How you can beat BFS - by a 10+ year veteran

This forum is for posting your personal experiences with BFS: symptoms, doctor visits, fears, etc.

Please use this forum to post give and recieve encoragement and reassurance from sharing the trials and triumphs you have faced.

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Re: How you can beat BFS - by a 3+ year veteran

Postby MarioMangler on November 4th, 2011, 8:18 pm

I find that the pain comes in phases. It comes and goes and comes and goes but if you know that you can learn to deal with it.
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: How you can beat BFS - by a 3+ year veteran

Postby mike fla on November 4th, 2011, 8:21 pm

Its weird one day I walked for 8 hours at Universal Studios without any soreness more than could normally be expected. Then I have days where if I walk around my house for 5 minutes and it feels like I walked around at Universal Studios for 8 hours!
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Re: How you can beat BFS - by a 3+ year veteran

Postby MarioMangler on November 5th, 2011, 1:58 am

Yeah see I think that is all based on stress chemicals. Like, if you assume you are going to be weak and tired and in pain, you are. But if you are distracted and you can shut your brain off for a while, sometimes it just disappears. I had the same experience once when I was walking around Disneyland. By the end of the day, I forgot I even had BFS. I was like, oh yeah, wasn't I supposed to not be able to walk this much?
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: How you can beat BFS - by a 3+ year veteran

Postby bfshopeful on November 10th, 2011, 3:23 pm

Mario, it is funny that you and I have come to the same conclusion over our years of independent research. AnxietyCentre.com was actually where I ended up too. I subscribe to that theory and it makes perfect sense that it happened to me. I like you have times where it goes away, only to return when I go back to my old habits. Great advice and thank you.
"It's mind over matter. If you don't mind, it don't matter."
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Re: How you can beat BFS - by a 3+ year veteran

Postby MarioMangler on November 10th, 2011, 4:23 pm

I got tipped off to the Anxiety Centre by a user named kevintwister. Did you ever talk to him? He was the guy who really pointed me in the right direction. Him and Basso and Arron. I'm not really a member of AC anymore but I still use a lot of the relaxation techniques and calming methods almost daily.
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: How you can beat BFS - by a 3+ year veteran

Postby Spencerryan1 on December 25th, 2011, 3:41 pm

Thank you Mario for helping me. I have been twitching for over a year and this really put things into perspective for me. I think more then just the twitching I have such a big problem with the obsessing. Do you have any good suggestions on relaxing? What types of things other then sleep do you do to really relax your body? Thanks for the help.

Sincerely,
Ryan
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Re: How you can beat BFS - by a 3+ year veteran

Postby mike fla on December 25th, 2011, 10:21 pm

Yoga, hot baths/ heating pads and light to moderate exercise can make a difference. I thought yoga was for weird people before I started getting bfs cramping, pain and twitching. I find that I still twitch after yoga but the cramping and pain in my legs/ arms feels better.
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Re: How you can beat BFS - by a 3+ year veteran

Postby Spencerryan1 on December 25th, 2011, 11:18 pm

Thanks mike!
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Re: How you can beat BFS - by a 3+ year veteran

Postby MarioMangler on December 26th, 2011, 1:39 am

Spencerryan1 wrote:Thank you Mario for helping me. I have been twitching for over a year and this really put things into perspective for me. I think more then just the twitching I have such a big problem with the obsessing. Do you have any good suggestions on relaxing? What types of things other then sleep do you do to really relax your body? Thanks for the help.

Sincerely,
Ryan



Yeah the obsession is the big problem that we BFSers face, and I can tell you first hand that it is a *beep* to try to break out of. In my experience the only thing that really helps on a consistent basis is to find something else to do to occupy your time. You really have to just distract yourself. This is why I suggest doing something like plan a party. Plan a big vacation. Write a novel. Coach a little league team. The key is to find something to do that will take up a big chunk of your time and that you will be pretty immersed in for a while. For me, it is always little league. I always feel better between January and June, and coincidentally that is the time period each year where I am spending hours and hours each week as a little league board member and a little league coach. So the key is to find -something- else to occupy your thoughts for a while. It might be different for everyone, but the key is to find -something-. Just sitting there and obsessing over your body 24/7 isn't good for anybody.
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: How you can beat BFS - by a 3+ year veteran

Postby Spencerryan1 on December 26th, 2011, 10:08 pm

Thank you so much Mario for the advice! What are some of the relaxation techniques you use to calm your nervous system down?

