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.

 

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9 thoughts on “Benign Fasciculation Syndrome – My Story

  1. foreverstuckinthemud says:

    I’m sorry you are going through all of this. Keep your head

    Liked by 1 person

  2. Amy lantaigne says:

    Has your bfs ever gone away? I’ve been dealing with it for 3 months. Let me know!

    Like

    • oh no, I sympathize with you. It is the most frustrating, nerve wracking thing to deal with.

      Mine is not gone completely gone but I barely notice the twitches now…and I’ll take it over what I was experiencing!! I get less than 10 quick 1 time random twitches a day. I don’t have any persistent non-stop twitches like I use to. I’ve been like this since January with only one relapse for about 5 days when I was sick.

      My Naturopathic dr took me off all of my vitamins..many my regular primary dr put me on (multi, calcium, vitamin D and super b complex etc). He put me on a new multi vitamin and Potassium-Magnesium Citrate (140mg mag and 200mg potassium). So far so good. I also made lifestyle changes to try to reduce my stress level. I truly believe EXTREME stress triggered this for me.

      I’ve seen so many stories of people that have this and various things work for various people. Unfortunately, many times it comes back so what was working no longer works.

      I hope you find something that calms down your twitches!

      Liked by 1 person

  3. Tina says:

    Hello

    This story sounds so similar to mine although I now seem to be experiencing muscle pain, lump in my throat and burning sensations as well as more twitches. I how are your symptoms now? I am 10 months on and have tried a few things, I’ve been referred to the neurologist but I think they will come up with the same as you.

    I have read about a condition called TMS, if may be worth a read. I may give it a go and also scream therapy.

    Mine started after extreme stress also, my body couldn’t take it.

    Let me know how you are getting on with your BFS.
    Thanks
    Tina

    Like

    • Hi Tina, I’m so sorry you are dealing with similar symptoms. It is not fun at all. 😦
      For the most part, my BFS is in remission. I have had a couple of minor flare ups which I can correlate to times high emotional stress. It seems emotional stress is a huge trigger for me. The flare ups are not nearly as bad as the onset of BFS. But at the time of onset, my emotional stress was off the chart, the worst I’ve probably ever experienced. When the flare ups occur, I increase my magnesium dose and that helps. My Naturopathic Dr is the one who put me on a specific magnesium compound.
      I hope you find some answers and relieve. Keep me posted on your progress and if you have any questions or just need to vent about it, feel free to reach out to me.

      Like

  4. pedro says:

    try magnesium chloride liquid , take 20 tequila shots of magnesium chloride distributed throughout the day , and at the very morning drink sodium bicarbonate with lemon juice with an empty stomach, let me know how you feel in 3 weeks

    Like

  5. Thandy says:

    its true as for me the cause was anxiety because my hubby had taken all my kids to zimbabwe from South Africa and he was driving. l was worried about them in case they had an accident and all died. so l wasnt sleeping at all. I went to see the doctor coz l was worried of my fingers moving on their own and l was worried too about ALS for l was always on google. The doctor said it was alk anxiety and he prescribed trepiline 25mg and calcium and magnesium supplements. l took trepiline for three days but the following morning l will be zoned out l wasnt coping well at work and l stopped taking them coz l was having tremors and vibrations in my whole body but l continued with the calcium and magnesium supplements which indeed helped me. But l hv noticed that if l am having a lot of stress the muscle twitches come back again.

    Liked by 1 person

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