How you can beat BFS - by a 10+ year veteran

This forum is for posting your personal experiences with BFS: symptoms, doctor visits, fears, etc.

Please use this forum to post give and recieve encoragement and reassurance from sharing the trials and triumphs you have faced.

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Re: How you can beat BFS - by a 3+ year veteran

Postby x.wokloiz on May 21st, 2012, 11:54 pm

show me these "many cured people" please...
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Re: How you can beat BFS - by a 3+ year veteran

Postby MarioMangler on May 22nd, 2012, 10:28 am

The cure for BFS is mental. You are always going to twitch, even "normal" people twitch. The key is not being crazy about it anymore and just recognizing it for what it is. If you spend your whole life searching for a cause or a cure or a magic elixir you are going to have a very disappointing life.
BFS FAQ:
1. No, that's not bulbar
2. No, the location doesn't matter
3. Yes, we have all had that symptom
4. No, you're not the exception
5. No, that's not ominous
6. No, you don't need an EMG
7. Yes, you will be fine
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Re: How you can beat BFS - by a 3+ year veteran

Postby Mike101 on May 22nd, 2012, 1:49 pm

Hey Mario,

I read your thread a few times and it helped me a lot, i think this is the key for some of us.
It would be nice if you could read my story which i postet yesterday and give me some feedback: New story, new twitcher..
All of the neuros, GPs and therapists i´ve been to and talked with think that this what you are writing here could be the cause of my twitching, i learned some meditation techniques and do them daily, while i do them i mostly don´t feel the twitching as much as normal. I only do them for about 4 months now i think it will take more time to calm down.

One more thing: AWESOME POST!
Last edited by Mike101 on May 22nd, 2012, 4:34 pm, edited 1 time in total.
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Re: How you can beat BFS - by a 3+ year veteran

Postby chicagobfs on May 22nd, 2012, 2:30 pm

MarioMangler wrote: You are always going to twitch, even "normal" people twitch.
:roll: Hope you are wrong:) Also normal people twitch but not 24 hours :twisted: Agree with the rest
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Re: How you can beat BFS - by a 3+ year veteran

Postby MarioMangler on May 22nd, 2012, 4:03 pm

Mike101 wrote:Hey Mario,

I read your thread a few times and it helped me a lot, i think this is the key for some of us.
It would be nice if you could read my story which i postet yesterday and give me some feedback: New story, new twitcher..
All of the neuros, GPs and therapists think that this what you are writing here could be the cause of my twitching, i learned some meditation techniques and do them daily, while i do them i mostly don´t feel the twitching as much as normal. I only do them for about 4 months now i think it will take more time to calm down.

One more thing: AWESOME POST!



I will go read your post now.
BFS FAQ:
1. No, that's not bulbar
2. No, the location doesn't matter
3. Yes, we have all had that symptom
4. No, you're not the exception
5. No, that's not ominous
6. No, you don't need an EMG
7. Yes, you will be fine
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Re: How you can beat BFS - by a 3+ year veteran

Postby x.wokloiz on May 23rd, 2012, 2:39 am

The cure for BFS is mental.

Oh really? So you claim that BFS symptoms are trigerred by mental state only?
You know, when people dont know what exactly happen, they usualy cialm, that cause must be mental (many diseases had mental triggers until they got what is in fact happening)
I dont agree with your post. I think that BFS twiches arent so random, so they must be corelated with something deeper in brain or nervous system has to occur.
The only one mental part of treatment we can deal with is the fact that there is no treament, and we have to learn how to live with this to our death or the time when twitches gone sponntaneously
You are always going to twitch, even "normal" people twitch. The key is not being crazy about it anymore and just recognizing it for what it is.

Man, please... Just replace the word "twitch" with "weird thoughts" and corelate this description with schizophrenia disease.
You are always going to have some weird thoughts, even "normal" people have it. The key is not being crazy about it anymore and just recognizing it for what it is.


"If you spend your whole life searching for a cause or a cure or a magic elixir you are going to have a very disappointing life.

Lol. No i don't. I just want to mark "what it is" and in my humble opinion it is symptom of some nervous damage, caused by some factors we can't explain. So yes, we have to live with it.