Sincerely,
Ryan
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Re: How you can beat BFS - by a 3+ year veteran

Postby MarioMangler on December 27th, 2011, 12:34 am

I used to do meditation a lot but I don't really do it all that much anymore. It is really just about breathing and using mind distraction. You can almost always calm yourself down if you just focus on your breathing and focus on clearing your mind. It takes some practice, but after a while you can get good at it if you just keep at it.
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: How you can beat BFS - by a 3+ year veteran

Postby cincila on December 28th, 2011, 4:01 am

My neuro prescribed me Clonazepam (Rivotril in my country), she said it could calm my nervs. Has anybody tried that? I am taking it for a week now, its strong, but I feel better. Her diagnosis is that I of corse suffer from anxiety and stress (hidden in my head) which irritate my nervs system.
Nevertheless, I am consuming tons of Mg Chloride, Ca and B-complex. I am way better than last year.
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Re: How you can beat BFS - by a 3+ year veteran

Postby MarioMangler on February 27th, 2012, 6:00 pm

Bumping this thread to the top since I think it will help a lot of newbies. Read through the whole thing and read my story. You will see that people have gone through what you are going through. And we all turn out fine. You just have to adapt to the fact that this will be your new normal for 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
User avatar
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Re: How you can beat BFS - by a 3+ year veteran

Postby jerry2 on February 28th, 2012, 7:03 am

Mario, thank you for bumping this to the top, I admit I came on this board later and I didn't have a chance to read it (didn't find it before).

I do agree with everything you say, it is all true. When I was reading I found out we are quite alike, even both our viwes do that with their eyes when we are "dying of something". And seems we both are computer programmers with boring things to do (programing is no fun and access to the net is a must)...

There are 2 main differences I see between you and me.

1. You didn't scare at ALS as I did at all. Your personality helped I guess, maybe your doctor also helped. My personality didn't help me here. My doctor didn't help me either when I asked him: Can this be ALS and he told me, yes it can, but I don't know. I asked him: Can this be BFS (I was already on the board when I had my nevrology exam) and he told me: Unlikely, BFS is so rare it is 20 times more rare than ALS, I have one patient a year with it. Let me just say that didn't help my reassurance. I am not saying it would be much different for me if he told me I have BFS, but it may be that difference my mind was missing. He even saw some atrophy. Can this be from ALS? Well, I can not tell you it can not be. So I was in a terrible scare of ALS and to some degree I still am although the three letter word is fading slowly. Heck, I'll be in the newspapers if I have ALS with a title: "The man with the most wierd way of the ALS to present to this day". MS and other diseases didn't bother me ever. You live, you can fight! ALS is no cure, no help, and a terrible way to die, taked from a Stephen King movies. Motor paralyses...

2. You seem or don't mention any pain just buzzing and twitching. I also have tremor, tingling, numbness. And of course twitching. And I know, like you told in this post, all this things are not deliberatingl, they are more scary. Can you still lift a book if you twitch? Yes, you can. From the ondition that isn't affecting your daily work, just bothersome (with a capital B!) I believe in time and with meditation you can let it go, as you also point out. Live your life...

One of my problems is pain in the legs (feet), ankles, arms, left wrist. It really is progressing and I can not let it go. I can not run any more because of my feet (they aren't swolen, they don't look ubnormal, and the muscles and nerves there just buzz and twitch and make me in PAIN). I used to run, I can not now. And I don't know why not, nobody knows what is wrong with them (it has to be something with nerves although mostly my muscles are crampy and my tendons and joints are sore to the point I have hard pain to twitch my ankle). I like to dance. I still can. If this progresses I will not be able to dance. I liked to do pushups to do something good. Now I can not. My left arm fails me. I am not in some 100% fear of ALS weakness, it is that the wrist develops such pain when I try my hand colapses in pain. In 3 months, maybe I am unable to walk. As you said your wife wringles with eyes and tell you: it is monday, take the trash out. My wife says the same (and really, also mondays!) but I have hard time lifting the trash with left arm, my tendons/muscles have this pain that I barely do it if it is heavy.

And this I can not let it go. It is affecting my ability to bring my anxiety down, to relax. Hell, will I be in whellchair for no reason in a year or what?

I still fear twitching more than pain, but I know in time I will overcome this. It is 5 months now and I can still lift on my heel and toes and the feet is allways twitching. With pain in heel and ankle and soles (so I can not run or if I did it would just be too much pain to enjoy it) but I can do it. After 5 months. I guess at one time I'll found out they are just twitches, annoying, but just that. Nigh hands tremor trembles my hands and wakes me, but I can still use my hands (minus the pain in one arm and wrist), at this moment it seems it is doing no permanent damage. But how do I let go the pain if it is crippling my ability to DO things?

I know you don't have the answer, but from your really well written reading I found out I have hard time following your advices if you don't have anything that is crippling you phisically.

I still don't know wither to rest the feet or suffer with pain but do what I like? Seem rest isn't beneficial, sometimes after i dance feet are worse and sometimes just the same.

And I really can accept the theory of the fight and run adrenalin thing. For nervous system. But I have hard time believeing my mind could be making my pain in the limbs that is getting worse. So I am still searching for the miracle "what is wrong with my limbs pain" but there seem to be no clue in what I have. Is this part of BFS (the tingling, buzzing twitching in feet would suggest nerves are also involved) and the nerves are making my muscles stiff in fett and hand or what the beep is going on.

I am not saying I can forget the twitching, but in the end, the pain seems to be crippling me, not twtiching. PS - The foot that twitches 500% more is the foot that has 5 times less pain so I don't know if this is connected at all...
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Re: How you can beat BFS - by a 3+ year veteran

Postby KatieMG on April 5th, 2012, 10:06 pm

This is a great post! Thanks!
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Re: How you can beat BFS - by a 3+ year veteran

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