Twitching 40 years and counting....

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Twitching 40 years and counting....

Postby Lyneve on February 7th, 2004, 6:27 pm

Hi to all twitchers,

I wanted to share my story abut bfs and hopefully provide some peace of mind to many of you. I also wanted to say how grateful I was to find this site and to know that I was in the company of so many on this annoying, irritating, frustrating, aggravating and at times, distracting, journey of life with bfs.

I'm a 52 year old woman and I"ve been twitching since I was 12. I think that every muscle in my body has probably had a turn at twitching during the last 40 years, sometimes just once or twice, never to twitch again, other times the same muscle twitching for years on end (12, 14, and 30 years) and still others going on for months, weeks, days, or hours. From time to time my sleep has been disturbed by what I've come to learn many of you here in this forum refer to as "hot spots" and every single morning I wake up to both my calves twitching like Christmas tree lights (I picked up that description from a post here, too). I have periods where I'm twitching like crazy and others when it's less so, but I am never at any moment of the day totally twitch-free. On more isolated occasions I experience some sharp, needle-point like pain (not accompanied by twitching) and a "buzzing" sensation, again, without twitching. I believe I falll into the category of 10% of bfs'rs who feel the condition has worsened over time. (I can't remember where I came across the results of a survey) And yet here I am, still, after 40 years, alive & kicking and considered to be in excellent health. The only pills I take on a regular basis are vitamins. So for all of you who've been diagnosed with bfs, I know it's easier said than done, but it's time to relax - I've withstood the test of time and so will you.

Once each during my adolescence and in my twenties I mentioned my symptoms to two different doctors and without running any tests whatsoever, they both chalked it up to stress. I let it go, believing I was completely alone with this condition until during a very active bfs period about 15 years ago, I finally consulted with the chief neurologist of a major hospital in the large metropolitan area where I live. Imagine my utter shock when after just a few brief questions he finally put a name to it, told me he also has the same condition, only more severe, to just learn to live with it and charged me $500 on the way out. Since that time I've seen two additional neurologists who ran tests, confirmed the diagnosis and once again, one of them told me he also has bfs. He thought perhaps a "massive" viral infection at six months of age (whooping cough) and another viral infection at 11 or 12 (German measles) precipitated my twitching.

The reason I consulted with these last two neurologists during the intervening years was to find out if any medications had been developed to specifically address this problem. We all know the answer to that. In addition, the meds. being offered carried the risk of side effects that I didn't want to play around with. So I take nothing to alleviate the symptoms. The only thing I do is limit my intake of caffeine and lead a pretty healthy lifestyle - I excercise hard several times a week, eat properly most of the time, and maintain a great weight for my age & height. None of which seems to help reduce the twitching much except maybe for the caffeine reduction but even with that I'm not sure I can point to a direct cause and effect. I have noticed that heightened periods of stress will worsen it. But that's it. In all the 40 years I've not been able to identify a direct link or pattern to anything that produces or reduces these twitches.

I never used to mention bfs on the history part of a physical exam since I had been told over and over that it's a completely benign condition so I didn't bother. In the last several years, however, I've begun to mention it to whichever physician I happened to have an appointment with and been amazed that none had ever heard of this syndrome. I referred them to this site for info. I figure the more people who know about this subject the better for all of us.

So, I apologize for this long post. I guess I had the need to share and in the process I hope my story reassures those of you recently, and perhaps, not so recently diagnosed. You will survive with this. A bfs diagnosis by itself is not a harbinger of worse things to come. I'm the the living proof.

I was curious about several things: Is there anybody out there who has been dealing with bfs as long as I have or even longer, or am I the oldest veteran of bfs you've come across? Did anyone else start twitching in childhood? If so, any history of childhood illnesses?
Lyneve
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Postby Nole on February 7th, 2004, 11:00 pm

Thank you so much for sharing your story...Wow 40 years and still going. I have had BFS for almost 2 years, and I believe also mine was brought on by a virus, I had ine right before my onset and throughout my life I have been plagued with chronic viruses. I am doing great, nothing in my life has changed because of these twitches. They can be a nuisance but I dont let them get to me. I am feeling fine, no weakness, and for the most part my twtiches are very mild, somedays non existent. Your story should be an insperation for us all. Go out and live your life, be happy, and twitch away. Thanks again for the great post!~
NOLE
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Thanks for your comments, Nole

Postby Lyneve on February 9th, 2004, 10:42 am

These twitches have not changed anything in my life, either,and for the most part I've been successful at ignoring them. The only time it's been difficult to do that has been when they interrupt sleep or there's a particularly severe "hot spot".
Lyneve
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Postby SusanSid on February 12th, 2004, 11:42 pm

Lyneve,
Wow, what a great posting! Thank you. I have had BFS officially for 2 years, but I recall having 2 other episodes several years earlier that stopped, so I never gave it a lot of thought until they became 24/7.
I personally feel that there is more than one cause for BFS, that BFS is a response to many different things. If I look at the facts , I know I'm fine. However, if I'm really honest with myself, I have allowed BFS to limit my enjoyment in life. Your post reminds me to live and not sit and dwell. Thanks
Sue
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Hi Susan,

Postby Lyneve on February 14th, 2004, 4:58 pm

I have to admit that in the course of my experience with bfs I also had times when I allowed it to make me miserable but when I really stopped to think about it, I realized, when considering the grand scheme of things, that I was being foolish for not being thankful that it's a benign condition. With everything that can go wrong with the human body (and being a nurse, Susan, you certainly know first-hand the range of possibilites) I'll take harmless twitching anyday. My suggestion, and also the way I finally decided to deal with this, is to ignore it as much as possible and go full speed ahead toward enjoying life.

I'm interested in hearing your ideas on what you believe could be the various causes for bfs.

Thank you so much for sharing your thoughts.
Lyneve
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Hi Susan,

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