If your "cured people" are twitchers, because "all people have it", so there is no cured people.
I just dont agree with the contain of your first post, no matter how nice it is.

Sorry for my bad english though :P.
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Re: How you can beat BFS - by a 3+ year veteran

Postby MarioMangler on May 23rd, 2012, 10:48 am

You can disagree with it all you want, feel free. And I never said that BFS is only triggered by mental causes. What I am saying is that overcoming it is all mental. If you prefer to fight against BFS and struggle with it and obsess about it for the next 3 or 4 years, have at it. Let me know how that works out for you.
BFS FAQ:
1. No, that's not bulbar
2. No, the location doesn't matter
3. Yes, we have all had that symptom
4. No, you're not the exception
5. No, that's not ominous
6. No, you don't need an EMG
7. Yes, you will be fine
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Re: How you can beat BFS - by a 3+ year veteran

Postby mike fla on May 23rd, 2012, 12:08 pm

I'm with Mario on that. I do think there is a mental aspect to this disorder. I think anytime you talk about mental aspects you are talking about your nervous system. I think that whenever we are tense, stressed or anxious the chemicals that are released throughout your neuro and muscular system worsen your BFS symptoms. I think that is why depression and anxiety are so closely tied with BFS. I think they feed off each other and create a viscuous cycle. I think if you are able to calm down and occupy your mind with other things that your BFS symptoms will get better. I am not saying that they disappear but they get more manageable.
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Re: How you can beat BFS - by a 3+ year veteran

Postby chicagobfs on May 23rd, 2012, 12:28 pm

Yes Mario is right that stress only makes ours symptoms worse and is better to live your life than being obsessed about your symptoms. But he is wrong saying that just because somebody is trying to find out what's wrong with his her body is similar with being obsessed and worry about diseases such as AlS. That's two different approaches. Also he puts all of us in one basket and the true is that many of us suffer differently.
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Re: How you can beat BFS - by a 3+ year veteran

Postby mike fla on May 23rd, 2012, 4:22 pm

But Chicago,

The problem is that the vast majority of people on this site are never able to come up with a definitive medical answer as to what is causing BFS for them. Is it autoimmune, digestive, chemical imbalance, nerve function, etc? Furthermore, once that BFS switch turns on it never fully shuts off. The only solace we can take is that the condition is benign. Unless you are one of the lucky ones and find out that your condition is caused by some weird vitamin deficiency, the best step we can take to get better is to learn to control our stress, fear and anxiety. For instance, every time I have a BFS flare up I can point to a time of increased stress/ anxiety. I just came through a few months where I was doing really well with little in the way of symptoms. Now this might sound silly but I am a huge Philadelphia Flyers hockey fan and they stunk it up in their second round playoff series (there were also some other stress issues going on). After that, I spent the next two weeks twitching like a mad dog. The twitching has started to calm down with the help of my friend Klonopin but I am not fully there yet. Thus, I know for a fact that stress and anxiety are a huge trigger for my BFS. If someone wants to say that BFS is caused by a chemical imbalance I would buy that. In this case my stress at the Flyers sucking exacerbated my "chemical imbalance" and made me twitch more.

The point I am actually trying to make here is that if we are constantly seeking an "answer" or "cure" we are not going to start doing the things that can help us get better. I mean think about it. If we believe that we have some horrible disease that will kill us in a year or two, how could we possibly get our stress/ anxiety levels down. Personally, if I still thought I had ALS/MS I would be a nervous wreck and my calf muscles would be popping like piano keys. That is why I think it is critical that I accept that I have BFS and that while it can suck at times, I can still live a happy, productive life. That is what Mario's post is all about and what he is really trying to get across with his message. He found out that the best way for him to get better was to deal with his stress and anxiety and he is sharing that experience with other people. Now you are correct when you say that no two people are alike, but the majority of people on the forum WILL benefit by listening to his advise.
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Re: How you can beat BFS - by a 3+ year veteran

Postby SuziQ on May 24th, 2012, 11:08 am

How arrogant to believe just because one person twitches indefinitely, that the rest will, also. We really have no clue how many of the thousands whom have historically participated in this particular site alone are doing with their fascics today. And this is only one online forum and clearly isn't even remotely indicative of the total number of BFS'ers, world-wide.

