My Personal Experience With BFS

This forum is for posting your personal experiences with BFS: symptoms, doctor visits, fears, etc.

Please use this forum to post give and recieve encoragement and reassurance from sharing the trials and triumphs you have faced.

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My Personal Experience With BFS

Postby Oswy on August 19th, 2004, 5:04 am


When I was in my early 20s I began to experience persistent twitching in my eyelids and in the muscles around the eyes. After a while this twitching would subside only to return a few weeks later, but before long the periods without any twitching diminished to nothing. Although it was very distracting I (sort of) got used to it and didn't think about visiting a doctor as I assumed it was just "one of those things".

After about a year of the eye twitching I began to experience twitching elsewhere in my face (bridge of the nose, cheeks, lips and even my tongue!), this really did disturb me, I felt now like something was happening to me, but I was still reluctant to see a doctor - I just wasn't the doctor visiting type.

Then (two or so years on) the twitching appeared in my arms and my legs, mostly these were tiny spasms, barely visible on the surface, often not visible at all, but the sensation was distracting enough. Before long it felt as if my legs were "buzzing". If I mentioned my experience to anyone they didn't have a clue what I was talking about, I was in a world of my own where my twitching and buzzing was concerned. Occasionally I would experience large spasms, like intense cramps, in my calfs, by now I was worried, but I was still reluctant to visit a doctor.

I did a little research of my own and discovered MS as a possible candidate for my condition (I didn't find BFS at all) - as you will imagine I was devastated, I went through a bleak period when I though that I was going to die from a progressive, debilitating and distressing disease. I couldn't now bring myself to see a doctor because it meant confronting (as I thought) the fact that I was dying, my friends and family would have to be told and so on, I became unemployed and aimless, trying hard to maintain an image of being part of the "normal" world when I felt that I was going to become very ill.

Eventually I did decide to visit a doctor, only to be confronted with scepticism that there was anything happening to me at all. At the time I was unemployed and I was simply told to pull myself together and get a job. Looking back I should have been more assertive, but I was young and didn't have the confidence to challenge him. It was especially difficult to pursue, I felt, because the symptoms, as you will know, aren't always visible, it's not easy to say "there, don't you see it, my legs are jumping all over the place!".

Another year or so went by and I plucked up the courage to see a different doctor, the scepticism persisted but I was referred to see a specialist in neurology. After a series of visits to a neurologist (which took place over an 18 month period or so) I was at the end of them sat down and told that I wasn't showing symptoms of MS, or indeed of any progressively debilitating neurological condition. But because (fortunately for me, ironically) my eyes had been twitching at my first visit to this specialist, and he witnessed it, he said that I almost certainly had something called benign fasciculation syndrome, a condition which wouldn't kill me or put me in a wheelchair but which also couldn't be effectively treated. The advice I received was to try and just "get on with life" as I may experience BFS for several years or even the rest of my life.

I'm now 37 years old and I never went back to see a specialist since that difficult time in my early 20s. The condition has stabalised but never receded. My legs, particularly in the calf muscles, ache ("buzz" as I call it) constantly, from the moment I wake to the moment I fall asleep (and getting to sleep hasn't become any easier after all these years). My eyelids still twitch, as do my arms, hands, thigh muslces, and occasionally pretty much everywhere else in my body - I've even experienced twitching inside my ears (painful) and a couple of times in my sphincter muslce (very painful).

I expect to experience BFS until I die pretty much as I've now had it for around 16 years. It hasn't been the end of my world, but ever since it became firmly established as a sensation it has dominated my consciousness by degree. Waking up every morning and feeling as if I've just run a marathon is possibly the worst of it all for me, I feel fatigued even though I'm not.

Sorry about the self-indulgent rant but I've never really gone through the whole history of my experience with BFS.

I'd very much like to hear if my experiences mirror those of others here.

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Postby Stephanie on August 19th, 2004, 12:54 pm

I have been twitching for 2 years non-stop. Every second or two I twitch somewhere ranging from a srong thump that I can see through clothes to a tiny twitch I can't see or a tingle. I have twitched in every single muscle (I could swear that it felt like my heart actually twitched several times), but primarily in my calves & feet. For a year I was certain I was going to die and it took over my life until my recent visit w/a 4th neuro in NYC. You just have to find a way to accept the twitching as part of you. Easier said than done but on my good mental days I can do this and I feel great.
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