Benign Fasciculation Syndrome: Annoying and Alarming

[luckyandy]

I hate the name Benign Fasciculation Syndrome. (No offense to this forum intended)To me the name down plays how annoying, bothersome, strange, and scary this phenomenon is.....I know "Benign" in BFS refers to "non-fatal" but to me in general the term Benign means "it's nothing." And at least in my case, this is not nothing.I know that something is wrong with my body, nerves, etc. I twitch 100+ times a minute in my calves and feet and have random twitches all over. My legs are a sea of movement all day long. My legs are tired, heavy, sore all the time.I kind of like the term Peripheral Nerve Hyperexcitability (PNH) a little better.... it seems to describe what I'm feeling and seeing better than Benign Fasciculations ....It would seem like if I told someone about my twitching it would be easier to say that I have muscle fasciculations due to peripheral nerve hyperexcitability as opposed to saying that I have fasciculations due to benign fasciculations syndrome. To me if you put Benign with anything it just makes it seem like it's nothing....It is kind of like calling chronic migraines "benign headaches"Or calling a broken leg "benign skeletal adjustment"etc., etc., etc.Anybody got a better name for this crap?

 

[garymills]

there is an old post about what we should call our syndrome....I didn't take the time to find it ,I believe i suggested BSBFS (bull sh_it it's benign, fasciculation syndrome).Take care,Gary

 

[jcrissmanX]

I like BFS. As long as it doesn't stop me from walking or living I'm happy to be reminded it's benign no matter how bad the twitching gets.

 

[mommyLDN]

The twitches dont slow me down any, its the muscle pain/stiffness that do. The freaky sensory garbage effects me mentally more than any thing else.I call it the "I want my body back syndrome"

 

[nomad37]

the twitching usually never bothers but I hate sometimes when I get the big ones on my right thigh if you read Aarons post its the same thing I get I dont even know if thats a twitch or spasm but they are one of the worst along with jerks and stiffness. The normal twitches I can live with.

 

[RainCat]

My neuro said fasciculations in BFS CFS PNH and Neuromyotonia are all benign Only a fasciculation that is caused by motor neurone death is non benign.