For the vets...

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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For the vets...

Postby chrissi on July 20th, 2013, 4:53 am

Dear BFS Veteran,
I guess you remember the first months of your BFS. Congratulations you are over those terribly scary times now.
This thread is here to see, what has helped you through these days.
It would be great if you took a few minutes to answer those questions shortly. This will likely not be transformed into a statistical summary, I guess I will just leave it here to read for anyone interested. So you can add any information you think is important to the different points.

1. How long ago did your BFS start?
2. On a scale from 1-10, how would you rate your physical symptoms today, compared with the onset of your BFS? (0=none, 10=bad)
3. On a scale from 1-10, how would you say your physical symptoms are interfering with your emotional wellbeing? (0= not at all, 10= bad)
4. If you rate the your BFS for the early BFS days, how would you split up the percentages of what was having the most influence on your overall wellbeing (x% physical symptoms, y% anxiety/depression)
4. If you rate your BFS recovery up to today, how would you split up the percentages of the following parts of it( x %mental work, y% exercise, z% lifestyle/dietary changes)
5. How are you doing those days? Did your BFS influence you in any way? Was there a cerrtain thing that helped you especially ? Is there anything you want to tell the newbies that are standing at the start line of this process?


Thank you a lot for taking your time to answer this thread.

(Anyone feel free to make changes in my phrases. You know I am not a native speaker so I guess some things can sound strange the way I write them..)
"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: For the vets...

Postby chrissi on July 20th, 2013, 5:24 am

1. How long ago did your BFS start?
It started in May 2011, a bit more than 2 years ago

2. On a scale from 1-10, how would you rate your physical symptoms today, compared with the onset of your BFS? (0=none, 10=bad)
I had very very severe symptoms. Today I would rate with 0.5., because I am a bit more prone to develop tremors and some twitches with too much caffeine or stress. Most days I do not twitch at all except in my calves (that have already been twitching before BFS)


3. On a scale from 1-10, how would you say your physical symptoms (if any left)are interfering with your emotional wellbeing? (0= not at all, 10= bad)
0

4. If you rate the your BFS for the early BFS days, how would you split up the percentages of what was having the most influence on your overall wellbeing (x% physical symptoms, y% anxiety/depression)
Beginnings : 90% anxiety, 10% physical
Later: 70% physical, 30% anxiety


4. If you rate your BFS recovery up to today, how would you split up the percentages of the following parts of it( x %mental work, y% exercise, z% lifestyle/dietary changes)
60% mental work, 30%exercise, 10% dietary change ( I already had a healthy lifestyle before BFS, except the sport)

5. How are you doing those days? Did your BFS influence you in any way? Was there a cerrtain thing that helped you especially ? Is there anything you want to tell the newbies that are standing at the start line of this process?

I am feeling better today than before BFS. I changed my life mostly in a psychological way, worked on my general anxiety, my tendendy to control everything and to worry.I started to work out regularly but not excessive, to give my body an opportunity to get rid of stres hormones. If I had to give advise, I would say: The ultimate first task is to get control over your anxiety. Anxiety feeds BFS and will keep you in an endless cycle. If needed, try psycho therapy.
When you have control over that, there are several things you can try to help you cope with it physically, like exercise or dietary changes. Most important is to find a way to make you feel balanced and happy.
"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: For the vets...

Postby SecretAgentMan on July 20th, 2013, 7:42 am

1. How long ago did your BFS start?
24 December 2009

2. On a scale from 1-10, how would you rate your physical symptoms today, compared with the onset of your BFS? (0=none, 10=bad)
0

3. On a scale from 1-10, how would you say your physical symptoms are interfering with your emotional well-being? (0= not at all, 10= bad)
0

4. If you rate the your BFS for the early BFS days, how would you split up the percentages of what was having the most influence on your overall well-being (x% physical symptoms, y% anxiety/depression)
This is the chicken or the egg question to me. The physical symptoms started my worrying, which fed the physical symptoms more, which fed the anxiety more, which fed the physical symptoms more, etc... With that I guess 50/50 is fair.

