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Welcome to BFS Recovery! Can't post yet? Read this.

PostPosted: Sat Apr 20, 2013 11:54 pm
by Administrator
BFS Recovery was established to help people recover from Benign Fasciculation Syndrome and the high levels of anxiety that comes with it.

Membership Benefits:


  • Immediate access to pages of pertinent information on BFS and anxiety
  • Access to the chat room and the ability to talk real-time to fellow BFSers.
  • The ability to chat with an expert in neurology about the condition.
  • Access to a 24 hour BFS hotline


If your account isn't working yet, please click here to activate it.

Re: Welcome to BFS Recovery! Can't post yet? Read this.

PostPosted: Sat May 09, 2015 10:37 pm
by Debbieducati
Hi, I am new to this group. I have had BFS for over 3 years, and am looking for anything that will help relieve the fatigue and pain from constant 24/7 BFS. I also have two other conditions that started first. Interested to see if anyone else is in my shoes. How do I post a question.

Re: Welcome to BFS Recovery! Can't post yet? Read this.

PostPosted: Mon Dec 07, 2015 3:14 pm
by magic
Hello - im new to this site+ thank you for setting it up and letting me join Im in the uk and of course of fasculations which is filling me with anxiety - How do I post a question?

Best regards

Is it this normal For BFS?

PostPosted: Mon Dec 07, 2015 3:55 pm
by magic
Hello All -Im new to this site and have been looking to join and very thankful someone has had the patience to put something like this together - I think I would go insane without the support ive found reading the post here - My Symptoms started 6-8weeks ago in the chin region - A bit like we have experienced around the eye it except it went on for a bit - It happened again and I viewed in a mirror that it was visible - I didn't think anymore about it until one morning about 2 weeks ago I got up early morning to find the web between my index and thumb pulsating and my index actually wagging! - That spooked me - So saw my GP who said would have to refer me to a neuro whom I saw last week - He put me through all sorts of clinical
strenghth test and was obviously satisfied by what he saw but ordered a Blood test, MRI which I had this morning and im waiting for EMG Appointment - The strange thing is I didn't have nearly as many Fasculations when I saw him then has I seem to have developed since my appointment - They seem widespread Calves,feet,shoulders,tums, lips,hands -I do believe I even felt one on my earl lobe! - Im so anxious - I keep thinking is this all my muscles in the dying process ? My neuro said he didn't expect to find anything from the test - But has the situation changed now that they seem to in area of my body - He gave me reassurance that THE DISEASE I DON'T HAVE is a Symptom primarily weakness but I suppose we all think were going to be unlucky until you have everything tested


- Is it normal for Fascualtions to be so frequent and widespread I even experience a buzzing sensation which I didn't notice before and sometimes it feels like a ripple of the muscle - is all this normal? or does it indicate something of a more sinister nature? - Hope someone has had similar to ease my mind - as the worry is driving me crazy - Thank you for reading my gabble but it is very stressful - I read a post earlier by a new member Andrew - Wish I could adopt that attitude!

Best regards

Re: Welcome to BFS Recovery! Can't post yet? Read this.

PostPosted: Mon Dec 07, 2015 6:53 pm
by Chicklette
Hi Magic,

Welcome! You might want to post this on the "My Story" thread instead of under this topic as I am not sure how many people will find it here. If you need help, let me know and I will walk you through how to do it.

And FWIW, widespread fasciculations are very common in BFS. From what I understand, in the more sinister diseases, they tend to be more localized. As far as the "type" of twitch you have ... a twitch is a twitch is a twitch. :) They are all equal in the realm of BFS.

Another word of advice ... listen to your neuro. So many of us are convinced that we have something bad that we don't believe the doctors when they tell us that we are fine. It's a battle we have with ourselves every day. Try not to go down that road.

Take care,
Chicklette :)

Re: Welcome to BFS Recovery! Can't post yet? Read this.

PostPosted: Mon Dec 07, 2015 7:06 pm
by magic
Thank you chicklette

Ive had a few health issues whereby I couldn't take what the professionals were telling me - Maybe im just that sort of person a little OCD - But I will take on board your comments and try to do my best to keep a positive attitude - I tend to be a roller coaster at them moment with dark and light moments - But thank you so much for your response - I will try to post it on my BFS story - your help maybe required

dannynew

PostPosted: Tue Mar 01, 2016 9:56 pm
by Danny
Hello im new to this site ive had facisculations for 8 years i would for it all to go away i have anxiety tablet but i still have them ive never known anyone with this before i thought it was rare

Re: Welcome to BFS Recovery! Can't post yet? Read this.

PostPosted: Wed Mar 02, 2016 1:58 am
by Chicklette
Danny ... You might want to start a new thread. (And it is rare ... This is just a small community of people from all over the world)

Re: Welcome to BFS Recovery! Can't post yet? Read this.

PostPosted: Sun Mar 06, 2016 12:48 pm
by Koos
Hi All
I have had bilateral calf twitching for the last couple of months. Went to my gp he did blood test and checked reflexes every thing came back fine. Blood test was for vitamins and ck levels. Since then I had 2 neuro exams and a ncs and emg. The neuro did a full physical checked strength and reflexes. Told him about both calves twitch so he performed a nerve conduction study and emg on my right calf. After the test he said everything is normal and hundreds of things can cause twitching and i had no neuromuscular problems. Since the emg 3 weeks ago i started experiencing burning sensation in my feet, could this be because of beta blockers i am taking? Does this sound like bfs?

Re: Welcome to BFS Recovery! Can't post yet? Read this.

PostPosted: Sun Mar 06, 2016 12:51 pm
by Koos
Hi All
I have had bilateral calf twitching for the last couple of months. Went to my gp he did blood test and checked reflexes every thing came back fine. Blood test was for vitamins and ck levels. Since then I had 2 neuro exams and a ncs and emg. The neuro did a full physical checked strength and reflexes. Told him about both calves twitch so he performed a nerve conduction study and emg on my right calf. After the test he said everything is normal and hundreds of things can cause twitching and i had no neuromuscular problems. Since the emg 3 weeks ago i started experiencing burning sensation in my feet, could this be because of beta blockers i am taking? Does this sound like bfs?