Explaining BFS to Others

[Genny]

How do you guys explain to other people what you are going through?I don't talk about it a lot, I just keep on twitching. Almost no one understands what it means to live with BFS.How do you guys handle this?

 

[JohnnyRocket]

I only told a few people about my BFS when I was going through the roughest of times. Since then I tell people if it just happens to come up for whatever reason, but I don't talk about it for the most part. If I weren't constantly coming to this forum, BFS would never even cross my mind so telling others about it doesn't often cross my mind either.

 

[garymills]

i just tell people i have a "rare" nerve and muscle disorder that is benign.....when they ask what, i just say my muscle twitch and cramp and it is a real pain but not gonna kill me. usually at that point, the conversation moves to something else.

 

[Genny]

For me it's more difficult in the periods that I have hotspots.But do you guys also experience that people really don't understand, and look at you like your telling something weird?

 

[MarioMasher]

Well that's the thing. You are telling them something weird. BFS is a bizarre condition. I just assume no one is going to understand and I don't really care if they do understand. It's my BFS, not theirs.

 

[SecretAgent007]

When I explain to people what I went through with BFS, I explain it to them pretty much like this:"Have you ever had a random muscle in your body twitch or very quickly and subtly move? It's usually just a quick little flinch and nobody looking at you would be able to tell that it happened. (Usually the answer is 'yes') Well, I had that going on randomly throughout my body 24/7, sometimes once every few seconds, and any muscle in my body was fair game. I was scared to death initially that I had MS, Parkinsons, or even worse but all the doctors and neurologists I saw ruled all of those out and told me it was benign."Usually people are very understanding even if they can't really relate, but I think everybody knows what it's like to have a twitch. I sometimes go into detail to talk about the extreme anxiety I had as well as some of the other odd symptoms, but I usually only do that if it is relevant to the conversation. I usually tell people about it when I am telling them how I came to appreciate alternative medicine. Other than that, this is all history for me.

 

[antThatGuyWithNoName]

I don't bring it up. I don't really expect them to understand the extreme level of anxiety (I wouldn't wish that on anyone) that came with BFS for me. When I was at my worst it felt like nobody understood (that's what is so valuable about this community...we understand). Since then, it's come up casually before but I don't go into much detail. For the most part I'm like johnny. BFS doesn't run my life and I go days without it crossing my mind.

 

[Genny]

I never had all this anxiety.How can BFS not cross your mind when you twitch on 8 places per minute?Even than?PS I only feel the need to talk about it when I have incredible hotspots, but most of my friends don't realize or know. But sometimes, it's even too hard for me, who has been living with it for already 25 years. I am véry used to living with it though, but on SOME days, it drives me NUTS.

 

[Gracer]

as far as I remember, I was used to say I have somatic disorder mimicking a bit some neurological issues. And that this si a stress disease so I may behave strange or have strange isuues.Usually I had to explain that to my customers becasue due to pain in hands I can not do so much work as usually.