Thinking of coordinating a group diet experiment/challenge

General Topics

Moderators: JohnV, Arron, garym

Re: Thinking of coordinating a group diet experiment/challen

Postby BFSBurger on September 4th, 2013, 12:27 am

Adamk wrote:a neurologist from the university of Minnesota today and they confirmed that yes it is bfs, and he also said the steps that I have taken so far have been the right steps. He said diet, managing existing medications and stress are the 3 things to work on to help with symptom management.

:)

Unfortunafelly for me diet didn't change much. I started eating normally on vacation and nothing happend I actually had less twitching:) I'm not sure if I will try another diet, but if yes, I'm thinking of trying raw diet to make na body more alkaline ? I will also test myself for gluten intolerance and sensivity.

Its a strange thing. Certain foods definitely trigger BFS symptoms. But sometimes there are weird inconsistencies. Like you, sometimes if I gorge myself on ice cream and sugar, my symptoms would decrease noticeably! Or heavy carbs. Whereas other times when i was super strict with eating perfect, i would have more twitching, but usually only when i was run down. Likely due to insufficient carb intake. For example, I was doing strict Paleo which is 100% anti-inflammatory and pro-gut, but the lack of carbs made me weak, and run down. This increased my symptoms because weakness is a strain on the system, and a form of stress. Upping my potato intake would immediately cure symptoms for me back then, as it was an injection of carb-provided energy.

So what I have found is that the most important thing (aside from avoiding inflammatory foods) is that I needed to manage my energy levels. If I was tired, some extra carbs would actually help reduce symptoms. Because without fail, symtpoms would be worse when I was fatigued. Which is just "stress" on the system. So maybe at that moment, sugar intake gave me a boost of energy, and symptoms would subside. Evem though sugar is not something you'd want to have a lot of, long term.

In the end ... no matter what anyone believes about food and BFS, its a big part of managing stress levels in the body. So there is no debate there. Sometimes going back to eating junk food will provide lots of energy and actually may improve symptoms. But doing that too often, for too long will create an environment of inflammation and make things worse. As a short term fix however, when maybe you've been going too "low carb" trying to 'eat right' for a few weeks, it can provide a rush of energy and vitality. Thereby relieving the system, temporarily, of the stress of fatigue. Make sense?

The true factor here is energy levels in the body. When you're supplied well with energy via sleep and rest and stress management, this is of course the "right" way to do it. I dare say its no different than when you have a bad cold, feel horrible, and then suddenly feel amazing right after you eat. Same. Exact. Thing. Food isn't a magic bullet. Its a means to an end of helping reduce stress and nourish the system, which in turn reduces symptoms in stressful times. This is why working out without proper electrolyte replenishment, etc can also make BFS worse.

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

viewtopic.php?f=3&t=19128
User avatar
BFSBurger
Saint
Saint
 
Posts: 852
Joined: October 3rd, 2012, 10:19 am

Re: Thinking of coordinating a group diet experiment/challen

Postby emmie.s on September 4th, 2013, 10:59 am

i
Last edited by emmie.s on September 4th, 2013, 11:09 am, edited 1 time in total.
User avatar
emmie.s
Hero
Hero
 
Posts: 363
Joined: February 17th, 2009, 9:33 am

Re: Thinking of coordinating a group diet experiment/challen

Postby emmie.s on September 4th, 2013, 11:01 am

So Ive stuck to the gluten free diet for about a week now and so far no hotspots, just random twitching that is not too noticeable. I would say thats a great improvement, so thank you to all the members who suggested this, and I encourage any newbies reading this to give it a try if you haven't already.
However, (and this doesn't concern the guys) my symptoms seem to get worse when I PMS...so we shall see what happens in a few weeks, and if the diet change is helpful then too. In retrospect, I think it has something to do with the fact that I crave carbs and sugar when I PMS, and that means more cookies & bread, meaning tons of gluten, hence more twitching.

I also wanted to see if it had anything to do with my Gilbert's syndrome, which is a benign condition in which I have higher than normal bilirubin when I fast or am sick or stressed...I have seen in other posts that there is maybe a correlation, because I notice the random twitches more when my bilirubin is elevated in the morning when I am lying in bed, which may have to do with going 8 plus hours of no food...maybe a gluten free midnight snack will improve this.

