This is ruining my daily life

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This is ruining my daily life

Postby Squidge on August 28th, 2014, 2:55 am

Hi all
I'm quite new to twitching....eight weeks and counting . I've had neuro clinical and been diagnosed with bcfs. Neuro said I don't need an emg. He said he knows this would be normal so waste of time. Anyhow, I am now in a sorry state with constant twitching and leg cramping, burning, tingling, prickling and also twitching in arms, abdo, neck, back and even more personal places on occasions. I find patterns to this throughout the day. It is worse when sitting, lying in bed, and better when moving .i get stiff legs when I'm still and can only sleep on my back with a pillow under my legs to ease things. Now I'm gonna tell you something very strange..if I have a glass of wine or two, which I do every evening, my symptoms virtually disappear and legs feel perfect. This happens every day.. Same thing.
I am at the point now where I am paranoid/neurotic/sad/ terrified and have lost my enthusiasm to do anything. My daughter is over from Canada for two weeks (I live in the Uk) and I feel that this affliction has ruined her stay as I am so preoccupied with this 'thing'. I am constantly checking for weakness, atrophy etc. I am on the net on boards such as this, which has also become an obsession of mine to keep reading bulletin boards, which my family keep telling me to stop doing as I usually find some negative posts or articles to ruin my day. I am now in a very, very dark place mentally and I feel the future is bleak. I only get solace in a glass of red wine and a hug and reassurance from my family . I've gone from a happy to be alive fun loving person to a physical wreck. I keep telling everyone what a sad pathetic woman I am and they all kinda understand what I'm going through. I hate to keep seeing that awful three letter word plastered everywhere on the internet when you type in these symptoms and I have come to the conclusion that these bulletin boards, while supportive and helpful on the whole, may be doing us all more harm than good. However, I'm now hooked like the rest of you. Wouldn't it be wonderful if everybody stopped mentioning the dreaded beast and started posting positives to help us all feel better. I bet a lot of our symptoms would disappear if that were the case. This syndrome that we all have is an anxiety/mental issue as much as a physical one I'm sure and, mentally at the moment,I feel worse than I've ever felt in my life. I am considering seeing a counsellor or psychiatrist..... It's got that bad.

Thanks for reading and I do hope you all find peace of mind and that we all have happier times ahead. At least we all have something in common and despite what I said about forums doing more harm than good... It is nice to know that there are fellow twitchers in the world apart from me
Best wishes and thanks to all of you that have made me feel a little better with your reassuring posts
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Re: This is ruining my daily life

Postby Nytviolet on September 7th, 2014, 12:16 pm

I'm sorry you're going through this. My neuro also refused an EMG at last appt (even though I'm 49, have fascics, left leg 1" smaller, weakness left leg and arm)...he examined my hands, feet and tongue. Checked patellar reflex (decreased) and checked for babinski (none). Then he said, "come back next month"; I see him 9/11. I felt he was rude, but we have to remember that they know exactly what they're looking for. Also, the fact that a glass of wine stops your symptoms should tell you sm-thing. If *** was cured with wine, what a happy world this would be! Lol. If you truly feel you need an EMG to put this to rest, make the call to set it up. Surprisingly, 67% of the folks on this site have had EMG and they're STILL concerned! This does have an OCD quality to it...and I'm also guilty of searching the web and freaking myself out. On days that I avoid it, I am a much happier, positive person. Perhaps make a deal with yourself: you will avoid this site (or any medical sites) for two days...then see how you feel. I know it helps. Best Wishes!
2 Timothy 1:7 For God hath not given us the spirit of fear; but of power, and of love, and of a sound mind.
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Re: This is ruining my daily life

Postby emmie.s on September 7th, 2014, 12:37 pm

Please do consider seeing a therapist; you need to get your anxiety in check before anything else and force yourself away from the internet.
Are you sleeping well? Lack of sleep and interruption of sleep increases twitches, and it turns into a vicious cycle.
My advice is this: aim for 8 hours of sleep a day. FORCE yourself to work out, even if you don't want to. Even if its just a 1/2 mile stroll a day, it honestly helps. And yes, after you work out for about an hour or so you will have even more of those popping sorts of twitches than usual, which is on par for BFS so don't be alarmed. Stay away from the internet.
And yes, you're not alone!!!
Just yesterday, one of my toes was twitching like crazy, wagging back and forth (and I didn't even notice it) and then it would cramp up terribly. This made me smile. Why? because a year ago it would've made me cry and ruin my entire day. Instead, I just looked at it and thought "Yep, that's BFS (or BCFS) for you!" Prayers and happy thoughts to you, that you will soon see the light at the end of the tunnel and accept that what you have is benign.
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Re: This is ruining my daily life

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