wiftSwiftquill
Active member
Hi my fellow BFSers,I just got to realize that it must have been around this time of the year when I experienced the first symptoms one year ago....don't get overexcited for the title like some did with the now somewhat famous 'Tobes-story' (in case you don't know, just search the archives...or better, if you're faint-hearted, don't), but just couldn't help myself... 
Almost exactly one year ago, I stepped off the fitness bike and my calves went crazy.From there on I got to experience first-hand what thousands of other members of this forum had reported on before.Increased and ever more spreading twitching, after 3 months or so pretty much everywhere. More and more musculuar issues, first, increasing muscle ache after only moderate strain and after a while very severe muscle pain that had me pretty much couchbound for several weeks.It was pretty bad and I thought this was about it in this life.To make things worse, the 'Tobes-story' happened to me. Basically, I was treated very badly by incompetent Neurologist-wannabes and was served the anxiety shocker of my life. And I have collected a few of those, but absolutely none as bad as this particular incident.They wore their nice white coats, looked pretty important and never ever even considered that they might be wrong or way out of their element. *beep* and incompetent.And all this happened to me. And not to some other person you read about in a news magazine, or on strange internet forums. Me, personally in the middle of a surreal nightmare.After the real doctors set things right I chose to take the good advice of so many veterans in the forum and get the hell out of here and tried to stay away.And - surprise! - this has done me a lot of good.In the first couple of months after the thumbs-up diagnosis I was battling hard with raging ***-anxiety. I just couldn't get myself to believe that they were right but the others wrong.Typical anxiety behavior, you're readily prepared to accept the bad news but can't get yourself to believe the good news, quite a perception bias.But then, ever so slowly, I started to feel better.The twitching subsided somewhat, my muscles could be strained more little by little.Then, in March, I did the therapy Chrissi has reported on (search the archives) and this also did me a whole world of good.By the way, this seems to be a good moment to tell Chrissi that she is absolutely THE BOMB!! Or THE S.IT....like my American buddies used to say...Thanks for everything and it was fantastic having all of you around last week...let's do something like this soon again!!! 
Anyhow, it didn't cure me completely and it was a tough time because back then I still had quite some muscle ache. But ever since I have felt better and better.During the last two months there were occasionally entire days during which I really didn't notice any twitch, at all.I started doing some sports again, rode my bicycle, made longer walks, again. Nothing like what I was used to back in the good days but I have to say from an everyday-life perspective I have no physical limitations or any really bothering symptoms at this point.I am almost back to normal.And no, no atrophy, no weakness, no paralysis, no muscular asymmetry, no weight-loss. And this 8 months after I reveiced the ALS-diagnosis. Figure yourself.But, it's not all gone and forgotten. I had a pretty harsh and stressful time in my job lately and just like so many veterans have said before, stress really brought the symptoms back.Right now, I have more twitching like I have had for more than 4 months. In my calves, my hand, my lips.But you know what...it doesn't bother me in the least.Fortunately, I have no muscle problems going along with it and so I just try to take it as a message from my body to reall slow the f..k down again and go back to the good nutrition, the good sleep and the good stress management.It is quite astonishing to realize how fast one can forget about even such extreme experiences and just fall back to old bad habits.So, there you have it.In the beginning, I received a lot of help from this forum and from the many great people spending quite somne time and energy to help out others in the same situation they experienced some time back.I had started a thread collecting success stories from people who had reached the point where they got better and had learned to deal with this condition.That was extremely helpful and uplifting and really inspired some hope in me.But then, reading around in the forum became more and more of a real emotional burden for me, as I of course had a strong tendency to over-perceive negative postings, filled with other people's terrible symptoms and anxiety charged comments.Of course, I was one of them.Then I tried what so many veterans strongly recommend. Go away and stay away until you have found some normality and have learned to deal with BFS in a reasonable fashion.I'm not tricking myself into believing that I'm over it forever and that BFS will eventually just go away. But for the time being I am really okay with it. Let it twitch, let it hurt. It will wax and wane. It will come...but then it will also go away, again. The more I relax, the better I live, the more 'Going-Away' will happen.Sounds familiar....?So, after all, after on year, at least, I just seem to be your regular BFS-guy next door. And, although nobody can promise you this, chances are, you are, as well. Even when some idiot doctors tell you otherwise. If you need even more reassurance, I highly recommend my old success stories thread:Be well everybody and get better soon!Tobes
