by 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