One Year of BFS (My Story)

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One Year of BFS (My Story)

Postby seventhcandle on June 28th, 2013, 7:19 pm

On 6/26/13 (a few days ago), I came across my one year journey with BFS. Overall, I am in much better shape emotionally than I was a year ago, when I would go 7 days in a row without sleeping. A year ago, my twitching was pretty mild, but I had the worst sleep-onset jerking imaginable, which would keep me awake for days at a time and make taking a nap impossible. My sleep went to sh*t and at one point, I experienced suicidal thoughts from all the sleep deprivation.

I nearly lost my job, slept on a tile floor strapped up like a crazy person with a bench or bed on top of me to suppress the jerking at night, and visited countless neurologists who failed to help me.

In the process of going through this, my wife of 8 years left me for another man and asked for a divorce and I just hit a point of not knowing what to do anymore. I was depressed. Super depressed.

As my BFS worsened over the months, I developed harsher twitching which was set off by an ever-increasing list of food, chemical, and environmental sensitivities. I would get these awful flare-ups that would last for 48 hrs and not subside until 1-2 weeks later. I could no longer eat any sweets, meats, cheeses, processed foods. I could not be around fluorescent lighting for too long and could not breathe in scents like perfume. I felt like I was living in a prison cell.

Well here I am, one year and two days later, still alive. I still only eat about 8-10 different foods each day which helps with my symptoms.

Do I still twitch? Yes. Absolutely. Much worse than when this all started. My calves, feet, and quads go 24/7. My shoulders, forearms, triceps, biceps, and hands also go 24/7. Lately my tongue has been doing this as well. My chest, back, and butt - the same. If I sit and pay attention to my twitches, I will notice at least 1-2 per second somewhere on my body, some very strong and others just one-hitters. Not so much on my face, but that varies.

Do I still jerk at sleep-onset? Not as much, no. I haven't been severely flared up in awhile so I've been getting 3-5 hours of sleep per night, without any sleepless nights in recent memory. I do jerk a lot in my sleep from what I can tell, but I still get some rest, even though I haven't had a single night's deep sleep in over a year. I still sleep on the floor, however, because I feel the twitching too much in a soft bed.

I survived a brutal divorce. I am moving out in a few days to my own place.

I have been dating again, although nothing serious. I went to the fair, went on the rides. I try to go for walks. In short, I try to live my life. It's not easy and every day is a struggle, but I believe it will get better over time.

One year is a long time to deal with these daily symptoms, but I am confident if I take care of my body, eat well, keep stress levels down, and focus on work and being a good parent to my 6 year old, that things will get better.

I also changed my insurance recently, so I might make a trip out to the Cleveland Clinic one of these days to explore the idea of a potassium channel malfunction - we'll see.

I owe a huge debt of gratitude to the many people I've met here in the past year from Leanne (mommylondon) to Matt (bobajojo), Kevin (BFSBurger), Seepi, Johnny, Mario, Vicky, Greg, Chrissi, Misty, Chad, and countless others who have heard me out or put up with me at my worst. Thank you from the bottom of my heart!

In the meantime, I'm going to just try to live my life the best I can. I am blessed to have BFS and migraine, as there are much worse disorders out there. Thank you everyone for reading this and I wish you all well on your BFS journey, wherever it takes you.

Been on the BFS journey since 6/26/12...

Twitch way do I go from here?

BFS does get better with time. Almost two years in and able to do almost everything I could do before I had this condition. Still twitching away of course...
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Re: One Year of BFS (My Story)

Postby bobajojo on June 29th, 2013, 6:35 am

Great post Howard. Any single ladies on the board? Shoot Howard a PM, haha. Let's make a BFS connection! -Matt
Over 10 billion twitches since May 2011.
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Re: One Year of BFS (My Story)

Postby Yuliasir on June 29th, 2013, 6:44 am

Hi Howard,

sad to read about divorce, but finally good to see that you made a lemonade form the lemon :)))
thanks for update, have a good life!
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Re: One Year of BFS (My Story)



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