Benign Fasciculation Syndrome – My Story

Benign Fasciculation Syndrome aka BFS, said the neurologist.

In the middle of July, I developed a persistent lower eye twitch.  The twitch would occur off and on all day long and last for minutes at a time.  I would go to sleep with it twitching, wake up with it twitching.  It was very annoying and exhausting..not to mention I felt everyone could see it.  After a month of dealing with this I consulted Dr. Google (generally not a good thing to do).   Stress, lack of sleep, caffeine, alcohol are all contributors.  I was experiencing one of the most emotionally stressful times of my life and blamed it on that.

The eye twitched continued for months with only 2 bouts of remission for about 10 days each.  The great relief I experienced during those bouts was quickly replaced with frustration when the twitching returned.  Fast forward to the end of November…

 The twitching began to appear in other parts of my body…my feet, legs, arms, leg, cheek, lip, neck, upper eyelid….even internally to the point that I felt like I was 7 months pregnant and a baby was moving around inside me.  Fortunately, none of these twitches or sensations were  nearly as constant as my lower eyelid aka “my hotspot”.  Usually a quick twitch, “pop” or faint feeling of something crawling under my skin.  Dr. Google provided many scary diagnosis including ALS (Lou Gehrig’s Disease), MS and Muscular Dystrophy to name a few.  Enter the panic attacks….fortunately only 2.

Further research finally talked me off the ledge as I was able to convince myself I didn’t have any of these terrible diseases and in fact I probably had BFS.  I had already been to my family doctor who referred me to the neurologist.  The neurologist confirmed my suspicion.  Although he still suggested a potentially uncomfortable test (EMG) to really rule out the “bad stuff”.  But his concern level was very low and I’ve opt to wait on getting that test done. 

The neurologist could not offer any solution because there is none.  I’ve learned that anything called “syndrome” is just a black hole…you don’t have any of these other things so you have this “syndrome”.   Fabulous.  So back to the internet to find other people with BFS.  I wanted answers.

BFS has no time limit.  The symptoms ebb and flow.  It could go away for awhile then come back. The twitches could be become less frequent and less intense or go non-stop 24 hours a day.  Something usually flips the “on” switch but it’s not the same thing that flips the “off” switch. I have yet to hear of a permanent off switch.  There is really only a dimmer switch and the trick is to find what causes the dimmer switch to turn one way or another.

Modern medicine has disappointed me.  I’m now seeing a Naturopathic dr in search of what triggers my dimmer switch.  We may be on the right path to finding that information but it’s too early to be too excited about it. 

In my case, I truly believe the extreme emotional stress I was under when my x-ap disappeared from my life triggered my BFS.  The onset occurred 2 1/2 weeks after he left and in those weeks and even the weeks leading up to his disappearance, I wasn’t sleeping, wasn’t eating, an emotional mess with no outlet.  I had to keep up appearances for my family, work etc.  I have no doubt my immune system was weakened from the stress and lack of self-care.  All of this put together created the perfect storm and BFS broke through the surface. 

Fortunately this is a benign issue.  And if I look at it from a positive perspective, it may in a way be saving me from something not so benign.  This “syndrome” has caused me to take a hard look at my lifestyle, the foods I’m eating, how I sleep,  manage stress etc.   I’m slowly making healthier lifestyle and dietary changes. 

There is a reason for everything……and that is my story.