Still twitching after all these months

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

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Still twitching after all these months

Postby Lux on September 4th, 2014, 12:56 am

After reading here in this very interesting board over several months it´s time now for my first post, because I´m still dealing with a lot of symptoms and even more and more psychological issues.

Beginning in March 2013 I have different types of twitches all over the body - until today.
I have small twitches and even bigger movements, for example of the whole leg. The twitches come and go. Mostly they appear only for a few seconds but I also have made the bad experience of a twitching eyebrow over three days.

Even before that I had muscle pain, especially in my left upper arm and at other changing places, like the left hand (between thumb and first finger) or the calfs.
Sometimes there is a "burning" pain at the inside of my hand or under the feet.

I can easily provoke cramps in my feet or calfs, even easier on the left side.

I also deal with several tongue issues: pain under the tongue, twitching, burning feeling like after drinking or eating to hot and vibrations all over the whole mouth and lips. Sometimes I lisp or have hoarseness. This occurs over periods of several days and becomes worse in the evenings.

For several years I have a tinnitus and teeth grinding at night.

Sometimes I have a new hypersensitivity of my fingertips. I feel a pain then, i.e. when I´m typing.

I have days without any pain symptoms, but there is no day without at least some twitches.

I think, there is no weakness nor atrophy.

Last year I visited three Neuros several times. I had three EMGs (two in April and June at the first Neuro, another one in Octobre at the second). I also visited other doctors to check blood, head (MRI okay), rheumatism (okay) and thyroid (okay). I also was checked for antibodies against potassium channels (negative).

I tried Magnesium, Limptar and Carbamazepine without success.

Because I had a somehow positive test for lyme desease I tried a long term antibiotica therapy over seven weeks at the beginning of this year, but without any change.

Now, that I still have all the symptoms I also have to deal more and more with anxiety. I know all the facts that speak for BFS or BFCS but I´m still sometimes (to often) afraid of being in an early stage of a MND.

So, what else can I try to do?

Thanks,
Lux
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Re: Still twitching after all these months

Postby trustme78 on September 4th, 2014, 1:33 am

Hi
I am still a little bit hesitant to give advice because I am so new into this myself and still have problems on the mental side of things with it.

But when I read your post everything says BFS over and over and over. You can't get much more reassurance than that - 3 neuros, several EMGs, 1.5 years of twitching without severe symptoms.

In my opinion you have two choices. You can go on like that. Doubt the results, doubt the exams, doubt the EMGs. Come here for reassurance with every new symptom that creeps up. Or you can accept the fact that it's a mental thing now. That you need to find a way to deal with it and live a happy life without this fear. And when you accept the fact that it's mental you need to find a strategy that gets you in the right direction. For example professional help in form of a therapist or psychiatrist or something. One strategy that helped me a lot is to find role models here on this forum and "stalk" them. Read through their posts - the early ones and the late ones where they succeeded in dealing with this condition. One person I suggest is MarioMangler.

My 2 cents. Hope this helps. Take care!
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Re: Still twitching after all these months

Postby Squidge on September 4th, 2014, 3:38 am

I too have read MarioMangler"s posts and they have really helped me. There are certain posters that I don't bother reading as they do nothing for my state of mind at this early stage of my journey through bcfs. I need support and positivity, as we all do, to help cope with this and it really doesn't help to read posts that are of no use except to scare. Or maybe at my very vulnerable stage I may.be more sensitive than some...not sure! However, I have found great comfort in reading many posts and MarioMangler's are top of the list. Thank you....and to the many others

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Re: Still twitching after all these months

Postby MarioMangler on September 4th, 2014, 11:39 am

Feel free to stalk my posts anytime! In fact, frankly I wish more people around here did. It's exhausting when you have to say the same things over and over and over, my theory has always been, well I already posted how to approach BFS effectively, if people feel like following that advice it is all right there in the archives. In fact I even have a sticky at the top of the page where I sum up my entire strategy of how you can (mentally) beat BFS. I just assume everyone that comes to this board would read a post like that, but you would be surprised how few people actually do. Oh well.

In any case, thank you for stalking and I am glad I have been able to help. As I have always said, BFS sucks and it can be annoying but it is not all that hard to live with once you stop whining about it. However, getting to that step is actually the hardest part. And that's not on your doctors, that part is all on you. Only you can do that step.
BFS FAQ:
1. No, that's not bulbar
2. No, the location doesn't matter
3. Yes, we have all had that symptom
4. No, you're not the exception
5. No, that's not ominous
6. No, you don't need an EMG
7. Yes, you will be fine
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Re: Still twitching after all these months

Postby Squidge on September 4th, 2014, 11:52 am

Hi MarioMangler

I really like your approach to this "thing" and I just wish I had your mindset but at the moment I am "suffering" and its early days so I guess time will be a healer - of the mind at least!! I haven't read your sticky post but I certainly shall, Keep up the good work....you really help to ease the anxieties.

Thanks again and happy twitching!!