Almost exactly one year ago, I stepped off the fitness bike and my calves went crazy.From there on I got to experience first-hand what thousands of other members of this forum had reported on before.Increased and ever more spreading twitching, after 3 months or so pretty much everywhere. More and more musculuar issues, first, increasing muscle ache after only moderate strain and after a while very severe muscle pain that had me pretty much couchbound for several weeks.It was pretty bad and I thought this was about it in this life.To make things worse, the 'Tobes-story' happened to me. Basically, I was treated very badly by incompetent Neurologist-wannabes and was served the anxiety shocker of my life. And I have collected a few of those, but absolutely none as bad as this particular incident.They wore their nice white coats, looked pretty important and never ever even considered that they might be wrong or way out of their element. *beep* and incompetent.And all this happened to me. And not to some other person you read about in a news magazine, or on strange internet forums. Me, personally in the middle of a surreal nightmare.After the real doctors set things right I chose to take the good advice of so many veterans in the forum and get the hell out of here and tried to stay away.And - surprise! - this has done me a lot of good.In the first couple of months after the thumbs-up diagnosis I was battling hard with raging ***-anxiety. I just couldn't get myself to believe that they were right but the others wrong.Typical anxiety behavior, you're readily prepared to accept the bad news but can't get yourself to believe the good news, quite a perception bias.But then, ever so slowly, I started to feel better.The twitching subsided somewhat, my muscles could be strained more little by little.Then, in March, I did the therapy Chrissi has reported on (search the archives) and this also did me a whole world of good.By the way, this seems to be a good moment to tell Chrissi that she is absolutely THE BOMB!! Or THE S.IT....like my American buddies used to say...Thanks for everything and it was fantastic having all of you around last week...let's do something like this soon again!!! Anyhow, it didn't cure me completely and it was a tough time because back then I still had quite some muscle ache. But ever since I have felt better and better.During the last two months there were occasionally entire days during which I really didn't notice any twitch, at all.I started doing some sports again, rode my bicycle, made longer walks, again. Nothing like what I was used to back in the good days but I have to say from an everyday-life perspective I have no physical limitations or any really bothering symptoms at this point.I am almost back to normal.And no, no atrophy, no weakness, no paralysis, no muscular asymmetry, no weight-loss. And this 8 months after I reveiced the ALS-diagnosis. Figure yourself.But, it's not all gone and forgotten. I had a pretty harsh and stressful time in my job lately and just like so many veterans have said before, stress really brought the symptoms back.Right now, I have more twitching like I have had for more than 4 months. In my calves, my hand, my lips.But you know what...it doesn't bother me in the least.Fortunately, I have no muscle problems going along with it and so I just try to take it as a message from my body to reall slow the f..k down again and go back to the good nutrition, the good sleep and the good stress management.It is quite astonishing to realize how fast one can forget about even such extreme experiences and just fall back to old bad habits.So, there you have it.In the beginning, I received a lot of help from this forum and from the many great people spending quite somne time and energy to help out others in the same situation they experienced some time back.I had started a thread collecting success stories from people who had reached the point where they got better and had learned to deal with this condition.That was extremely helpful and uplifting and really inspired some hope in me.But then, reading around in the forum became more and more of a real emotional burden for me, as I of course had a strong tendency to over-perceive negative postings, filled with other people's terrible symptoms and anxiety charged comments.Of course, I was one of them.Then I tried what so many veterans strongly recommend. Go away and stay away until you have found some normality and have learned to deal with BFS in a reasonable fashion.I'm not tricking myself into believing that I'm over it forever and that BFS will eventually just go away. But for the time being I am really okay with it. Let it twitch, let it hurt. It will wax and wane. It will come...but then it will also go away, again. The more I relax, the better I live, the more 'Going-Away' will happen.Sounds familiar....?So, after all, after on year, at least, I just seem to be your regular BFS-guy next door. And, although nobody can promise you this, chances are, you are, as well. Even when some idiot doctors tell you otherwise. If you need even more reassurance, I highly recommend my old success stories thread:Be well everybody and get better soon!Tobes