It's been a while ( posted in wrong area)

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It's been a while ( posted in wrong area)

Postby german on February 21st, 2014, 9:19 am

It's been a while since I've been on here.
After 3.5 years of having this stuff I hope I can offer some relief or relaxation to many of you.

My abscence here was because of 2 reasons.
1. I got tired of trying to reason this stuff out.
2. My buisness got so busy I couldn't designate time to do this anymore.

The good news is that I have come to some conclusions. You can do what you want with this info but just know it's not intended to hurt or frustrate anyone.These are just my experiences.

I had a long period of a serious reduction in symptoms. I also noticed my symptom definetly went up and down as my anxiety went up and down. During the time that "I didn't notice anything" and felt 90% better, all I remember is that I didn't think about this stuff. I wasn't trying not to focus on it, I just didn't think about it because I was preoccupied. I strongly believe thats a crucial factor.
I also realized that this stuff( like most things) cannot be put in a box. Symptoms vary from person to person and aren't limited at all to twitches.
Even after 3.5 years with a good 1 to 1.5 years of almost no issues I recently had a few months of severe anxiety and "what do you know" my body started freaking out again( along with my mind). THERE IS NO WAY THATS COINCIDENTAL!!!
I have talked to others on totally different forums dealing with other health issues as I experience gastrointestinal issues as well and those people have other symptoms too that bleed over into other things like heart palpitations, twitching, body stiffness and rigidity, sensation issues, paresthesia, dizziness, dis-coordination, clumsiness, finger movement, speaking issues, swallowing issues, chewing issues, tongue issues, brain fog, pain, numbness and the list goes on and on.

So my deductions are this. I strongly believe that many of those who suffer from this have thrashed their nervous systems to the point of hyper excitability( not a new theory I know but I totally belive it now).
I also strongly believe that it takes a good long while to get a tweaked nervous sytem calmed down. If you doubt this talk to a PSTD patient.
So basically, I believe this is toatally benign, totally manageable and totally recoverable.
So in the matrix words of Morphius " don't think you are, know you are"
And for those of my brothers and sisters in Christ, speak life and blesings into your lives. It will strenthen you and add peace to your situation.
Live life folks and take your life back. Peace
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Re: It's been a while ( posted in wrong area)

Postby DoubleD on February 21st, 2014, 10:57 am

Hey German,

Great to hear from you. I just popped in a couple weeks ago myself and trolled around. Great great post. i totally agree with everything. All should read it.

God bless

DD
" By this all men will know that you are my diciples, if you love one another." John 13:35

10 years BFS
24/7 twitches all over
Cramps, tingling, buzzing, and a host of other weird things
Until you own your BFS, you will never disown als
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Re: It's been a while ( posted in wrong area)

Postby MarioMangler on February 21st, 2014, 1:24 pm

I totally agree with all of this as well. For years I have believed that BFS is basically just the exact same thing as PTSD. It sucks, but if you know that at least you can deal with it. You (or a virus, or some other external factor) did something to fry your nervous system and make it super sensitive. Once you accept that and you start to see the patterns for what they are, it is pretty easy to work with it and deal with the symptoms. Anything beyond this approach, IMO, is simply overthinking BFS and making things more complicated. BFS really doesn't need to be that complicated.

As you yourself pointed out, and many others have pointed out over the years, when you get nervous or overloaded or stressed out, the symptoms always get worse. Always. And again, as you pointed out, That. Cannot. Be. A. Coincidence.

I am glad to see you are doing better, and I'm glad to hear that you have decided to take back your life again. Hopefully everyone else on the board (especially the newbies) will read this post and will truly understand what you are saying. There seems to be a lot of drama around this place the last couple of weeks that really has no reason to be here. But alas, such is aboutbfs.com. The names change but the running around in circles and overcomplicating things never does.

Good to hear from you.
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: It's been a while ( posted in wrong area)

Postby german on February 21st, 2014, 7:32 pm

Hey, Mario. Hope your doing good.
It's funny, because I've been stressed lately I was able to kind of watch this episode escalate, unlike 3.5 years ago when it was all just one big cluster of a freak show.
To my surprise I noticed my body slowly start to tweak out because I was paying attention.
Contrary to popular belief this stuff doesn't come out of no where but actually gives you signals months prior.
When your RPM's are at 7000 for extended periods of time I now realize the sputters and misfires before the blowout.
I also realized that I need to try to get even closer to low with the anxiety. Living with it and being rid of it are 2 different things.
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Re: It's been a while ( posted in wrong area)

Postby SecretAgentMan on February 22nd, 2014, 9:13 am

MarioMangler wrote:For years I have believed that BFS is basically just the exact same thing as PTSD.


