BFS I believe for over 20 yrs

Information about how to manage or reduce the severity of BFS symptoms

Moderators: JohnV, Arron, garym

BFS I believe for over 20 yrs

Postby liisa on April 1st, 2012, 2:45 am

Hello all. I think I was here back in 2005 but havent been back since. I believe I have had BFS symptoms for over 20yrs. Please read my story and comment.

In my 20s I had first symptoms. It was when my babies were less than 2yrs. So I dont know if triggered by a virus or by having kids?? They are now 21yrs and 19yrs. So its been alot of years of symptoms.

At first was just twitching in calves and feet. Not much to annoy me. I ignored it. Then started getting hot spots in knee area. More like annoying thumping. It would last a week or so then go away. It would resurface from time to time like flare ups. I did ask my dr. She thought it was nothing. Likely stress and anxiety. I said ok and ignored it. Then it got to be like twitching anywhere.. my legs, feet, arms, face, abdomen, back, inside my ears, eyelids. It would annoy me alot when the flare ups happened. I saw a neuro. He did an EMG, He saw some twitches but said it was benign. Though the term BFS was never used He probably didnt know about it. He said nothing to do about it.

A few yrs later I saw a different neuro. She was very nice and suggested dilantin. I tried for a few months but with no reduction in twitching. So I stopped it. I had another child and the twitches continued. I saw another neuro. He suggested tonic water. I knew that was useless idea. I never had cramping. just twitches.

Over the years more symptoms have occurred. I have nerve type shapr, shooting pains that come and go. Again like flare ups. They hurt!! I was given neurontin. I still take it. It can help the pain but not the twitches. I was also given clonazepam, at my asking. They kept thinking it was restless legs syndrome. But I dont believe that is so. I was even given mirapex for RLS and gave it up after awhile of no difference in symptoms.

I pretty much just put up with it. This past few months have shaking sensations in my arm or leg. For no reason, sort of like a tremor. It is short lived but does recurr, again like a flare up. I also have a rumbling sensation in a large muscle, like the thigh. You can see the leg move with the rumbling. It is intermittent.

So I do feel a progression of symptoms, all neuro-related, But very little cramping, no weakness. Mostly twitching, shooting nerve pains, buzzing, rumbling, tremors (?).

What do you alol think? BFS??

And what do you suggest? I am seeing a new neuro next month. One last ditch effort to find something that will help the symptoms. I dont worry I have anything serious. I never have. I just want everything to calm down. Its been over 20yrs and am sick of it. Yes, you can live with it, even forget about it at times, but during the flare ups is very distressing. I also dont like how I seem to develop new symptoms over the years.

Thank you so much.

New Member
New Member
Posts: 4
Joined: July 10th, 2005, 11:17 pm

Re: BFS I believe for over 20 yrs

Postby bobajojo on April 1st, 2012, 6:47 am

Lisa, thank you for coming back on here to check in. I've only had BFS for 10 months but your symptoms sound very much like BFS to me. Without chronic pain, I doubt its any sort of neuropathy. I'm like you... most of my symptoms are twitching but I do get buzzing and vibrating as well with occasional aching and shooting pains. But 95% twitching. Without any weakness, I'm sure your new neurologist will tell you its BFS. I don't have the magic cure unfortunately. I'm just putting up with it as well. As I laid in bed this morning, I had rapid fire twitching going off everywhere. So annoying! -Matt
Over 10 billion twitches since May 2011.
User avatar
Posts: 1014
Joined: July 1st, 2011, 6:41 am

Re: BFS I believe for over 20 yrs



Return to Symptom Management

Who is online

Users browsing this forum: No registered users and 5 guests