5. If you rate your BFS recovery up to today, how would you split up the percentages of the following parts of it( x %mental work, y% exercise, z% lifestyle/dietary changes)
40/0/60 I may be an oddity here but I never exercised much before BFS and I still don't. Really all I do for exercise is go for walks. Chasing the kids is good exercise too I suppose... :)


6. How are you doing those days? Did your BFS influence you in any way? Was there a certain thing that helped you especially ? Is there anything you want to tell the newbies that are standing at the start line of this process?
BFS affects us mind, body, and spirit (all of which impact each other). I was profoundly impacted on all levels. I attribute my recovery to dietary changes, attitude adjustment, alternative medicine, and meditation among others.
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: For the vets...

Postby SuziQ on July 20th, 2013, 8:51 am

chrissi wrote:Dear BFS Veteran,
I guess you remember the first months of your BFS. Congratulations you are over those terribly scary times now.
This thread is here to see, what has helped you through these days.
It would be great if you took a few minutes to answer those questions shortly. This will likely not be transformed into a statistical summary, I guess I will just leave it here to read for anyone interested. So you can add any information you think is important to the different points.

1. How long ago did your BFS start? Tough to say. Knowingly, it was about 8 years ago, but before that, I had years and years of strange neurological symptoms, such as twitching, numbness, tingling, and general wonkiness. So I'd say from 10-12 years, approximately.
2. On a scale from 1-10, how would you rate your physical symptoms today, compared with the onset of your BFS? (0=none, 10=bad) 0. Yay for me! :)
3. On a scale from 1-10, how would you say your physical symptoms are interfering with your emotional wellbeing? (0= not at all, 10= bad) again, 0
4. If you rate the your BFS for the early BFS days, how would you split up the percentages of what was having the most influence on your overall wellbeing (x% physical symptoms, y% anxiety/depression) wow, that's an interesting question. It was a vicious cycle, with physical symptoms exacerbating the anxiety, and vice versa. So, I'd say 50-50.
4. If you rate your BFS recovery up to today, how would you split up the percentages of the following parts of it( x %mental work, y% exercise, z% lifestyle/dietary changes) As mentioned on another thread, I would say mine was 50% mental and 50% physical activity with absolutely no help from dietary changes whatsoever. Although I had tried all of the various diets, (raw, vegan, clean foods, cutting caffeine, low carb, etc) none of that ever helped my symptoms. Now I eat anything I want in moderation and I have no symptoms at all.
5. How are you doing those days? Did your BFS influence you in any way? Was there a certain thing that helped you especially ? Is there anything you want to tell the newbies that are standing at the start line of this process? yes, my BFS made me appreciate what it means to walk, and run, and dance, and climb mountains, without spending the rest of my days in a wheelchair. And that my mind is so very powerful, that I need to control every thought that enters my head, for my body WILL invariably listen, and do as it is told.


Thank you a lot for taking your time to answer this thread.

(Anyone feel free to make changes in my phrases. You know I am not a native speaker so I guess some things can sound strange the way I write them..)
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Re: For the vets...

Postby MarioMangler on July 20th, 2013, 1:17 pm

1. How long ago did your BFS start?

This is difficult to answer for me. Officially it is a little more than 5 years, but like Suzi I had bizarre neurologial symptoms for years leading up to that. I had years of random twitching eyelids, a buzzing nose, all sorts of weird nighttime calf cramps and other random cramps, and then I had two years where a doctor thought I had Crohn's Disease but I suspect was just random gut pain brought on by nerve irritation. It just randomly went away one day like so many other BFS symptoms tend to do. So I would say "officially" I have had BFS for five years, but I have had hyperactive nerves and cramp issues going on for about 16 years.


2. On a scale from 1-10, how would you rate your physical symptoms today, compared with the onset of your BFS? (0=none, 10=bad)

I would say somewhere between a 1 or a 3. I can go months without any symptoms at all (such as last month, when I was on vacation in Europe, no symptoms whatsoever for about 30 days). And then when I get stressed or overloaded at work it will ramp up to maybe a 3 or a 4. But it is nothing compared to what it was at the start. In any case, they don't bother me anymore. It's just BFS.


3. On a scale from 1-10, how would you say your physical symptoms are interfering with your emotional wellbeing? (0= not at all, 10= bad)

Zero. You learn to stop fighting BFS after a while. You learn it is a pointless battle.