At any rate, I am just happy that I am past the mental freak out aspect of this...the fact that I have good days, great days, and that they aren't all bad days, shows that this truly is something benign.
User avatar
emmie.s
Hero
Hero
 
Posts: 363
Joined: February 17th, 2009, 9:33 am

Re: Thinking of coordinating a group diet experiment/challen

Postby SecretAgentMan on September 4th, 2013, 11:21 am

Awesome news emmie! I truly believe dietary modification will help many people on this forum, but time and trialing will tell. Hopefully with more success stories being posted more will muster the courage to try. Modifying your diet is no easy undertaking, so hats off to those that have done so. From what I've learned through my experience though there is a strong correlation between digestive health and auto-immune disorders. I personally believe BFS to be auto-immune related. The great news is that there are alternative solutions other than drugs that are far more effective at treating conditions such as this. I belive with time more and more light will be shed on these and more and more people will capitalize on them as I have. It's a leap at first because it is a foreign approach to what our supposed 'experts' in the medical field have led us to believe. Results speak louder than anything else though. Please continue to share results. Thank you.
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.
User avatar
SecretAgentMan
Saint
Saint
 
Posts: 1048
Joined: June 30th, 2010, 3:42 pm
Location: Dayton, OH suburbs

Re: Thinking of coordinating a group diet experiment/challen

Postby johnnythejet on September 5th, 2013, 8:49 am

SecretAgentMan wrote:I truly believe dietary modification will help many people on this forum, but time and trialing will tell.


While I believe people should do things to improve their overall health, we need to keep a few things in mind when placing importance (too much) on this type of “trialing”.
1. BFS is a waste bucket diagnosis, and benign twitching has been known to be caused by many, many factors.
2. Most of the participants are those who have passed the initial freak-out stage so their health anxiety over twitching is on the decline. During this period many will see a reduction in symptoms as we know anxiety is a common denominator.
3. Going on a diet (gluten-free, low carb, low-fat, low-cal) typically leads to improved overall health and feeling better. This leads to reduced anxiety, and of course reduced anxiety often leads to reduced symptoms.
4. Placebo – There have been many things mentioned by newer twitchers over the years that have seemed to work. Everything from diets to herbal remedies. Gotta love the sugar pill.
5. The best way to view effectiveness of diets is removing the uncertainties that come along with newer BFS’rs. People have been twitching and reporting results for years. Many of us have tried many diets (and other options), including Paleo, and the results are pretty darn clear. Diet and caffeine reduction have little to no effect on twitching.

That being said, its nice to see people feeling better, regardless of what is actually occurring. I just think the truth is important, and everything should be considered when evaluating what “time is telling.”
User avatar
johnnythejet
Saint
Saint
 
Posts: 1602
Joined: September 15th, 2005, 2:36 pm
Location: Kansas

Re: Thinking of coordinating a group diet experiment/challen

Postby SecretAgentMan on September 5th, 2013, 10:02 am

johnnythejet wrote:While I believe people should do things to improve their overall health, we need to keep a few things in mind when placing importance (too much) on this type of “trialing”.
1. BFS is a waste bucket diagnosis, and benign twitching has been known to be caused by many, many factors.

Agreed. In the cases of people who are experiencing the symptom bucket of BFS because of something like Leaky Gut Syndrome, as this was my primary driver of symptoms, they will benefit greatly from diet changes. If they aren’t even aware or don’t try, they will continue to experience the symptoms regardless of their attitude and stress management. Curing Leaky Gut requires a multi-faceted approach, including both physical and mental actions.

johnnythejet wrote:2. Most of the participants are those who have passed the initial freak-out stage so their health anxiety over twitching is on the decline. During this period many will see a reduction in symptoms as we know anxiety is a common denominator.

While I cannot speak to the stages of the participants benefiting from the diet change, I will refer back to my comment above about a multi-faceted approach. Yes, mental attitude shifting is important and critical to overcoming BFS, but if physical drivers are also not addressed the relief can only go so far. It really depends on a case by case basis on what is going on with that person.

johnnythejet wrote:3. Going on a diet (gluten-free, low carb, low-fat, low-cal) typically leads to improved overall health and feeling better. This leads to reduced anxiety, and of course reduced anxiety often leads to reduced symptoms.

Agreed. Everything in life is related no matter how independent or isolated it may seem. Because every aspect of our lives has some impact into our overall wellness, why dismiss, mitigate, exclude, or ignore diet? If every little bit helps, let those willing to try every little bit do so with our encouragement.

johnnythejet wrote:4. Placebo – There have been many things mentioned by newer twitchers over the years that have seemed to work. Everything from diets to herbal remedies. Gotta love the sugar pill.

