Facebook Group for BFS Sufferers

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.

Moderators: JohnV, Arron, garym

Re: Facebook Group for BFS Sufferers

Postby angusglover on June 15th, 2009, 2:28 pm

highpriority4 wrote:
Threesome? Hmmmm...... **thinks about this** :wink:



I find 3 such an awkward number, now 4 is a good number.."cough"..;-)
"If you can read this, thank a teacher....and since it's in English, thank a soldier"
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Re: Facebook Group for BFS Sufferers

Postby twin2 on June 15th, 2009, 3:55 pm

I have always given my husband props for being the world's best lover. But lately something is missing. Oh yeah--twitches!!

Twitchers are sexy! :wink:
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Re: Facebook Group for BFS Sufferers

Postby highpriority4 on June 15th, 2009, 4:23 pm

angusglover wrote:
highpriority4 wrote:
Threesome? Hmmmm...... **thinks about this** :wink:



I find 3 such an awkward number, now 4 is a good number.."cough"..;-)


FOURSOME!!!!! So I really dont have to settle for 5? **doin a little dance**
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: Facebook Group for BFS Sufferers

Postby monr905 on June 15th, 2009, 8:26 pm

ed73 wrote:"DISABILITY" WTF!!!!!!!!!!!!!!!!!!!!!!!

BFS a disability, my balls!!!! who the hell said that? where's the proof about it? Honestly I wanna read it!
Word of advise, be careful when choosing words, people here, particularly the new ones are kind of anxious and panicky, so don't get them on "disability mode" for no reason!!.

Finally , even if BFS is a Disability, which it is not, I really love my disability because :

1. Im a disabled 35 yrs old man that runs 5 kms daily.
2. My disablity made me lift weights even better and harder than when I was 21! love my BFS!
3. Thanks to my disability I was able to conquer my anxiety issues that linger for so long in life. Im experiencing the best mental shape of my life, I apply everything that BFS teached me into every aspect of my existence. The mental tragedies are over, I self-indulge into healthy thought patterns only.Worry? What the hell does that word means?????

Good luck and don't worry, some time soon you'll be glad you have JUST BFS!


And remember, there's nothing that a Heineken plus a bong cant cure!!!


Eduardo,



Well Eduardo,

That has to be the most passive-aggressive :evil: response I have ever seen
on a forum that has been so supportive and understanding. :D

Simply advising me that there was another Facebook group would have
been fine.

I didn't mean to offend you with my use of the word "disability".
In my opinion, this "syndrome" has been a disability as it has
prevented me from living a full, normal life as the physical
symptoms create an unbelievable amount of anxiety :( for me.
If I could control the fasciculations or the resulting anxiety, I would.

My post was simply meant to bring a bunch of people together with
the same type problems on a different type platform.

I applaud you for getting your anxiety under control with this, and
I pray someday, I am as strong-minded as you when it comes to this
topic.

I mean and meant no disrescpect, nor do I believe I deserved such a
harsh response.

An last, adding an alcohol and drug problem would cure nothing for me. :roll:

Respectfully,

Anthony "MONR905"
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Re: Facebook Group for BFS Sufferers

Postby twin2 on June 15th, 2009, 10:03 pm

Hey Anthony. I hope you will stick around the board and the Facebook website. You never know if your contribution to the site may be just the help someone needs.
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Re: Facebook Group for BFS Sufferers

Postby ed73 on June 16th, 2009, 10:43 am

Anthony,

My most sincere apologies if my reply was harsh or disrespectful, it wasnt my intention but I honestly stand for what I said.

The first thing you want to change about BFS is the way you react to your symptoms. Thats the whole key about it. Let me ask you ¿ How many times do you breath per day? I guess you dont have a clue about it, why? simply because you arent focus all day on your breathing. This same concept you can use it with BFS, the mental approach means everything with BFS.

Soon enough youll find yourself absolutely detached from the self-inflicted suffering implied in thinking over and over again the same absurd thoughts; for instance Anthony, let me give you some examples of how unhealthy my thinking patterns were a couple of months ago :

They were a grueling obssession like this :

- Death, death, death.
- Who is going to look up for my kids?
- Im desperate, my body has developed an uncurable pseudo-neurological/mental condition !!!!!!!!
- Nobody knows anything for sure about this BFS crap, not even trained neurologists, Im doomed for life!!!!!
- OMG, its getting worse and worse!!!!!!!!!

But then, I had an epiphany ! I was slave of my own mind, that was it!, so the only way out was simply tricking my mind into other type of thinking patterns, it was a matter a having a mental habit the other way, slowly I replaced my thoughts with new ones :

- Yes, I twitch, tingle, buzz, so what?
- Does BFS prevent me from doing anything I like? No, so I better be enjoying everthing I love to do instead of whinning and complaining about something that I cant change.
- Im alive and healthy , period, I assume this as an absolute truth!
- It feels so good to be able to let go so much pain and suffering!!!
and so on.....

You mentioned anxiety, let me share with you some things that helped me a lot:

- CBT therapy.
- Medication. There a plenty of options for short or long term management of anxiety, talk to your GP or you can even think about getting help from a psych.
- Relaxation techniques, a basic tool for managing anxiety.
- A healthy diet.

And always remember Anthony, BFS always get better with time, just check the 7+ years of archives of the board. You wont be the exception, be positive about that.

Finally about the bong joke, why on earth you didnt mentioned that you were a police officer!!!! me and my big mouth!!!


Relax, Laugh and live!!!!!!!!!!