4. If you rate the your BFS for the early BFS days, how would you split up the percentages of what was having the most influence on your overall wellbeing (x% physical symptoms, y% anxiety/depression)

10% physical symptoms
90% anxiety/depression over my interpretation of the physical symptoms

I had some pains early on but it was always more sensory for me. The only things that have ever really hurt once I got full blown BFS were my left thigh and my teeth. My teeth have always been a big problem for me.



4. If you rate your BFS recovery up to today, how would you split up the percentages of the following parts of it( x %mental work, y% exercise, z% lifestyle/dietary changes)

90% mental work
10% exercise
0% dietary changes

It's all mental. The more you keep your brain occupied the less likely you are to have symptoms. That has been a 1:1 correlation for me since day one. Diet has never made any sort of a difference for me, and even if it did I wouldn't change it. I like the foods that I like and f--- changing them.



5. How are you doing those days? Did your BFS influence you in any way? Was there a cerrtain thing that helped you especially ? Is there anything you want to tell the newbies that are standing at the start line of this process?

I am doing great these days. Like I said above, we just went to Europe and we walked all over Paris and Rome and Ireland for a month, and I never had a single symptom. And it is always like that for me. You just have to keep your brain occupied with something other than BFS. Which is why I run a pop culture blog and I have a podcast and I am currently writing a book. Just keep your mind on other stuff and you will be mentally fine, it is as simple as that.

There were three things that helped me the most in the early days of BFS. The first, of course, was Arron Johnson's "BFS In a Nutshell." When I read that for the first time I immediately thought, well that sounds exactly like what I have. And then I had a neurologist tell me "Well you know there's something out there called Benign Fasciculation Syndrome". And once I had those two pieces in the puzzle I came here and this was my world. The interesting thing about BFS In a Nutshell is that I don't think a lot of newbies realize what a big deal that post is. I don't think a lot of people realize what a big deal Arron Johnson is in the world of BFS, and how often doctors come to HIM for info about it. He is legitimately the guy to ask in the medical community about BFS. I talked to Arron a lot back in the day and used to pick his brain about everything, and once I realized what a big shot he was and how respected he was in the medical community I treated BFS in a Nutshell as gospel. Which, in my opinion, is how everyone should treat it. I mean, all the answers to BFS are right there. They have been there for ten years, right at the top of every thread on this board. Why there are still debates and discussions over what BFS is, and what BFS "could be", and how best to deal with BFS, is beyond me. Once you learn what BFS is, the next step becomes all about symptom management, which is what any veteran will tell you anyway. In any case, read "BFS In a Nutshell." Everything you have ever needed to know about BFS has always been in there.

The second thing that helped me in my fight against BFS was a website called The Anxiety Centre. This site was recommended to me by a user named kevintwister and it was invaluable in helping me deal with the mental side of BFS. All you have to do is become a member, and spend about an hour reading through their member section, and you will figure out exactly why you have BFS triggers and how to avoid them or lessen them. Really it all comes down to fight or flight mode. Once you realize that your body is repeatedly sending itself into fight or flight mode, all you have to do is find some way to stop that. In the end it all comes down to breathing, mental discipline, moderate exercise, and meditation. And you really don't even need meditation if you are getting enough sleep and you know how to control your breathing. Again, I credit the Anxiety Centre for all of this because they taught me everything. By the way, they don't even believe in BFS there, they just call this the outgrowth of an anxiety disorder. I am not sure if I 100% believe in that or not, but the treatments for both things are the exact same so whatever.

The third thing that helped me with dealing with BFS was just dealing with it. As in, after a while you have to stop the whole cycle of being a newbie. You have to stop fighting it. This means stop going to doctors, stop demanding expensive tests, stop changing your whole life based on your symptoms, just stop it. You are becoming a self centered annoying pain in the ass (and I know, because I was once one too, we all were). And of course the next step is take a step back from this board. The absolute WORST thing a newbie BFS person needs is to be surrounded by other struggling and complaining BFS people. You just aren't mentally able to handle that being your peer group. So the key for almost anyone who has conquered BFS is to mentally get a handle on what is going on with you (you have hyperactive nerves, big deal), and then just deal with it. No more doctors, no more tests, no more posts here asking for reassurance. You will never truly deal with what is going with you until you leave this site and can stay away for a month. Or 3 months. Or a year. One you realize you don't need this place as your lifeline, you are going to be just fine. Basically what I am trying to say is don't make the people here your peer group. You don't want this to be your peer group. Don't let BFS define who you are as a person, there is much more you offer to the world than that.
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: For the vets...

