There's room enough for all of us

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There's room enough for all of us

Postby SecretAgentMan on July 22nd, 2013, 8:58 am

There seems to be a bit of a debate heating up on the forum lately regarding the effectiveness of diet modifications. There are some strong opinions on both sides of the aisle on this subject and I just wanted to make a post to hopefully draw people back a few steps to see the big picture. I would like to urge everyone here to be conscientious of the beliefs of others and to be supportive of their constructive efforts to improve their situation. This is a two way street.

If you don’t agree with the concept of diet modifications making a difference then that is perfectly fine, but please resist the urge to make comments that are not constructive or even argumentative. I am not saying anyone in particular is doing this, but the debate is heating up and it could easily head in this direction. Anything I’ve read to this point is subtle, but the energy seems to be building… Please just be respectful of others beliefs, as you would want them to be respectful of yours.

Likewise I would ask in a similar fashion to those who are diet modification believers that you refrain from confrontational comments to sell the point. It is easy to start believing that whatever helps you and a few others will help all. I know because I fell into this way of thinking back in 2010 when I discovered my BFS was hand in hand related to a case of Leaky Gut Syndrome. I wanted to share my success with others but very few took me seriously. The truth is that as badly as we want to help others we can only offer them our ideas. They are free to accept or reject them and it is best to respect that decision and give them their space. They may come back around later, but in their own time. Either way, please be as respectful of their decision as possible.

Everyone on this forum is on the same team. We all came here to be helped and those of us that stick around do so to lend help. There may be ideas we disagree on, but in the big picture we should all support each other when we embark on trying constructive changes to our lifestyle. Switching to a temporary Paleo diet is not harmful so we shouldn’t be dissuading anyone from trying it, even with little sarcastic comments. It just isn’t constructive or supportive to do so. Thank you for your time everyone.
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: There's room enough for all of us

Postby chrissi on July 22nd, 2013, 9:56 am

Thank you SAM. I know how much this debate is heating up. What causes me the most worries is not the question if or if not diet has an influence. Because I would think that anything we put into our bodies has an effect on them, because in the end we are made of what we eat. What always worries me is that we are a bunch pf extremely vulnerable persons on here, with high expectations on ourselves and on the things they do, that they put themselves under a lot of pressure. In a environment with totally relaxed people I would say " hey, that might for sure have an influence for some, just go and try it", it won't harm you" . But I have had so many people that started to get extremely anxious with anything they started BFS wise, that those "easy" words don't come over my lips that easy. I wished you could get a bunch of BFSers that are over the anxious state to join the experiment, because it migh totally be helpful for some people. Unfortunately ( well not really) usually after they lost their anxiety, most people don't care for a bit of twitching anymore. I actually know a few people that I think could totally benefit from the challenge symptom wise. But I am afraid what re- focusing on their symptoms would do to them mentally. Because they are not yet " stable " enough to go through a phase where they focus on their BFS in any way. So the background of this discussion is far more complex than it seems. It is actually not about for or against dietary experiments.
In the end we all want the same : to make others feel better. But what I have learned in my months of talking to scared newbies is, that everyone is different and we have to choose our words and advise wisely and be very very cautious.
The anxiety that comes with BFS ( be it cause or result of it) for many is the bigger problem than the symptoms. I have talked to people that tried to kill themselves, were drunk on a regular basis,used drugs,lost their jobs family and basically their lifes. This is why so many of us " vets" stubbornly advice people to get their anxiety under control and to put their focus away from their symptoms in any way. Because we have seen where it can lead to. Not because we think it is impossible that foods can trigger BFS. But focusing on how a certain food influences your symptoms, in that very moment means focusing on BFS, and this is something many people in the early stages should totally withstain from.

All those fights and emotions just derive from the different points of looking at the overall picture, not from the question of trigger foods themselves.
I still think that it totally possible that some cases of BFS are caused by food intolerances. So I support the experiment, but I just want the people to think twice if they are ready for it mentally or not
"Our anxiety does not come from thinking about the future, but from wanting to control it" Kahlil Gibran
Anxiety is a thin stream of fear trickling through the mind. If encouraged, it cuts a channel into which all other thoughts are drained
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Re: There's room enough for all of us

Postby johnnythejet on July 22nd, 2013, 10:59 am

I completely agree that we all need to be respectful when addressing each other on this forum. Differences of opinion will always occur, but keeping those differences from turning into personal attacks is something we expect. People that find themselves to this community are often struggling and need help in the worst way. It’s important to give them the help they need, without personal drama. There’s no place for it here.

