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Topic: Benign Fasciculation Disorder - Hopelessness

12 posts, 0 answered
  1. Cindy Louise
    Cindy Louise avatar
    1 posts
    10 December 2019

    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!

    1 person found this helpful
  2. quirkywords
    Community Champion
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    quirkywords avatar
    14722 posts
    11 December 2019 in reply to Cindy Louise

    Welcome Cindy Louise to the forum.

    it sounds like yiu have a lot cope with and it is hard when all medical experts are not able to help.

    i do not have the condition but by answering your post will get your thread closer to the top so more people can see your thread.

    Thanks again fir sharing your story.

    Quirky

    1 person found this helpful
  3. Croix
    Community Champion
    • Outstanding members who have volunteered their time to support others here on the forums
    • Awarded by beyondblue for providing outstanding peer support to the online community over a period of 3+ years.
    Croix avatar
    11081 posts
    11 December 2019 in reply to Cindy Louise

    Dear Cindy~

    Welcome to the Forum, a good thought to come here as you have a hard load to bear. In face I think you have several.

    The first obviously is the original condition, Benign Fasciculation Disorder. I simply cannot make any remarks about that , while I have a long term condition that can preclude sleep I know nothing about this.

    Having suffered with the condition for 7 weeks one would have thought by now it would have reached the stage where some sort of prognosis could have been given, and the fact that this has not happened is a huge worry, not knowing if it is permanent, or if there are any things that can be done. Even the cause. Very hard to cope with.

    Apart from everyday inconvenience the resulting sleep deprivation colors your whole life leaving one not only tired and sub-par each day but also in itself causes more stress and worry.

    My conditon, a spinal one, is well diagnosed and I know the outcome as it progresses, thankfully very slowly. Sadly you do not have that certainty, though that might mean just as it came unexplained, perhaps it might reduce unexplained too.

    It may be that medication might help you to rest, though not necessarily that first one offered. Back pain as well as anxiety and other MH conditions keep me awake, though during the last few years a more unconventional medication has been prescribed, and that, together with exercises, has given me a lot more success in going to sleep.

    Perhaps there possibilities there.

    Do you find the exercise from physio or other activities in making you physically tired, helps at all? Similarly do exercises that quiet the mind at night -perhaps the free smartphone app Smiling Mind might help?

    Croix

  4. JaneBl
    JaneBl avatar
    5 posts
    3 January 2020 in reply to Cindy Louise

    Hi Cindy,

    That sounds horrible. In some ways I can relate - and in some ways I cannot.

    I do not have the twitching thing you speak of, and the disorder you mentioned sounds quite rare. I also have a rare disease which makes it very hard to find support. My disease is autoimmune, and it can attack any part of the body at any time. It is extremely difficult to diagnose - like yours.

    I thought you would like to know that you are not alone. My illness took 8 years to diagnose - and there were lots of medical appointments and tests during that time. I understand what it is like to be examined from every angle, to have buckets of blood drawn from your veins, to see the top specialists and still be left bereft without answers.

    Living with ongoing and inexplicable symptoms can be very anxiety-provoking.

    The only thing I can suggest is to keep reaching out. In the end, I went and sought secondary opinions and it was only then I received a diagnosis. So keep asking and if your doctor will not help or listen or take you seriously, dump them. I have laughed in doctor’s faces and walked out on them when they have been dismissive of my pain.

    And good on you for reaching out here. You may not be able to control your symptoms - but you can reach out.

    Warm regards,

    Jane.

  5. Kelomagelo
    Kelomagelo avatar
    4 posts
    7 May 2020 in reply to Cindy Louise

    Hello, Cindy. Kelly here. I had benign fasciculations for ten years all over my body and I do mean everywhere. It is due to anxiety ALONE and I know a lot of people don’t believe that but it’s 100% true. In my case, hypochondria. Ironically there was a study done on this and 30% of sufferers were medical students. There is actually a whole forum for this. I don’t have the link right now. It DOES and WILL GO AWAY.

