Quick Hello - BFS Three Years

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Hi all,Just a quick hello- I'm sure I don't know hardly any of the people on here anymore but I know how much I loved to read posts from those who had BFS for quite a while. Three years this July! Where'd the time go!My story is much the same as everyone else- I've had every conceivable type of twitch at one time or another. The twitching in my calves is exactly the same as it's always been- constant. I hope that doesn't depress some people who are hoping for this to go away, and who knows- maybe it will.But I assure you that in short time, you'll come to accept the twitching as just a weird thing that your body happens to do now.I certainly know what my triggers are- lack of sleep, stress, an oncoming cold, etc..but that fact is, the twitching is always there so you just move on. I'd be happy to answer any questions anyone has and offer information on how I've experienced all of this. I know how frightening it is in the beginning but it will get better. I used to post all the time but haven't posted in ages because you just end up coming to an acceptance. And anyone there who remembers me, hello!! Hope you are all well.Shelley
 
Thank you for posting as I have read many of your older posts. I just posted the other day about all the "oldtimers" and what ever happened to them. I'm still new to this (only 4 months) and still in the semi-terrified stage. Us newbies love when we hear from everyone who has been twitching for so long and are still o.k. I hope I can come to terms with this just like you.~Leslie
 
Hi Shelley.Thank you so much for checking in on us. It is always great to hear from someone who has been through it all and is still going strong. Becky
 
Hi, Shelly...I enjoyed your post. I've told a couple of people I've been twitching randomley for 32 years. I'll be 46 next week. I didn't know what to think of it during my teens -- whether it was a sign of something serious or just puberty. As time went on I saw that it got no worse. My doctor wrote it off to stress. Some twitches are very small, and transient. Others have lasted for days, even weeks. And still others almost pack the violent feel of a pager vibrating against my abdomen. I've had twitches literally from head to toe, even inside my ear. I've learned to live with them. They're annoying, but that's all....I had an annual physical this week, and my doctor says I'll live to be 100. I told him that's a lot of taxes to pay. :)Roy
 
Hi Shelley,I remember you :D) . Good to hear from you again....I can't believe it has been 3 years since you first showed up here. Glad you are doing well.Take care,Gary
 
Shelley,Simply wonderful. GraciasRoy, Posts like yours should be mandatory reading for all the board members. Gracias y Adiós,Eduardo
 
Same here. For a few days my left hand, and now arm, have been going mad. Twitching elsewhere also, needless to say! Every day is different apart from the fact that I will twitch. Yet, same strenght and doing otherwise well.
 
Shelley,Thanks for updating us. I have been here a year now and your posts were some of the most helpful. I remember that you are a fitness instructor and also took Klonopin for your twitching and/or anxiety. I take Klonopin (.5mgs twice a day) and this helps me a lot. I am also now doing aerobics and some running. I have the twitching all over and am still in the phase of trying to find some answers. If I get three years under my belt with little to no change, I hope I will have the same peace you have. Every day that goes by that I still have all my strength, I do feel better. My question is are you still taking Klonopin at all? If not, did you have any trouble getting off of it? You mentioned your calves but how often do you get twitches other places? Thanks again for just letting us know how great you are doing. You have no idea how much good this type of news does for me.Krackersones
 
I actually don't take Klonopin anymore. On the day I found out I was pregnant with my daughter (nearly 2 years ago now), I stopped taking it. After I delivered her, I was nursing so it wasn't an option. Then, I realized I was really doing quite fine without it. Not that I minded taking it- it was quite helpful at the time. But, I also found it pretty addictive and saw that it really didn't affect my twitching at all- only my perception of it. I still walk 4 miles everyday and did a 40 mile breast cancer walk in May- the long distance stuff really ramps up the twitching but I've come to expect it.
 
Forget to answer the rest of your question...twitching is constant in my calves but I do get random ones maybe one a month now...maybe even less. I'd say the ones that really end up being hot spots (lasting 2-3 days or so) might only be every 6 mths or so. So, there is a bright point I guess! The random hot spots definitely have slowed down over time for me but the calves are going a mile a minute all the time
 
Shelley,Thanks for answering my questions so thoughtfully. I will be having another EMG soon and will go off the Klonopin for about four days for that. I've gone off it before and realized that it is really reducing my twitching (or maybe perception of it but whatever it is it makes a big difference for me). I have a lot of sensory nerve problems from whatever is causing the twitching so that may be the reason the Klonopin helps me a bit more. Anyway, I'm glad to know that going from taking it to not was not a big ordeal.Krackersones
 
Hi, Shelley!Sorry to ask (a question from a relatively newbie to an old-timer): do you still feel the shaking or vibrating on your head and body at night?ThanksCarlos
 

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