I am a HUGE believer in mind over matter, which is what the placebo affect is. It is not something that I believe should to be used to dismiss positive results. I believe that our thoughts impact our physical reality more than people appreciate or realize. That being said, you cannot ignore the physical relationship of things going on in your body either. If something is harmful to your health your physical reaction in relation to that makes a difference just as much as your mental attitude towards it. Again, everything is related and plays a role.

johnnythejet wrote:5. The best way to view effectiveness of diets is removing the uncertainties that come along with newer BFS’rs. People have been twitching and reporting results for years. Many of us have tried many diets (and other options), including Paleo, and the results are pretty darn clear. Diet and caffeine reduction have little to no effect on twitching.

This will vary on an individual case by case basis. Nobody is promising a cure for all cases of BFS here. We’ve gone over this again and again. Just because one person has success does not mean everyone will. Likewise, just because on person saw no results does not mean that diet is not a factor for everyone. I know what my BFS symptoms were caused by and I know what I did to treat and reverse my condition. It was not a sugar pill. It was a real physical condition that was amplified and contributed to by my mental attitude and methods of handling stress. I had to make changes into multiple areas of my lifestyle to turn things around. I know I’m not an isolated case. I also know I’m not the only model for how BFS manifests. I tried to organize a thread on diet to raise awareness and help anyone willing to give this route a shot along with my lessons learned. I did not organize this to promise salvation or a cure to all BFSers. It is simply another avenue people can try when they are willing and able.
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.
User avatar
SecretAgentMan
Saint
Saint
 
Posts: 1048
Joined: June 30th, 2010, 3:42 pm
Location: Dayton, OH suburbs

Re: Thinking of coordinating a group diet experiment/challen

Postby aztwitchy on September 23rd, 2013, 5:43 pm

emmie.s wrote:So Ive stuck to the gluten free diet for about a week now and so far no hotspots, just random twitching that is not too noticeable. I would say thats a great improvement, so thank you to all the members who suggested this, and I encourage any newbies reading this to give it a try if you haven't already.
However, (and this doesn't concern the guys) my symptoms seem to get worse when I PMS...so we shall see what happens in a few weeks, and if the diet change is helpful then too. In retrospect, I think it has something to do with the fact that I crave carbs and sugar when I PMS, and that means more cookies & bread, meaning tons of gluten, hence more twitching.

I also wanted to see if it had anything to do with my Gilbert's syndrome, which is a benign condition in which I have higher than normal bilirubin when I fast or am sick or stressed...I have seen in other posts that there is maybe a correlation, because I notice the random twitches more when my bilirubin is elevated in the morning when I am lying in bed, which may have to do with going 8 plus hours of no food...maybe a gluten free midnight snack will improve this.

At any rate, I am just happy that I am past the mental freak out aspect of this...the fact that I have good days, great days, and that they aren't all bad days, shows that this truly is something benign.


cool feedback..I really hope this sustains for you. please let us know how the next couple of weeks are.
"Health is a state of complete physical, mental and social well-being, and not merely the absence of disease or infirmity." ~World Health Organization, 1948
aztwitchy
Hero
Hero
 
Posts: 451
Joined: December 3rd, 2012, 5:18 pm

Re: Thinking of coordinating a group diet experiment/challen

Postby emmie.s on September 23rd, 2013, 6:00 pm

aztwitchy wrote:cool feedback..I really hope this sustains for you. please let us know how the next couple of weeks are.

So (and I know this is TMI) I just finished my cycle and while on it, I did get a small increase in twitches, and what I thought would be a hotspot on my right thumb, but it was gone after a few hours. This is a huge improvement in comparison to my previous hotspots which lasted weeks, sometimes months.
I am still gluten free. I still get small random twitches, but they are barely noticeable. Flashback to a month ago, and I was a mess. It may be the decrease in anxiety has decreased the twitches, but I find that cutting out gluten has been great for me for so many other reasons. I just feel like I have more energy, less bloat, and a much more positive outlook. :D
User avatar
emmie.s
Hero
Hero
 
Posts: 363
Joined: February 17th, 2009, 9:33 am

Re: Thinking of coordinating a group diet experiment/challen

Postby Adamk on September 25th, 2013, 8:53 pm

I agree with the previous post. I have been on the diet for 3 months. I still get twitches but far less frequently and last only a few minutes at worst compared to days or weeks. I even have times where I will have no noticeable twitching at all for 6 to 10 hours a day. I sleep much better and feel like I have more energy. I don't know if it will ever go away compleatly but it has help a great deal.
Adamk
Senior Member
Senior Member
 
Posts: 52
Joined: May 21st, 2013, 8:14 pm

Re: Thinking of coordinating a group diet experiment/challen

Sponsor

Sponsor
 

Previous

Return to General Topics

Who is online

Users browsing this forum: Josmo and 8 guests