The Psychosomatic Aspect

[pdodge715]

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!

[pdodge715]

Just realized I got censored... FYI That *beep* was a synonym of over-confident derived from a word for rooster...

[Seepi27]

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?

Yes, such setbacks happen regularly. Everything is idyllic for an hour or two and then suddenly the slightest twinge occurs and sh*t starts falling from the sky. It's the nature of anxiety, which is a beast who will let you have a day off every now and again, but who inevitably comes back to bite you in the backside even harder than before.

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."

You need to do whatever you think you need to do to allay your fears and quell your anxiety, but with one clean EMG under your belt, another seems redundant.

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 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!

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.

[MarioMangler]

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.

In fact I have heard people say that coming back to aboutbfs.com after a hiatus can actually trigger physical reactions in their bodies. Like even if they aren't scared anymore, they get scared just by opening that main page and seeing all the forum topics. They get scared because their brains and bodies have formed an association with this place (aboutbfs=fear), and once you hit the trigger of seeing the site again it sets off all your old stress chemicals and irrational thought processes. And you can't even do anything about it, your body is just triggered by this place.

So again, yeah. You have to take a break away from all medical websites and from the BFS world in general. You just have to. There is no way to recover if you don't do that.

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.

One thing that they beat into your head over and over at The Anxiety Centre is that recovering from anxiey is not a linear process. It will always be two steps forward, one step back. So remember that, and don't beat yourself up when you have a setback. It happens to the best of us. Just remember to take the two steps forward afterwards because that is where the recovery begins.

[mwagner]

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.

[LApea]

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.

Co-sign all of this.

[jpbw]

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.

Agree Agree Agree. Having recently been berated for trying to encourage someone to breaking away from the 'reassurance cycle' its refreshing to see that others share my view point. I get it, we are all scared of ALS, if we talk about cancer enough, we'll all get scared of cancer too. I see recovery as being similar to recovering from an alcohol addiction. A recovering alcoholic, who's still fragile, does not spend all day sitting in a bar, they stay as far away from the bar as possible.....

[Seepi27]

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.

Mario wrote

Yeah I would actually second this, and I don't think it is a hugely unpopular opinion at all.

You'd be surprised. In some quarters, the idea that people should avoid health boards and chat rooms is *very* unpopular. Indeed, when I recently advised someone - quite tactfully, I believe - to avoid these places, I was accused of 'playing God', and told that I had no right to tell people what they should or shouldn't do. Which of course isn't what I was doing at all. If people want to visit these places for constant reassurance - which, of course, is not really reassurance at all in the long term - then who am I to stop them? Besides, I doubt whether a post made by a total stranger could ever make *anyone* do something that they instinctively didn't want to do.

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.

I couldn't agree more. I had the same issue with a benzo board I used to visit. It was indeed a godsend at first, with lots of information about the possible side-effects one might expect from withdrawal. But gradually it became a toxic dump filled with people who had nothing better to do with their time than kvetch on endlessly about how they were suffering. In the end, that kind of thing just drags you down and you end up labeling yourself and, in the process, reducing your identity to that of a 'benzo withdrawal sufferer' and nothing more. I left the BFS chat room for a whole range of reasons, but one of them was because I didn't want it to become a major part of my life - which in fact it *was* becoming - and I certainly didn't want to see myself as just another 'BFSer' among a groups of 'BFSers'.

Anyway, Mario, your post was excellent and I agree with it wholeheartedly. I just wish more people did.

[jerry2]

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.

Co-sign here also.

[mommylondon]

http://www.youtube.com/watch?v=7KtAgAMzaeg

[jpbw]

Great point leanne

"Making your way in the world today takes everything you've got.
Taking a break from all your worries, sure would help a lot.

Wouldn't you like to get away? "

I agree - getting away from it all, chat, boards, forums is key to moving on.

[mommylondon]

Yeah Jon...ur rite...lets all pick up and move on so there is nobody for the newbies to talk to or relate to when their BFS first starts and they are clueless to what is going on...That sounds like a great idea.

[jpbw]

"Newbies" or People that are just starting to notice or feel the effects of fasciculation's and their accompanying symptoms, are not left wondering whether the symptoms that they are experiencing are malignant or benign. There is a lot of information on the boards already. BFS in a nutsell, Why you don't have ALS parts 1 and 2. Hanging around and absorbing other peoples fears and extending the anxiety/reassurance cycle is what I am advocating. I believe in a former post, you yourself announced on occasion that you were leaving for this reason, so I'm sure that you are at least able to appreciate this view point. I'm sure that you feel that this is an attack on the chat room that you set up and an attack on those that donate to keep it running, it's not. Simply a point of view.

[mommylondon]

You are wrong..I dont feel attacked..I feel concern is all...Concern for people like how you were when you first joined...thats all.

[jpbw]

Yes concern, the same concern that I have that people will absorb other fears, just like I did. I have no doubt that you are concerned for those just starting off with BFS, the same way I get concerned for people when I read about their need for constant reassurance. I see reassurance as an addiction. You see it that people need to know themselves when they do not need reassurance any more, two different view points, that's all.