BFS Questionnaire, your short BFS story!

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BFS Questionnaire, your short BFS story!

Postby tarkiao on November 18th, 2013, 4:58 pm

Hi!

I have just found this forum, I'm 24 years old, female and have had muscle fasciculations all over my body literally every day since 7 years ago when they started. I would actually say I have quite severe BFS, I have good and bad days but most of all I just try not to think about them and do not let them affect me at all. None of my friends or family notice it but it does irritate me to just be speaking to people and having my leg/arm etc rippling away! I had the electrical tests done for the degenerative diseases when I was 18/19 and had the full all clear so I think having that peace of mind makes me not be so bothered about them even if they are bloody annoying :lol:

I just thought I'd make a post on here to do some research into it as I'd like to see if I have anything similar with people on here and if we can all help each other out so I decided as I feel like I'm quite an 'experienced' BFS sufferer (these terms!). Doctors don't offer much helpful advice on the condition as I'm sure a lot of people know. I would make a little bit of a short questionnaire with questions I feel relevant and I will also answer it myself.
Feel free to leave any questions out you don't feel comfortable answering :)

Copy and paste these the following into a reply and fill in as much or as little as you want to tell us all your BFS story.

[1] Age, Gender, Country:
[2] How long have you had BFS and when did you first notice your symptoms?
[3] Briefly describe the severity of your BFS on a daily/weekly basis?
[4] Do you feel your symptoms have improved, stayed constant or gone worse?
[5] Have you found ways for yourself that have improved your symptoms?
[6] Did you have cold/flu just before having your very first fasciculation symptoms?
[7] Do you have amalgam tooth fillings? If so, how many and what age did you start having them put in?
[8] Do you have pain with your BFS? If so how much?
[9] What can trigger muscle fasciculations on you personally?
[10] What do you think is the cause of BFS? - As wild as you think it may sound!
[11] What treatments have you tried for treating your BFS?
[12] Do you have anxiety/worry a lot? Or worry about your BFS?
[13] Are you physically active? If so what is your typical week like with exercise?
[14] Do you have any other medical conditions that may be related?
[15] Any personal/ unusual findings personal to your own BFS?
tarkiao
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Re: BFS Questionnaire, your short BFS story!

Postby tarkiao on November 18th, 2013, 5:31 pm

[1] Age, Gender, Country:

24, female, United Kingdom.

[2] How long have you had BFS and when did you first notice your symptoms?

I've been diagnosed with BFS for 7 years now. I was working on a school assignment that was due in for deadline very soon. I was drawing up my ideas in a sketchbook while sitting cross-legged and my first ever fasciculation happened on the bridge of my foot - the inside of it. I had a shock because the whole area of my foot was popping up and down all by itself. Naturally I dropped my pen and pretty much freaked out about it only being 17 at the time, I had such a bad panic that I had them happen everywhere. My parents drove me to A&E and they pretty much ruled out a stroke ( I was that nervous that I went weak) and I was then booked in to have the electric test for the serious degenerative diseases which were all clear. I had the test with the finger tips and also the needles in arm.

[3] Briefly describe the severity of your BFS on a daily/weekly basis?

I have fasciculations all over my body. From top to bottom - my eyelids, cheeks, chin, neck, full body etc. The only place I don't think I've had them is my tongue, fingers, toes and genitals! Mine appear by one area twitches and then it 'vibrates' for about 6-10 more times then stops usually by itself. I get about 5 every minute on average in any given part of my body, they do not seem to be related. Also I have noticed a lot of the time it can be move related, for example when I sneeze - right afterwards guaranteed my stomach muscles will vibrate strongly for 5 times or so in a kind of 'aftershock'.

[4] Do you feel your symptoms have improved, stayed constant or gone worse?

At the beginning I was convinced it was getting worse but I think that was because I was focusing on them so much. I think they are pretty much constant although I have bad days and good days.

[5] Have you found ways for yourself that have improved your symptoms?