I agree with this 100%. I noticed the parallels and similarities between BFS and PTSD a while back as well. I remember reading the laundry list of PTSD symptoms and thinking about how I had either experienced it or knew somebody on the forum who was experiencing it. I have spent a lot of time thinking about this because I work in an area close to those affected by PTSD and was wondering how some of my experience in overcoming BFS might be able to help others trying to overcome PTSD. It did not take much researching until I came upon an article on the Department of Veteran Affairs (VA) website about ongoing research right now into alternative and complimentary medicine techniques to treat PTSD. In 2011 they had completed their initial round of trails and studies and found very promising results. They were primarily focusing on acupuncture and meditation. The 2nd round of testing and trials was approved and should have started taking place in 2013. I have not seen an update on their website yet. I would love to see the active duty side of the military collaborate with the VA since that is where our troops are getting PTSD in the first place. Perhaps in time...

I believe that with BFS the stress is cumulative over long periods of time. With PTSD it might be one or two incredibly traumatic events or even a week or two of sustained, heavy stress in life or death situations that brings on the symptoms. Either way, I think the body only has a certain tolerance threshold before damage gets done. I do believe that this damage is repairable and recoverable. I believe strongly in the body's ability to heal itself. In order for it to effectively do so it needs to have certain obstacles removed though. That is where I think acupuncture and meditation can be effective where conventional medicine fails. We don't develop these problems because we are deficient in some drug. We develop them because something gets out of balance or we channel too much energy/emotion in an unhealthy manner. When we correct the issue at it's core, we can begin truly healing and sustain ourselves. This is also why I believe people who achieve transformation changes in how they handle stress and anxiety can find such great relief.
If your mind is your own worst enemy, why not make friends with it and turn it into your greatest ally? Mental discipline is achievable and there is help available. Learn what works for you, practice, and change your life for the better.
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Re: It's been a while ( posted in wrong area)

Postby MarioMangler on February 22nd, 2014, 4:50 pm

If this were Facebook I would "like" that post. Well said.
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: It's been a while ( posted in wrong area)

Postby german on February 22nd, 2014, 7:59 pm

I also wanted to add how I slowly felt my body tightening up during times of prolonged stress. It comes on subtlety. For me my breathing is the first signal. I notice that I catch myself holding my breath, even bearing down slightly throughout the day.
Then within weeks or days my muscles slowly get tight. My right leg, back, cheeks, jaw and mouth, shoulders, hands, etc...
During this time I also experience sensations of perceived weakness or instability, tingling, dis-coordination, droopy or floppy feelings, all the while twitching picks up.
This stuff can feel very intense for quite a long while. It will also stay until I calm down for a good month or a minimum of a few weeks.
For you new folks, I was tested and monitored by a top neuro for years. I've had 4 emg's, 3 mri's, tons of blood work, etc...
So this is how it can go
Hope that helps
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Re: It's been a while ( posted in wrong area)

Postby SecretAgentMan on February 23rd, 2014, 3:27 pm

Thank you Mario. For anyone interested here is a link to the VA's website indicating the initial success of their trials and research into complimentary and alternative medicine practices such as meditation and acupuncture for use in treating PTSD.

http://www.research.va.gov/research_topics/cam.cfm
If your mind is your own worst enemy, why not make friends with it and turn it into your greatest ally? Mental discipline is achievable and there is help available. Learn what works for you, practice, and change your life for the better.
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Re: It's been a while ( posted in wrong area)

Postby UFGatorGuy20 on February 28th, 2014, 7:18 pm

Glad I came across this. I'm always looking for input from folks that have been dealing with this for multiple years and to know that it is manageable, recoverable, and defeatable. God Bless!
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Re: It's been a while ( posted in wrong area)

Postby german on March 1st, 2014, 2:36 pm

Glad it helped gator guy.
There is one thing I want to say that everyone should know.
I had major symptoms, MAJOR!!! I read all kinds of posts on here while desperatly searching. No one seemed to experience what I was going through at the time( sound familiar). My SX were strong, constant, obvious to others, etc...
I was positive I was in big trouble.
After basically exhausting myself and having to get going with life due to finances, all I remember is driving one day and having it dawn on me that I felt pretty normal. I had some twitches still but it was a very "wow" moment.
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Re: It's been a while ( posted in wrong area)

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