Postby johnnythejet on July 20th, 2013, 7:26 pm

1. How long ago did your BFS start?
Over 8 years ago.


2. On a scale from 1-10, how would you rate your physical symptoms today, compared with the onset of your BFS? (0=none, 10=bad)
2


3. On a scale from 1-10, how would you say your physical symptoms are interfering with your emotional wellbeing? (0= not at all, 10= bad)

Negative 1. My emotional well being has improved due to BFS. My outlook on life has changed for the better and I’ve learned to be present in the moment, rather than let trivial matters suck away my days.

4. If you rate the your BFS for the early BFS days, how would you split up the percentages of what was having the most influence on your overall wellbeing (x% physical symptoms, y% anxiety/depression)
5% physical, 95% mental. My answer would have been different 8 years ago, but over time I realized that it was my mental well being that was holding me back. The symptoms themselves had little direct effect.

4. If you rate your BFS recovery up to today, how would you split up the percentages of the following parts of it( x %mental work, y% exercise, z% lifestyle/dietary changes)
80% mental
20% being healthy (mostly exercise but keeping weight off takes dietary changes as well)
Until my mind was in the right place, there was no hope. Managing anxiety and controlling my thoughts was THE key.

5. How are you doing those days? Did your BFS influence you in any way? Was there a certain thing that helped you especially ? Is there anything you want to tell the newbies that are standing at the start line of this process?
I have never been better. BFS has ultimately been a blessing because it has changed my outlook on life for the better, yet has restricted my activities in no way. I can do everything I want and more. I can do the most rigorous exercise, without any problems. I’m actually quite fond of my twitches nowadays and wouldn’t give them away if I had the choice. Sensory symptoms continue as well but are no bother. If it weren’t for still reading posts on this site, BFS wouldn’t cross my mind.
The thing that helped me the most was acceptance. Accepting that BFS probably will never go away. Accepting that my symptoms will get worse at times for no reason. Accepting that I have little or no control of my symptoms and I will never fully understand why they came to be. Accepting that I was given this condition INSTEAD of the ALS monster I first feared, and being thankful to God for the blessings held in my future.

To the newbies (this includes everyone from 1 day of twitching until about the 1 or 2 year mark usually):
This website offers THE source of the most information on BFS in the world. The collection of feedback from both twitchers and neurologists is staggering. Beyond reading BFS in a Nutshell (which all should memorize), unfortunately, it can be difficult to find good information while sorting through all the junk (anxious posts, half-stories, poor advice from other newbies, etc.). If you aren’t sure where to go, or who to believe, send a private message to garym, or one of the long-term vets who’ve been through it all, with many years under their belt. You have the benefit of seeing the trials and errors of thousands before you through our experience and knowledge. Learn and listen to the vets. These people who have been twitching for 2, 5, 10 or 30 years have tried it all. Collectively, there is not really anything useful you will learn that hasn’t been learned already.
Any newbies that appear to “figuring it out for you” are just spinning their wheels and wasting time for the most part. Every year another newbie who appears to be breaking new ground and has a cure, or believes themselves to be shedding new light on BFS. All you need to know in order to move on with life has been learned 1000’s times over. We’ve all wasted years of our lives, lost spouses, jobs, precious moments, irreplaceable items that can never be regained. We’ve learned the hard way and from others mistakes what to do and what not to do in order to get our lives back. When I came here I was a wreck, and couldn’t function as a person in society, with a family. I just wanted to get my life back, and that’s exactly what I did. You should too.
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Re: For the vets...

