Have I had this my whole life?

[Adamk]

I have been on this message forum for about 3 months now and have read stories about people who eventually get better or who's symptoms no longer bother them. I have been feeling allot better about having BFS since I first noticed it back in April of this year. I started to see a therapist to help me deal with the anxiety and OCD part of it. I am slowly realizing that I have little or no control of this issue and that I need to just let go. I have also been weaning off of meds that may have been contributing factors in the elevation of symptoms. I am now off of my ambien that I was taking nightly for 4 years and have no need for anti depressants either. I now for a fact that I have had twitches happen in my body before in fact most of the symptoms that people describe such as tingling, twitching, numbness, vertigo, tinnitus, have at some point or another happened to me in my life. The thing is I just never cared about it and knew that it would eventually subside. So when I experienced a twitch that bothered me I never really looked into it or gave it much concern. That was until Google was invented and I ended up worrying myself to death. I truly believe that It is a real symptom but I think that I may have always had this but never cared about it before. The same thing happened to me 2 years ago with tinnitus. I had a bout of it that lasted a few months and it was only when i realized that i had been having on and off bouts of it my whole life that I decided it was a normal thing and it slowly went away. now I never even really think about it. I have definitely noticed a reduction in the length and frequency of my twitching since I have been working on my mental state. I think this may be like my previous issues. That with time and acceptance that this is not abnormal. It will stop bothering me and go away.


What do you think?

[chrissi]

If you look at the history of an average BFS er, the most people on here have suffered (often life-long) with all kinds of weird problems without a "hard fact reason" usually issues like IBS, TMJ, unexplainable Tinnitus, vertigo, back pain without damage, pelvic pain, stress induced headaches, optic migraines etc. Many of the have clear somatisation links. And most of the people on this board have a history of severe anxiety/OCD. I know for myself that I have always been a twitcher, because my dad and my sis are too and we used to make fun of it. From childhood on.As well as some random pains, especially little shooting pains and back pains. It was not before I got an immense increase of twitching after a viral infection, that brought me to Dr. Google and -bam-my body went insane. And I could not stop it. Till today I am convinced that this little post-infectional increase of random stress symptoms would have healed out completely to its basic level I had all my life within a few days or weeks, if I had not fed it with anxiety (it was not anxiety. It was agony, doom, whatever..I was scared *beep* honestly).

[TwitchyMark]

The tinnitus I had was unlike any of the random ringing I've had before in my life and still get from time to time. This was only in my left ear and was like a clicking or knocking sound (pulsatile?) and was accompanied by a sense of fullness (like sinus pressure) and numbness in the left side of my head and face. I suspected anemia, thyroid and even TMJ at the time. In my case, I've rarely been sick in my life and never had any physical manifestations of anxiety before, certainly never any panic attacks nor widespread twitching. I guess this will always just be a mystery for me. Ironically, last summer I took a class in anatomy and physiology and learned all about the events at the neuro-muscular juncture and how skeletal muscles fibers move (at least in theory). But I only learned about what happens when things go right. This BFS stuff became my next course.

[Adamk]

I guess the real thing to take away from it is that we are only going to get better when we are able to ignore it. Most of the people on here who have recovered or had symptom decreases have done so by not giving into the worry or the fear and accepting that there is nothing that can be done to control it. Once that is out of your mind you can be rid of the anxiety and for most of us that is a big catalyst of symptoms. The other side of the coin is simply time. as they say time heals all wounds, and it may take weeks, months, or years but I truly believe that I can get better to the point i was before. Where so if i do get a twitch here or there it wont worry me and I wont give it much thought. I will be able to move on like everyone else in the world does and know that it will pass eventually. I have asked tons of people about their own twitches and have found they get them all the time but don't really notice or give it thought. Same with the other issues i have gotten over, This for me is all a big head game that I am playing against myself. Its so hard not to be able to let go of things when you are OCD because that is how your brain naturally perceives things. You must change that pattern and break the cycle to begin recovering. And weather you recover completely or just reduce the occurrences it is still better than the way you were before.

Best wishes everyone! Don't give up! Don't give in to the fear!

[BFSBurger]

In my case, I've rarely been sick in my life

Me too.

and never had any physical manifestations of anxiety before

Me either.

certainly never any panic attacks nor widespread twitching

Me either.

I've always felt tired/run down, but I attribute that to poor diet and lifestyle.

Since BFS I have engaged in proper diet and avoiding partying, and I feel like a million bucks on a thousand different levels. And that's with this insidious, imposing dysfunction still going on inside me.

But BFS turned on like a light switch on September 27 at 12:45pm. It wasn't there before, and it hasn't gone away since.

-B-

[chrissi]

BFS has always been triggered by a variety of things ( look at the paper by Patrick) BFS is not anxiety disorder, and anxiety is not magically transformed into fasciculations. BFS is the effect of what long term anxiety can do to the body. But there are various things like infections and drugs that can have the same influence on the body. Only because something might be a stress reaction, it is not necessary that the stressor is psychological.

[muppetdog]

Cool discussion!

