30 year veteran, new to the board, has ?'s for you all.

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30 year veteran, new to the board, has ?'s for you all.

Postby switched on May 12th, 2014, 3:27 pm

Hi there everyone :-)

I've had this since I was 14 which makes me a 30 year veteran. :roll:
I can still remember the day I had my first twitch, and how weird it was. I was scared, but not becuase I knew anything about ALS. In fact, I've never really worried about that. It seems like that is a huge worry for people on this board ( a lot of you) when they first start with the twitches. I do have depression and anxiety, but not about twitches. From what I read, it's almost like the anxiety about the twitches is part of the symptomology of BFS and not a seperate issue. Except that's not true for me. Perhaps because I have a "lighter" version of BFS than many of you, I think.

So I did some searches after reading the forum for hours and days and couldn't find anything really relating to this... It's not really important, I was just curious if anyone is like me in these ways...

1) I am pretty ashamed of my twitches. I have never told anyone (not even a doctor) about them. I just think they are weird and something kind of gross. Something wrong with my body that I can't control. It seems many of the people on this forum go immediately to the dr, or share the phenomenon with their partners ("Honey, check this twitch out"). I could never show it to my partner.... I think they would be disgusted with me and no longer find me attractive or sexy. Anyone else keeping this a secret?

2) I don't think I have BFS as intensely as some of you. I'll get it for a couple of weeks maybe a month or two, in a few different hotspots, then not for a month or a few months or I think I've even gone a year or so.... I'm very grateful for the periods of reprieve. Even though it's not as bad as some, I definitely have this thing... this BFS... I get the hotspots that drive me mad, the thumpers, the popcorn, the "switchbacks" (my word), the vague softer twitches that occur randomly. They just go away for a long time sometimes. I definetely think there is something that is triggering it, some kind of nutritional deficency or over-ficency (also my word!) I've read many of the threads on here regarding theories of the nutritional triggers. Not sure which may apply to me except I just started back on Wellbutrin, and the twitches also just started back 9after a year of reprieve). I read a thread here on that possibility. Anyway, anyone else have this "lighter" version?

3) When i do have it, it drives me so crazy that I've had thoughts of stabbing myself. Granted I would NEVER do that. But it really drives me to distraction. I cant' stop watching them. It's morbidly fascinating. I'm obsessed and disgusted at the same time. Sometimes, if I follow the muscle under the skin to the starting point of the twitch and pinch myself really hard, I can get them to stop for as long as I pinch. But as soon as I let go, they 'catch up' and twich harder and faster until they are caught up with where they'd be if I hadn't pinched. It seems. I'm sure this isn't totally accurate, it just feels that way. Anyone else follow it to the origin under the skin? Anyone else pinch it til it stops? Anyone else have thoughts of stabbing the muscle??? I bet THAT would get it to stop! Nothing else does, but I bet that would.

The reason I ask "anyone else this or that" is not that I think I'm terminally unique... it's that I crave to not be alone in these 3 particular ways. And when I finally found this forum, I did many searches ("pinch" "ashamed" "stab" "origin" "crazy", etc, etc) and I'm not finding anyone :-( except one guy who said he tried to bandage his leg once in an attempt to stop it and one person who said they were ashamed when their hairdresser remarked on a twitch. (I would have died in the chair).

Thanks, and thanks for having me here.
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Re: 30 year veteran, new to the board, has ?'s for you all.

Postby leaflea on May 12th, 2014, 7:40 pm

Switched,

I am like you in:

#1 that I do not talk much about this AT ALL to anyone except the doctor and immediate family. I find it not helpful and sometimes increases anxiety about it.

#2 depends on the day, sometimes it feels very light and almost normal, other days quite debilitating

#3 I get upset, all I want it to do is to STOP, go away, leave me alone! Instead it moves, or changes, or gets worse for a while. Haven't had one of those "light" days in a few weeks now

It probably helped that this all started for you before google was invented. Google has made each one of us worse it seems. By the time you googled and found there is a name for it, you had it for so long, you knew it did not lead to anything worse. You had a lot of experience with it already. We have the wonderful convenience of google at our fingertips and can google at the first or second curious twitch.
Matthew 6:27 Who of you by worrying can add a single hour to his life?
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Re: 30 year veteran, new to the board, has ?'s for you all.

Postby switched on May 13th, 2014, 9:34 am

Yes, that's very true about a lack of internet when it started for me.

Instead, I suffered in silence until nothing else seemed to be getting worse. It's hard to remember how long that was, it was so long ago. :lol:

Thanks for answering.
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Re: 30 year veteran, new to the board, has ?'s for you all.

Postby switched on May 13th, 2014, 9:37 am

PS, why do you think not many people on here have written about secrecy or obsession or pinching the muscle? Is it because no one else does those things, or because I don't know how to do a proper search? :oops:
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Re: 30 year veteran, new to the board, has ?'s for you all.

Postby leaflea on May 13th, 2014, 9:51 am

No idea. I have hit the muscle before - maybe that is how so many discovered they can induce the twitching? It is still helpful that you posted - so we can see you are still alive and twitching after so long.
Matthew 6:27 Who of you by worrying can add a single hour to his life?
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Re: 30 year veteran, new to the board, has ?'s for you all.

Postby switched on May 13th, 2014, 10:25 am

Yep, alive and twitching and pretty healthy considering my history of years self-abuse (food and drugs). :shock:

(heh, I like these smilies)
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Re: 30 year veteran, new to the board, has ?'s for you all.

Postby ShawnW on May 13th, 2014, 3:19 pm

switched wrote:Yep, alive and twitching and pretty healthy considering my history of years self-abuse (food and drugs). :shock:

(heh, I like these smilies)


lol...I was just about to ask you if you were in recovery. You used a familiar phrase "terminally unique". I know no one but AA or NA that use that phrasing.
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Re: 30 year veteran, new to the board, has ?'s for you all.

Postby switched on May 13th, 2014, 3:34 pm

Yea, that AA stuff sticks with you....
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Re: 30 year veteran, new to the board, has ?'s for you all.

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