Is it Anxiety / Stress or is it Disease?

[BFSBurger]

First off -

I wish we could sticky this post from Chrissi. Seriously Chrissi you are like the Oracle of Wisdom on this web site. Everything you say makes total sense to me for some reason, and I get all worked up (in a good way) at how perfectly you put things. This post might be wordsmith'd and stickied into a post somewhere ... i wish i wish. Maybe I'll make a blog site and include it.

And as usually, I agree with SAM. I believe that most of us will find relief if they change their attitude towards and a bit of their lifestyle.

So so so true.

The ones that just got over the anxiety about ALS and feel OK now. Not healed from BFS, but their twitching became some kind of background noise to them.They feel OK if they live with this forever. They like their lifestyle and because they know that BFS won't kill them and they are OK with it, there's no reason for them to change anything. Those are the ones that will give the advice: stop obsessing with ALS and everything will be OK. I think this can be a good solution for many people on the board. People like Johnnythejet for example or many other oldtimers.They just don't give a *beep* about their BFS anymore and will live happily with this for the rest of their lives. Which will be just as long and joyful as those of any other person in the world.

So well put. Do you think these people could join us in Group 2 though, if they took some steps? Or is it possible that the longer you have it, the harder that becomes? I have a theory that the longer you let any health condition flourish, the harder it is to correct it. Of course I would wish the former, not the latter for all the above people. But I've noticed that they not only think nothing works, but they also have no desire to try and see. Maybe the two go hand in hand.

2. the ones that canot accept when anything is "not right" with their bodies. Those are often people that feel a deep influence on their lives by BFS, usually by the pain that comes along. Those people are getting much happier once they loose their anxiety about ALS. But not really happy. They wonder what else it can be now they know that they are not dying. So they will search for cures of any kind. Usually their BFS will get much better once they try something that consists of a moderate exercise programme, a relatively healthy lifestyle and a change in attitude. Some meditation.Slowing down their hyper nerve system. Slowing down their life. Getting control over anxiety and obsessive thinking.

Me!

Those are the ones that even take some benefit from BFS because it leads them to a healthier lifestyle. So just like others mentioned above, they will live happily and maybe generally healthy and fit for the rest of their lives. People like SAM, SuzyQ, myself and others.

So well put. Seriously ...

Once the body gets into a state of hyperexciteability, it can never ever ever ever calm down as long as the brain does not let it. I mean this as I say it. Noone on this board, be it in group one or 2, will ever get rid or feel OK with BFS as long as this person does not get rid of the tendency to obsess with deadly diseases.

Favorite post of the year. (even though its only February)

[anita]

Very interesting discussion! I'd be so interested if we could all come together and take part in a study conducted by a medical authority. Pity we are all all-over the world . I'm in Sydney Australia. Anyone else from Sydney?

[chrissi]

If someone feels OK with the twitching and it does not bother this person any more, why should this person make severe changes in lifestyle? Twitching does not kill you or anything, you can twitch happily till you are 100. And even more, in many cases the twitching vanishes all by itself after a while. I know that caffeine will trigger my tremors. But I love coffee. And so I am just not willing to change my coffee and chocolate habits. I want to do a lot to improve my symptoms, but I will not let my fight against BFS take away all things that I like. What I wanted to say is that there's not ONE way to deal with BFS. There are various ways to get along with it. But if you don't stop obsessing with diseases, you will not deal with it any time.
Thanx you for the compliments lol but also my view on things is only one way of dealing with BFS. And treating others with BFS. People on this board are so different, they also need to be treated differently. Some only need the support of a big group and benefit from all the work and information Gary John and Arron provide here. Some additionally like what I do. Others benefit from the unlimited patience and empathy they receive from Leanne on the chatroom. And there are a lot of people that really take advantage from a good old kick in their butt after a while from other oldtimers that tell them to stop whining about twitches. People just are different and have different needs.

[TwitchyDoc]

anita:
There is a BFS study done by medical community-ALS experts but people just do not want to attend from some reasons. You can participate, it is very simple:

viewtopic.php?f=3&t=18339

If we do not get more people, they will not conduct the study as a small sample (meaning also their real patients) is not proving anything. So again, please join if you can, it takes you few minutes - just fill in the form and scan your EMG results / blood work or whatever you have.

[jerry2]

Chrissi: SOme of us have other, more deliberating problems than twitching. Twitching doesn't hurt, only in the mind! Some of us can not "move on" becuase there is not only twitching that bothers us. It is the pain. I for example, can not get used to that I have hard time washing dishes, I can forget about moving boxes or furniture etc. I can not move on with this like it is nothing, becuase it is crippling me in more ways than twitching is crippling one's head because of the deadly diseases.

[chrissi]

Well yes this is what I mentioned in my first answer. Group 2 LOL. People that feel so debiliated by the additional symptoms ( not the twitching) that they will try to find relief from this. I know how bad the pain with BFS can get ,I have been there, and it is just logical that you don't want to live with this forever.