    anyway, I KNOW what you are going through. Do not worry. It wasn’t ten years of hell. The first year and the second were hell. YES. The third year I got periods of peace but it wasn’t good. I saw Better days from the 4th year on. When I was desperate I used to sit in the shower with the spray going all over me so I didn’t notice the twitches. Helped. Valium REALLY helped and it will help your sleep too. It’s so worth it...or it was for me. Yes, it’s addicting but when you stop it, you do not “crave” going back on it. It’s not that type of drug. I was able to stop it gradually. I did go back on it when I had a bad period of anxiety in my life. But it helped me. Anyway, I was told by someone else that had it that her neurologist said it’s usually a 10-year course and that was about right for me, although I had peace definitely at year 4 and more so at 5 and 6. After that it was just sporadic and much easier. I would barely call it a problem at year 10 and by 11 it was gone. I want you to know this is not forever and it sounds ridiculous but the best thing you can do is to get your mind off it. Do not spend too much time researching on the internet and being a hypochondriac. It will set you back. TRYYY to pretend it’s not there and go out with friends and do the things you normally do and it will go away. I didn’t have a problem sleeping but I have always been able to sleep through an earthquake. Valium would knock you right out if you chose to take it. There might be other options out there these days?

    if you want to talk to me, I don’t mind. I can put my burner email up and you can email me and we can take it from there only if you would like! I felt so alone too! I got mine in 1995!!! Every couple years now I take a look on the forum to see what poor soul I can help with words of comfort. That’s how I came across your post, even though it’s not on the bfs forum. Those people, btw, are obsessed with ALS etc. My neurologist said I had the same chances of any normal human of getting ALS. I wouldn’t recommend the forum really. But have a look! HUGS KX

  6. Kelomagelo
    Kelomagelo avatar
    4 posts
    7 May 2020 in reply to Cindy Louise

    Oh here is the link:

    http://www.aboutbfs.com/forums/

  7. Kelomagelo
    Kelomagelo avatar
    4 posts
    7 May 2020 in reply to Kelomagelo
    Oh, I almost forgot something important that really helped me!!! Baths so hot you can just barely get in them without obviously burning yourself! It makes the muscles really mellow so when the twitches hit, they don’t have much impact. Believe it or not it was really good!! Kelly
  8. Kelomagelo
    Kelomagelo avatar
    4 posts
    7 May 2020 in reply to Kelomagelo
    And another thing I forgot...I don’t know who told you “it might go away and it might not,” but both my doctor (the greatest doctor ever to live) AND my neurologist told me it always goes away given time. My doctor said it was like the stock market. It will go up and down and eventually go. My neuro didn’t really know but said “about 5 years”... It probably varies for everyone. Hugs!
  9. Selina3101
    Selina3101 avatar
    1 posts
    6 July 2020 in reply to Cindy Louise

    Hello Cindy!

    I'm Selina and I have exactly the same problem like you.. only without the suicidal thoughts. the fasciculation i have been having for more than a year now. It gets better sometimes when i don' think about it. the last night was rough. i have an exam in university tomorrow and i really need to sleep but i cant because the fasciculation started right when i went to bed and didn't stop until the next morning. so no sleep. I am trying to ignore it, trying to distract myself. doctors told me it is because of stress and i do yoga and go running regularly but i still have the problem. im desperate and no one understands. I sit in bed at night crying because i cannot sleep and because i know i really have to. i'm in the same cycle like you. i am afraid of gong to sleep because the fasciculation will start again which gives me more anxiety and which increases the possibility of the fasciculation. but i dont know how to get out of this cycle. at the moment im seeking a therapist which is really hard because they always have too many pacients. I get rejected in every single phone call i do.

    I would be so happy if you could answer me since you are the only person which can actually relate to my problem.

    I hope ypu got better since december last year!!

  10. Josko
    Josko  avatar
    1 posts
    24 September 2020 in reply to Cindy Louise

    Hi Cindy

    I too am a recent sufferer of BFD ....now only 5weeks since it appeared suddenly! My doctor initially diagnosed restless leg syndrome but the symptoms I have didn’t really match RLS but close to BFD.

    anyway my doctor prescribed to me a medication which gave me immediate partial relief but still quite annoying, he then upped the dosage and now 80% of my symptoms have abated

    It was used to treat depression but is also a very effective drug in treating nerve pain

    1 person found this helpful
  11. Harwen
    Harwen avatar
    1 posts
    29 October 2020

    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?

  12. Embry
    Embry avatar
    1 posts
    24 August 2021 in reply to Cindy Louise

    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.

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