Hi everyone -- 23 years with BFS

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Hi everyone -- 23 years with BFS

Postby MaryG on May 28th, 2014, 9:40 pm

I am so excited to find this group! Truthfully, my BFS has been such a non-issue for the past 15 years or so that I never even mentioned it to my new doctor. The only reason I found all of you is because sometimes my jaw SNAPS shut suddenly. This freaked me out a bit, and when I went looking for the cause--it came back to BFS. Who knew?!

Like a LOT of folks here (I've been poking around a bit...), I was terrified that I had ALS when this first started. This was 1990--5 years before I got online--so, my trusty Merck Manual totally led to the wrong conclusion. It was absolutely petrifying. What happened was my second pregnancy. With a 2.5 year old to take care of and being up all night in the last 3 months or so of pregnancy, sleep was pretty much non-existent. Then, I nursed my new baby, who didn't sleep through the night until she was 18 months old. So, all told, this was nearly 2 years without a full night's sleep. I noticed the buzzing in my feet, and could actually SEE the tiny muscle twitches, figured out they were fasciculations, and then lived in complete fear that I would have a horrible, debilitating death and be a burden on my family. After a year of this (during which it didn't get any worse), I finally got a referral to a neurologist, who turned out to be one of the best docs I've EVER seen. He read my chart from cover to cover, asked me about things I'd long since forgotten, and did a thorough exam. No EMG. But, he was so meticulous that when he said, "This is benign fasciculation syndrome," I believed him--and let all of the fear go.

At the same time, I had a friend who was also nursing a new baby and had the exact same symptoms. She was also told it was BFS, but she was highly anxious about it and needed to take antidepressants. I'd been depressed before, but was so elated to not be dying that I was thrilled!

To me, it's been incredibly clear that the problem is SLEEP DEPRIVATION. My theory is that, since neurotransmitters are formed during sleep, I had depleted ALL of mine. This led to twitchy, overactive nerves. For the next decade or so, every time I got less than 5 hours of sleep in a night, I would twitch and have muscle weakness. But, eventually, it all pretty much went away. Now that I'm post-menopausal, I don't sleep very well a lot of nights--and the twitches are back, along with the jaw-snapping. Right now, my left index finger has been twitching for days, which put me in mind of Parkinson's (YouTube is our friend: if you search for Parkinson's tremor, it's SO clear that that is NOT what we have!).

Anyway, I've ordered some melatonin (it's also supposed to help bone health to sleep better), and alternate taking lemon balm and chamomile capsules, which don't help me FALL asleep, but do help a lot with sleep quality. Between the two, hopefully the sleep will improve and the twitches will ebb again. I hope this helps someone. :)
MaryG
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Re: Hi everyone -- 23 years with BFS

Postby jebmd on May 29th, 2014, 9:11 am

Hi there,
I agree with lack of sleep as a major issue in this condition. I have been sleep deprived since my son started Kindergarten (he is 16!!!) and I was always worried about his performance at school and convinced that he has a mild autism spectrum disorder. Even now in grade 10, he still struggles to remember facts in biology-the sciences are hard for him, OK in math but I have spent COUNTLESS hours with him on schoolwork over the last 11 years. That is when the sleep issues began, the constant worrying about his future etc. Unsupportive husband, and MANY fights about him trying to take on more of the schoolwork load so I can rest my mind a little (that and my horrible mother in law who is now dead thankfully). I have been on sleep medication ever since (about 9 years) and this has helped me cope. Twitching only started Sept 2013 after a stressful summer and start to the school year (one kid in high school and the older one in university). I have had to let go of some of my job responsibilities and to force myself to do less for others. It has been a long road, and now I am dealing with thyroid cancer too-I am convinced that all of my health issues are caused by stress-so you are not alone.
I also let go of the ALS fear as soon as the neurologist did my EMG x 2 and pronounced me fine and have not looked back.
Each day as it comes! Peace.
J
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Re: Hi everyone -- 23 years with BFS

Postby MaryG on May 29th, 2014, 10:35 pm

Oh my gosh, I can't even imagine 9 years without sleep! (Although, my MIL has her horrible moments, too. Mostly she's just pretty pathetic). You know how the flight attendants always tell you to put on your own oxygen mask before you help someone else? We have to fill up our buckets before we can empty them out to help others. I'm sorry that your spouse isn't supportive. I've been truly blessed with mine. But, it can't hurt--and might help--to figure out some things that will feed your soul and bring you joy.
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Re: Hi everyone -- 23 years with BFS

Postby TwitchyDoc on May 30th, 2014, 2:38 am

You mentioend only feet fasciculations, which is really very common. I wonder if you have had any in different places. Calves and feet fasciculation is something that is considered quite common in clinical practice. Unfortunately most of us is twitching also in the rest of the body. In my case, arms are probably the worst.
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Re: Hi everyone -- 23 years with BFS

Postby bobajojo on May 30th, 2014, 7:56 am

Arms and shoulders are the worst for me too these days. They flicker, pop, and rapid fire on me all day. I feel a twitch every few seconds somewhere in my arms or shoulder. Good times.
Over 10 billion twitches since May 2011.
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Re: Hi everyone -- 23 years with BFS

Postby MaryG on May 30th, 2014, 8:07 am

I do get them elsewhere, too--they just started with my feet, and have always been the mot noticeable there. For the past couple of weeks, my index finger on my left hand (and thumb, here & there) have been twitching. And there are the annoying eye twitches that can go on for days, the jaw SNAP--that one scared me. Palms of hands, sometimes. Not so much my arms or shoulders or upper legs or trunk, that I recall, though. My feet are buzzing right now.

When I read the FAQ, it was. Surprise to learn about OTHER symptoms besides the fasciculations, like fatigue (check) and exercise intolerance (check...). Big "Aha!" moment there! But, overall, really this has NOT been a big deal for most of the past couple of decades, and sleep is absolutely the key for me--but I'm lucky to not also have anxiety...
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Re: Hi everyone -- 23 years with BFS

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