8 years and still have twitching everywhere

Information about how to manage or reduce the severity of BFS symptoms

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Re: 8 years and still have twitching everywhere

Postby Lene on October 9th, 2013, 8:35 am

Are there doctors that investigate or do research on BSF?
Twitching évery minute since end of 1988........
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Re: 8 years and still have twitching everywhere

Postby billydog on October 10th, 2013, 9:17 pm

Not to my knowledge. It seems like doctors arent too familiar with this condition. And if they are, they seem like its not a big deal. But if you find any docs that actually specialize in bfs please let me know. Thanks for the response!! Good luck!!
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Re: 8 years and still have twitching everywhere

Postby florian_ on October 23rd, 2013, 2:06 pm

Hello Billy,

Look for a skilled acupuncturist. L4 is is on the Dumai-Meridian and on both sides of that point are the points kidney23 located. Strengsten the Yang-Energy of the Dumai and Support the Kidney-vessel will help you with the L4 and generally with lumbar-problems.

And, Kidney from the view of Chinese medicine is related to the emotion fear. Fear weakens the Kidneys and weak Kidney-energy leads to lumbar-problems and more fear.

Acupuncture with the intention to strenghten Kidney-Yang and Yin will help your lower back, ease your fears and that will ease all BFS-Symptoms.

Take care and best wishes from berlin ;)
10 year-journey with BFS. Maybe it answers some of your questions and ease you mind ;-)

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Re: 8 years and still have twitching everywhere

Postby billydog on October 27th, 2013, 8:13 pm

I never would have thought about kidneys but at this point im down to try anything. Im going to do some research on acupuncture in my area and go see one. I live about an hr from Pittsburgh Pa so im sure i can find a good one. Thanks for the advice ill keep you posted. :D
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Re: 8 years and still have twitching everywhere

Postby billydog on December 17th, 2013, 9:20 pm

Well now on year number 9 here and still having the annoying twitches everywhere! A few months ago I did go thru a period where I didn't hardly twitch at all but now they are popping up more and more again.. So frustrating!! I still have been taking .5mg xanax for a long time but now feel they are making me feel drugged all the time!! They do help me get some rest but I'm really thinking of weening off of them, but fear my twitching may go crazy if I do!! I'm to the point in my life where I'm frustrated and want answers here!! I do feel terrible for those unfortunate ppl who do have ALS, but those of us with BFS, it also time for some answers!! I now am starting to have all over pain occasionally and still now answers from the docs. Got tested for Lyme it was neg, blood work is all normal besides my a/g ratio is a little low at 1.3 and normal is 1.5 (not too sure what that even is) but doc says everything looks good.. So my question is then wth is causing this fasiculation bull****?? I'm over it. I just wanna feel normal again! I now have 3 daughters to take care of and wanna enjoy them and stop worrying about these twitches!! Does anyone think it's coming from our brain?? Any suggestions would be greatly appreciated!! I'm at my wits end after 9 years of this crap!?
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Re: 8 years and still have twitching everywhere

Postby RGB on December 17th, 2013, 10:19 pm

billydog wrote: So my question is then wth is causing this fasiculation bull****?? I'm over it. I just wanna feel normal again! I now have 3 daughters to take care of and wanna enjoy them and stop worrying about these twitches!! Does anyone think it's coming from our brain?? Any suggestions would be greatly appreciated!! I'm at my wits end after 9 years of this crap!?


Obviously no easy answer that would be true for everyone BUT in my own case I am most likely to accept the theory that it is a form of somatization. There is a good study that supports this theory (I won't post the link to the paper because it seems that ANY information scares some people) and it certainly fits with my history. Like I said, not the answer for everyone, but the limited data suggests that it is true for a significant proportion of us. If true for you then no amount of physical investigations are going to help.

Not claiming to have any answers, and definitely not for you specifically, but just trying to help as it is obviously a serious quality of life issue / pain in the **** for you.

RGB
My history....Jan '13: Widespread Twitches. May 13': Unremarkable Neuro Exam. Jul '13: Clean EMG. Oct '13: BFS Diagnosis Today's Date: Twitching and Healthy!
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Re: 8 years and still have twitching everywhere

Postby billydog on December 18th, 2013, 3:04 am

Hello RGB,
Thanks for the post! At this point in my life, I'm open to any possibilities of what this could be!! From what I read on this great site, fasiculations could be caused by so so many different things and it's hard to tell what's causing them! I don't drink any caffeine, no chocolate, try to keep my stress level low, and everything else mentioned that could trigger BFS. I'm a very intelligent person and just can't seem to wrap my mind around this one issue I have in life!!! I do have problems with acid reflux and a lot of pain in my stomach bit don't know if there's a connection or not.. I've often wondered if it was something that my brain is maybe releasing too much of something and causing these twitches to possibly a spine injury since that's basically where all our nerves branch out from!!.. I just don't know and I wish I was a millionaire so I could donate millions and millions of $$$$ for research to find a cure for all of us BFS sufferers... Thanks again for the post
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Re: 8 years and still have twitching everywhere

Postby Yuliasir on December 18th, 2013, 3:17 am

I do have problems with acid reflux and a lot of pain in my stomach bit don't know if there's a connection or not.


there is one. Acid reflux is often casued by hyperexcited autonomous system, which is almost always a component of BFS.
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Re: 8 years and still have twitching everywhere

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