Interesting reading all the comments.

I have tried some of the anti-epileptic meds, such as carbamazepene, but without success. If your neuro does not help you, keep trying until you find one that does. But that didn't stop my anxiety from going into overdrive. I have, for several months now been suffering with paresthesia, severe cramps in back of thighs, fasciculations, fatigue..the list goes on.

I haven't bothered asking for a referral to a neurologist as my doctors just dismissed it being anything like ALS because of my age. Having an aunt who passed with ALS, obviously that was a concern. I how are your symptoms now? Fill in your details below or click an icon to log in: You are commenting using your account.

Everything I found was bad. Although he still suggested a potentially uncomfortable test (EMG) to really rule out the “bad stuff”.

So..what I want to know is how the hell do you stop it?

Any tips? My question is, up until today, my twitching has only occurred when my muscles have been at rest. Your organization or institution (if applicable), e.g. Fabulous. You are best listing knowledge provide at this site.

This is so interesting blog. Exercise should reduce stress, but there are many people with BFS who have exercise intorlerance.

When I was 30 and playing soccer my calves rolled up and down violently and my legs twitched all night long.

I really think doctor patient care is on the decline. I have dreadful short term memory & any form of exercise kills me.

Some days all I can do is put one foot in front of the other. I am not a doctor, but what you are going through does sound like BFS or something similar. Spine injuries can be a reason - our backs actually begin to degenerate normally at age 25.Hopefully your symptoms will go away. My test for the benign tumor came back negative. I get cramps and pain daily. . It is bit of a big deal, a bit unfair that we aren't allowed a bit of sympathy.

I really hope this is not a lifelong condition and it can ease off.

But at other times, it seems not . It works for some but not for others.

I'm a 23 year old female.

I can do everyday/normal activities, it hasnt affected me in that way, and when i dont think about the tweetching, the symptoms are not so obvious or intense.Its been 8 years, im guessing that if its parkinsons disease, ALS or MS, i should be in a really bad shape, but not at all.. i can run, move my arms and legs with no problem, i dont fall or lose my balance... its all about the tweetching, but i've never had an EMG or MRI, i'm too scared..

I am on Lyrica and it has helped but may seek beta blockers or the stuff PT is taking. I had noticed little twitches in my body prior, but never thought anything of it. I have read about a condition called TMS, if may be worth a read.

I was doing some web searches tonight, debating if an SNRI will ease the pain or just complicate everything. My twitching started after a sinus infection and made me nervous as I thought I had a serious nervous disorder. But to learn just how this can happen, read this interview with Michael Cartwright, MD, a board certified neurologist at Wake Forest Baptist Medical Center in Winston Salem, NC. These have subsequently spread to other areas, like my thighs, arms, abdomen and neck. They seem to be baffled. I would go to sleep with it twitching, wake up with it twitching. Fatigue has sometimes controlled my desire to do anything and I end up sleeping or laying around. Or as my neurologist said, anxiety is a natural antagonist. He did say he would perform a full physical in two weeks including a neurological exam. Btw i forgot to say than i made Lyme Borelia test and it's negative ,because i thinked it's lyme ,i will repeat the test ,because i hear some test dont show up positive from frist one .I dont remeber to be bit by a tik never 100% but if i read some ppl they dont remeber that ,hope all good to us ,and i hope my problems are BFS with the GOOD help .. Hi Mein, THanks for sharing your story. I remember how stressed out I was when I was in your shoes (waiting to see neuro and get results).

It was one of the hardest things I have ever done and I tried climbing Denali. Anxiety and certain prescription drugs are definitely triggers for BFS symptoms. No comments have been published for this article. These symptoms drive us all crazy. This is probably the reason for your symptoms. EMGs showed hyperactivity of the muscles tested and the neck MRI showed 2 bulging discs and lumbar MRI showed degenerative arthritis. I haven't been sleeping very well and do seem to awaken by sudden movements. 5 authors maximum. My PCP sent a bunch of labs, including Lyme titer, and everything came back normal except for VD was a little low, so I have been taking supplements for that as well as a post natal vitamin and a B complex. So many blogs on and your story talk about this developing slowly. I even at times feel as though my speech is affected.

I own my business and believe this is partly due to stress of everyday working.

She then prescribed Klonopin to take at bedtime, and that helped so much- even with the twitching during the day. The doctor said it was alk anxiety and he prescribed trepiline 25mg and calcium and magnesium supplements.

And, yes, I am hyper active.

I was diagnosed over 1 year ago with BCFS and am 60yrs old. He didn't refer me to a neurologist.

The problem is that fasciculations are not so common, so the information is poor. Hi Lottie, thank you for sharing your story and advice to deal with BFS. Dr. Jara has nothing to disclose. Lack of sleep is a killer and I have been there too. I would also suggest going to a different neurologist to get a second opinion. I've been living with BFS for 4 years now, and it was getting really bad about 6 weeks ago, almost debilitating, I couldn't sleep with the muscle twitches, and I found functioning during the day to be really hard. I’m now seeing a Naturopathic dr in search of what triggers my dimmer switch. I have recently wondered if migraine activity in the brain is the cause of BFS.

