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Benign fasciculation syndrome (BFS)
Brain & Nervous System | Last Active: 2 days ago | Replies (415)Comment receiving replies
@krfreitag
Hi and welcome to Connect. Firstly, please don't get into a headspace where you are thinking you are crazy. You are justifiably annoyed by this, and that is perfectly normal. I'd hold off on spending on further expensive consults with doctors for now. For one thing, the medical community does not know what causes it. Also, they seem to mostly recommend drugs to treat it. Not a great option for something that is not causing nerve pain and is not keeping one from leading a normal life, albeit a less pleasant one.
I understand why you feel anxious about this issue, especially the fact that you can have a twitch in one place for such a long time. I imagine mild BFS is common as I too have had twitches on occasion, but not often and not for more than a few minutes or a half hour at most. I remember one not long ago in the leg while I was in bed at night that went on for about a half hour. Mostly an annoyance in my case, nothing more. For you it's different obviously. I would recommend reading as much literature online and elsewhere as you can. If there is a treatment out there somewhere you are more likely to find it yourself than hear it from your average medical practitioner because the conventional wisdom is there is no cure. Also, involve yourself with others who have similar experiences with BFS such as people here on Connect. Look on the bright side: one thing to be grateful for is the absence of nerve pain w.r.t. this condition.
I hope this issue subsides for you. I do understand that it feels like it's driving you crazy at times. Hang in there, look for ways to calm yourself and for ways to take your mind of of the twitching if you can. One thing I just thought of: many people are doing MFR (myofascial release) these days for numerous health issues. Perhaps look into that (there is a discussion about it here on Connect). And do interact with people here, they are a good and knowledgeable bunch. Best, Hank
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I’m so glad to have found this thread. I have what feels like bolts of electricity, tingling and numbness. I took a 30 second video of a tremor in my ankle to show to my new dr when I get an actual appointment. Right now I’ve been waiting a month to get just a telehealth visit.
A little background, I have a history of myoclonus jerks just as I’m falling asleep. I’m a 51 year old female. The jerks started back in my early 20’s.
They prescribed me a new drug at the time-neurontin. Eventually the jerks went away.
Fast forward to last year and the pandemic. My teenager runs away and I haven’t seen him in 10 months. I know where he is (safe with family) but as a single mother it completely wrecked me and still does. Even though I have a therapist (she is online because of Covid) I can’t help but wonder if my tremors/jerks/whatever they are ... is it just stress?
I should add that when they occur they are quite painful. They started in my legs and now they are in hips and thighs, arms and neck.
Back in September 2020 when the twitches started my previous gp prescribed me xanax. I’ve taken them every day since then and I honestly feel they wear off so quickly but without them I would not be able to sleep at all due to the myoclonic jerking.
I also was just diagnosed with a Morton’s neuroma by my podiatrist, not sure if it’s related.
One other thing I have going on... I just got a memory foam mattress and it is horrible, (I’m heavy at the moment (gained 50 pounds during 2020) I sink into the mattress and wake up with a raging backache. I am now sleeping on the floor in the living room until I can invest in yet another mattress.
I am nervous about a couple of things. The first is explaining all this to my new doctor. I don’t want all my symptoms to be chalked up to anxiety yet I also cannot afford tests I may not need. The second is running out of Xanax and going cold turkey as I’ve read it can cause terrible withdrawals.
If you have read this in its entirety, God bless you. I’m really just ready to start feeling better and moving on to enjoy life. Thank you