A pep post...your favorite success stories!!!

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Re: A pep post...your favorite success stories!!!

Postby Tobes on October 10th, 2012, 2:44 am

You're welcome! :D

I have to admit, I'm absolutely doing this for my own purposes and just thought I could share my finds in case somebody else also takes comfort in these stories.

So, for the time being there's enough material to keep going for a while.

Althuogh, for the moment, I have run out of thoughtful commentaries saying something else than what has been said numerous times before.

Besides, I think these stories speak for themselves.

So, just flip the next page in the BFS-Gone-Good calendar.

viewtopic.php?f=3&t=17315
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Re: A pep post...your favorite success stories!!!

Postby Tobes on October 11th, 2012, 2:56 am

A warm Good Morning to all BFSers out there from merry old Germany!! :-)

I'll keep it short and treat you with yet another recovery story from the beginnings of AbouBFS.

Remember and always tell yourself the lessons to be learned from these stories:

BFS can take many different courses, but in the long run it is typical for people to get better, mentally but also physically.

Even complete recovery is very possible, as you can read again in today's story.

In either case it is BENIGN and all of us can learn to deal with it.

Enjoy.

viewtopic.php?f=8&t=765
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Re: A pep post...your favorite success stories!!!

Postby Tobes on October 13th, 2012, 10:34 am

New day, new post, old story.

Got to keep reminding myself that even if the ride may be long and rough, there's good reason to hope for the better.


Enjoy.

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Re: A pep post...your favorite success stories!!!

Postby Tobes on October 13th, 2012, 10:43 am

Ouuuuuch...just realized that the old links don't work anymore... :(

...let's hope that our great admins get that fixed...

...or I'll just start over again... :?

In the end it's all for the good...searching and reading these stories is really encouraging and inducing optimism!

You should try for yourselves.
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Re: A pep post...your favorite success stories!!!

Postby Tobes on October 13th, 2012, 11:04 am

Just for completeness' sake...

viewtopic.php?f=3&t=5471
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Re: A pep post...your favorite success stories!!!

Postby Tobes on October 14th, 2012, 3:36 am

Another veteran twitcher talking sense.

Happy and healthy Sunday to all of you.

viewtopic.php?f=3&t=14618
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Re: A pep post...your favorite success stories!!!

Postby Tobes on October 15th, 2012, 6:52 am

Even though all the former links seem to be broken, I'll continue my quest to take the edge off BFS-fear.

Before that, however, I want to make use of the forum's intended purpose and write some worries off my back.

As it is, I had a rough week and a bad weekend. The twitching seems to progress constantly and my muscles cause increasing trouble.

At the weekend I had pretty constant twitching in the arms and hands, before they would just show the odd twitch once in a while.

Of course, my calves are not alone 24/7 any longer, the rest of my legs have joined the party.

Also, my legs are killing me. They are really sore and seem to have painful lumps or knots...brrrrr... :evil:

Right now, my right thigh is happily buzzing away...also some new and rather annoying development.

I really don't think this is ALS, all the appearing symptoms stronly point to BFS...but I wouldn't mind staying in the "light BFSer" category.

Right now, things seem to be going southward and picking up speed along the way.

Even though I have read so many survivor's stories by now and knowing from them that all sorts of BFS courses are possible and "normal" and that even after a long progression there may very well be relief and improvement in the future, this is really testing my willpower and mental stamina.

It just seems to get worse and worse and worse...and no hint whatsoever where eventually this might lead...bad cramping?...bad face and tongue twitching?...severe constant muscle pain?...


Puuuuhh...ok, sorry for the whining, but writing stuff off your back helps.

So, the pity party is closed for today and I have a new story. All these stories show that what I am - and quite likely many of you are - experiencing is really not uncommon and that BFS can be successfully dealt with.

Enjoy.

viewtopic.php?f=4&t=10077
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Re: A pep post...your favorite success stories!!!

Postby Tobes on October 16th, 2012, 2:42 am

Good morning my fellow twitchers!

Today I want to share a story with you I found particularly uplifting when reading.

Because it describes in a very personal manner how much suffering this BFS-ordeal can cause but also how it can be significantly decreased by working on your mind.

I, for my part, am particularly impressed by the accepting state of mind this BFSer reached, not hammering positive thinking paroles into his head - although I find there is much more merit in this than in obsessive catastrophizing - but rather in accepting life with all its chances and risks and going on to live it as happily as possible as long as it lasts.

I believe this mindset to be particularly soothing as it really emancipates one from desperately hoping for physical improvement and potential disappointments if such does not occur for a longer while.

Don't get me wrong, I still do firmly believe that most of us will experience physical relief sooner or later, but an accepting mindset will surely speed up the healing and greatly reduce the suffering in between.

The more I read stories like this the more I get convinced that the mind plays a big role in this BFS crap, even in the purely physiological manifestations.

That's what many vets claim on this forum but again, sometimes you have to read and see for yourselves to believe.

Personally, I have a very hard time to let go of my former life and accepting BFS and all the BS that comes with it, twitching, fatigue, pain.

But I'm working on it and this story may very well help to go another tiny step in this direction.


viewtopic.php?f=3&t=7760
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Re: A pep post...your favorite success stories!!!

Postby Tobes on October 17th, 2012, 7:08 am

Another message from one of the twitching forefathers dating back to the beginnings of the forum.

Anyone want to take a guess at what he's reporting about...???!

Be good and healthy, everybody.

viewtopic.php?f=8&t=13981
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Re: A pep post...your favorite success stories!!!

Postby Tobes on October 17th, 2012, 10:38 am

Great, the links of the old posts seem to work again!! :-)

So thanks to our great administrators!

