New here, my experience and what triggered it

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New here, my experience and what triggered it

Postby Brozers on October 5th, 2013, 12:49 am

Hello,

I am new here, been reading all your experiences before. My story is not different from many of you, so I'll try to keep it short.

I am 37, spanish, but living in Tokyo, Japan. As you know, two years and half ago, there was a big earthquake, and later a tsunami came, and there was a nuclear plant accident that still causes trouble and concerns to everybody. I was here. So I lived all this from the capital, by far not as bad as up north in the cost, but still, it was really scary. I was in a big and tall office building, that I thought would collapse, on my knees because I could not stand up with all that movement.

So well, it was one of those very few moments you think this is it... the end. It was not. The building was OK, we all went out, then walked home for 17 km. The subsequent nuclear plant issue and all my family and friends asking me to fly out asap, was really a lot of stress on me. My wife didn't want to leave, and there was no way I was leaving without her, so I stayed. My first twitches started a few days after all this, first in my eye... later in my mouth, very slow movements that scared me a bit. But they went off a few minutes later. After that, legs... arms, neck, shoulder, toes... you know the story very well.

I went through the ALS fear as most of you, MS... two doctors told me I was OK and did not need an EMG because I didn't show any muscular issue nor clinical weakness. That was the worst moment... could not sleep, my fingers, hand, legs, and here and there, all my body was twitching strongly every 5 seconds, I felt like I was being boiled. I feel like crying just remembering how frightening and scary that was. Never felt like that before in my life. Somehow, forced myself to trust the doctors, and slowly, started to recover. First psychologically, then physically. Quitted coffee (had 3, 4 or 5 cups per day), quitted fast food started mild sports... 3 km runs 3 or 4 times per week, go to work by bicycle about 30 km round way, 1 or 2 times a week. It helped that when I run, when I move, the twitches go away. So I didn't stop. And, overall, tried everything to STAY CALM. Trust myself when I say I am OK even if I feel weird. Relax. Take it easy. Control my nerves.

Today, I can say I am mostly recovered. I feel very small twitches every 3 or 4 hours... and very small, just 2 or 3 seconds or even just a little shake, and that's it. Some days, I don't even feel one. I can sleep well now. I can watch a movie without thinking about my twitches. I feel normal. Healthy... still, I feel like electricity running along my nerves. It is very difficult to explain... feel the nerves send the electric order to move a muscle but it doesn't happen now. I guess I still need to recover more. This is a long fight, not something that gets well suddenly and the moment you start to give a *beep* about your twitches and concentrate on living your life, you start getting better. At least, it was like that in my case.

I won't say I cam cured, because I was not ill before, neither am I now. Sometimes, the twitches flare up for a while, when I get stressed, or have a serious discussion. I take it as a chronic nervous problem that requires me to learn to stay calm whenever possible. It's hard to calm down sometimes. But I can say at BFS has taught me to eat healthier (I have everything, just normal, but care about having more vegs or fish, fruit too) and have a more active sporty life. And I like it.

So this is it. Just wanted to give strength to those who still fight to get better and control the symptoms. This forum has helped me a lot to understand, control and keep going on with my life. I don't know who started this forum but wherever you are, thank you. Thank you, and all the BFS affected people here, for helping me. What you do here is invaluable.
Last edited by Brozers on October 5th, 2013, 10:29 pm, edited 1 time in total.
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Re: New here, my experience and what triggered it

Postby lrt6131 on October 5th, 2013, 5:56 am

I am hoping my ending is a lot like yours--stress related. I didn't realize all the pressures I had in my life until these twitches came on. I too am trying to remain calm as best as possible & not let it control my life & keep my negative thoughts in check.
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Re: New here, my experience and what triggered it

Postby StressLess on October 5th, 2013, 9:49 pm

I'd say this is the best advice possible. 3 months ago I started twitching in my calves and feet - probably close to 200 per minute. I freaked out for a couple of weeks and then decided to keep my mind in check. I learned to not fear those thoughts about horrible diseases - to just let them float through my conscious without the fear. Today, I can say my twitching is 5 percent of what it was. I might get 10 a minute now, less on some days, more on others. But I believe controlling the mind is the only reason I've managed to get better. I'm hoping one day I'll be back to normal, but at this stage, it doesn't bother me that much, so what ever happens, happens.
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Re: New here, my experience and what triggered it

Postby Brozers on October 5th, 2013, 10:32 pm

lrt6131 wrote:I am hoping my ending is a lot like yours--stress related. I didn't realize all the pressures I had in my life until these twitches came on. I too am trying to remain calm as best as possible & not let it control my life & keep my negative thoughts in check.


It's so easy to underestimate how harmful stress can be, because our body can endure quite a lot of it without consequences. Then, when something bad happens like BFS, we notice all the pressure we've been under.

Do stuff you like. When you do something you really like, it becomes easier not to mind about twitches.
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Re: New here, my experience and what triggered it

Postby Brozers on October 5th, 2013, 10:33 pm

StressLess wrote:I might get 10 a minute now, less on some days, more on others. But I believe controlling the mind is the only reason I've managed to get better. I'm hoping one day I'll be back to normal, but at this stage, it doesn't bother me that much, so what ever happens, happens.


Your case seems to be much worse than mine. I really hope you can keep improving to a point it becomes just something of the past.
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Re: New here, my experience and what triggered it

Postby StressLess on October 5th, 2013, 11:12 pm

Yeah, my twitching was really, really bad. I'm kind of glad because I experienced hardcore twitching from the start, rather than starting mellow and getting worse.
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