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2 year "anniversary" with BFS

PostPosted: December 1st, 2014, 2:45 am
by Aerial
Hi everyone,

I just wanted to start off by saying that finding this site a year and a half ago really made a huge difference in how I approached having BFS. So thank you for sharing your stories and concerns on this site. I have lurked for that long and just realized it was my 2 year anniversary this week.

Mine started about a month after I suffered a head injury that I had to work through. Plus, I was traveling a lot and my job is being physical so I didn't give myself time to heal at all. When the spasms began, naturally I freaked out and suspected it was tied to my head injury. After doing the worst thing possible and googling, I found that three letter acronym for that awful disease that scared the hell out of me. My primary care physician looked at me like I was crazy and instantly identified it as BFS after a questioning. I went to a neurologist, got the MRI's got the EMG and ran the gamut despite his protests.

Suffice it to say, I did not have the 3 letter acronym.

Since then, I have collectively gone through 6 months of such terrible fatigue that I could barely look after my 2 small children. What was also difficult was trying to explain to people exactly what BFS is. I know the majority of us have gone through the furrowed brows and the confused looks when people say "I've never heard of that before". I will be honest when I say that I still have a tough time explaining it to people. I don't tell the whole world-- just people that might notice my fatigue, or if I get irritated with folks just saying "Just take some b12, you'll be fine".

So , I'm glad this site exists and just wanted to ask you guys (and link me to a thread if it already exists): How do you handle telling people about it? What have you said that helps people understand pretty quickly? Because, I just simply tell them everything I've learned. Perhaps there's something you have said that might be better than how I say it lol

Also: how are you all doing? It's nice to meet you :)

Re: 2 year "anniversary" with BFS

PostPosted: December 1st, 2014, 10:34 am
by dolphin8808
Hi Aerial! Great to hear that you got such a clean bill of health, I am in the process now of seeing the Neuro and will get an EMG soon (next month). I am over paying attention to my body right now, everything I do clumsy I think its ***, everything I do if I stumble, I think ***, everything I do if I feel weakness, I think ***.

SO over this stupid fear! I HATE IT. I am in a pit right now and just trying to dig myself out.

Re: 2 year "anniversary" with BFS

PostPosted: December 7th, 2014, 10:51 pm
by Aerial
dolphin8808 wrote:Hi Aerial! Great to hear that you got such a clean bill of health, I am in the process now of seeing the Neuro and will get an EMG soon (next month). I am over paying attention to my body right now, everything I do clumsy I think its ***, everything I do if I stumble, I think ***, everything I do if I feel weakness, I think ***.

SO over this stupid fear! I HATE IT. I am in a pit right now and just trying to dig myself out.


I remember that well :( And, I had to relive it when everyone jumped on the Ice bucket challenge. I swear my spasms would get worse when I worried that it was *** and the anxiety of it all literally made me lose feeling in my legs and of course I thought "This is it! It's ***!" but thankfully I was very wrong and once we figured out it was BFS and I found this site, my spasms got so much better.

I am crossing my fingers that yours isn't serious! I know how awful this process it. Thank goodness we have this site, huh? Keep me posted!