Twitching and pain and stress !!!!

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Twitching and pain and stress !!!!

Postby Kevo5684 on September 28th, 2014, 8:11 pm

Hey , i started twitching about 10 months ago I of course googled and so on so forth I am just trying to get down to brass Tacs about all this because I am so tired of worrying . Any help or encouragement would be grateful appreciated. I of course twitch all over head lip eye arms chest legs feet and other places ! I need some peace because I think that alone would help ! I tend to have a lot of pain some days are diff than other no weekness that I can tell I sometimes worry with that too I first of all am wondering how much is pain apart of bfs after work my feet hurt after resting all day my whole body aches I get headaches and the whole deal ! So whys starting to worry me more is buzzing in my palms and feet and just different things so if I could get some ?s answered it might help

1 what is the most reassuring thing someone with bfs can be told that it will not turn into a**

2 so other people get bad pain and stiffness

3 does bfs have a time where it will go away is it permanent ?
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Re: Twitching and pain and stress !!!!

Postby MarioMangler on September 28th, 2014, 8:31 pm

1 what is the most reassuring thing someone with bfs can be told that it will not turn into a**


ALS fear is so common around here it is basically one of the stages of having BFS. I would call it the first stage. I guess the most reassuring thing you can be told in regards to ALS fear is watch how often old timers will respond to threads where a newbie comes in and panics that they are dying and they have ALS. 75% of the time, no one will even respond to the thread because for anyone who has been around here more than a year, it's like "Well here we go again, we have one of these on the board again." So I guess the most reassuring thing I can say to you is that ALS fear is annoying to a BFS oldtimer. It is a cliche. It is the most predictable step that everyone goes through. It is only afterwards, when a newbie decides to move past that nonsense and move on to talk about symptom management, that you will be able to get most veterans' attention.

This probably isn't what you expected to hear, but it is the single most reassuring thing I can say to you. ALS fear is boring. Pretty soon you will realize how ridiculous it is to live in fear of a disease that you don't actually have any symptoms of.
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: Twitching and pain and stress !!!!

Postby emmie.s on September 28th, 2014, 8:34 pm

Buzzing, tingling, burning and vibration-type of sensations (paresthesia) are very very very common among people with BFS. I myself sometimes get buzzing feelings in my thighs, and prickly feelings in my feet. Pain is also not uncommon. In fact, paresthesia and pain tend to point away from ALS and towards BFS. It could be a sign of something autoimmune (such as sjogrens, or arthritis which are both treatable) so its something that you shouldn't worry is ALS related, but you should nonetheless mention it to your neurologist.
My experience with BFS is that it never completely goes away, but there are periods of remission. Diet, illness, and stress definitely played a huge part (for me at least), and you might tend to experience worse symptoms after a period of stress or an illness.
If you have been twitching for 10 months and have no real weakness, then you should be secure in your BFS diagnoses. BFS is a REAL disorder, and there are plenty of veterans here on this board who will tell you that although it can be painful and annoying, it won't kill you.
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Re: Twitching and pain and stress !!!!

Postby Kevo5684 on September 28th, 2014, 8:39 pm

Well it's like every web site that talks about a** has twitching as the first symptom and it scares me I mean some of them specify that weakness can lead to twitching but for the most part it just scares me
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Re: Twitching and pain and stress !!!!

Postby emmie.s on September 28th, 2014, 9:34 pm

First of all, Im not sure what websites you're going to but its pretty well established that twitching as a first symptom only occurs in about 10% of ALS cases. Secondly, when twitching does precede weakness, it is usually only for a short period of time, not months and months.
Finally, you will never get past your irrational fear if you keep turning to the internet instead of a proper neurologist for a diagnoses and information. Dr. Google will only scare you. And you coming here and sharing that incorrect information will only scare other members.
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Re: Twitching and pain and stress !!!!

Postby Kevo5684 on September 29th, 2014, 6:30 am

That's not my intention I'm just trying to explain why I'm so scared but thanks for the advice
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Re: Twitching and pain and stress !!!!

Postby Yuliasir on September 29th, 2014, 6:41 am

key words are: "it's like..."

becasue in reality (at least in the reality of Russian and Ukrainian ALS sites I was browsing in my own fears period, the most typical story was a sudden onset of weak paresis (no pain, just complete loss of a hand/leg mobility). Maybe Russian and Ukrainian ALS people are special ones :))) they seem not to twitch!

and I had quite several stories like ours typical, and all were dismissed by neurologists moderators of those forums with the clear recommendation to see psychologist/psychiatrist, not neurologist.
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Re: Twitching and pain and stress !!!!

Postby JOHN1189KY on November 2nd, 2014, 2:55 am

I had a neurologist tell me once that ALS is about "failure", not "feeling".
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Re: Twitching and pain and stress !!!!

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