Benign Fasciculation Disorder - Hopelessness

[Cindy_Louise]

Hi I'm Cindy and I am posting in here because I didn't know where else to post this. I am suffering from what I believe is Benign Fasciculation Disorder. It is an unknown disorder with what looks to be no treatment or no recovery (it will either go away, or it won't). It's a 'harmless' disorder that consists of twitching of the muscles 24/7. It might not be considered harmful but it is mentally draining, annoying and prevents me from sleeping at night with non-stop twitching.

I've had this for 7 weeks now, insidious onset. No idea why it started. Doctors can't help me. I've had blood tests and my blood levels are fine. I am not Magnesium or other minerals deficient. They don't think it's MS or ALS. They say I'm 100% healthy. Doctors perscribe muscle relaxants to 'stop' the twitching at night but I'd rather not take them as they cause addiction, depression and other unwanted side affects.

I have no idea if Anxiety, physical activity, stress etc causes it or if it just 'does it'. Some days it lets me sleep at night, other times it doesn't. I live day to day in fear of whether or not I'm going to get a good night's sleep. If I feel a twitch I panic. If I don't get a good nights sleep my mental health drops. I become hopeless and have thoughts of suicide. Hopelessness being "well no-one knows what it is, no-one can cure me, I might be like this forever. No one knows, no-one can relate, there's no hope, what's the point?"

I'm trying Physio at the moment but even the Physio can only guess. I'm doing all these exercises which I think are not helping. They are just causing twitching in other areas of my body that I didn't have before. Now I have back discomfort from it. Yes it stopped a bunch of twitching in the knee area of my thigh, but now other areas of the same thigh are twitching.

I'm here to find out if there are others with this condition and if so, what do you do at night to help you sleep through the twitching? I can deal with it throughout the day but not at night. I need to sleep!

[Harwen]

Hi All

I also appear to be suffering from this complaint it's so depressing. I get no sleep at all and it's not helped by stress levels which are through the roof. I too was tested for MND and the specialist said was wasn't that condition. I really feel for people with this condition as it's relentless. I too have have been suicidal. I have a number of other issues going on in my life at the I can't seem to concentrate at all. Feeling totally fatigued at the minute. Has anybody managed to get any relief?

[Embry]

Hi Cindy,

My story is very similar to yours and I'm telling it to give others hope that what can be a very troubling problem can go away on its own.

My fasciculations started abruptly in Oct 2019 - so very close to when yours began. My twitches were quite severe, occurring anywhere on my body at all hours of the day. I too was often kept up at night.

I waited several weeks before consulting a doctor, and as the months went by I saw multiple GPs and had a large number of tests for deficiencies (there were none). I was also put on a muscle relaxant drug. After a year I started charting the severity of the twitches to see if there was a correlation with my monthly cycle or any exercise (there was no correlation).

Eventually after 18 months, I asked a GP to refer me to a neurologist. He sent me for tests to rule out neurological disorders. The tests uncovered nothing new so he diagnosed Benign Fasciculation Syndrome.

A few months later the twitches started to subside very gradually. There were multiple reprisals but they were weaker over time. I didn't believe it at first but it was there in the charts. These days things are good; I still get the odd twitch but it's rare enough for me to consider it "gone".

In terms of the cause: I've been told it might be due to exercise, but I started running in early 2018 and had stopped running months before the fasciculations began. I wasn't running for most of the time that the fasciculations were severe. So I struggle to see how exercise was the cause. I'm running more than ever these days and it's not causing twitches.

I didn't have particularly anxiety-causing events throughout the time either. The only thing I think worth considering is that my iron levels had dropped very low when the twitches were bad, but when my iron was closer to normal, the twitches were better. However, all GPs told me that low iron would not be the cause.

In the entire experience, I found the neurologist the best aspect. He was attentive, explained every test he did, gave me a lot of time in the appointment, described his reasoning based on science and his broad experience treating in the area, and was just a very nice person. Really excellent for a medical specialist!

I hope people reading this have hope that this condition, which can consume a lot of your mental energy, can eventually leave you alone.

[drummo86]

Hi Cindy

i hope I’m not too late to help.. I get you’re concern. I had Chronic fatigue syndrome for years and it was always dismissed as “being in your head”. No one could help me and no one ever believed it to be real- until post covid came along!

I’ve had BFS/ cramp fasciculation syndrome also since 2019. Strangely, this got rid of the chronic fatigue.

not sure if you went to any neurologists to have it diagnosed?

I take medication 3 times a day, no side effects- this completely stops the twitches. It’s meant to cause some drowsiness. I’ve learnt from my neurologist that its a spectrum disorder- closely related to neuromyotonia. Which causes insomnia. I have many nights were I will fall asleep at 4am, mostly during flare ups. For cramps when they are extremely painful, Nothing else works aside from the medication I take.

I still have the conduction and if I stop taking medication, the twitches come back.

it is NOT anxiety- although anxiety can cause twitches which will mostly be in the legs and eyes, it does not cause this disorder and I get frustrated when bloggers not neurologist write about this being anxiety in the internet.

the cause of it is unknown however, it is most often acquired/autoimmune, genetic. I have read journals that suggested it’s related to thymomas or sometimes an infection can trigger it- I’m a RN, I hope maybe this helps give you some hope as I do have experience in the medical field & I know how frustrating it is when you can’t receive a diagnosis or proper treatment or even hope that things will go away.

my neurologist at the time suggested medications to me. BTW- BFS/CFS- anxiety is a symptom of it. 

the other thing said by my neuro was it’s a condition that may go away, or may not. It’s a condition that is symptom managed. A treatment called IVIG can be given but hard ti find a specialist that will do that.

im hoping you find this. I joined up cause I was researching something to do with it & this site popped up in my google search & I wanted to reach out.

take care,

sarah.

[hug0]

Hi Sarah (@drummo86), I'm so relieved to hear that you successfully managed to deal with your fasciculations. Which medication did you take? I've been dealing with BFS for more than two years now. I've also recently heard about IVIG, although I'm not sure I feel ready to receive other people's plasma! Worth considering, after giving the meds a try tho. Appreciate the help.

Take care,

Hugo

[Sophie_M]

Hi all, 

We just wanted to jump in and say thank you all for your bravery and openness in sharing here. It’s a really good place to come and hear from others who may have similar experiences, many will see this post and feel less alone as a result. 

Just a reminder that we do not allow mentions of specific medication names here on the forums as per our community rules here. This is just to ensure that any individuals reading seek help from a medical professional when dealing with these issues as these forums are not designed to provide medical guidance.

We understand this can be frustrating as the experience of chronic illnesses can already be isolating enough but please know we are always here to talk on our helpline on 1300 22 4636.

Kind Regards,

Sophie M

[Guest_25379442]

Hi Kelly - Thanks for your post, it provides some hope. My name is John and I’ve been experiencing benign fasciculation syndrome. Did you experience twitching around the eyes during your time with BFS? This is where I’m experiencing it the majority of the time. Thanks.”