3 Year Update

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3 Year Update

Postby bobajojo on May 14th, 2014, 6:38 am

Hey Twitchers,

Today marks 3 years with this *beep* for me. I can tell you that I'm twitching more now than ever, probably because I spent the winter training for the Boston Marathon which I just completed 3 weeks ago. It was a great way to give BFS the middle finger.

When I started this nonsense, my calves and feet were going 24/7 like many here and I was getting random pops everywhere else and an occasional tongue twitch. The worst was in the morning when I'd fell a "pop" about once every 10 seconds or so. NOW, its much different. When I wake up I am twitching everywhere! I feel on average about 20-30 per minute all over. My elbows have been twitching for 2 years. My left testicle has been going for 6 months. BOTH biceps have been firing away since early February. My tongue twitches every day. I feel it several times a day and I am in the habit of checking it out in the mirror when I brush my teeth. More often than not, I see the little flicks and dimples going off and I dont' even feel it. The twitches on my tongue appear all over, not concentrated in one area although the left side twitches more than the right. If I take my shirt off and just stare at my shoulders and arms, I can see fasciculations appearing in different areas of my muscles. I can't really say anything that hasn't already been said by the vets on here but here are a few things I want to emphasize to any newer twitcher reading this:

1. Don't fool yourself into thinking that any one twitch is more worrisome than another. I can tell you from first-hand experience that you can twitch all over your tongue, in your shoulder girdle, in 5 places in one arm at the same time, both biceps firing away for weeks and it means nothing. I have all kinds of twitching. The rolling ones, single pops, flutters, machine gunners that go for 10 secs, stop and then return. My twitches look just like the so-called "bad" youtube videos. It doesn't matter. Still BFS.

2. Be careful with what you read on here. If you start reading a post on here that begins with "I read somewhere", just stop reading. This place is great for newer twitchers to calm themselves down after googling but it is filled with health anxious people who bring misinterpretations and false information that make people think we're in some sort of waiting game with BFS. We're not.

3. Don't let anyone convince you that they have a "cure all" for BFS. They don't. I've discussed this with my neurologist. There are many many causes of BFS, too many to count. We probably all took different paths to twitching, but here we are, sharing the same symptoms. However, just because one twitcher found something that gives them relief doesn't mean it will work for you. What will end up happening is you will try it out, find that it doesn't help and then let your anxious mind convince you that you are different. You're not. The key is to just learn to accept it.

4. Don't try to relate to everyone's story on here. This site is a mixed bag depending on the level of health anxiety. Some folks can count their twitches by the day or even say they have days with no twitching. Others lose track after a minute. So no matter where you fall in this scale, if twitching is your biggest concern, you're fine.

My neurologist doesn't care one bit about fasciculations. He just says, "Twitching in the absence of weakness or atrophy is benign. Period." Even twitching relentlessly in every muscle including your tongue like me.

-Matt
Over 10 billion twitches since May 2011.
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Re: 3 Year Update

Postby mwagner on May 14th, 2014, 9:54 am

Matt!!!

I can't believe it's been 3 years, which means my 3 year point is not far behind.

You have been a rock for people on this board, replacing fear with logic for many of us who have been very frightened, and I am ever so grateful. I will never forget how you talked me out of a full-fledged panic attack the day before my EMG.

For others on this board who are new, Matt is exemplary of how to challenge this weird, crazy, mind-messing, anxiety-provoking disorder. He has looked it straight in the eye and won't let it get to him (even when he has multiple hot spots going at once).

Thank you Matt for all your support. This board is extremely lucky to have you as a member.

Mitra
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Re: 3 Year Update

Postby ShawnW on May 14th, 2014, 12:07 pm

I must agree. You are of great value to this site. When some like to bring stories off the net, or focus on rare case studies and scare people with them that is not helpful to this group of highly anxious people. You bring a calm...being at the far end of the spectrum. And if there is anything that places meaning on your condition...well you can help so many people with your story. I know you have calmed my fears over the last few months. Thank you.
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Re: 3 Year Update

Postby veryworried123 on May 14th, 2014, 1:17 pm

Yes thank you Matt

I agree

you have helped me a lot as well and i thank you for your responses

thanks
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Re: 3 Year Update

Postby veryworried123 on May 14th, 2014, 1:19 pm

Yes thank you Matt

I agree

you have helped me a lot as well and i thank you for your responses

thanks
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Re: 3 Year Update

Postby raindog on May 14th, 2014, 4:47 pm

Great post matt. How good does it feel to be a veteran BFS'er and you are physically still the same person as the day before it all started :mrgreen:
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Re: 3 Year Update

Postby wjjw on May 15th, 2014, 1:40 pm

If there was a "Like" button, I'd click it.

Cheers,
Bill
A knowledge of the existence of something we cannot penetrate, of the manifestations of the profoundest reason and the most radiant beauty, which are only accessible to our reason in their most elementary forms--Albert Einstein
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Re: 3 Year Update

Postby nrwtwitcher on May 16th, 2014, 5:01 am

Thank you Matt for this update. And thank you that you are still on this forum. For new members like me, full of anxious, cramps and twitches; it is extremely important to get advise from "old" members with years of experiences in bfs. So we have hope, that all will be ok someday... and that we should not longer be anxious about twitching calves, arms... etc. Thank you :D
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Re: 3 Year Update

Postby Nightfly on July 12th, 2014, 8:15 am

Hi Matt,

You are my flippin hero mate, When I think I can't get any worse I just read your posts and somehow it doesn't feel that bad after all lol.

Another press on the 'like' button.
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