Fully recovered BFSer here. Moderator, pinned posts?

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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Fully recovered BFSer here. Moderator, pinned posts?

Postby Rainyjane on July 12th, 2016, 6:38 am


I come on here once every year or so to give people an idea of my course with BFs and maybe some hope. I was just thinking I wouldn't have to do that if my post was pinned at the top of the group with all of us who have recovered and our experiences. It's just a thought, and it would give people hope! I can't type too much as I currently have tendinitis! But briefly...

About 14 years ago, I broke out in twitches all over my body...all at on once! The first couple years were hell. The third year wasn't sheer hell but was awful, started to slow down a bit, especially when I tried to get on with my life. After about three, four years maybe I could finally lie on the couch and watch TV with a modicum of peace. But they didn't let up and were still there in varying degrees of badness for a few more years after that. It was like the stock market. It went up and down. After the fifth year, it was a lot , lot better but still there. A neurologist friend I knew said the course was about ten years. I'd say I had them for about 11 years till I felt fully healed. I don't get twitches anymore, only maybe the very odd one. I do need to stay off forums like this, though! :) Mine was due to hypochondria and anxiety, I believe. I want to tell everyone, they DO AND CAN go away, and you CAN get through this. When I first got twitches, I had to go to the library to find out more! There was a forum but it was all doom and gloom, and no one seemed to get better! (Except this one lady who had plasma taken, had donated blood, just FYI.)

Here's some things that helped me a lot-

EMERGENCY measure: sitting on the floor of the shower with the drops going all over you!

Valium, 10mg on an empty stomach! (Careful, I think this stuff slightly affected my memory a bit. But I'm ok.)
VERY HOT baths where you can barely get in them.
GOing on about your life and being active, not thinking about it and NOT going in forums. (I know this is REALLY, really hard!!)

Ok, I will leave this here, and I hope there will be a pinned post with all of us who have recovered! Maybe there is already, so apologies if so!! I don't look around too much on here.

Hugs to you ALL. HANG IN THERE. Be brave. You can make it!!! Xxxxxxx
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Joined: February 26th, 2013, 8:29 pm

Fully recovered BFSer here. Moderator, pinned posts?



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