Just to share some experiences...

Information about how to manage or reduce the severity of BFS symptoms

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Just to share some experiences...

Postby Ritch on July 16th, 2004, 1:54 pm

Hi, I started twitching in February. It started with the left thumb. After a week of 10 twitches a day I got worried, did some research on the web and then panicked! Then I remembered that I had hurt my hands while doing some axe work and I thought I had damaged a tendon (a novel cause of BFS!) because it felt as if there was a battle going on in my thumb. The muscle wanted the thumb to move but something else didn't. Eventually, I tried not to use my thumb while typing and it seemed to calm down. I was quite relieved but kind of aware that I was starting to notice other things as well. I watched "The Passion of Christ" with twitches all over my body and I started to panic again. Then it seemed to calm down although I still felt twitches regularly but thought maybe I am just noticing my pulse. Then we went on holiday and I tried to forget it although I often saw my knee twitching. Then on the last day my index finger in my right hand twitched and I engaged panic mode again. By the time we got off the flight I was into the twitches all over every 5 seconds again and was struggling to find a positive explanation. (I'd banned myself from reading the internet by this stage). So I went to the Doctor's, had some blood work done and eventually got a referral to a neurologist. In the meantime, I had found your site and realised that there were other possibilities. So now after six months, two EEGs, two EMG's and a lumber puncture I can now join the ranks of the BFS sufferers and lo and behold, I am not twitching so much anymore! And I've suffered six months of unnecessary panic. I wish I'd found this site sooner.
Ritch
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Postby puggriffey on July 17th, 2004, 9:08 am

Ritch-

I think it great advice to just remind you to be aware that, despite all of the great test results (congratulations!!) and the improvement you've made, be strong if/when this all comes storming back. This BFS stuff is not simple to get past, and in many cases can come and go for a very long time. So often I've seen folks who really struggle when they have their first "relapse" after a period of reduced symptoms and lower stress levels.

With much of this associated to our anxiety and response to unknown actions our body is taking, preparation and reducing the guesswork associated with this is a good thing. Tell yourself that this may get bad again, and that you are ready for it - that will help greatly if/when it does.

JG
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Postby Ritch on July 18th, 2004, 1:21 am

Thanks for the advice. When the twitching started and then was happening all over the place it was very hard to think that something unpleasantly neurological wasn't causing it. Now, thanks to all the tests, and after reading other people's experiences it is quite clear that there is an innocent explanantion for muscle twitching.
I always felt I could live with the twitching - the anxiety was causing me the problems. It seems like that is fairly normal. Now I can feel a twitch without needing to worry so I think I will be alright. If I am worried in six months time I am fairly sure it will be about something else!

Ritch
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