Getting Pounded with Fasciculations

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Getting Pounded with Fasciculations

Postby bobajojo on October 1st, 2014, 5:42 pm

Fellow BFSers-

I'm having a tough night and want to know if any of you can anyone relate to this. I'm getting pounded with fasciculations right now. Not twitches, fasciculations. The difference to me (again, this is just my own definitions) is that twitches are a thump, thump thump of a single muscle. Fasciculations are little pops and flickers absolutely everywhere and you can see the skin indent when they occur but they jump around. Just saw a bunch on my tongue, big ones. I rested my tongue in the bottom of my mouth and bam, lightning bolt on one side, then another right in the middle. As I sit here typing, they are absolutely everywhere. My left arm is the worst. I can't even count in a minute how many I'm feeling. I lose count after 10 seconds. Too many happening at once. This is why I have such a hard time coping. I read so many stories on here or facebook about how people are experiencing a twitch here, a twitch there, etc. Mine are so much different. They are all over, every minute. Yes, you'll hear me complain about my bicep or my thigh because those areas are hotspots and have been going for months which sucks, but this nonstop flick, pop, pop, flick, flutter, bam-bam-bam, pop in all my muscles is driving me insane. Ugh. Sorry to vent.

My left bicep has been twitching for 8 straight months. It started as a big thumping twitch and then after a few weeks settled down into a very fine and rapid twitch that never ever stopped. Its going as strong as ever today but when I look at it, its not just my bicep. My upper forearm, tricep, shoulders, hand are all going. Here are some examples. Even though they were filmed at different times, they are usually ALL going at the same time (except the lip one, that was weird).

https://www.youtube.com/watch?v=DKo5N4fUCjE
https://www.youtube.com/watch?v=fcYH-PxSYys
https://www.youtube.com/watch?v=9lTfkeP21H8
https://www.youtube.com/watch?v=UwdqmNrgLYQ
https://www.youtube.com/watch?v=jf4SfQv9YT8
https://www.youtube.com/watch?v=99sWyK8laKg
https://www.youtube.com/watch?v=LNyYA39iYLg
https://www.youtube.com/watch?v=F7IEDSDXDIo
https://www.youtube.com/watch?v=rjlVFDlx-Ko
https://www.youtube.com/watch?v=lSXXx1rAauA
https://www.youtube.com/watch?v=LNgPXWJ4i9w

I also have to apologize if I sound a bit harsh on here sometimes. Its tough to read posts where someone is worried about a twitch here or a twitch there when I never have a minute off. So its frustrating to me because I seem so much different than everyone else. My twitches are everywhere, all the time. I'm in my 4th year with BFS and this is by far the worst year yet. I've always felt like a human popcorn machine but never like this. That's why I'm surprised when someone says they have not had back twitching, or thigh twitching. Because my entire body is active all the time. There is not a muscle on my body that stays calm for more than a few mins without a fasciculation. I can't take it. If you can relate to this, please reply because I need to hear from others who's twitches are similar.

-Matt
Over 10 billion twitches since May 2011.
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Re: Getting Pounded with Fasciculations

Postby leaflea on October 1st, 2014, 7:29 pm

Hi Matt, I can't say I'm as bad as you, but plenty creeped out by my haunted body. I get frustrated with people who don't cramp. Nothing personal, I just feel like an odder oddball. Have you tried keeping a good food diary? This is my latest interest. Planning to do the counter-intuitive low oxalate diet. Sorry you are suffering so. Leanne
Matthew 6:27 Who of you by worrying can add a single hour to his life?
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Re: Getting Pounded with Fasciculations

Postby physerv24 on October 1st, 2014, 8:46 pm

Hey Matt. I won't pretend to know what you are going through as it is only 6 months for me, however my twitching is exactly like yours. Mine started in my left bicep and spread "everywhere" within two weeks. I have not had a single day where they aren't going like gangbusters. I can't even imagine only having a twitch here or a twitch there. I just got back from the Cleveland Clinic this week. Had my second EMG. In addition to my twitches, I had developed a weakened grip in my left hand along with atrophy in the thenar muscle. I was a complete wreck. However, the neurologists at the Cleveland Clinic have diagnosed me with compressed nerves in my c-spine. Nothing in the EMG pointed towards MND, although fasics were picked up in all the muscles they tested. While I thank God every minute that I don't have anything life-threatening, my symptoms don't stop. No meds, stretching, supplements have any effect whatsoever. You have spent countless hours reassuring others on this board. Allow me to reassure you that you are not alone in your symptoms. I"m right there with you.
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Re: Getting Pounded with Fasciculations

Postby Dual_CoRed on October 1st, 2014, 9:33 pm

Tongue, back, biceps, thighs all going crazy today. It was driving me nuts. Just to *beep* em off more I weight trained today too lol. Hang in there bro.
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Re: Getting Pounded with Fasciculations

Postby Xina535 on October 2nd, 2014, 7:40 am

Hi Matt, saw all videos. I don't twitch as much as you but I've had all places do those same twitches. I also have all the freckles you have! :)

I am not sure I've had twitching happening in more than one body part at a time but I will pay attention to see if I do. Also, lately I feel like a human popcorn, twitching is constant, all day, all over, so maybe like yours right now at this time. I have had periods where the twitching was almost gone. I hope it slows down for you. You definitely need and deserve it!
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Re: Getting Pounded with Fasciculations

Postby Little Lost on October 2nd, 2014, 4:48 pm

Matt I have fasciculations everywhere all the time. I do not have random twitching. Sometimes it gets on top of you and you start thinking.....this just can't be right. .....but then you realise nothing has changed, and you had these same thoughts years before.

