I am new here, still learning!

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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I am new here, still learning!

Postby suzycookyla on September 5th, 2007, 4:02 pm

I just joined this site after reading on it for a couple of monthes. It has been a big help, even just knowing I wasn't the only one going through this awful syndrome.

I began getting tingly fingers at the beginning of Jan 07, 2 weeks later had growing numbness on hands, feet, and side of face, about that time twitching started and grew and grew and grew. I twitch everywhere, sometimes I can go 20 seconds without a twitch but I can also have 60 plus a minute! I had all the tests and don't feel worried it is anything else but bfs. I also have really bad chemical sensitivities and I don't know if toxins are related to it all.

I have tried Neurontin, made my hair fall out, topamax had horrible side effects. Currently the dr. gave me klonopin which works really well, but I am so afraid of addiction that I am not taking it. I am trying electroacupuncture and have noticed less twitching in the area treated for the rest of that day. I am hoping the cumulative effects will make it permanent. Also, I ahve noticed a huge difference in the numbness and twitching when taking a really well absorbed calcium. Just started on Calcium Orotate and it seems to make a BIG difference in the amount of fascics. Oh, I also take ambien when I can't sleep.

I really hate this and so hope to beat it. I am trying to adopt the motto "I have BFS, BFS doesn't have me!" Thanks for sharing all your experiences for all of us to learn from!

Romans 5:3-5 ...we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And HOPE does not disappoint us...
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Postby WitchyTwitchy on September 5th, 2007, 4:19 pm

Wow Susan, I have to say you've only posted once on this board and your positive attitude has given an ol' veteran a lift (had a bad, twtichy day :cry:)!


"Really hate this and so hope to beat it"..... I LIKE THAT! I might use it myself!! :wink:

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Re: I am new here, still learning!

Postby Adamk on June 5th, 2013, 1:01 am

How long have you been on benzos or similar drugs? I am beginning to think all my issues (dizziness that lasted 3 months, tinnitus that comces and goes and now muscle twitching on top of that birthday cake!) started around the time I was prescribed ambien a few years back and I am trying to find others who share similar experiences.
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Re: I am new here, still learning!

Postby SecretAgentMan on June 5th, 2013, 10:37 am

Is your acupuncturist fluent in this field or does he only offer limited services related to Chinese medicine? I'm just curious because I found incredible relief through a culmination of alternative medicine techniques including acupuncture/acupressure. I know no 2 doctors are the same and some are much more familiar and comfortable with certain fields than others. It sounds like you already know through experience that pharmacy drugs are not the answer. Based on the limited success you are already experiencing with acupuncture you may want to look more into some of the alternative areas.
If your mind is your own worst enemy, why not make friends with it and turn it into your greatest ally? Mental discipline is achievable and there is help available. Learn what works for you, practice, and change your life for the better.
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Re: I am new here, still learning!



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