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Will this ever stop? (how long are you twitching?)

PostPosted: May 3rd, 2014, 2:55 pm
by Antologia
Hi there,

Just started this new thread, because I'm simply wondering: does it ever stop?

I have been twitching now for almost a year (it started the 23th of May 2013). Since that day, I have been twitching 24 hours a day, almost every 2 or 3 seconds. It's driving me crazy. When I'm busy, I don't feel it that much, but as soon as I'm relaxing in the sun, or in the evening when I lie in my bed, I feel the twitching everywhere and every time. Today my whole toe was moving because of it.

I really hate it. Is this how the rest of my life will be? I'm 37, the thought that this twitching will stay here forever is getting me depressed.

What are the experiences here? Does it ever stop? And if not, how do you all cope with that?

Re: Will this ever stop? (how long are you twitching?)

PostPosted: May 3rd, 2014, 7:19 pm
by ShawnW
The only reason it bothers us is because we assign it value. We allow it to imprison us in fear. They don't hurt. When I'm not anxious sometimes I can even find myself amused watching them. As long as it's just twitching I will consider myself blessed because honestly there are people out there with some real life threatening diseases. That's not to offend anyone here because I know the mental anguish this can causes us. But, sometimes I feel a bit like a spoiled brat when I complain about a twitch.

Re: Will this ever stop? (how long are you twitching?)

PostPosted: May 3rd, 2014, 7:33 pm
by RobJ
sorry to say, some of us, it never stops.

20+ years still twitching............

Re: Will this ever stop? (how long are you twitching?)

PostPosted: May 4th, 2014, 9:06 pm
by SecretAgentMan
I personally believe that it can stop for many if not all, as long as the right measures are taken. Those measures will be different for each individual depending on what they personally have going on that led to the onset of symptoms in the first place. I believe this to be true because myself and a few others have been able to overcome BFS. The key I believe is in achieving balance where there is imbalance in mind, body, and spirit. It was not easy in my case, but it was doable.

Re: Will this ever stop? (how long are you twitching?)

PostPosted: May 5th, 2014, 12:58 pm
by veryworried123
i feel the same way

when will this ever stop?

i feel like if was a few times a day i would feel good


but hundreds and hundreds times a day!

Re: Will this ever stop? (how long are you twitching?)

PostPosted: May 5th, 2014, 6:30 pm
by MarioMangler
It will either stop or die down to nothing, or you will grow so used to it you won't really care anymore. One way or another it always gets better.

Re: Will this ever stop? (how long are you twitching?)

PostPosted: May 13th, 2014, 1:24 pm
by seventhcandle
Antologia wrote:Hi there,

Just started this new thread, because I'm simply wondering: does it ever stop?

I have been twitching now for almost a year (it started the 23th of May 2013). Since that day, I have been twitching 24 hours a day, almost every 2 or 3 seconds. It's driving me crazy. When I'm busy, I don't feel it that much, but as soon as I'm relaxing in the sun, or in the evening when I lie in my bed, I feel the twitching everywhere and every time. Today my whole toe was moving because of it.

I really hate it. Is this how the rest of my life will be? I'm 37, the thought that this twitching will stay here forever is getting me depressed.

What are the experiences here? Does it ever stop? And if not, how do you all cope with that?


Hi Antologia. I am sad to say, no, this may never stop. Several neurologists agree that BFS is more of a way the muscles are and that we BFSers have a certain muscular anatomy that makes it easier for our muscle to twitch. All people have muscle twitches. Most people don't notice it enough to bother them and for many non BFSers, their Fasciculation Potential threshold is high enough to where they rarely get noticeable twitches, but trust me, their muscles are also twitching, just not on a noticeable level. Our genetics and anxiety make us twitch more noticeably. And it is *beep* annoying. I am nearly two years in to this nonsense and every day is the same, more or less. Like you, I noticeably twitch every few seconds throughout the day. Mario is right, however...for most, it will get better over time, but not go away completely...the more you can take your mind off of it, the better. And if you really can't hack it any more, there are some meds out there that MIGHT reduce your fasics, among them Klonopin (short term only), Lamictal, and Tegretol, but there are no guarantee with meds either. Our muscles are likely genetically pre-wired to twitch more easily and some event triggered the "syndrome" to where we get these twitches more noticeably and frequently and it set off a domino effect throughout our whole nervous system. Containing your anxiety and occupying yourself with activities that make you happy are about all you can do. Sorry buddy...I think I twitched about 60 times just writing this post.

Re: Will this ever stop? (how long are you twitching?)

PostPosted: May 13th, 2014, 11:12 pm
by muppetdog
It could go away. don't lose hope :) Just remember everyone is different. When someone says that you are stuck with it for life, that is just their lot, not yours.

Have a good one.

Re: Will this ever stop? (how long are you twitching?)

PostPosted: May 14th, 2014, 2:36 pm
by switched
30 years, off and on (see my other/first post here on this forum).

Started when I was 14 :evil:

Re: Will this ever stop? (how long are you twitching?)

PostPosted: May 20th, 2014, 8:58 am
by Antologia
Thanks for all those reply's people. It's true that as long as you twitch, you will always have ALS in your mind. Not if you twitch for 10 years, I guess, but when you twitch 1 or 2 years like me, you do.

I still hope it will stop someday, but I don't think it will...

Re: Will this ever stop? (how long are you twitching?)

PostPosted: May 21st, 2014, 3:34 pm
by MarioMangler
Antologia wrote:It's true that as long as you twitch, you will always have ALS in your mind.



Well that's the part that really needs to stop. Remember, your enemy when it comes to BFS isn't the twitching. The twitching is meaningless. Your enemy when it comes to BFS is your interpretation of the twitches. If you can find some way to stop thinking about ALS every time you twitch (which isn't really that hard if you work at it), then you are 90% of the way cured.

Re: Will this ever stop? (how long are you twitching?)

PostPosted: May 28th, 2014, 5:32 pm
by BFSBurger
It stopped for me. Im starting to lose track now how long I had it, but it was I believe about a year. Maybe year and a half.

But I made major, major lifestyle changes.

I noticed that after certain meals, my symptoms would increase a bit. If I had some calm before I ate, within an hour or three, I'd be twitching like crazy. Then it would seem to reduce a certain percentage as the hours rolled by.

It didn't make any sense. Why would my footlong at Subway make me twitch more? Nonsense, of course :)

But certain meals did kick things up a notch. So I started an elimination diet, determined which things (including drinks) didn't trigger an up-tick in symptoms, and added them to my "blacklist".

Ate only the things which didn't illicit a response. Then began a whole-lifestyle anti-inflammatory pursuit. Not just dietary but emotional, physical therapy related, and mental.

Good luck

-B-