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!
Navigating Anxiety: Unexpected Roadblocks
- Thread starter mdodge715
- Start date
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.
"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.
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.
I developed BFS about 2.5 years ago. I had lots of symptoms. The initial trigger was a bout of ill health (viral infection) that left me unable to walk (short lived). I had deep anxiety and very short-lived depression (worried about health and my family). I went to private health care to see the UK's leading neurologist expert at King College London who diagnosed BFS. I then finally had an appointment in Liverpool on the National Health system. They diagnosed me with the same. After about 6-12 months I think my BFS gradually went away (cramps, shooting pains, twitching, pain etc). I also took time out from overworking and excercised more to make me break from work as part of the de-stress programme. All going well, right? Cured. Back to normal?After 2 years, the National Health did a standard follow up on me. No problem I thought. Famous last thought! Two weeks before my appointment I started twitching like crazy. The twitching also spread to parts of the body I hadnt had them before (I think this goes back to the first consultation where the neuro said to me "it will be fine unless the twitching spreads". At the time of the follow up appointment I was deepy anxious about the twitching again (irrational) having those negative thoughts I had way back when at the start of my BFS. I know that the thoughts were crazy. Afterthe appointment I started to get really bad leg pains too (downward spiral). It was at that point that I knew I was back at the start again. Road to recovery now ongoing. Pain gone now - just need to heal the rest of the anxiety. Yes, I now know it is psychosomatic based on the timing of symptoms etc. Getting rid of the anxiety/stress/negative thoughts is the key to curing BFS. As voiced by many here, BFS is not going to kill you (apart from driving you mentally insane). BFS seems to just keep the mind occupied trying to avert itself from thinking of the other negative aspects of your life. However, BFS is also in itself a downward spiral. The key is to recognise that you can beat it.