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Benign fasciculation syndrome (BFS)

Brain & Nervous System | Last Active: Apr 14 11:56pm | Replies (358)

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@borkoksg

This comment made me laugh (the last one) to the extent that I created the account just to reply you you.

I’m 38 and for the last 15 years I’ve been “collecting” these conditions that you’re mentioning. All look autoimmune and all are “hopefully” benign. When I was a boy I had (and still have keratosis pillaris, aka chicken skin), Geographic tongue 12y ago (at the time mistaken for nasty fungal infections), alopecia areata (missing patches on the beard), I could start from my scalp and move all the way to my feet and find one of these weird rare conditions on any body part. And now what drove me to this forum is what looks like BFS. 4 months in, same symptoms as yours. Getting a full check up on Wednesday. But I kind of know it’s gonna go down to anxiety and stress. Actually the combination of all the factors that someone mentioned here (which aggravates anxiety) caffeine, Alcohol, bad sleep, and I’ve been battling all of this with some really heavy CrossFit and I guess at some point the body just said, can’t take this anymore...

Hope you find the way to dial down on whatever stressors you have. I’m thinking of committing to meditation and like I’ve done for training, be super disciplined at daily practice, plus cut out all the shit I swallow. I’ve read across many forums that prognosis (if it’s BFS) is good to great and that people have recovered as soon as they have been able to (really) change their lifestyle. It’ll be hard for me. But Beats twitching the whole bloody day.

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Replies to "This comment made me laugh (the last one) to the extent that I created the account..."

Hello @borkoksg, Welcome to Connect and especially for joining just so that you could reply with some helpful information and a suggestion. It helps to know there are others out there that are collectors of many different autoimmune conditions. You mentioned you are thinking of committing to meditation. There are a few other discussions on Connect you may be interested in reading to learn what others have shared. Also there is an excellent Mayo Clinic Newsfeed article on practicing mindfulness you may be interested in reading.

Meditation For Anxiety: https://connect.mayoclinic.org/discussion/meditation-for-anxiety/
Do you meditate? And does it help?: https://connect.mayoclinic.org/discussion/do-you-meditate-and-does-it-help/
Practicing Mindfulness: 15 Tips on Meditation Practice: https://connect.mayoclinic.org/page/mindfulness-in-health/newsfeed-post/15-practical-tips-on-mindfulness-meditation/

What type of meditation have you tried or what helps you the most?

I'm 55 and about 3 months ago, out of the blue, my left bicep and triceps began to twitch vigorously pretty much non-stop for a few days. Began to taper off after about a week, but would start up again and last for hours. Was waking me up and making it difficult to focus. Spoke to my PCP and she ordered a bunch of blood work to rule out something simple. Everything came back "normal" which was surprising to me.

Went to a neurologist and have to say when I was sitting in the waiting room I was in full panic attack mode (BTW, I am considered to have panic attacks after a bout of cardiac issues a few years ago that turned out to be caused by hyper-functioning thyroid), heart rate was off the charts, BP was extremely elevated, and I was sweating profusely. Could barely speak when I got to the exam room as I was sure I had ALS. Neurologist performed a pretty thorough physical exam and gave me the same diagnosis as many have stated above: no signs of weakness, atrophy, or any other obvious issues. Probably anxiety (prescribed an SSRI), could be BFS, and suggested an EMG/NCV exam. Felt better immediately after the exam. The SSRI makes me have other weird sensations, but in combination with meditation and mindfulness, has helped a lot. EMG/NCV results came back normal (actual statement was "perfect") and was sent away with suspicion of GAD/Panic attacks and scheduled a follow up for December.

A week after the EMG I sprained my left wrist, got some cortisone shots, and told to wear a splint for ~ 8 weeks. Forearm muscle shrunk a bit (as it has been immobilized by the splint) which triggered "atrophy" in my mind. Twitches came back with a vengeance all over my body. Arms and legs feel week, pain/discomfort that doesn't respond to NSAIDs, and I just feel terrible. Interestingly, when I am busy doing something I don't notice any twitches or discomfort - when I stop and look at my arm everything starts up again.

I am a true believer that anxiety and stress is a major factor. I strongly encourage everyone with symptoms to pursue testing with a healthcare provider, but in addition to many of the things mentioned here, good mental health practices are important. Mindfulness and cognitive behavior therapy are very helpful. Once you get answers from a physician who has done due diligence, it is importnat work to accept the diagnosis and come to believe what you have been told. If you truly have a condition, it will continue to manifest itself. However, if it is stress and/or anxiety, controlling that can have a major impact on quality of life. Be an advocate for yourself when you go to the doctor and continue with routine follow ups, but also be an advocate with yourself and remember that most of the most horrible and serious conditions that are associated with fasciculations (e.g., ALS, MS) are also relatively rare. Don't do searches on Google; Dr. Google didn't go to a good medical school. This is easier said than done. If you are going to go on the internet, look for things that can help you feel better. Learn about managing stress and anxiety. If you want to read about conditions, use Google Scholar and get peer-reviewed research papers and read the entire paper.

Finally, be careful with supplements/vitamins/minerals, etc., unless you are followed by a physician and tested regularly. You could end up doing more harm. Prescription drugs are required to disclose potential side effects, most supplements are not, nor are they studied rigorously.