Squidge
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Re: Still twitching after all these months

Postby MarioMangler on September 4th, 2014, 3:58 pm

Well you will probably still suffer in some form or another for the rest of your life. But again, a lot of that is up to you. When it comes to BFS, how much you suffer is generally dependent on how much you let yourself suffer. The minute you realize you have control over all this, and you can affect it based on the choices you make throughout the day, that is the minute when BFS will just fade away into being an annoyance. It won't happen right away, but it will happen eventually. And sometimes it will come and go based on how well you are doing with your focus and your mental discipline. I mean, even for me I will have relapses from time to time where I get lazy and I don't get enough sleep and I get overwhelmed because of the stress at work. It sucks, but it happens. And when that happens you just have to go right back to what you were doing before, you have to double down on your discipline and find a way to get your mojo back. Because that is really all that BFS is. You have a hair trigger nervous system now that is susceptible to all sorts of nonsense and noise and other B.S. you used to be able to ignore. Why did it happen? Who knows. Let somebody else spend hundreds of thousands of dollars and let somebody else waste years of their life going to eight hundred different doctors just to figure it out. But that is all you have. Any attempt to complicate BFS and make it anything more than "you have an overloaded nervous system" is just overcomplicating things and adding to your new obsession problem.

But yes, the key when it comes to BFS is you constantly have to find a way to get your mojo back. You have to learn to be strong. Don't let little things even bother you anymore. Once you are able to start doing that, the symptoms fade into the background and it all just becomes a delicate balancing game.

In terms of easing anxieties, I really wish that more veterans posted here. I wish we all did. But you have to realize that in the delicate balancing games, we are BFS sufferers too. I mean, it might not bother most of us anymore for the most part, but that is only because the secret of BFS is not thinking about it or worrying about it anymore. And one of the keys to that is to stay away from this board. That is the great curse when it comes to BFS. The more you learn about it, the more you realize that you can't be hanging around other BFS people all the time. You just can't make that your world, because it would be counterproductive to everything you are trying to do. So you have to leave the board, and then you just start obsessing about BFS less and less and less, and things start to get better.

Which means, of course, that as more people recover from BFS and get better, there are less veterans around here to help out the newbies. And that is the great problem with a condition like this. The newbies need to hear good news and they need to hear ways that they can deal with this new condition of theirs, but there is no one around because the veterans are all wisely staying away because that is how they became veterans in the first place. And then of course the board will just go through phases where there are -no- veterans hanging around here at all, and at times like that it is like the inmates come in and take over the asylum, and every post on the board will be panicky and scary and then everyone will work themselves up into a tizzy because it is all newbies. When I see that happening I try to come back and step in because anyone who has been around here when the board is like that knows how out of control it can get. And lord knows if you hang around this board long enough you will realize how cyclical this place can be. As the veterans of aboutbfs like to say, the arguments around here never change, only the names do. :D There is never anything being posted on this board that hasn't been written or said or "discovered" at least a dozen other times before. Hang around here long enough and you will see how predictable this place can be. You will also see that nobody here actually has anything seriously wrong with them. No one is actually dying here. We just live like we are.

In any case, anything anyone ever needs to know about BFS can be found in Arron Johnson's "BFS in a Nutshell", which has been stickied here for ten years and is very easy to find. Any attempts to make BFS into something bigger than that, or something more complicated than that, is just a person deliberately interfering with their own recovery. It is adding drama to one's life just for the sake of adding drama. Once people realize that they are doing that, and they accept it, and most importantly they make changes not to do that anymore, BFS really isn't all that difficult to deal with anymore once you get the hang of it.

Also, everyone who is new at this should read my signature line below. Although I really should just amend it to say this: #1 no you don't have bulbar. #2 no your symptoms aren't unique. #3 why no, I don't think you are a special little snowflake who is different than everyone else. It's blunt but it's pretty accurate of how you need to start approaching this stuff.

Good luck to all of you. Before you know it, soon you guys will be veterans too. Then we can all stay away from this place together to facilitate our recovery. :D
BFS FAQ:
1. No, that's not bulbar
2. No, the location doesn't matter
3. Yes, we have all had that symptom
4. No, you're not the exception
5. No, that's not ominous
6. No, you don't need an EMG
7. Yes, you will be fine
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Re: Still twitching after all these months

Postby Squidge on September 5th, 2014, 11:34 am

Thank you so much for your insightful and yet again reassuring post. It's people like you with your positivity that I need to focus on rather than terrifying myself with all the other stuff we find on this "damaging' internet. If I had not googled twitches in the first place I may have accepted that this is a painful nuisance rather than thinking I'm doomed.i have been in very very dark and depressing places over the last two months and every new symptom depresses me more. As I move through this journey I discover that I have to get my mind healed before I can my body. Although having said that...if these symptoms went tomorrow I'm sure my mind would heal too. It's just a nightmare and I just wish I did not own a computer as ignorance is bliss.

Thank you MM for your wisdom
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Re: Still twitching after all these months

Postby Squidge on September 5th, 2014, 11:34 am

Thank you so much for your insightful and yet again reassuring post. It's people like you with your positivity that I need to focus on rather than terrifying myself with all the other stuff we find on this "damaging' internet. If I had not googled twitches in the first place I may have accepted that this is a painful nuisance rather than thinking I'm doomed.i have been in very very dark and depressing places over the last two months and every new symptom depresses me more. As I move through this journey I discover that I have to get my mind healed before I can my body. Although having said that...if these symptoms went tomorrow I'm sure my mind would heal too. It's just a nightmare and I just wish I did not own a computer as ignorance is bliss.

Thank you MM for your wisdom
Squidge
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Re: Still twitching after all these months

Postby MarioMangler on September 5th, 2014, 1:25 pm

Just hang in there. You'll figure it out. It just might take a while.
BFS FAQ:
1. No, that's not bulbar
2. No, the location doesn't matter
3. Yes, we have all had that symptom
4. No, you're not the exception
5. No, that's not ominous
6. No, you don't need an EMG
7. Yes, you will be fine
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Re: Still twitching after all these months

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