TwitchyMark wrote:In my case, I've rarely been sick in my life

Me Three.

I attribute it to me having an "overactive" immune system. I was the guy that everyone around me could get sick and I would not, or if I did it would last a day or two to their seven. The year or two before all this went down I started getting sicker a lot more frequently and easily which crescendoed into a case of the shingles after which the twitching started on the left side of my neck and my left shoulder blade (still a favorite spot to this day.) All this I can attribute to career advancement stress.

I do seem to be an allergic person - so says the two immunologist/allergist I saw. I reacted to to most seasonal allergies and a lot of food on a skin pick test, and reacted to a ton of foods on an IGE allergy blood test. But, I don't really manifest anything when I eat those foods. Modern Medicine...who knows?

I have read that a lot of people with fibromyalgia, CFS/ME, and a lot of autoimmune stuff have a lot of allergies. That being said, so does the rest of the population. They say that allergies and autoimmunities are on the rise in places like the US and in any other developed countries. I had read, and my immunologist mentioned and confirmed, that because we in the developed world have greatly removed a lot of the bacteria, viruses, and parasites from our environment, that we develop more allergies and autoimmunities. Our immune systems are like the US army. With all the fire power it has, it can't just sit around and do nothing. If it doesn't have bacteria and parasites to blow up, then I has to turn to everyday stuff, like pollen or soy, or your deodorant, or your own body. Throw in the chemical mess we liven in everyday and BAM! you get some pretty good "knee jerk" (kind of like the one I had yesterday) overreactions that lead to some strange, un-natural immune responses.

and never had any physical manifestations of anxiety before

Me ether.
It was only after I got "overly worried" about all the strange crap my body was throwing at me. Anyone would. You can't wake up with your feet numb/burning/tingling, twitching on the top of your head while your left arm is sore and buzzing and not be a little worried.

certainly never any panic attacks nor widespread twitching

Me ether.
I know I have had eye twitching before in my life but never whole body twitching to where I noticed it like I did and do.

The tinnitus topic. I love this one. Its very close to my heart. I started getting some low level hissing or, only what I can describer as, the sound of electricity flowing through high tension wires - Yes, I'm king of the nuts- a while back. I attribute this to trying to rock out every Nirvana song with my band back when I was 18; and some of the home recording I did. Oh, well, I'm 35, and I think most of my generation and youger have or are going to have sever hearing problems in the future. Time to buy stock in hearing aid companies. I just don't think the human ear was evolved to live in the noise environment we do every day.

After I became a "Transport Specialist" I found out that a lot of people I asked had that same if not worse ringing/buzzing/clicking then I had. I saw a hot shot Otology/Neurotology Dr from Cornell one time, and after he tested me he said I had the ears of an accountant. He could not believe I worked in a high noise environment. I do ware earplugs+ religiously, but I think your average person, at least by my age, has some hearing damage now a days.

I get the cut out cut in ringing, where you your hearing cuts out and then rings and then fades back to normal. I asked the Dr about this and he said everyone gets that. And, after asking a bunch of people, sure as sh*t, everyone does get that. I also sometimes get the clicking in one or both ears that TwitchyMark mentioned. I have long since blown that one off. It is not constant and if you ask around, again, a lot of people have that.

The guy that cuts my hair was recently diagnosed with non vertigo Meniere's disease. Now don't go jumping on the Google and convince yourself you have this because you have some ringing or clicking, the human ear just sucks. But, he gets all sorts of ringing and other sounds. He says at any one point, he has multiple tones of ringing going at once. He could not play his guitar for the longest time because the sound was painful. Meniere's is an autoimmunity. I felt really bad for him. The human ear is just so fragile. So if you just have some clicking or ringing, be happy. Your normal. It could be worse. Wear earplugs when it gets remotely noise anywhere, and don't blast your Bleach album till blood comes out your ear holes.

I may be full of crap but I just thought I would chime in.

MD

[BFSBurger]

I attribute it to me having an "overactive" immune system.

And I took medications prior to all of this, which are well known to cause an overactive immune system. High five!

-B-

[Adamk]

As far as the tinnitus goes one thing that got rid of it compleatly for me was ring relief. They sell it over the counter. It takes a few weeks of use before you notice that it's working. Ringing hardly ever bothers me now.

[mwagner]

I just want to mention that I'm one that hardly ever got sick. I used to be so proud of it. Both my kids would have horrible colds with fevers, inadvertently wiping snot on me, and kissing me, and I would get past it all. My chiropractor (alternative medicine) also stated he thought my immune system was overactive, and he theorized that was why I had so many foods I was sensitive to when I did an ALCAT test. Interesting.

I have also wondered if I have had this my whole life. Like MD, I always had eyelid twitching, and even had some hot spots here and there where I wondered what on earth was happening to my body (like my thumb twitched for 8 hours or so once when I was pregnant - over 5 years ago), but it was only two years ago where I noticed my calves twitching like crazy. But, I was focusing on it then and might not have been before. If you take your mind off of it, it really can be tuned out pretty easily.

MItra