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pdodge715 wrote:This has happened to me a couple times recently, and I'd be willing to bet that more than a few of you can relate...
Do you ever have one of those days where you're feeling pretty good mentally - sure, you're twitching like crazy, but you know you're healthy and life is beautiful - when out of the blue, something happens that sends you spiraling into a fit of anxiety like the day you first googled muscle twitching?
Today, I went to lunch and grabbed a squeeze bottle of ketchup. When I attempted to squeeze some onto my plate, my right arm starts shaking like crazy. I immediately walked back to my office and spent the rest of my lunch break googling on the verge of tears, convinced I had *** like a rookie - despite having both a clean EMG by one neuro and a diagnosis of BFS from another who literally said this to me: "I am 100% positive you do not have ***. You have Benign Fasciculation Syndrome. I'm scheduling a 6 month follow up just because I don't like to be *beep*, but feel free to cancel if you don't want to come in."
Two weeks ago, I logged in here just to check in, only to see some old post about clonus and subsequently spent the next 45 minutes at work shoving my limbs around to see if I had it.
I mean, seriously, I have had 3 Drs (2/3 were neuros) and the greater population of this site tell me I'm fine...why is it so easy to forfeit all progress and revert back to freakout? Can anyone relate to such weak, indulgent behavior? Any tips from the more experienced BFSers to avoid it? My wife and I are expecting our first child in March, and I'd really like to be rid of this obsession by then!
I know this is a hugely unpopular opinion, but maybe it's a good idea to take an extended break from the board, from health forums, from chatrooms and from health websites? Reading about other people's doubts, concerns and complexes makes us absorb fear as if through osmosis. Places like these can be real sources of information and help, but on occasion they can be positively toxic. Your example is a case in point.
Weak and indulgent, perhaps. But I think we're allowed that, to an extent. BFS is not a walk in the park, and we need to make allowances and not beat ourselves up when we have setbacks. At the same time, however, we need to help ourselves, and I think one thing that we can all do is avoid situations in which it's possible that other people's fears and freakouts will affect us negatively. That and try to believe our neuros, of course.
mwagner wrote:I was just talking to a fellow BFSer about this. It's really screwed up. Many of us have anxiety problems to begin with, and this disorder has messed with our heads so badly. I'm almost 15 months into this and have total ups and downs. You would think I'd be completely done with it. All it takes is some weird new symptom, and then I'm right back to being scared. I usually get over it quickly, but it's still plays with my mind psychologically. I hate it.
You're not alone that's for sure.
Two weeks ago, I logged in here just to check in, only to see some old post about clonus and subsequently spent the next 45 minutes at work shoving my limbs around to see if I had it.
I know this is a hugely unpopular opinion, but maybe it's a good idea to take an extended break from the board, from health forums, from chatrooms and from health websites? Reading about other people's doubts, concerns and complexes makes us absorb fear as if through osmosis. Places like these can be real sources of information and help, but on occasion they can be positively toxic. Your example is a case in point.
I know this is a hugely unpopular opinion, but maybe it's a good idea to take an extended break from the board, from health forums, from chatrooms and from health websites? Reading about other people's doubts, concerns and complexes makes us absorb fear as if through osmosis. Places like these can be real sources of information and help, but on occasion they can be positively toxic. Your example is a case in point.
Yeah I would actually second this, and I don't think it is a hugely unpopular opinion at all.
This board can be a godsend to people at first, but after a while you just need to go away. Go far away. Because you don't want to make people with BFS into your peer group. You don't want to think about and talk about and chat about BFS 24 hours a day. The key is to make it an insignificant part of your life. It is for this reason that (I know people are going to hate me saying this) I tell people to stay far away from thagt chatroom. Stay faaaaaaaar away. The people who set it up had the best of intentions, but again, you don't want to make your peer group in life other people who have BFS. That is the absolute worst way to cope with BFS and to eventually recover from it. Let the world outside BFS be your peer group. Let them be your peers. Sticking around others who have it 24 hours a day is never going to do anything for you. All it will do is make you think of yourself as a victim. Which you are not. You are a normal person who can do normal stuff just like everyone else in the world. Don't let BFS become the main part of your life.
mwagner wrote:I was just talking to a fellow BFSer about this. It's really screwed up. Many of us have anxiety problems to begin with, and this disorder has messed with our heads so badly. I'm almost 15 months into this and have total ups and downs. You would think I'd be completely done with it. All it takes is some weird new symptom, and then I'm right back to being scared. I usually get over it quickly, but it's still plays with my mind psychologically. I hate it.
You're not alone that's for sure.
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