Postby garym on July 20th, 2013, 10:38 pm

chrissi wrote:
1. How long ago did your BFS start? Like a few others, I have twitched off and on as far back as I can remember, but full blown bfs is over 10 years
2. On a scale from 1-10, how would you rate your physical symptoms today, compared with the onset of your BFS? (0=none, 10=bad)physical sxs today are 2 compared to onset...take away the cramping and it would be 0, the twitching doesn't bother me at all
3. On a scale from 1-10, how would you say your physical symptoms are interfering with your emotional wellbeing? (0= not at all, 10= bad)0 - I get a little irritated about the cramps, but that's it
4. If you rate the your BFS for the early BFS days, how would you split up the percentages of what was having the most influence on your overall wellbeing (x% physical symptoms, y% anxiety/depression) I would say 50/50. I had extreme muscle fatigue and aches/pains early on that led to extreme anxiety. It was a vicious cycle.
4. If you rate your BFS recovery up to today, how would you split up the percentages of the following parts of it( x %mental work, y% exercise, z% lifestyle/dietary changes)again, other than the cramping, I feel like I've completely recovered. That might sound weird because I do twitch and cramp at a very high frequency, but since it no longer impacts my daily life, I'm saying I've recovered
5. How are you doing those days? Did your BFS influence you in any way? Was there a cerrtain thing that helped you especially ? Is there anything you want to tell the newbies that are standing at the start line of this process?These days, I'm fine. I can't say anything I tried over the years actually helped with the exception of getting plenty of sleep, which I actually rarely get. My advice to newbs would be to work on controlling the anxiety that accompanies bfs for most people. That, imo is the most important/critical first step for anyone suffering from bfs. I'm not one that subscribes to the theory that bfs is caused by stress/anxiety, but I do 100% believe that it definitely is exacerbated by it. And once you get over the fear of bfs, it becomes a much more bearable condition.

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Re: For the vets...

Postby Yuliasir on July 21st, 2013, 1:05 am

1. How long ago did your BFS start?
In october 11, so about 20 month ago

2. On a scale from 1-10, how would you rate your physical symptoms today, compared with the onset of your BFS? (0=none, 10=bad)
2 to 3

3. On a scale from 1-10, how would you say your physical symptoms are interfering with your emotional wellbeing? (0= not at all, 10= bad)
1-3. I notice tham and sometimes may be worried but I always give myself time to see what would be going on. And they ususally wane and change for new ones. As usually in BFS.

4. If you rate the your BFS for the early BFS days, how would you split up the percentages of what was having the most influence on your overall wellbeing (x% physical symptoms, y% anxiety/depression)
50-50. I am alays worrying becasue fo chronic mood disorder (I feel bad in fact when I do not worry, so my mind uses really ANY chance to get into worries), but in early BFS it also was so unpleasant to feel the body id out of control.

4. If you rate your BFS recovery up to today, how would you split up the percentages of the following parts of it( x %mental work, y% exercise, z% lifestyle/dietary changes)

80% to zero to 20 %. I Do not excercise. I tried many times and my motivation is too low. But I keep more or less daily walks in good weather and even in bad :) except thunderstorms. Thanks to my doggie. And I had extensive speaking therapy sessions before BFS onset and after, and I still have those sessions however with more and more pauses in which I can manage things by myself. I did not went into extreme diet, like paleo or gluten free or sugar free or vice versa extra fruits etc. except I got a session of Dukane this spring and lost 5 kilo just becasue I wanted to try it and I have seen my sworn brother looks extremely fit and good on it and because I LOVE MEAT which is 100% allowed on that type of diet. But I gradually get out of regimen because of summer and really lots of fruits in my garden (never was so much in last 3 or 5 years, so it was rather stupid not to use this blessing of nature). Maybe I will try another one session in winter (or not, becasue I made too many jams, chutney and fruit jellies).

5. How are you doing those days? Did your BFS influence you in any way? Was there a cerrtain thing that helped you especially ? Is there anything you want to tell the newbies that are standing at the start line of this process?
I am doing rather well. I did things I can not believe I can ever do like letting my daughter live her own life, and I am taking vocal lessons (started this february and found I have nice mezzo, but I am taking pop style lessons which are rather hard for me. BFS appearad to be a real blessing for me as for many other fellows. I learned that it is common, that it fits my previous health condition picture, I learned a bit more about why I am GAD since 6 yo (not due to BFS itself but because of certain link between BFS, GAD and hypermobility which I traced thanks to talking to fellows on this site). And of course this site had huge infleuence and helped me a lot. When I twitch, I tell myself - hey, you are definitely alive baby!
What I can tell to the newbies? First of all, fellows, you most probably do not have any unique strange condition (which possibly could be named after you). Second, BFS has typical clicnial picture, well different from MNDs and other nasty disorders. If you see you fit it - it is so. Thisr, we often underestimate the level of stress we bear. Stop, sit and think about what stresses did you expereience for the last year or so? Too much work? Less then 6 hours of sleep daily? Broken realtionships? Moved to another region or bought new house? Become young mom or young dad? Become mom or dad of a youngster who left home for his or her own life? Got new job or lost old one? Broken realtionships? Death in the family? Admission into college? Car accident? Your pet died? All that is commonest things and all are stressors often leading to somatic stress reaction. Yes, even the death of the pet can be that little straw to break the camel's back. Not all of us have mood disorders (diagnosed or not), but as for being stressed for a lot of time before - it is almost 'sine qua non' condition for our life and for BFS development.