As a token of my gratitude and happiness, I'll provide another story for today.

Another oldtimer who had a rough ride and finally found a way to cope.

We're all in the same boat and that boat is not going to sink!!

viewtopic.php?f=3&t=13642
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Re: A pep post...your favorite success stories!!!

Postby Tobes on October 18th, 2012, 2:51 am

Good morning,

today I want to share with you another report of a long-term veteran who has been in this BFS-heaven of ours for long years.
Another sufferer who has seen and experienced it all and who just rode it out over quite some time.

Apparently she had the support of a great doctor and some of us share this fortunate situation.

However, many don't. In fact, in Germany BFS doesn't even exist so nobody is going to tell you what to expect and what the odds are and how to cope with it.
For all those of us, get your information from this forum and most importantly take comfort from other people's stories.

Saying again and again that even with the long symptom list it's never ever going to develop into anything more sinsister than a major mindf***.
And what's more important, that in time everybody can learn to deal with it and that the odds of it finally subsiding and improving are favorable for all of us.

I really do know, for months I have been struggling with ever changing and ever more severe symptoms.
And every single time and day, my mind wants to take the easy way downstairs...it's just so easy to let go.

But downstairs is really not the place I want to be and I would supect that holds true for all of us.
So, I have to tackle the mental ascent once again.
And - to give humility a little break - my slowly growing collection of positive stories here increasingly proves itself to be quite an asset.

So, my little suggestion: If you're really feeling down thinking that there's no way that you will ever come to terms with this BFS-crap, read the thread right from the beginning.
All stories at once, one after the other, even if you have been following it regularly.
I am not a veteran, I have no idea where all this will lead me and what I will have to endure in the future and I can't claim to have found any handle on my BFS, yet.
However, this much advice I can and I'd like to give.

For all of you in need of some peace of mind, believe the many people out of the forum's past: BFS can be beat!!!

It ain't quick and it ain't easy, BUT IT IS NOT ONLY POSSBILE BUT IT IS RATHER VERY LIKELY!!!!

Enjoy.

viewtopic.php?f=4&t=7506
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Re: A pep post...your favorite success stories!!!

Postby Tobes on October 19th, 2012, 4:42 am

Hi everybody,

welcome to another day with my personal mental hygiene thread.

Apart from its positive attitude spirit it has become somewhat of a BFS diary for me, where I write bad and irksome stuff off my back.

Another thing I can highly recommend. Writing a diary is like giving your worries and your sorrow and fear away to somebody else, it can be a real relief.

So, today I want to tell about good and bad days. Something we have all read from others before but which I am personally experiencing in full force myself now.

Yesterday, I thought I was having the best day in weeks or maybe even months. The twitching was really bearable, there was not much pain and no real feeling of weekness.
I had slept kind of ok (that is, for my personal standards, which aren't really high, anyway) and I was having a brisk walk to the office. And I felt good afterwards and that lasted almost the entire day.

But already in the evening I noticed that something was changing. The twitches slowly gathered speed, then there was the buzzing thigh again and when I finally got to bed, twitching and buzzing was again as bad as it had ever been.

But at night, things got even worse. I woke up several times and both big toes were buzzing and tingling and pins-and-needling and whatever, that was truly awful. And due to the heavy twitching I have painful spots all over my legs again.

But what's really killing me is some new bloating/digestive/colon stuff. I have a somewhat sharp intestinal pain right in the middle of my belly below the bellybutton. Feels kind of like my colon gets ripped apart. I have this pain for about 4 days now, but very mildly compared to this night.

I don't know...here comes the health anxiety again.
Colon cancer...?
Morbus Crohn...?
IBS...?
BFS related...?

But then again, I could just have eaten something bad...?

I'll try to convince myself of the latter, but it is really hard to mentally keep pace with this crazy symptom circus... :evil:

So, if anybody has some reassuring thoughts or comments to share feel free to OT in this thread.

If not, that's just fine and do what I do and read the next story of another twitcher who experienced all the bad stuff herself but who saw it through and came out stronger than before.
Besides, she strogly advocates the positive attitude approach I try to implement with this thread.

Enjoy.

viewtopic.php?f=4&t=5970
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Re: A pep post...your favorite success stories!!!

Postby MarioMangler on October 19th, 2012, 10:19 am

I have had IBS/Crohn symptoms for years, even way before I ever had BFS. I have been tested up and down, backwards and forwards, and they never find anything. I am guessing that and my BFS stuff must be somehow related. I imagine they are both related to a nervous system spinning out of control. By the way, nearly everyone who has BFS has some sort of digestive issue, this is a very very common thing around here. And it makes sense when you realize that IBS used to be called "spastic colon."
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Re: A pep post...your favorite success stories!!!

Postby jerry2 on October 19th, 2012, 10:51 am

I had IBS for 7 years prior to BFS also. I guess my wierd things in there were just some kind of "twitching in the colon tract" with food moving up and down not only down and made (and still does) all kind of problems. My IBS actually seemed to develop into BFS at least chronologically, and as others say that have digestive problems it is all connected. If we like it or not ;-) but digestive system is supposed to have nearly as much nerve cells as the spine itself, so it is a "little brain" of it't own. For some of us it has it's own brain also.
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Re: A pep post...your favorite success stories!!!

Postby Tobes on October 19th, 2012, 11:18 am

Hey thanks guys! :D

Makes totally sense to me, kind of figured as much myself.
However, really convincing yourself about it is something different altogether.
So thanks, that helps!
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Re: A pep post...your favorite success stories!!!

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