I can't state this enough - keep your mind off it! When I am active both physically and mentally I do not really notice them at all, I wouldn't know if they were happening or not that way. Gentle daily exercise is great too, I notice I have them more when I am working at my PC all day. I have recently just started taking magnesium supplements, I think there is a very slight improvement but I am not sure if this is a placebo effect with me just thinking they are working so I am not thinking about them as much.

[6] Did you have cold/flu just before having your very first fasciculation symptoms?

I had a very bad cold about a week or 2 before my first fasciculation and had mild stress due to school deadlines. I have heard other people having colds before BFS came onto them too. If this is the case it could be nerve damage via illness. Obviously there are no such studies out on this yet.

[7] Do you have amalgam tooth fillings? If so, how many and what age did you start having them put in?

I have 3 amalgam tooth fillings, I have heard studies about these causing slight mercury poisoning/ people with sensitivity to mercury. I am currently planning to have my 3 removed to white composite fillings. Also I had my fillings put in between age 16 and 18 - I got my BFS at 17/18 so I am suspicious of this also. If this is a possible reason for the BFS then I do have doubts that removing the fillings would 'heal' my BFS but I think it would give me peace of mind to have them out- not to mention they look better!

[8] Do you have pain with your BFS? If so how much?

I do not have pain with the fasciculations but I do have random - what I would describe as 'nerve pain' which appears in places just as randomly as the BFS. I'm not sure if this is anything else or it is another symptom but I get it sometimes in the palm of my hands and my legs. They come and go and not 'very' painful.

[9] What can trigger muscle fasciculations on you personally?

Relaxing. Sneezing. If I have hiccups I usually have a fasciculation in my stomach right after (nightmare!).

[10] What do you think is the cause of BFS? - As wild as you think it may sound!

It's impossible to know for sure but I think it was either due to a bug when I was cold that somehow effected my nerves, anxiety maybe - maybe we actually just feel more nervous compared to other people without showing it physically (we'd never know how we were feeling inside our own bodies!). I also wonder if I could be a kind of reaction to bright screens/ I work a lot on PCs so I wonder if this could be a factor. Maybe Amalgam fillings - I will be having mine removed soon so I can report if that maybe flares down afterwards although I think the damage has already been done.

[11] What treatments have you tried for treating your BFS?

So far, Magnesium supplements. Exercise. Meditation. Yoga.

[12] Do you have anxiety/worry a lot? Or worry about your BFS?

I think I don't but I often find when I am sat working I'm quite tense. I am very confident in daily life and take a lot of risks with my work especially but I do get anxious about public speaking etc although once I am doing these things I am completely fine. I think anticipation of upcoming events eats away at my nerves.

[13] Are you physically active? If so what is your typical week like with exercise?

Quite, during university in the last 3 years I was a regular at the gym. Now while I'm working in a studio for a lot of the day I have exercise sessions for 30 mins most days and have plenty of office/studio breaks to keep my body active and my mind off work.

[14] Do you have any other medical conditions that may be related?

I have just been diagnosed with a heart murmur - I am not sure what type yet but I do have quite an irregular heart that seems to be effected by breathing. For example when I inhale it seems to go quite a bit faster and when I exhale it slows and sometimes feels like it is skipping - these feelings make me nervous so I am currently just about to have an ECG and echo test in these 2 weeks. I also find when I am nervous about noticeable skipped beat then I get flare ups of muscle fasciculations. I think these two conditions together are absolutely awful I wish I wasn't so aware of both.

[15] Any personal/ unusual findings personal to your own BFS?

At the moment I am trying to rule out a few things to see how it affects my BFS, the amalgam fillings to begin with, then trying between 1 and 2 magnesium supplements (and addition of eating bananas) daily to see if that effects the amount I get. Otherwise I can just say to others suffering with this awful condition to not worry about it - it does not help and keep searching for things that make yours better :)
tarkiao
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Re: BFS Questionnaire, your short BFS story!

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