And please remember - BFS is an excellent chance to get new life.
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Re: For the vets...

Postby perform on July 21st, 2013, 3:55 pm

chrissi wrote:1. How long ago did your BFS start?

20-24 months ago.
chrissi wrote:2. On a scale from 1-10, how would you rate your physical symptoms today, compared with the onset of your BFS? (0=none, 10=bad)

At onset and leading into the first 6 months, I'd say 7-10. But now...maybe 3 on a bad day.
chrissi wrote:3. On a scale from 1-10, how would you say your physical symptoms are interfering with your emotional wellbeing? (0= not at all, 10= bad)

At onset 10...but now, 0.
chrissi wrote:4. If you rate the your BFS for the early BFS days, how would you split up the percentages of what was having the most influence on your overall wellbeing (x% physical symptoms, y% anxiety/depression)

40% / 60%
chrissi wrote:5. If you rate your BFS recovery up to today, how would you split up the percentages of the following parts of it( x %mental work, y% exercise, z% lifestyle/dietary changes)

This is a bit of a tricky question as I think simple time was a big factor in my recovery. I still have BFS and imagine I will have it forever, but my physical symptoms have very much improved over time. I would definitely separate my "mental" recovery from my physical recovery to some degree. I had a very large hurdle getting over my anxiety.
chrissi wrote:6. How are you doing those days? Did your BFS influence you in any way? Was there a cerrtain thing that helped you especially ? Is there anything you want to tell the newbies that are standing at the start line of this process?

These days I'm doing great. I have almost no anxiety and I've learned to ignore my BFS symptoms as background noise. BFS has definitely changed my temperament, but I'm not quite sure how. I feel very positive right now and that's all that matters. This community, the chat room, and people like Chrissi are what helped me the most. I have a very heartfelt appreciation to all of you including Leanne, Shanny, Chrissi, Johnny, Matt, Carmen, German and everyone else that was there for me when my anxiety was at it's worst. To a newbie I would say to look around and see how many BFS veterans there are. You will conquer this.
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Re: For the vets...

Postby marcus on July 22nd, 2013, 8:16 am

1. How long ago did your BFS start?
5 years ago

2. On a scale from 1-10, how would you rate your physical symptoms today, compared with the onset of your BFS? (0=none, 10=bad)
1 to 0

3. On a scale from 1-10, how would you say your physical symptoms are interfering with your emotional wellbeing? (0= not at all, 10= bad)
0

4. If you rate the your BFS for the early BFS days, how would you split up the percentages of what was having the most influence on your overall wellbeing (x% physical symptoms, y% anxiety/depression)
100/0 in my mind at the time, Looking back 0/100

5. If you rate your BFS recovery up to today, how would you split up the percentages of the following parts of it( x %mental work, y% exercise, z% lifestyle/dietary changes)
100/0/0

How are you doing those days? Did your BFS influence you in any way? Was there a cerrtain thing that helped you especially ? Is there anything you want to tell the newbies that are standing at the start line of this process?

I think once I realized that BFS wasnt going to hurt me I was able to let go of the fear. The thing that helped me the most was the friends I've been able to talk to who have gone thru the same things.
I will say I still have my moments of doubt but this is all mental. I have health anxiety as I'm sure many of you do. Its amazing what our brains can make our bodies do. Believing this fully is still hard for me but once you can accept that fact the physical symptoms just kinda go away.
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Re: For the vets...

