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 ImOK on August 27th, 2011, 6:45 pm

You can google astigmatism, it is nothing scary. It just means that your cornea is oval shaped instead of round. So the light bounces off it at weird angles and you get refraction problems sometimes (like double images).

Because of our restricted eye use (computer and monitors cf hunting antelope in the wilds) our eyes do not get the use they were designed for. It has always helped me and many others I know to do eye exercises (yoga eye ex); they force you to use the entire range of motion and this helps the muscles which in turn help shape the eye and combat astigmatism. A few weeks and you will see the difference.
To me, the key to BFS always seems to be "You need to find some way to get your mojo back." I am currently in the process of trying to get my mojo back.

Yes, true for me also. Here's to mucho mojo.
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Re: How you can beat BFS - by a 3+ year veteran

Postby kstoruk on August 28th, 2011, 2:16 pm

1. I fully agree with mario
2. Anxiety and stress do cause changes in the body over time that lead to REAL disease, it took me a long time to realize this, there are recent studies that prove adrenaline modifies DNA.
3. I just pray to god this is reversable and that i didn't trigger anything else ...

PS. My neurologist also told me that if i was dumber i would have no issue.
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Re: How you can beat BFS - by a 3+ year veteran

Postby RandyR on August 28th, 2011, 3:18 pm

ImOK wrote:
You can google astigmatism, it is nothing scary. It just means that your cornea is oval shaped instead of round. So the light bounces off it at weird angles and you get refraction problems sometimes (like double images).

Because of our restricted eye use (computer and monitors cf hunting antelope in the wilds) our eyes do not get the use they were designed for. It has always helped me and many others I know to do eye exercises (yoga eye ex); they force you to use the entire range of motion and this helps the muscles which in turn help shape the eye and combat astigmatism. A few weeks and you will see the difference.
To me, the key to BFS always seems to be "You need to find some way to get your mojo back." I am currently in the process of trying to get my mojo back.

Yes, true for me also. Here's to mucho mojo.



Yoga eye exercises? I had no clue, I will look into it...

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

Postby johnnythejet on August 28th, 2011, 6:56 pm

kstoruk wrote:PS. My neurologist also told me that if i was dumber i would have no issue.

Dude, that is so classic. I'll have to remember that one!
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Re: How you can beat BFS - by a 3+ year veteran

Postby MarioMangler on August 28th, 2011, 8:33 pm

It's true though. You should take a look at the collective IQ of the people on this board. People who get BFS tend to know way too much than is good for them. Why do you think we are all smug annoying know it alls around here? :D
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 johnnythejet on August 28th, 2011, 8:45 pm

MarioMangler wrote:It's true though. You should take a look at the collective IQ of the people on this board. People who get BFS tend to know way too much than is good for them. Why do you think we are all smug annoying know it alls around here? :D

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

Postby Shanny63 on August 28th, 2011, 8:55 pm

Absolutely we are too clever for our own good..
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Re: How you can beat BFS - by a 3+ year veteran

Postby mommylondon on August 28th, 2011, 9:10 pm

Yep we think too much, we know too much, and we analyse everything to death...somewhat dangerous traits to have unless you are studying to be a scientist or something to that effect :lol:
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http://www.youtube.com/watch?v=Rd6BlNKCkRs
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Re: How you can beat BFS - by a 3+ year veteran

Postby chrissi on August 29th, 2011, 12:14 am

Well, this helped me a lot when I was studying science but really did not help me with my anxiety.
"Our anxiety does not come from thinking about the future, but from wanting to control it" Kahlil Gibran
Anxiety is a thin stream of fear trickling through the mind. If encouraged, it cuts a channel into which all other thoughts are drained
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Re: How you can beat BFS - by a 3+ year veteran

Postby MarioMangler on August 29th, 2011, 11:23 am

tiggida wrote:mario, another fellow californian!! i live in the antelope valley.That's not too far from Upland. I don't know why but I feel better the more people I see live near me. Great, Great post. It actually almost made me cry. I needed to read this. Thanks for taking the time to post this.
Tanya


Hey Tanya, wow I didn't know there were any BFSers near me. Let me know if you are ever down in Ontario near Ontario Mills, I work almost right next door to it. Also, sorry about the weather lately. It was 106 degrees in Upland yesterday. At the end of the weekend my skin looked like this -> :oops:
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 MarioMangler on August 29th, 2011, 11:26 am

SuziQ wrote:I think I shared on another thread recently that my husband, who had believed himself cured of bfs for about 10 years, has recently developed leg weakness and said, (to my utter surprise and amusement,) "I think my bfs is acting up."

I find that my symptoms are minimal, for the most part. I can't remember the last time I had a fasciculation; though knowing this silly, goofy li'l syndrome, I'll probably twitch all night long and have a new hot spot tomorrow, just for being c-ocky, tonight. ;)




Yeah isn't it funny how that works? You try to "get your mojo back", and be all c0cky about BFS, and just go on with your life because that is the best way to deal with it. Then of course you get a little -too- c0cky and you overdo something and then it all comes right back. I mean, come on, seriously BFS? Didn't we break up with each other about two years ago? Stop being so f---ing clingy, don't make me get a restraining order.
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 MarioMangler on September 18th, 2011, 8:19 pm

Bumping this to the top because I think it would be helpful for a lot of newbies. Especially those complaining about teeth and neck issues.
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 AndrewS on October 23rd, 2011, 5:51 pm

Hey Mario,

Thanks for posting this. I think it was really important to read something like this. I am a new BFSer (3 months) and a medical student and despite my knowledge base about the phsyiology and symptoms of ALS, I have been finding it very difficult to shed the fear and move on to dealing with my anxiety. I feel BFS is caused (at least in my case) purely by anxiety. That is why the Lexapro worked so well for you and why others have had efficacy with Klonopin. Those drugs are both used for anxiety treatment. Also, it is extremely common for people to feel so good that they prematurely wean themselves off the drug, which it sounds like you did; but who really cares anyway, if you can handle the symptoms without the drug? I refused to take those drugs in the first place, because I didn't want a crutch lol.

Anyway, thanks for this insightful essay and good luck! I will continue to try to focus on finding relaxation and quelling my anxieties.

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

Postby MarioMangler on October 23rd, 2011, 6:33 pm

Thanks Andrew. Let me know if you have any questions about BFS. Even though you have only had it for 3 months, it sounds like you are coming at it from a healthy perspective so I have no doubt you will be able to handle it. To me the key has always been to not make BFS a part of your life. Yes, you have something that most people don't, but it doesn't mean it has anything to do with who you are. The key for me has always been not to let BFS define 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 November 4th, 2011, 6:10 pm

Does the joint/ muscle pain tend to get better with time as well. My twitches don't bother me that much it is more the cramping and soreness that bother me and the thought of having that for the rest of my life is a bit scary.
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Re: How you can beat BFS - by a 3+ year veteran

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