12 Years of Unrelenting Twitching

[AlisonWright]

Hi Ed. I have been twitching for 12 years straight, and over the last two years I have begun to get charlie horses in my calves, cramping in my foot, and stiff, sore muscles virtually all the time now. Stiffness and soreness in my neck especially.

I have BCFS, benign *cramp* fasiculation syndrome. My joints click and snap.

The strangest thing about this illness is that you feel like your body is degenerating but it apparently is not.

Take care, Blessings, Viv-

 

[Jackie]

Hi Ed,

Thank you SO much for posting! For me it is very reasurring to read posts like yours.

I have been twithcing for about 14 months now. No cramps though ( not yet anyway ) .

I have one question for you. Do you have pins and needles sensations as well? I feel this everyday in different parts of the body and it worries me sick.

Thank you for answering.

all the best to you.
Joanna

 

[MarioMasher]

Bumping another helpful post from back in 2005. This guy sums up BFS about as well as anyone can. It is, and always will be, benign.

 

[Alonzo]

Hi Ed, I wanted to thank you for coming back and giving such a nice update with your 20 years of BFS. I also wanted to answer you on your question about the onset of cramps. As you know, I have had this stuff for about 10 years. My case seems to be more on the extreme side comapred to most with very pronounced symptoms, not just twitching but jumps, bumps, thumps, tremors, shakes (both internal and external), hot spots, fatigue, buzzing, rubbery legs, exercise intolerance, etc. You name it, I've had it at one time or another at varying intinsities and varying frequency. It goes away sometimes, and other times it comes back with a vengence. I am not afraid of it anymore because I know the facts about BFS, but it is annoying at times. The "cure" is to not let it bother you and to be able to get on with your life and not let BFS run it for you. Sounds liek you know that already though I just started getting cramps in my calves, In fact, I just started twitching in my calves this year. I used to twitch everywhere, but almost never in my calves, even though calf twitching is THE most common place people twitch. With that, mine started this year too and soon after I started to get cramps. I especially get cramps if I flex my toes or extend my feet and ankles. It's produces an immediate cramp.The one thing to remember is, cramps are common with BFS and there are some cases of BFS turning into BCFS, where cramps are more common. Still both benign, one just has a little more pain associated with it than the other. Anyway, my point is, you aren't alone. I too am experiencing this. I just wanted to share that with you.Glad to hear you are doing great after 20 years of this stuff, not that I ever thought you wouldn't be. No one has had BFS develop into anything other than BFS. The new Mayo BFS study confirms that to the full extent and backs up everything we have been saying all along on this site.Have a good one!Alonzo

 

[BuzzLightyear]

In retrospect,I think I was having early symptoms with random twitches, for several years. 1 year ago the heavy twitches, buzzing, then a couple months later rippling (myokemia) muscles, shakes and jerks set in. One of the most interesting was the firing of my stapedius muscle in my middle ear producing a drumming sound. I had to think about it for several minutes to realize what was happening. I am curious if anyone else has had that experience? Anyway, at 8 months I realized after meeting with neuro and the fact that I wasn't getting weak, this was not a progressive motor neuron disorder. I'm still bothered by the (to say the least) the annoyance--for instance I woke up last night due to hard contractions in my right hamstring. But for the BFS----I've accepted it and am very intent on enjoying life. I have found that rest, eating well, sleep, etc, improves, but does not eliminate the symptoms. I've also accepted "the cure" of "not letting it bother me" and purchased a book on mindfulness meditation on my Kindle (at 2 AM after being awakened by the jerking). I'm experimenting with a ketogenic diet which seems to be helping (but not eliminating) some of the symptoms. I'll keep you updated on that and the meditation. I have resumed exercising, and will continue to exercise in spite of the post exercise fasciculations, etc it invariably leads to. I feel pretty good and am getting my head back on straight after the 1st 8 months of unrelenting worry. To all of my of newly diagnosed fellow BFS people--if you've had twitching, etc for a year without weakness and your EMG's are clean, you're OK. I've seen to many cases of ALS in Rehab. It does not progress month after month with twitching. I know, from a clinicians standpoint, what it does. It begins insidiously and then hammers you with unrelenting clinical weakness. Feel free to worry about the annoying twitching, buzzing, etc, but ease your minds. You do not have LMN disease.

 

[GlitterFountain]

Buzzmike,I experienced the ear thing you described before I was on medication. I think it's called ear myoclonus. I remember it really got one neurologist's attention when I said "I hear it in my ears." His advice was to try the different anti-seizure medicines and see what works. Terri