Living With BFS: Is It Here to Stay?

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BarbiePetals

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I'm just sitting here wondering if this BFS is going to last the rest of my life. It shows no signs of going away so I think it is here to stay. I'm thinking how am I going to cope with this? I know most "old timers" say the the twitches fade into the background so I am really hoping this is true cause so far they have not faded at all.~Leslie
 
I'm not an oldtimer yet, but I do think the twitches tend to fade to the background. I am now capable of going out (or even staying in) and enjoying myself to the point where I don't even think of BFS. When my mind or body is busy, it's the furthest thing from my mind. In the beginning, I also didn't sleep for worry. That is no longer the case. I still have times when I notice every twitch and fret about each new symptom. I am just coping better most of the time. You will too. Keep posting. People in "real life" have no clue and don't care to get one.
 
Hi LeslieI often ask myself this too. how long have you had this now? My neurologist said it would last about 6 months but I have ben giong almost 11 now. I sometimes tell myself that the longer it lasts the more confident I can be that it is benign (I still have my share of health anxiety about ALS) but there are days when I twitch badly that make me fearful about this.CheersSimon
 
Days, Months, Years...it is different for everyone. The major deciding factor in how long yours will last...is your anxiety over it. Ask anyone ;) You didnt respond to my text!*hugs*~*~Amy~*~
 
It's reassuring to hear that a neuroloigst has told you it could last for years - this makes me feel less worried that mine isn't settling after almost a year.Thanks for thisSimon
 
Hi Leslie its approaching 2 years for me and I still twitch although yes i have to say I have good days and bad days, the anxiety of having a dreadfull life threatning disease has passed I know I dont have ALS or MS, and feel that I can enjoy life 70% of the time as opposed to 20% as was the case for the first year. The thing that gets me on this site as I have said in an earlier post is, Ok I have BFS and wont die but for Pete's sake people why is everyone so content to leave it at that. I want some form of treatment. Irratible bowel is benign but no one would say yeah great I dont have bowel cancer back to the grind, they want treatment for symptoms and thats where Im at with this whole thing I need some control back so that when I get one of thoes bloody hotspots I can take a pill to lessen its effect or stop it, anything just some help. I hope I dont sound like Im ranting but im sure you dig what I mean. You do learn to ignor a lot of symptoms promise although you cant imagine it in the begining and some places that twich are worse than others.cheers. x!
 
I could totally live with the twitches. They don't hurt and don't prevent me from physically doing anything. What gets me is the calf/leg muscle flare ups of tightness and pain. These always send me into an anxiety spiral because they seem so much more ominous than the twitching and I get worried its going to progress or get worse.
 
Mario I dig what you say but if everyone were of that opinion think of where we as a species would be. Pursute of the unknown ans solving of mysteries is part of being human. There is acure it just has not been found.cheers. x
 
Mario,I just love your posts!!! The Shawshank Redemption is my all time favorite movie and that line "Get Busy Living, or Get Busy Dying" is my favorite. I even posted that a few weeks ago on here. Such an awesome saying.
 
It would be nice if a few people were on here that had total remission of symptoms. I haven't noticed many of those posts BUT, you'll notice that the most old timers on here are around1 year or less. I have hope!
 
Hi TimThomas24 (and all)I agree that the pain and cramps are a anxiety-inducing aspect of BFS. I don't know why the cramps have got me so worried just when I had learaned to live with the twitches - probably in my case becasue it is a new phenomenon for me after having had twitches without pain for such a long time.CheersSimon
 
I am on 5 years. But my twitching has decreased over time.I don't notice and/or feel them much anymore. Maybe a handlful of times a day.Usually around dinner time, I buzzzzzzzAnd my ankle still bothers me.But look at the bright side, most people get 'somewhat' better in time. Better than nothing.-43RichyThe43rd
 
Thanks to all those who have had BFS for a good long time that have contributed to this thread. Nice to know there is light at the end of the tunnel, even for those sufferers whose BFS does not go into remission quickly.Simon
 
I haven't seen many stories from members that completely quit twitching. There have been many members that came on and said they were cured only to come back later and say they were twitching again. The fact is though, once you get past the anxiety, the condition kinda becomes more of a background issue for most people....you basically live your life without much attention paid to the fascics. That is certainly the case for me, but given the fact that I also cramp, I tend to get jolted back to reality on a regular basis. That said, my life is otherwise normal and I hardly ever notice the fascics anymore, unless I stop and pay attention to them (they are always there anytime i take time to notice them).So to answer your original question, I believe I will twitch forever, and if I do, no big deal.Take care,Gary
 
A couple of posts I'd like to see-1. Hello folks, just stumbled on this site. FWIW, I had BFS back in the 1970's, although back then there was no name for the condition really. After about a decade of twitching, including calves all the time, got over it. I'm now 85 and healthy... as one can be at 85 anyway. or 2. Hello folks, just stumbled on this site. FWIW, my aunt has had BFS for decades and is 95 now...still twitching...but she rarely complains anymore about it...shes doing well otherwise. I can dream, can't I ? :sick:
 
That's right, Laurent. You will have this forever. In fact, you will die with it. You just won't die because of it. That's the most important thing to remember.
 

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