Could you be coming down with something, my fasciculation get worse just before I get sick, especially throat and respiratory bugs.

Stay strong Matt

Hx
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Re: Getting Pounded with Fasciculations

Postby RobJ on October 3rd, 2014, 7:14 pm

Matt,

I've been twitching for 20 plus years. Some days worst than others. I've gone through periods were things were good and other times when things weren't so good. I've never been able to pin point why? I've gone years without cramps, then years with cramps, I've never gone without twitching and fascics. About 5 or 10 years ago, I remember looking at my legs and see lighting strikes when I looked at them at a certain angle. I had no idea these lightning strikes were occurring. I believe I noticed them when I purchased a new recliner, the way my legs sat on the recliner. About 2-3 years ago, my right thigh and leg started to become very active, extremely active, no idea why, it has calmed down but I'm not sure why....my tongue used to fasciculate like crazy, went away, not sure why? It all started in February of 1993, my back was twitching like crazy, then my right hand thumb...I remember showing my rheumatologist and the rheumy puzzled, then concerned, then neuro appointment.....Recently I've been having very fine twitches in my hands, the area between my thumb and index finger......had them before but never as fine as today, they are not present visibly but if I press the area up against something, I can feel them and they are not my pulse.....about 6 months ago, I had violent twitching in my biceps....moved my hand.....I had to put my arms under the table during meetings....someone noticed them at a meeting.....IToday I twitch constantly in the my instep on both feet. I recently had a corn removed the podiatrist was real concerned with the twitching....asked me all about it, have a I seen a neuro, sigh? I twitch below my calf constantly, I twitch randomly everywhere.....I cramp in my throat when I yawn, I cramp in my stomach when I stretch, I cramp in my calf when I stretch....I have extreme myoclonic jerks when I'm starting to fall asleep....

I've seen more doctors than you, than anyone on this site, I can debate that with anyone of you.....my diagnosis is chronic fasciculations and idiopathic hyperckemia. I've had every test and more tests than anyone on this site. I'm still in watch and wait mode because of my elevated CPK.....but the best advice I've ever been given was the first neuro I saw in Boston. He said even if muscle biopsy or EMG or whatever test says you have a horrible disease....there is only one thing that you need....you could be positive on every test but the only test that matters is weakness......no weakness means we have no idea what you have...go on and enjoy your life!
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Re: Getting Pounded with Fasciculations

Postby RobJ on October 3rd, 2014, 7:26 pm

Matt, forgot to mention.........I love back twitches....they feel so good! I hate thigh twitches, especially when using the thigh. I find that the thigh twitches make your legs tired and you feel tired and they do become weak because of this tiredness, then you test your strength by standing on one foot and this makes the leg tired again...it's a vicious cycle....love the back twitching....It's been awhile since I twitched constantly in the back. I hope it comes back!
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Re: Getting Pounded with Fasciculations

Postby J4son on October 4th, 2014, 12:27 am

RobJ wrote:but the best advice I've ever been given was the first neuro I saw in Boston. He said even if muscle biopsy or EMG or whatever test says you have a horrible disease....there is only one thing that you need....you could be positive on every test but the only test that matters is weakness......no weakness means we have no idea what you have...go on and enjoy your life!


That's so true and i so agree with it.
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Re: Getting Pounded with Fasciculations

Postby Sadface on October 12th, 2014, 8:29 am

Other than the lip video, I've had all them.
I feel them under my skin all the time, crawling.
Never had emg
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Re: Getting Pounded with Fasciculations

Postby reanne2489 on October 12th, 2014, 7:26 pm

I am no where near as close to the number of twitches/ fasciculations as yourself...but recently, I expect with being run down [I have my first smog cold/ fever here in Beijing] that everything has escalated again.

I twitch all the time as you know from the sole of my left foot to my groin- big thumping twitches and fasciculations. My feet feel like theyre fluttering and legs vibrating, and my thighs and knees pound when standing. My right leg also twitches/ fasciculates.

I get them in my biceps, my shoulders, my pectoral area, my abdomen as well. This is much less frequent than my legs. My left eye still twitches too- and that has been twitching longest.

Still awaiting an accurate translation of my EMG results which is scaring me...doctor said he and the neurologist did not understand the initial translation so it's been sent off again...really hope nothing serious :(
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Re: Getting Pounded with Fasciculations

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