Veteran Twitcher Updating Status

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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Veteran Twitcher Updating Status

Postby Jake_the_twitch on January 23rd, 2005, 2:00 am

Hi everyone:

I was one of the first, #10 in fact to register on the site and I thought I should share my story for the benefit of the newly affected.

I started twitching, 24-7, thousands of twitches a day throughout my body, every type, single, multi (up to 8 weeks in one muscle non-stop) in August 2001. I went through hell for a solid 2 years thinking the worst as most of you have. There isn't one fear, one symptom that anyone of you have discussed that I didn't have at some time. I saw Neurologists, nothing, my GP put me on SSRI, anti-anxiety, anti-convulsive medications, nothing helped.

Today, I may get the odd twitch but I suspect the level is no different than the average person. I haven't obsessed, I have gotten on with my life, no weakness, still some pains but that is old age creeping in, I still play hockey and can keep up with people half my age (I am 42 now).

The answer to this nonsense for me, was simply time. The longer I lived with it, without True weakness the more reassured I became that I would not die a horrible death, never to see my children grow up. Finally, slowly in fact, at such a slow rate of decline that I didn't notice the twitching had all but stopped. Days then months would go by without worry, now I don't worry about it at all.

It has been 2 years since I signed onto this board which was selfish of me, I am sorry. Please trust me that BFS is real, it is not a misdiagnosis, it not a precursor to something worse, it is a pain in the ass that you will someday overcome. You will look back and wonder why you wasted time worrying.

I believe it is stress related, trigger by some viral infection, I had erosive gastritis in my stomach for 4 months before the twitching that I was deathly worried about.

Finally, my reassurance will hopefully help some of you, but do not expect the twitching to ever stop over night. It will take Time.

Hang in there everyone.
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Postby LeeNC on January 23rd, 2005, 12:05 pm

Jake:

Glad to hear from you, a veteran. What a great, uplifting post! I hope we can all be like you someday.

After 7 months, I believe my symptoms are indeed lessening, but also (like you said) it's so gradual as to be hard to even tell.

Also, like you, I was told this was anxiety, and I took an SSRI and went to a psychologist. Didn't seem to help at all. Plus, I've had many periods of great stress in my life, and the time immediately prior to when my BFS started wasn't one of them.

It seems lots of us (not all, of course) are in our 40's. I wonder what that means.

I hope all the newer twitchers here find great reassurance in your check-in here. Thanks for posting!!!

--LeeNC
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Postby Ava on January 24th, 2005, 1:06 pm

Thanks for a great post!!

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some recover

Postby Ish on January 24th, 2005, 4:33 pm

That is indeed very encouraging. One really doesn't hear very much about recovery; usually veterans are still twitching it seems.

Myself I'm at 1.5 years of 24/7 constant twitches (and everything else) and continue to get worse, not better. I'm not worried about it, but not happy about it either.
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Postby Roger G. on January 25th, 2005, 12:56 pm

I feel as if I have just read a post, POSTED BY ME :!: . Except for one slight differance, I have been twitching as you describe for TEN (yes thats 10) years. All i can say at this point is HANG TOUGH. :twisted: :!:
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Postby joeyata1 on January 25th, 2005, 8:00 pm

rodger how old are you? do if you stand naked in fron of a mirror you mean your whole body is constantly twitching?your arms back calves thights etc.with me usually only one muscle twitches at a time
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Postby joeyata1 on January 25th, 2005, 9:53 pm

rodger how old are you? do if you stand naked in fron of a mirror you mean your whole body is constantly twitching?your arms back calves thights etc.with me usually only one muscle twitches at a time
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Postby Roger G. on January 25th, 2005, 11:04 pm

I am 48 years old, And yes, all muscles,tendons,etc.twitch all at once, all the time. let me put it like this, put about a thousand or so worms under my skin starting at my feet and ending somewhere up around my head area, let them do their thing, and WA-LAH! you now have me. So believe me when I say no one here has had the experiences that I have had. I have been there, done that, seen this,seen that,seen this doctor,seen that doctor,gone to this specialist, gone to that specialist, and I still Get up every day to fight the war :twisted: :!:
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Postby joeyata1 on January 25th, 2005, 11:54 pm

man god bless you. its like having terots all over your muscles then.did your twitching jsut come on at once all things moving together or was it progessive over years?so when you got to sleep at night does it stop or slow down?does your face twitch ?whats so tough about this its not a disease oer say. it jsut like your heart beating but its all over your body. there's no disease no breakdown in muscle.i pray you find peace and a cure.mine started after i quit smoking. i jsut happened to see a msucle move never felt it and wham looked uptwitches als gig and off to the races was my mind. obviosuly you knew long ago you ahd no fatal disease. have you tried yoga for mind control? i'd had my twitches 16 months and they actually don't bother me anymore. i'm resigned to whatever happens happens. fear almsot destroyed me and i won't let it grip me again.
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Over30 years twitching

Postby Roger on February 7th, 2005, 6:23 pm

Yes it is true! My twitches began in 1972 and are still going strong. I have learned to live with them but I can't say that I've ever come to terms with it being a permanent condition as it seems to have become for me. (my neuro in 1972 said it would definitely get better with time. How much did he mean, I wonder).
But hey don't get down about it. It really does improve for some people.
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Postby SLL on February 14th, 2005, 11:50 am

6 years and counting for me...when going through flares i get the ol 'scared of something ominous" thing and it just makes it all worse!
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Postby Alien Host on October 10th, 2005, 12:35 am

yet another really good oldy :D
BFS Is A Mind Trip, It will scare You But Will Not Hurt You

Twitching since 10 2004 with a Dirty EMG, what's your excuse?

PPMA Prayer & Positive Mental Attitude
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Postby migolivas on October 10th, 2005, 12:08 pm

Thanks for digging these up.

They are encouraging and help me feel better and better about this pain-in-the-butt syndrome.
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Postby dpalmer04 on December 11th, 2005, 12:52 am

I have been twitching for almost 4 years now, and has been an up and down struggle for me over the years, with some many different fears going through my head, lots of sleepless nights, and mighty mood swings. These days I can cope with it alittle better. I try and stay a bit busy. I aslo take xanax, which has lessoned the twitching 30%. Which helps. I know all about the drug and its potiential, but if I can get relief and sleep I will continue to take it. I do feel the twitching the worst when Im sick, or high anexity. Some periods in my life I can go on and It seems like the twithching is lessoned, I dont know if its from distracting myself, and then sometimes I cant stop thinking about it. Its crazy. Sometimes it hits me when Im out and about and I look around and wish I was normal, and then somethiomes I look around and think, it could be worse. Its a struggle, but forums like this one is a good place to come to and talk about it. I dont hink I know anyone personally, and trying to explain it to family, friends, and doctors is hard. I can only hope for the best for me, and everyone that has to go through any sort of life changing circumstance. I have grown to appreciate the suuffers of all kinds, and try and participtae in fund raisers for all kinds of dieases. Maybe one day it will go away. I hope and pray.
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Postby Joanna on December 12th, 2005, 5:44 am

Jake,

How nice of you to give us your update!

Thank you so much for this very uplifting post.

Can I ask you if have had any buzzzing/pins and needles, worm crawling feelings as well along with the twitching?

Thanks again,
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