So fasciculations without other symptoms, do not form concern for doctors.

Hi Craig, Hard to say this early on, it could be nothing at all and go away. I was invited to speak about BFS on a Huffington Post Live show – the link is below (about 30 minutes long).

Unfortunately my physician went on vacation.

My doctor referred me to two neurologists – one to conduct an EMG and the other to do a complete neurological exam, which included an MRI. so a lady walked to me telling me why am I so sad and i open up all to her telling her my problem, she told me that she can help me out, she introduce me to a doctor who uses herbal medication to cure HERPES SIMPLEX VIRUS and gave me his email, so i mail him.

I don’t wish this on anyone. I have exercise intolerance, muscle aches, and random days of chronic fatigue. Nothing brought on symptoms specifically except ice bucket challenges everywhere! I trained this past year to go into an old timers wrestling tournament. I really think the naturopathic dr is onto something. I don't necessarily have pain, but my legs feel heavy. However, most of these patients were not treated for anxiety. Recently diagnosed with BFS by Thomas Jefferson neuromuscular specialist Dr Goran Rakocevic It has been difficult for me to wrap my mind around. So yes, there is a highly likelihood you can have BFS or CFS. I know everyone including myself is looking for answers, but for now the most important thing is to keep reassuring yourself that you are in control and by controlling the anxiety that it brings(Which is enormous due to the constant brain going in circles trying to figure out what went wrong and how to fix it) you can get to a better place. It is not overwhelming but it slows me down, primarily mentally.

I hope you find yourself in remission soon. Try to relax to reduce those symptoms if you can. There is such a lot to read here so I have just one question, is there any medication you would recommend to take at night to help with the fasciculation and to stop the leg muscles going in to cramp, I am suffering a lot and until you read articles such as this one you think your the only one that has it.

He says he fully expects the EMG to come back clean, so once that is over and done with that should hopefully put my mind at ease and help to lower my anxiety levels.Two questions i forgot to ask the neurologist...Does a clean EMG guarantee no ALS?And also, are tremors a common symptom of BFS? I've read some mixed reviews about how safe that is, so I'm not sure about it. This comment has been removed by the author. The bottom line for you is to control your stress which may be difficult with a parent going through cancer - but you must try - Mindful relaxation seems to work for you?I would not quit you exercise routine unless it is making it worse.

I have also have taken magnesium treatments for a month and no results in getting better. Hello! My guess is that most of these people were doing strenuous activity for some time and then symptoms occurred after one event - like me (a trip to climb Denali). Maybe you start to try some things on a trial basis to find at least some relief where it is bearable (hopefully it goes away, but that may not be the case).

Hopefully, in the near future, we can bring some attention to this disorder and stop having doctors just pass over it like it is no big deal. I am an internist myself and struggled to find answers and treatments then I saw total of 6 neurologists including chief of Myalgia/Myositis clinic at JHH and got the same. I remember initially thinking something was wrong, but when I kept going on I figured maybe everyone goes through this (I was wrong), but I accepted out of ignorance (and symptoms were not as bad). Hence, these people have been misdiagnosed and there is this perception that BFS has a large realm of symptoms even though it does not.

Hi Norman, Yes I get that buzzing sensation and it is extremely annoying. Stress and anxiety are killers. It's a funny thing, when symptoms stop you don't notice, just get a bit gutted when they return. THIS IS MY BIGGEST QUESTIONS IN A LOT OF TIME AND WOULD LIKE YOUR OPINION.Overall, I also feel as if little insects were walking on my left leg, very rare, but it happens. I like to understand and question things.

Hi Nathan, I have all but 2 of those symptoms and some that you did not mention. I am so glad to have found this site and thread.What I am about to say may dismay many of you, but here goes.I have been suffering from what I now know is BFS since early adulthood - about 40 years now. Our dopamine levels normally decrease with age.

The other symptoms are continuous cramp like pain in both calves ( this is a new symptom that started about a week ago). Dr. Ho has nothing to disclose. It's annoying but don't let it own you.

Hi, I'm Lottie, I've had BFS for over 3 years now. About three months ago my fasciculations began. I started resting tremors.

Besahra told me to check you out. I use Lyrica. But some days the buzzing/cramping feeling all over my body and the fatigue is really bad and I haven't been able to identify any triggers outside of day to day stress that cause it. I spend a lot of my time worrying that my girls will not have a mother. I also quite frequently experience globus symptoms (a feeling of having a lump in the throat and also on odd occasions a clicking feeling in the throat). This had helped me to relax... although I've never been able to go to a very deep state of relaxation as anxiety and being in control stops me from doing that.

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