Possible cure?

Information about how to manage or reduce the severity of BFS symptoms

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Possible cure?

Postby ag2002 on July 6th, 2013, 1:55 pm

I believe that the majority of persons on this board are dealing with anxiety as there main issue. For most here there was something that pushed there anxiety over the edge and it manifested as BFS. Most of us are or were in denial of the fact that anxiety is our core problem. If we can get control of our anxiety then eventually our symptoms will get better and hopefully disappear. OUR SYMPTOMS ARE REAL, BUT YOU CANNOT IGNORE ANXIETY AS THE MAIN OR ONLY UNDERLYING CAUSE. I went to the anxiety center at http://www.anxietycentre.com and am sure now that I do have underlying anxiety that has caused my nerves to go haywire. The lead psychologist on the board actually has a newly posted interview with a guy that has BFS. He says that he has seen BFS numerous times and that it always comes down to anxiety. My suggestion is to go to the anxiety center and check it out. It does cost to become a member, however it is not that expensive and it is worth it if it helps you heal from this thing we call BFS. I hope everyone finds healing. God bless.

Jerad
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Re: Possible cure?

Postby MarioMangler on July 7th, 2013, 1:25 pm

The Anxiety Centre was the place that helped me too. They have hundreds of recovering "BFS sufferers" over there. All you have to is read through their members section and you will figure out in about ten minutes that you don't have anything serious, all you have is a hyperactive nervous system. And the treatment for that is the same thing as the treatment for anxiety. Relaxation, rest, recovery time, and body self awareness. BFS really isn't anything more than that. Just learn how to read what your body is telling you and either choose to ignore it or treat it. Either way it is all just a nervous system you have sent into overload. It's annoying but it's not gonna hurt 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: Possible cure?

Postby BFSBurger on July 7th, 2013, 3:17 pm

Good to know ag - thanks for posting this.

-B-
How I resolved my BFS within 1 year of onset:

viewtopic.php?f=3&t=19128
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Re: Possible cure?

Postby seventhcandle on July 10th, 2013, 12:07 am

ag2002 wrote:I believe that the majority of persons on this board are dealing with anxiety as there main issue. For most here there was something that pushed there anxiety over the edge and it manifested as BFS. Most of us are or were in denial of the fact that anxiety is our core problem. If we can get control of our anxiety then eventually our symptoms will get better and hopefully disappear. OUR SYMPTOMS ARE REAL, BUT YOU CANNOT IGNORE ANXIETY AS THE MAIN OR ONLY UNDERLYING CAUSE. I went to the anxiety center at http://www.anxietycentre.com and am sure now that I do have underlying anxiety that has caused my nerves to go haywire. The lead psychologist on the board actually has a newly posted interview with a guy that has BFS. He says that he has seen BFS numerous times and that it always comes down to anxiety. My suggestion is to go to the anxiety center and check it out. It does cost to become a member, however it is not that expensive and it is worth it if it helps you heal from this thing we call BFS. I hope everyone finds healing. God bless.

Jerad


I joined this site a few months ago and it definitely was helpful. Reducing my anxiety and getting more sleep along with a diet that was consistent and kind to my body have made my BFS tremendously more bearable. The twitching may never go away, but it doesn't bother me as much as it used to.

Oh, and my new girlfriend even told me she had a bad, but brief run, with BFS after a period of intense stress and anxiety coupled with a lot of energy drinks...she 100% recovered. There is hope.
Been on the BFS journey since 6/26/12...

Twitch way do I go from here?

BFS does get better with time. Almost two years in and able to do almost everything I could do before I had this condition. Still twitching away of course...
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Re: Possible cure?

Postby G-Dog on July 24th, 2013, 10:08 am

ag2002 wrote:I believe that the majority of persons on this board are dealing with anxiety as there main issue. For most here there was something that pushed there anxiety over the edge and it manifested as BFS. Most of us are or were in denial of the fact that anxiety is our core problem. If we can get control of our anxiety then eventually our symptoms will get better and hopefully disappear. OUR SYMPTOMS ARE REAL, BUT YOU CANNOT IGNORE ANXIETY AS THE MAIN OR ONLY UNDERLYING CAUSE. I went to the anxiety center at http://www.anxietycentre.com and am sure now that I do have underlying anxiety that has caused my nerves to go haywire. The lead psychologist on the board actually has a newly posted interview with a guy that has BFS. He says that he has seen BFS numerous times and that it always comes down to anxiety. My suggestion is to go to the anxiety center and check it out. It does cost to become a member, however it is not that expensive and it is worth it if it helps you heal from this thing we call BFS. I hope everyone finds healing. God bless.