The best wishes for you and your loved ones,


Eduardo
PROUD AMBASSADOR OF THE BFS COMMUNITY IN COLOMBIA
TWITCH PRO SINCE JUL-08
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Re: Facebook Group for BFS Sufferers

Postby monr905 on June 16th, 2009, 12:31 pm

Finally about the bong joke, why on earth you didnt mentioned that you were a police officer!!!! me and my big mouth!!!


Relax, Laugh and live!!!!!!!!!!



Thanks for the great response. I think I over-reacted. :oops:

And... you use that bong to smoke tobacco!!! No worries! :lol:

Thanks again for the great ideas.

Anthony
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Re: Facebook Group for BFS Sufferers

Postby lindahcohen on August 5th, 2009, 1:37 pm

Ed -

What is CBT?

Anthony-

If you're a police officer you most likely love it when things are by the book - you like total control. Which will be a major contributor to BFS freaking you out. That's my major issue. I don't like it when things aren't organized. When one thing is out of place or not perfect I go out of my mind trying to fix it. If you're the same, spending that much energy on your BFS will disable you, just like spending that much energy on anything would.

Learning what your new "normal" is just takes time. Read the posts, share on facebook, and become involved in things that take your mind off the disabling aspects of this ... and sooner rather than later you'll find that it's not consuming your life.

Unless you start partying too hard with some of the folks here, in which case all bets are off!
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Re: Facebook Group for BFS Sufferers

Postby Giaynee on November 2nd, 2009, 4:28 pm

I thought this forum is for BFS not for this trash!
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Re: Facebook Group for BFS Sufferers

Postby twin2 on November 2nd, 2009, 10:04 pm

Yikes! Try not to judge. We all deal with stress in different ways. This board is a safe place to blow off steam.
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Re: Facebook Group for BFS Sufferers

Postby paulhp on July 13th, 2012, 4:34 pm

ed73 wrote:Hi everybody, specially you dear monr905,


Well , haven't really posted in quite a while b/c seriously,its kind of hard talking about something that you don't really care any more. Thats BFS for me right now, a ZERO, NO, 0% ISSUE. It doesn't even exist in my mind.

News flash for you monr905 :

1.
monr905 wrote:I created a group on Facebook and here is the link:


Well , there is one already :

http://www.facebook.com/home.php#/group ... 4362369233

2.
monr905 wrote:I figure the more exposure this disability gets the better people will understand.


"DISABILITY" WTF!!!!!!!!!!!!!!!!!!!!!!!

BFS a disability, my balls!!!! who the hell said that? where's the proof about it? Honestly I wanna read it!
Word of advise, be careful when choosing words, people here, particularly the new ones are kind of anxious and panicky, so don't get them on "disability mode" for no reason!!.

Finally , even if BFS is a Disability, which it is not, I really love my disability because :

1. Im a disabled 35 yrs old man that runs 5 kms daily.
2. My disablity made me lift weights even better and harder than when I was 21! love my BFS!
3. Thanks to my disability I was able to conquer my anxiety issues that linger for so long in life. Im experiencing the best mental shape of my life, I apply everything that BFS teached me into every aspect of my existence. The mental tragedies are over, I self-indulge into healthy thought patterns only.Worry? What the hell does that word means?????

Good luck and don't worry, some time soon you'll be glad you have JUST BFS!


And remember, there's nothing that a Heineken plus a bong cant cure!!!


Eduardo,


love no2 quote i have also suffered since aged 17 ...... now 20 years later i am running 16 miles a week and still twitch like mad but it has def made me stronger
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Re: Facebook Group for BFS Sufferers

Postby beausoleil1 on September 9th, 2012, 7:50 pm

CBT is Cognitive Behavioral Therapy.
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Re: Facebook Group for BFS Sufferers

Postby jerry2 on September 10th, 2012, 2:07 am

My BFS is disability. If I can not function cognitively without thinking about it and being disturbed by it without my own will, I would say it is disability.

I can not run or ski because of foot pain, I hardly dance and have hard time in any not super extra wide shoes. This is not disability?

I can not lift any heavy stuff because my hands hurts. I can not sleep because of the twitches and pain sometimes.

I would say unfortunately that I am disabled in many ways by this.
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Re: Facebook Group for BFS Sufferers

Postby RachelLee on March 1st, 2014, 9:24 pm

Yeah, I don't think I would call it a disability, I mean...that's like calling depression and anxiety a disability. It's more of a disorder. I'm 20 years old, former ballet dancer, and it never hindered my dancing. I still work out and dance when I can. I go on long bike rides, I swim in the summer, I hike. In other words, I'm extremely active and the picture of health...it's just I twitch all over my body. Sometimes a lot, sometimes not. It comes and it goes. It's random and weird, and I've had moments of extreme anxiety and fear because everyone around me says that only RARELY happens to them. I'll notice my muscles twitch a lot after working out, but sometimes I'll be sitting down or lying down, or trying to sleep and it starts acting up. It's just random. And causes anxiety with me. But that's as much as a disability as it gets. Now, if it were like IBS (irritable bowel syndrome) like my boyfriend has, that would be a completely different story. I can understand why you can refer to that as disabling, because that condition is debilitating when it acts up and can really get in the way of a normal day. :/
"For God hath not given us the spirit of fear; but of power, and of love, and of a sound mind."
2 Timothy 1:7
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Re: Facebook Group for BFS Sufferers

Postby nervous nel on April 2nd, 2014, 4:45 am

Do you have tongue twitches racheal? x
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Re: Facebook Group for BFS Sufferers

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