That being said, those same newbies that come here desperately seeking help, need exactly that….help. This is the main purpose and reason for this community. They need good, solid information based on empirical evidence and past experiences proven many times over. They need direction and guidance on how to get their life back. They do not need to be given a pseudo set of “doctor’s orders” from a newbie or anyone else that entails eating a certain way and chugging Gatorade as the key to reducing symptoms in BFS. Diet is not the key to solving BFS, in general. Yes, it may have an effect on a few cases, but we already know the truth based on years of feedback from long-term twitchers. I have no problem with any twitcher claiming that a particular diet, medication, herbal supplement, or magic potion has reduced their symptoms. That being said, everyone here has a right to disagree with or dispute (repeatedly if necessary) any claims made by another poster. That is not a matter of disrespect, but is the very engine required to maintain focus on the most important thing…..truth. Remember that this forum is read by thousands, most of whom will never even register, and it’s of the utmost importance that they receive the best information possible. If I’m posting an idea that you believe is false, then I want people to speak up and dispute my beliefs. Please.

As for any current experiments intended to test a particular diet for impacts on BFS or health in general, that sounds like fun for anyone interested and ready. I support any and all attempts for people to improve their overall health, in general. Improvement in health greatly reduces health anxiety (which can reduce symptoms of course). Unfortunately, going down the road of “testing” things (diets, medication, alternative medicine, etc.) to help with BFS can lead to wasted time, money, lost days, and feeding an unhealthy behavior based on obsession to solve BFS (ultimately extending one’s personal war against BFS). This isn’t true for everyone, but for many. Its important to realize there are real harms, negative impacts, consequences when going down the road of experimentation. So any comments intended to steer newbies away from experimenting, in general, they are for good reason. It is due to the knowledge we have from years and years of twitching, and all the mistakes that were made and lessons learned. For nearly all vets who have been through the ringer, we agree that one of the keys to winning against BFS was acceptance. That’s not to say people aren’t allowed to make their own decisions, but alerting them to the potentially more pain and suffering is imperative. Of course, many will disagree with that rationale and that’s completely fine.
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Re: There's room enough for all of us

Postby SecretAgentMan on July 22nd, 2013, 1:28 pm

As a parent of two young girls I am more and more often being presented with the challenge of balancing my involvement in their learning experiences. On one hand I am offering advice based on my gained experience in life, but at the same time I have to give them the latitude and room to find their own way, make their own mistakes, and learn from them. If you shelter a child too much you almost do them as much harm as if you provide no structure or shelter at all. It is a balancing act. I believe this balancing has relevance in any relationship where one person has experience and is trying to provide help and support to newcomers with very little experience.

I realize there is concern for the fragile and vulnerable newcomers to this site. Some require more reassurance and calming down than others. I am not disagreeing that anxiety management is and should be the primary focus for all BFS sufferers. What I am saying is that we all have experience, but those experiences differ from one another, and therefore can contradict one another. What I would ask is that if we don’t have anything positive or constructive to contribute I would like to see more people refrain from discouraging the trying of new things. When experienced people cast doubtful comments on hopeful dreams it only adds to limiting beliefs. Doubt kills more dreams than failure ever will.

The truth for me is that diet changes were very necessary in order to feel better. Anxiety was actually a symptom of my gluten intolerance. It was verified and validated beyond any reasonable doubt. In some of the vet’s experiences they were able to calm their anxiety and change their thinking habits completely independent of any diet changes. This was physically impossible for me without eliminating a real physical trigger for anxiety in my diet. It’s like rubbing yourself in poison ivy and telling someone not to itch. You have to get out of the poison ivy first. Some people are immune to poison ivy and some aren’t. If someone doesn’t have a problem with the foods they are eating it would be very difficult for them to fathom how eating a food can possibly trigger anxiety or other BFS symptoms. In my experience it can and does happen.