Jerad


+1 for anxiety

I've had this on/off for nearly 4 yrs. It's directly correlated to stress and anxiety, different people manifest their anxiety in different ways, some get IBS, BFS, muscle stiffness, palpitations and some unfortunate souls get the whole lot!
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Re: Possible cure?

Postby Tom_65 on July 30th, 2013, 5:22 pm

I absolutely can buy into this theory! My BFS symptoms started a few months after my wife had unexpectedly passed away. (I came home from work and found her on our bedroom floor after talking to her on the phone only an hour before) My anxiety along with depression set in at that time and it wasn't long after that I started noticing the BFS symptoms. When my neurologist diagnosed me as having BFS, he asked about my anxiety level and told me that anxiety is a trigger for the BFS symptoms. Control, or get rid of the anxiety. Much easier said than done! I've seen counsellors, therapists etc with very little or no success. Trying to get to see an actual psychiatrist up here in Canada is next to impossible and the waiting period to be seen is, I'm told, is 6 - 8 months.
I know I don't post a lot here, but I do pop on at least once a week to read through the posts...somehow it's comforting to know you're not alone in this!
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Re: Possible cure?

Postby minime640 on July 30th, 2013, 6:47 pm

I think it depends on the person. If your symptoms came on after a period of stress, or you have a history of anxiety, then absolutely anxiety centre could help. However, some people's symptoms coincide with viral infections, etc. and I'm not sure that approaching those people from a standpoint of anxiety managment would do much.
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Re: Possible cure?

Postby chicagobfs on July 31st, 2013, 10:13 pm

Can anyone please tell me what do you get when you pay? Is there a forum? Articles? Videos?
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Re: Possible cure?

Postby ag2002 on August 3rd, 2013, 5:39 pm

You get all sorts of information about how the body deals with stress and different areas that are involved (physical, psychological, emotional, and spiritual). I joined and have been a member for a month. There is so much information that I am thinking about doing 6 months or a year, which is about $40. This website is worth more than all the supplements I took, the psychiatrist and psychologist I have and am seeing, and all the neurologists. It talks about the cycle of fear we get into: fear->worry->anxiety->physical symptoms of anxiety->fear over symptoms->worry-> anxiety->more physical symptoms, and on and on it goes. It talks about all the possible reasons we live more fearful lives that the majority of people. I am learning that I am a people pleaser and other underlying factors that have lead to fear I am creating for myself. Our mind is very powerful. We create our own prison based on fear. The website does have psychologist or behavioral coaches that you can pay for in addition to the membership, but you don't have to. Overall, I would say besides the klonopin I am taking this is the most promising thing I have done. I really do believe that my symptoms will go away, however it will take awhile. Amazing website.
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Re: Possible cure?

Postby NotMyself on September 30th, 2013, 5:56 pm

Not to spoil the party, but what scientific basis does this site even have? I want my $10 back.
The author lists the symptoms HE experienced. This does not necessarily mean they are all anxiety symptoms.
Secondly, the therapists are not even certified. They're just a bunch of Masters students who apparently experienced anxiety.
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Re: Possible cure?

Postby jerry2 on September 30th, 2013, 11:39 pm

I tried that site. FOR ME it has all the indications that is a scam site e.g. only wants your money. It lists every possible symptom without any evidence, any research etc.
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Re: Possible cure?

Postby yaumno on October 11th, 2013, 9:12 am

I'm a man of science, so I'm inclined to agree with the previous two posters. At least, I would have been before I experienced an electric shock and subsequently developed BFS symptoms. I completely support the idea that one needs evidence to back up claims about the cause of a symptom or the efficacy of a treatment, however, the last six months have shown me that there is still quite a large knowledge gap in medical science. This is particularly true regarding the nervous system and how it can be affected by electrical injury.

I have experienced massive amounts of throbbing pain in my arms, consistent muscle ratcheting, and widespread (although relatively infrequent) fasciculations. After many visits to different neurologists and other specialists I still have no definitive diagnosis. According to all of the medical tests (SEP, EMG, MRI, EEG) my nervous system is completely healthy, although I very clearly understand that this is not the case.