[Fabiola]

In my case I only have the twitches and even when I know that they won´t kill me after 3 EMG perfectly normal and after visited like 6 neurologists and another specialists I´m not in calm. Now Im in a treatment with an inmunologist that found a bacteria called leptospira in my blood but I have to be patient to see if the treatment works and if this bacteria is the cause of all this mess. I really hope that it works because living like that for me is like no have peace anytime I´m not feeling able to make new projects I wish to be fine or at least a little bit better to continue with my plans, like for example find another work out of my country, fly and do my life in peace, but like that...pfff it seems difficult to me. Since I started with this, I´ve done many changes in my lifestyle: better nutrition, exow can we do ercise, stress control, take of suplements, maybe the attitude is the most difficult thing but I tried everyday and nothing seems to work. My biggest fear is the little twitches in my face can be seen for others, it makes me feel bad, insecure.. Of course if some specialists are doing studies I´m available. The problem is that I´m in Mexico... how can we do??

[Fabiola]

In my case I only have the twitches and even when I know that they won´t kill me after 3 EMG perfectly normal and after visited like 6 neurologists and another specialists I´m not in calm. Now Im in a treatment with an inmunologist that found a bacteria called leptospira in my blood but I have to be patient to see if the treatment works and if this bacteria is the cause of all this mess. I really hope that it works because living like that for me is like no have peace anytime I´m not feeling able to make new projects I wish to be fine or at least a little bit better to continue with my plans, like for example find another work out of my country, fly and do my life in peace, but like that...pfff it seems difficult to me. Since I started with this, I´ve done many changes in my lifestyle: better nutrition, exow can we do ercise, stress control, take of suplements, maybe the attitude is the most difficult thing but I tried everyday and nothing seems to work. My biggest fear is the little twitches in my face can be seen for others, it makes me feel bad, insecure.. Of course if some specialists are doing studies I´m available. The problem is that I´m in Mexico... how can we do??

[SecretAgentMan]

In my case I only have the twitches and even when I know that they won´t kill me after 3 EMG perfectly normal and after visited like 6 neurologists and another specialists I´m not in calm. Now Im in a treatment with an inmunologist that found a bacteria called leptospira in my blood but I have to be patient to see if the treatment works and if this bacteria is the cause of all this mess. I really hope that it works because living like that for me is like no have peace anytime I´m not feeling able to make new projects I wish to be fine or at least a little bit better to continue with my plans, like for example find another work out of my country, fly and do my life in peace, but like that...pfff it seems difficult to me. Since I started with this, I´ve done many changes in my lifestyle: better nutrition, exow can we do ercise, stress control, take of suplements, maybe the attitude is the most difficult thing but I tried everyday and nothing seems to work. My biggest fear is the little twitches in my face can be seen for others, it makes me feel bad, insecure.. Of course if some specialists are doing studies I´m available. The problem is that I´m in Mexico... how can we do??

Fabiola, have you ever tried self hypnosis or meditation? The two are very similar. That may be the ace up your sleeve in getting over that attitude hump. Really our attitudes are habbitual circles of thinking. For example, a twitch happens which causes you to notice it, your programmed analytical brain kicks in and is currently programmed to recieve this twitch with frustration. This cycle repeats continuously causing you to feel even more frustration as you seemingly recognize that you have no control over the way that you react and feel about the symptoms. Self hypnosis or meditation takes your awareness into the subconscious where you can observe the programming as if you were an outsider looking in. There are techniques of visualizing and affirming to make changes to these habbits of thinking. The first step is recognizing the cause and effect relationship. The second step is to actively work to change the direction it takes you in. The third step is to keep at it, because it will take you some time. I can GUARANTEE you that you do have the power to take control of your attitude and you can find your inner peace. We all can. If I can do it anyone can. I was one of the most over analytical people ever. You can do it!

[Fabiola]

thanks for your reply. i've tried with meditation but to be honest maybe not sufficiently. meditate is difficult because you have to try to close your ears to the external noise but in our case we have to close our senses to the internal noise: the fascics, it means a double effort. but i think i'm gonna try again. i need to help to myself, thanks again

[SecretAgentMan]

thanks for your reply. i've tried with meditation but to be honest maybe not sufficiently. meditate is difficult because you have to try to close your ears to the external noise but in our case we have to close our senses to the internal noise: the fascics, it means a double effort. but i think i'm gonna try again. i need to help to myself, thanks again

If it were easy to achieve mental discipline, then the word discipline would not be necessary. It is a skill and an art. As such, vigilance and persistence pays off in the end (and in spades). It’s kind of like hiking up a mountain trail. At first you are just focused on the ground in front of you and how difficult it is to climb. If you don't give up, you start to get the hang of it and trudge on. After a while you realize you've been at it a while and look around to take in the view. If you've carried on long enough, that view can be a breathtaking one. Similarly, if you actively work at metal discipline and turning your attitude around, your entire perspective on life itself begins to take on the benefits of that lofty and breathtaking view. You gain appreciation for the things you have and took for granted. You no longer focus with laser precision on the things that you are unhappy with and want to change. It’s obtainable for everyone. Perspective is everything.

[chrissi]

When you are not yet able to meditate because yuou are too disturbed by your surrounding or by your twitching, you might try to align meditation to movement. I find this easier in the beginnings. Like Qi Gong or meditative running. Once a "path" is created for meditation of any kind, it gets easier.

[Fabiola]

Thanks Crissi and Secret Agent Man... I'm gonna follow your advices, I just need some focus and discipline. As my yoga teacher says: at the beginning you have to meditate not because you want to, but because you must, later this will become another habitus like brush your teeth but with many benefits. Somebody has already told me about the Qi Gong but again I got desesperate very fast... and Rome was not built in one day, so I have to try again. THANKS !!! Big hug for both of you from Mexico