So my point in all of this is that many people may have a lot of wisdom and experience in dealing with BFS through managing their anxiety and this is very valuable, but you do not have the experience that covers the percentage of BFS sufferers like me who have physical reactions to foods. I’m not sure any amount of anxiety management can will away the anxiety caused as an allergic reaction to something. Leaky Gut Syndrome is being linked with many neurological disorders including fibromyalgia, restless leg syndrome, chronic fatigue syndrome, and autoimmune disorders. This is where I have experience. Leaky Gut Syndrome is very real and I have the blood tests to prove my intolerance levels to many common foods people don’t think twice about before eating. These foods fill the FDA’s recommended food pyramid, yet they were toxic to me. I know I’m not the only one whose neurological problems were spawned through LGS. There are others here who may be helped as I was. Please don’t discourage others from looking into their possible options before resigning to live with it. Thanks.
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Re: There's room enough for all of us

Postby johnnythejet on July 22nd, 2013, 2:31 pm

SecretAgentMan wrote:So my point in all of this is that many people may have a lot of wisdom and experience in dealing with BFS through managing their anxiety and this is very valuable, but you do not have the experience that covers the percentage of BFS sufferers like me who have physical reactions to foods. I’m not sure any amount of anxiety management can will away the anxiety caused as an allergic reaction to something. Leaky Gut Syndrome is being linked with many neurological disorders including fibromyalgia, restless leg syndrome, chronic fatigue syndrome, and autoimmune disorders. This is where I have experience. Leaky Gut Syndrome is very real and I have the blood tests to prove my intolerance levels to many common foods people don’t think twice about before eating. These foods fill the FDA’s recommended food pyramid, yet they were toxic to me. I know I’m not the only one whose neurological problems were spawned through LGS. There are others here who may be helped as I was. Please don’t discourage others from looking into their possible options before resigning to live with it. Thanks.


As to your request to refrain from discouraging others from looking into possible options; Please try to understand where I’m coming from. Based on everything I know and years of feedback from long-time twitchers, diet (Paleo included) is not the cause or solution to BFS in nearly all cases. So for every new twitcher, just like us, diet is highly likely not going to directly change anything. It just isn’t. Probably nothing will. I would LOVE to be wrong about this by the way. That being said, as opposed to being exception, most or many twitchers who go down the road of re-testing the same options everyone else has end up losing additional months/years of their life preoccupied with a benign condition that won’t go away. Months/years that can never be returned. Precious moments with their kids evaporated before ever taking form. More anxiety and depression when each potential “option” results in failure, further feeding the very monster (anxiety) we know holds power over our symptoms. More irrational thoughts like “Well if this diet is supposed to help BFS and it fails for me, does that mean my case could be ALS?”. Not everyone who goes down the road of experimenting with options will suffer these negative consequences, but many have and many will. For people susceptible to this, is it really worth the risk for a payoff that will never occur, in all probability? I believe the answer is “no.” Again, I have no problem with you or anyone else disagreeing with my thought process, but I just want to clear up the rationale behind it. And for some people, experimenting with diet will end successfully, at the very least resulting in a healthier well-being. We’re all trying to help people here, but in different ways.
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Re: There's room enough for all of us

Postby chrissi on July 22nd, 2013, 2:33 pm

Oh this is totally not my intention to discourage people, I hope you know that. If I was not convinced that food has an influence on the body, I would not live the way I do.
My concern is that people with BFS are so hyper-aware about anything going on in their bodies, that they need a bit distraction from that permanent self-observation that is keeping them in an anxiety cycle. My worry is that -as long as they are in a fragile phase- the self observation that is necessary to find out the food influences will throw them back into a state of hyper-awareness and concern. And unfortunately I have learned my lessons about how bad some peoples anxiety can get about BFS , which is sometimes unfortunately to a life threatening point. You know me and you know that I am actually a person that has undergone a lot of self-reflection in all kinds of things and that this was mind opening for me. But this started after I lost my anxiety, when I was ready to look at and inside myself again without focusing on obsessive thoughts and strange symptoms.
And although there's no question of guilt because we all just tried to help, there are cases that tought me to touch scared people with velvet gloves (is that a saying also common in the USA).
Maybe that is a mistake that I have problems letting people go as long as I feel they are still highly anxious, of course as a mom I know that you sometimes have to let you "children" make their experiences and let them fall on their knees. But unfortunately for some cases I have witnessed, it was not the knees.
So we have to be careful, both "sides" , what we are saying and and should never force people to do something they are not ready to do. No false hopes, no false promises. There's neither a guarantee that a good anxiety management will totally cure you from BFS, nor that a diet will do that.
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Re: There's room enough for all of us

Postby SecretAgentMan on July 22nd, 2013, 3:22 pm

johnnythejet wrote: So for every new twitcher, just like us, diet is highly likely not going to directly change anything. It just isn’t. Probably nothing will.