In fact, the "muscle ratcheting" symptom that more than 150 users on this forum experience daily has no medical name and many of the doctors I have spoken to are completely astounded when I show it to them. It definitely has something to do with an enhanced physiological tremor due to a PNH syndrome of some variety, but that extremely non-specific title is the only label I have been able to come up with after months of research and testing.

So how does this relate to the anxiety website mentioned in this thread? Well, I think that perhaps there is space in the medical field for a good amount of anecdotal evidence when there is a lack of hard evidence. If the people on that site have some luck with controlling their anxiety, and thereby their symptoms, then they should press on. It does seem suspect that they mention hundreds of symptoms attributable to anxiety but who knows, in certain cases that might be what's really causing their symptoms.
Tempus edax rerum: "Time devours all things" - Ovid from "Metamorphoses"
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Re: Possible cure?

Postby SecretAgentMan on October 11th, 2013, 9:37 am

Well said yaumno. It took me coming down with BFS and conventional medical doctors failing me in order for me to open my mind to new and alternative ideas. I NEVER would have humored concepts of acupuncture and other alternative medicine techniques otherwise. What I learned when I started trying these techniques and researching the science behind them astounded me. There is actually a great deal of knowledge available but the problem is that there is no publicity. When aspects of this knowledge are put forth, many people cannot believe it because it contradicts what they think they know. Based on my experience with these new found aspects of medicine (by me), I fully believe BFS is 100% curable. It's just that people are barking up the wrong trees for answers.
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: Possible cure?

Postby yaumno on October 12th, 2013, 4:17 am

I like your attitude SecretAgentMan but I would like to respectfully disagree with you on a few points.

First, I dislike the phrase, "alternative medicine," simply because it betrays itself. An effective treatment is effective. An "alternative" is therefore, by definition, ineffective. It is an unfortunate problem in medical nomenclature that older forms of medical treatment are referred to in this way. However, many types of older (read: eastern, alternative, no-longer-in-use) treatments are indeed ineffective, or at the very least, the reasons for performing them are incorrect. Let's take acupuncture as an example. This practice has been used as medicine since about 200 b.c. and is based on the theory that "qi" is a form of energy flowing through the body, interruptions in this flow can be rectified with needling. Now we know that the theory of "qi" is entirely incorrect, however, numerous controlled studies have shown acupuncture to be moderately effective in reducing chronic pain. This effectiveness is most likely due to distraction or the placebo effect but, if it is effective under certain circumstances then, by all means continue.

Second, BFS is - by its name - a syndrome. This simply means that it is a collection of signs, symptoms, and phenomena occurring together. As with any syndrome there may exist a single cause, or many different causes. I strongly believe that BFS falls into the latter category. My BFS began immediately following an electrical injury, others attribute their BFS to a virus or drug, and still others attribute their BFS to anxiety. What I mean to say is that BFS is merely a name given to the collection of symptoms caused by some underlying disease process. Unfortunately for us, and to the dismay of many members of this site, the underlying cause remains unknown.

Therefore, some cases (those caused by a drug therapy or anxiety) may be curable while others (those caused by a virus, genetic factors, or trauma) may not. Personally I believe that most cases of BFS have a specific biological cause that our incomplete neurological knowledge has yet been unable to identify. My readings into electrical injury have revealed to me that electricity can produce structural and functional changes in the anterior horn cells of the spinal cord and other authors have suggested that these cells may be implicated in BFS and CFS too. I am currently working on compiling my thoughts and readings into a few documents to publish online for public viewing and discussion. My university affiliation affords me access to almost every online scientific journal so I will also be able to include copies of the readings I have used to reach these thoughts (as long as the authors allow me to do so).

I sincerely hope that my ideas do not irritate you in any way, I am only posting them here to promote informed discussion. I am analytical by nature and sometimes my tone can turn people off. Also, I have read some of your other posts and you seem to be a proponent of alternative treatments. Which ones are you interested in, besides acupuncture, and what have you learned that made them seem efficacious or attractive?
Tempus edax rerum: "Time devours all things" - Ovid from "Metamorphoses"
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Re: Possible cure?

Postby G-Dog on October 12th, 2013, 2:52 pm

yaumno wrote:First, I dislike the phrase, "alternative medicine," simply because it betrays itself. An effective treatment is effective. An "alternative" is therefore, by definition, ineffective.


It's a good point and reminds me of a quote I heard recently

"You know what they call alternative medicine that’s been proved to work?... Medicine"
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