it.By the end of 2010 I was ready to pronouce myself "cured" of BFS. I told people I didn't have it anymore. I looked back with embarrassment at all the time I once spent on this board, and how it was practically my lifeline. I told people please don't ever contact me about BFS anymore. I don't want to have to relive that.Then I went back to my life. And I went back to my old habits.I backslid and I started to sleep less. I started writing projects that had me staying up until 3 or 4 in the morning. I started eating more junk food. I started drinking lots of caffeine just to stay awake.And do you know what? The BFS came back.I am now in my second go around trying to get my nervous system back to its normal resting state. But this time it is a lot different than the first. This time there is no panic. This time there is no running to doctors, or googling my symptoms. This time I am just taking it slow, and resting more when I have to. I am exercising more, and sleeping more, and trying to get back to the zen state I had a couple of months ago. Eventually I am going to get back there, but it might take a couple of months. Just like it will take a couple of months for you. Just like it will take a couple of months for everyone.
 
PART 11What is the point I am trying to make with my writeup here?Well the point I am trying to make is that BFS is a lifelong condition. It is something you are going to have for the rest of your life. I know that probably isn't what you want to hear, but it is true. BFS is something you will probably have to deal with for the next fifty years.The good news, of course, is that it really isn't all that serious a condition. On the scale of 1-10, with 1 being "Ha ha, get out of my office loser" and 10 being "Oh my God, you are going to die", if you asked a doctor about the seriousness of BFS, it would probably rank somewhere around 0. In the grand scheme of things, there are just way worse and way more serious things you can find yourself afflicted with. In fact, I am of the opinion that almost everyone on the planet is afflicted with BFS to one degree or another. I just think that a lot of people have hardier nervous systems than we do, and it doesn't really affect them that much.Is BFs going to kill you? No.Is BFS going to turn into something nasty? Of course not. It isn't even physically possible for it to turn into something nasty. How many physicals and check ups have you had recently? Haven't you realized they all say that nothing is wrong with you? Come on dude, it's time to get with the facts. Let's look at reality. Look, BFS isn't a disease. BFS isn't a curse. BFS really isn't even all that big a deal. What it is is a completely natural defense mechanism our bodies have always had, and yet somehow we broke it.Is it fixable? Of course. I am living proof of that, I (and lots of others) have managed to fix it before.How are -you- going to fix it?Well here is my prescription for you. Give it time. Give it rest. Give it patience. Stop obsessing over something that everyone has told you is benign. Oh yeah, and this is the most important part of all. Get the hell off the internet. Go outside and go for a walk. Or read a book. Or go to a brothel. Hell, I don't care. Just find something -other- to do than sit on the internet all day and google and obsess over your symptoms. You aren't doing yourself any favors. It is time to work on your recovery.
 
I really hope this writeup helps somebody. If you have any questions, just post them below and I will do my best to answer them. And yes, even a person with BFS for 20+ years is still going to get flare-ups. Mario LanzaUpland, CaliforniaAugust 25, 2011Kicking BFS in the testicles since 2008
 
Thank you Mario and. Big hugs, you are absolutely correct, in my Case I have had so much stress and anxiety in my life in the last three years that I honestly believe it's true I have fried my nervous system and my body just doesn't know how to calm down...and bfs is a result of that...I am also one of the worlds worst hypochondriacs...it's true if I read about it see it on the Telly or hear about it I run with it...and yes dr google has never helped me or been my friend....I am also working on my anxiety at the moment and am doing cbt with my therapist..and I am exercising everyday even with my jelly legs...thank you again it's so nice to read about someone three plus years into this who doesn't worry themselves silly like I do..it gives me hope that I too will get to a good place with my mind and anxiety too...best wishes...shannon
 
You will be in a good mental place eventually. You have to be, otherwise you will just drive yourself crazy. So yes you will get there in time. Just keep up the CBT. I have heard a lot of amazing recovery stories that all have to do with CBT.
 
I have to agree with the others....this is absolutely sticky material Sir Mario.....fantastic words of wisdom in your post. Newbies would save themselves months of stress and worry if they took every word to heart and followed your prescription to the letter.Thank you and take careRobynn :D)
 
Mario,How long did it take you to write this and when is it coming out in paperback?I can't read it all - forced to sit in front of computers at work, I can only go for a 10 minutes at a time when not receiving payment. But it seems that you have come to a good finale so I salute you and your perseverance (and your wife too); both for seeing it through so doggedly and intelligently and also for taking the time to write it all out for the newbies here. Either you have a good heart, this was self-therapy, or both? It doesn't matter - it was great for you to go to the trouble of posting it all. :p :D)
 

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