Not trying to pick on you Johnny, but these comments illustrate the point I was trying to make. You have 8 rock solid years of experience and you KNOW what worked for you and what didn't work for you. You have a belief system that you have developed based on all of the interactions you've had with people on this forum. Your perception is that diet is in the huge minority for people that it has helped and you don't want to give false hope to emotionally compromised newbies. Am I correct in this summary?

This is what I respectfully ask for you to consider. I have 3.5 years of experience that is completely different from yours. I had similar symptoms but had different circumstances, pursued different options, used different methods, and arrived in a recovered status. Our experiences differ, our circumstances differ, and our perspectives differ. So who is right? Dare I say we both are? Both of us overcame the hardships of BFS and beat it. I found what worked for me and you found what worked for you. Would you have made the recovery you did had you done exactly what I did? Maybe not because your circumstances were different than mine. Would I have recovered had I done exactly what you did? I don't think so, because I ended up having a bad case of LGS.

So what is the constructive contribution statements like these above make? They are deductions and assumptions based on your experience and you perception. It's human nature to project our perceptions. Who is to say how many people on this forum might actually be suffering from LGS and it is manifesting in the form of BFS, as was the case with me? I have no idea but based on what I know about LGS, it is believed by experts to be quite common and very under-diagnosed. As you know I am very careful to not make promises or raise hopes. I don't have all the answers and I actively work to not project that image. I just feel it is a very important avenue to rule out before resigning to accepting BFS and dealing with it. Thanks again and I hope you know I love you guys.
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Re: There's room enough for all of us

Postby johnnythejet on July 22nd, 2013, 3:54 pm

SecretAgentMan wrote:
johnnythejet wrote: So for every new twitcher, just like us, diet is highly likely not going to directly change anything. It just isn’t. Probably nothing will.


Not trying to pick on you Johnny, but these comments illustrate the point I was trying to make. You have 8 rock solid years of experience and you KNOW what worked for you and what didn't work for you. You have a belief system that you have developed based on all of the interactions you've had with people on this forum. Your perception is that diet is in the huge minority for people that it has helped and you don't want to give false hope to emotionally compromised newbies. Am I correct in this summary?

This is what I respectfully ask for you to consider. I have 3.5 years of experience that is completely different from yours. I had similar symptoms but had different circumstances, pursued different options, used different methods, and arrived in a recovered status. Our experiences differ, our circumstances differ, and our perspectives differ. So who is right? Dare I say we both are? Both of us overcame the hardships of BFS and beat it. I found what worked for me and you found what worked for you. Would you have made the recovery you did had you done exactly what I did? Maybe not because your circumstances were different than mine. Would I have recovered had I done exactly what you did? I don't think so, because I ended up having a bad case of LGS.

So what is the constructive contribution statements like these above make? They are deductions and assumptions based on your experience and you perception. It's human nature to project our perceptions. Who is to say how many people on this forum might actually be suffering from LGS and it is manifesting in the form of BFS, as was the case with me? I have no idea but based on what I know about LGS, it is believed by experts to be quite common and very under-diagnosed. As you know I am very careful to not make promises or raise hopes. I don't have all the answers and I actively work to not project that image. I just feel it is a very important avenue to rule out before resigning to accepting BFS and dealing with it. Thanks again and I hope you know I love you guys.

The above statement of mine that you quoted was not meant to be constructive or otherwise. Nor was it meant to be a simple reflection of my personal experience that I'm extending to all newbies. I would never make such statements based on my experience alone. When I say changing diet is "highly likely" not going to fix BFS for a new twitcher, that is based on lots of feedback over the years. From people who have been gluten free for years but still twitch. From the fact that there are thousands who have come through this site, many who I'm sure tried Paleo for one reason or another (lots of people try Paleo nowadays) yet positive feedback from vets seems absent . Hundreds of these thousands stop by after years of symptoms to reflect on their journey and report status. How many have reported your results? How many of come back reporting any results like "Eureka! Everyone try this!!!!!" about anything? I'm not recalling any. In contrast, the overwhelming majority report that their symptoms became a minor nuisance over time and life goes on. So, in all likelihood, a new twitcher will experience similar results. We know BFS can be caused and perpetuated by a variety of factors, different in each case, so any one factor is "highly likely" not going to do the trick for a given case.
Hehe I know you aren't picking on me and I take no offense. We are simply offering different points of view in a respectful diaglogue, with everyone's best interests in mind. Its all good, brother.
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Re: There's room enough for all of us