Postby edado69 on July 23rd, 2013, 3:34 am

How long ago did your BFS start? 6 Y 5M

2. On a scale from 1-10, how would you rate your physical symptoms today, compared with the onset of your BFS? (0=none, 10=bad) 8

3. On a scale from 1-10, how would you say your physical symptoms are interfering with your emotional wellbeing? (0= not at all, 10= bad) 7

4. If you rate the your BFS for the early BFS days, how would you split up the percentages of what was having the most influence on your overall wellbeing (x% physical symptoms, y% anxiety/depression) 10% 90%

4. If you rate your BFS recovery up to today, how would you split up the percentages of the following parts of it( x %mental work, y% exercise, z% lifestyle/dietary changes) 20% 50% 30%

5. How are you doing those days? Did your BFS influence you in any way? Was there a cerrtain thing that helped you especially ? Is there anything you want to tell the newbies that are standing at the start line of this process?
Bad shoulder twitch for 2 days. Very powerful and constant, hard to sleep with it. Before that, no problems for some time. Many ways...Awareness that there is something not quite right when before that I never thought of any problem. Time helped the most. Carpe diem, try no to think about what if. No matter what, you are wasting time.
Fasciculating from the 25/03/2007 (as accurately as I can recall!...)
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Re: For the vets...

Postby edado69 on July 23rd, 2013, 3:35 am

How long ago did your BFS start? 6 Y 5M

2. On a scale from 1-10, how would you rate your physical symptoms today, compared with the onset of your BFS? (0=none, 10=bad) 8

3. On a scale from 1-10, how would you say your physical symptoms are interfering with your emotional wellbeing? (0= not at all, 10= bad) 7

4. If you rate the your BFS for the early BFS days, how would you split up the percentages of what was having the most influence on your overall wellbeing (x% physical symptoms, y% anxiety/depression) 10% 90%

4. If you rate your BFS recovery up to today, how would you split up the percentages of the following parts of it( x %mental work, y% exercise, z% lifestyle/dietary changes) 20% 50% 30%

5. How are you doing those days? Did your BFS influence you in any way? Was there a cerrtain thing that helped you especially ? Is there anything you want to tell the newbies that are standing at the start line of this process?
Bad shoulder twitch for 2 days. Very powerful and constant, hard to sleep with it. Before that, no problems for some time. Many ways...Awareness that there is something not quite right when before that I never thought of any problem. Time helped the most. Carpe diem, try no to think about what if. No matter what, you are wasting time.
Fasciculating from the 25/03/2007 (as accurately as I can recall!...)
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Re: For the vets...

Postby mwagner on July 23rd, 2013, 11:59 am

1. How long ago did your BFS start? July 2011 - 2 years ago

2. On a scale from 1-10, how would you rate your physical symptoms today, compared with the onset of your BFS? (0=none, 10=bad) ranges - sometimes a 1, sometimes an 8. But worse now, since sensory issues have started in the last year.

3. On a scale from 1-10, how would you say your physical symptoms are interfering with your emotional wellbeing? (0= not at all, 10= bad) 7


4. If you rate the your BFS for the early BFS days, how would you split up the percentages of what was having the most influence on your overall wellbeing (x% physical symptoms, y% anxiety/depression) 2% physical, 98% anxiety

4. If you rate your BFS recovery up to today, how would you split up the percentages of the following parts of it( x %mental work, y% exercise, z% lifestyle/dietary changes)
I don't feel like I have recovered much, to be honest. But, 10% mental work, 10% exercise and 90% lifestyle/dietary changes (no gluten, no caffeine, etc.)

5. How are you doing those days? Did your BFS influence you in any way? Was there a certain thing that helped you especially ? Is there anything you want to tell the newbies that are standing at the start line of this process?

I am a vet that freaks out over new symptoms. That is likely because I haven't been able to tackle my health anxiety (not for the lack of trying - I've been doing CBT work with a therapist for a while now - refuse to go on SSRIs unless I get desperate). I'm trying to get to root cause of why I can't, and why I have such issues with it. But, any new symptom scares me and sends me down a downward spiral. The thing that has helped me the most is time. I took an ALCAT test that tests my food sensitivities and have stayed away from all foods that I am most sensitive to (and there are a lot of them). So, at least for me, diet hasn't made much of a difference, except staying away from caffeine, which reduces my facial twitching.

I rate my BFS every day and notice that it waxes and wanes to where I hardly notice twitches, to where I'm twitching like crazy. I've also reduced my intake of xanax and Ambien, and I think that may have helped as well.

To the newbies, please listen to your neurologists. Try not to worry too much. Stay away from other information on the internet, and stick with this board, because it's truly comprised of people like you. No one on here has gone on to develop anything.

Mitra
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Re: For the vets...

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