My husband HAD BFS. He never twitches now. Not ever.
The only symptom he might occasionally experience is some perceived weakness in the shoulder, which he admits is probably more likely due to neck issues and deconditioning from lack of exercise.

I rarely fasciculate anymore, either. I still occasionally have tremors and perceived weakness when I'm under extreme stress, and every few months or so, I might get a hot spot that lasts a DAY, but otherwise, my fascics are gone.

Mario is spot-on when he says that the victory over BFS happens in the mind, when we get a grip on the anxiety that the nervous hyperexcitability causes in us. Yes, I said that BFS CAUSES anxiety, not just because it is a freaky, mind-effing terrifying nightmare of a syndrome in the beginning, but because when nerves get hyper-stimulated; anxiety ensues, progressing until it becomes over-exaggerated and pathological.

In other words, BFS can be both chicken and egg; cause AND effect, etiology and symptom, where anxiety is concerned. And, since it is well established that this sort of stress only further exacerbates the symptoms of BFS, it can only be logically concluded that overcoming our anxiety can help, considerably to lessen the symptoms.

Anyone with a chronic condition will tell you that more-than-half of their battle is maintaining a positive attitude. We can either choose a "woe is me" mentality and live a self-fulfilling, miserable existence, or make up our minds to be as happy and grateful as we can muster.

Ultimately it IS a choice, and some days are admittedly darker than others. But if far less fortunate people than ourselves can grab life by the genitalia and live joyously, than what could EVER be our excuse?

Blessings,
Sue
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Re: How you can beat BFS - by a 3+ year veteran

Postby mike fla on May 24th, 2012, 12:59 pm

I will amend my statement and apologize if I came off as "arrogant". I am sure there are people out there who had BFS symptoms and that their symptoms stopped completely. Perhaps some of them actually did find that magic bullet of medication and treatment that "cured" their symptoms. What I have gathered on this forum and other websites is that there are a lot of people that continue to have some level of BFS for the rest of their lives. Furthermore, how many people on this forum can point to a medical answer to what is causing and how to cure their BFS? Medication could play a role in helping them deal with their conditions. However, if you go do all those tests and get your EMG's and all you doctors tell you its just BFS then what do you do? Do you spend years looking for or obsessing about finding that medical answer to your problems? At what point does that become counterproductive and do you actually make your symptoms worse? In terms of the correlation between anxiety and BFS I completely agree with what you are saying. In my opinion it is a viscuous cycle where each reinforces the other. In my case, I think that a combination of a bad reaction to medicine and an associated increase in anxiety started my BFS problems. For me, the key to getting better was to accept my BFS diagnosis, work to deal with my anxiety and stress levels, continue to exercise, take some medication as needed (klonopin) and move on with my life. Personally, I think that is not bad advice for people on this forum.
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Re: How you can beat BFS - by a 3+ year veteran

Postby SuziQ on May 24th, 2012, 3:42 pm

Actually, Mike, I wasn't talking to you or calling you arrogant. If my response seemed to single you out, I apologize.

Blessings,
Sue
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Re: How you can beat BFS - by a 3+ year veteran

Postby highpriority4 on June 14th, 2012, 8:50 am

Awesome Awesome Awesome Mario!!

Guess what? You are SO RIGHT, here I am....Round 2 has begun. *sighs*

~*~Amy~*~
Aint no, rhyme or reason, no complicated meanin'
Aint no, need to overthink it, let go laughin'
Life dont go, quite like we planned it, we try so hard to understand it
Irrefutable, indisputable, absoluteable, totally beautiful fact is, Psssh
It happens...
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Re: How you can beat BFS - by a 3+ year veteran

Postby pdodge715 on August 4th, 2012, 12:30 pm

Fantastic post Mario - thank you for taking the time to write it! I am about 6 weeks in with a normal EMG at the 3 week mark, but a less-than-sympathetic neurologist who has left me with some residual fear (explained in more detail in my most recent post). Heartfelt, comforting posts that come from personal experience like this one are what drew me to aboutbfs initially and what has kept me perusing the forums ever since. Thank you so much.

- Patrick
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Re: How you can beat BFS - by a 3+ year veteran

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