Postby SecretAgentMan on July 23rd, 2013, 7:34 am

Thanks Johnny, I guess I just wanted to get that out there. Keep up the good fight and helping the people that you can. I'll try to do the same.
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Re: There's room enough for all of us

Postby jpbw on July 23rd, 2013, 8:07 am

Kum bay ya, my Lord, kum bay ya;
Kum bay ya, my Lord, kum bay ya;
Kum bay ya, my Lord, kum bay ya,
O Lord, kum bay ya.
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Re: There's room enough for all of us

Postby chicagobfs on July 23rd, 2013, 10:43 pm

Jonny unfortunafelly you can't assume that for majority diet changes will not bring any benefits or even eliminating the symptoms. Same as secret agent can't say that it will cure people from bfs . From what I know he only shares what had helped him. He doesn't states that his way is the only way, he only gives some options and maybe a little bit of hope. Being here 3 years I saw only two people being cured ( assuming that is truth:) both after changing diet.
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Re: There's room enough for all of us

Postby johnnythejet on July 24th, 2013, 8:11 am

chicagobfs wrote:Jonny unfortunafelly you can't assume that for majority diet changes will not bring any benefits or even eliminating the symptoms. Same as secret agent can't say that it will cure people from bfs . From what I know he only shares what had helped him. He doesn't states that his way is the only way, he only gives some options and maybe a little bit of hope. Being here 3 years I saw only two people being cured ( assuming that is truth:) both after changing diet.

Yes, I made the reasonable assumption that the majority of diet changes will not directly affect BFS symptoms. I believe that assumption best represents the truth and is based on long term feedback we have from twitchers.
Also, there are some cases of people being "cured" without changing diet whatsoever, but reducing anxiety and removing focus from symptoms.
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Re: There's room enough for all of us

Postby G-Dog on July 24th, 2013, 9:42 am

I'm with Johnny on this one! There are so many spurious claims and new age woo woo on this site it's hard to keep up!

I am truly dumbfounded by how many hours some people devote to this benign condition. Clutching at straws, lurching from one theory to the next...there's a distinct lack of critical thinking. I think Johnny does a good job at redressing the balance here.

Sure, everyone is entitled to their beliefs, and everybody else is entitled to think such beliefs are ridiculous, and to make that known.
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Re: There's room enough for all of us

Postby SecretAgentMan on July 24th, 2013, 12:49 pm

Perspective is EVERTYTHING. Everyone believes what they believe because it has been validated to them through their own experience. This is why political arguments on Facebook are pointless. Nothing you can say will persuade someone to change their views or perspective based on their experience. Our experiences are so much more powerful at shaping our beliefs than words. They define our belief systems and set the foundation for how we extrapolate our expectations for future events unfolding.

When our belief systems, experiences, or perspectives clash with others we can become emotionally invested or almost feel threatened. I just wanted to avoid the negativity but there are elements of it cropping up even in this thread... My recovery was not born of a lack of critical thinking. It was born of an open mind and humbleness that I knew nobody had all the answers, especially the 'experts' I initially trusted to diagnose me (my GP and neurologist). It is easy to label something you have not experienced or do not understand as 'new age woo woo.' It takes courage to open your mind up to new possibilities and allow yourself to experience alternative solutions for first hand evaluation.

Relying on conventional wisdom and currently held belief systems will yield no new results. If people are comfortable with their BFS symptoms and do not want to seek methods to improve their lives that is fine. I only ask that you please don’t judge others for trying new or different things to improve their lives.
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Re: There's room enough for all of us

Postby johnnythejet on July 24th, 2013, 1:17 pm

SecretAgentMan wrote:Perspective is EVERTYTHING. Everyone believes what they believe because it has been validated to them through their own experience.

I respectfully disagree....completely. Not everyone believes what they believe b/c its been validated via personal experiences. I believe many things to be *true*, and those beliefs are based on anything BUT my own experience. They are based on facts and logical deduction.

What G-dog is saying is that we're all entitled to choose beliefs based on personal choice, but we're also free to challenge others' beliefs as well. I think there is a level of respect that should be maintained, but you, G-dog, and anyone else is entitled to claim any of my beliefs are false, short-sighted, weak, etc. Some may view these challenges as "negative", but they are valid opinions and hold no malicious intent. However, we cross the line when we disrespect others via personal insults.
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Re: There's room enough for all of us

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