New Fisciculator

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New Fisciculator

Postby tastemaker on June 19th, 2012, 1:26 am

Hello all,

A new twitcher here. Just wanted to quick introduce myself, as I hope to use this site to not only discuss BFS with others, but also as a sort of record of my own experiences as I move forward.

I'm a 34 year old male and have had BFS now for roughly 2.5 months. Similar to the experience of others, I had one singular twitch (which began in my right arm, between the tricep and bicep) that lasted for about three weeks before I started to break out with twitches all over my body. And also similar to others, I googled and went into a panic spiral for several weeks before coming across BFS and this website (I've perused many of the threads over the past few weeks and they have been tremendously helpful in easing my anxiety... so much so, that I really was not concerned when I finally met with a Neuro and had an EMG last week - which tested clean). So, I would like to thank you all for adding your collective knowledge to this little corner of the internet.

As far as symptoms go, my twitches are all over (though I have not yet experienced a tongue twitch). They come and go except for the twitch where this all started (the arm), which has twitched every day since the beginning to varying degrees of intensity. Needless to say, it is my biggest "hot spot". I have experienced soreness, but not cramps, mostly in my legs.

I also have the "shaking" that many people here talk about. It seems I have it to some extent throughout my body; a little in my legs, a lot doing situps, but it is the worst in my arms and hands. Certain positions or flexing of the arm/hand muscles will cause them to tremor. I must admit that I find this much more unnerving than the twitches. When I go to the gym, it is quite embarrassing and worrisome to be shaking like a leaf using machines that are intended to do most of the stabilizing for you. I would be curious to hear from others about the shaking. Have you found this to get better or worse over time?

Other symptoms: brain fog, fatigue, occasional stiffness, and body pulses (can feel my heartbeat pulsing through my body - anyone else have this?). My allergies also seem to have gotten worse, but perhaps that is coincidental.

I didn't experience a virus or any sort of bodily trauma before this all started, so I suspect I let stress get the better of me. I fell into quite an intense period of stress and depression starting last Fall, and only for the last few weeks have I started to come out of this. I guess I can thank BFS for that. To go from thinking you might have only a few years to a benign diagnosis is like being reborn in many ways. I've noticed the twitching has gone down significantly over the past few weeks as I've found myself relaxing much more.

What I'm doing about it: Other than trying to change my overall mindset, I have been exercising more and eating better. At the moment, I am trying a gluten free diet (this was an experiment for my worsened allergies, but I came across posts here where people said that going gluten free helped them with BFS as well), and have been supplementing with a wide range of vitamins (my first blood test revealed a Vitamin D deficiency).

Anyway, that's my BFS summary to this point. Thanks again for having such an active community here. I look forward to chatting further...

Jason
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Re: New Fisciculator

Postby bobajojo on June 19th, 2012, 11:08 am

Jason,

I don't think you can describe BFS any better than you just did!

-Matt
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Re: New Fisciculator

Postby KatieMG on June 19th, 2012, 11:19 am

Your description almost matches mine perfectly (although I do get tongue twitches). Welcome to the BFS club :D
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Re: New Fisciculator

Postby plainslady on June 19th, 2012, 11:54 am

You sound much like me, except for my initial twitch was in my calf... the rest of it reads much like the beginning of my BFS adventure. I do have tongue twitches, but didn't get those until I was several months in. If you happen to get them, don't freak out, because there are plenty of us on here who do.

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Re: New Fisciculator

Postby iLeW123 on June 19th, 2012, 7:08 pm

Hi. In regard to the tremor (which I call ratcheting) I've had it from the start 3 years ago. It has remained at the same level of severity throughout that time. It gets much worse if I'm very stressed or anxious, and also is worse after I've done some weights. I know what you mean about the disconcerting nature of the symptom though. I'm particulary aware of it when doing situps, bicep curls etc. I find if I'm doing say 10 reps of an exercise it'll be worst for the first 2-4 then ease off towards the end of the set. It'll then be the same again next set. I sometimes worry when I push myself up with my arms out of bed and feel the juddery nature of them, but like I say, it hasn't changed it 3 years. My most Bothersome symptoms are sensory ones, I.e burning in lower legs

Nice to meet you by the way

Regards

Lewis
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Re: New Fisciculator

Postby tastemaker on June 20th, 2012, 2:39 am

Thank you all for the kind welcome :) It's very nice to meet you all.

iLeW123 wrote:Hi. In regard to the tremor (which I call ratcheting) I've had it from the start 3 years ago. It has remained at the same level of severity throughout that time. It gets much worse if I'm very stressed or anxious, and also is worse after I've done some weights. I know what you mean about the disconcerting nature of the symptom though. I'm particulary aware of it when doing situps, bicep curls etc. I find if I'm doing say 10 reps of an exercise it'll be worst for the first 2-4 then ease off towards the end of the set. It'll then be the same again next set.


Yes, this sounds almost exactly like my experience in the gym. It starts bad, then eases, returns the next time. Rinse and repeat. Situps and bicep curls are bad, but for me the worst is the tricep/shoulder exercise where you push the weight downward perpendicular to your sides... it pretty much makes my whole upper body vibrate.

Thank you for sharing your experiences with this. I'd love to hear from others.
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Re: New Fisciculator

Postby iLeW123 on June 20th, 2012, 5:03 am

Yes when I do tricep dips my upper body looks like its having a seizure
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Re: New Fisciculator

Postby Missi on June 21st, 2012, 11:14 pm

Mine started in my eye... Then it was on! But the brain fog I get too, it's wierd! I get very achy legs. Like dull aches. Bayer seems to help.. (I try to steer clear of caffeine now, lol) I googled too! I started with thinkin I had a brain tumor, then MS, then I found A!$ ahhhh! That's when I mentally walked the plank!
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Re: New Fisciculator

Postby marbito11 on July 4th, 2012, 6:19 pm

i also have the body pulse...seems to be like the heart but you can feel throgh your hands
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Re: New Fisciculator

Postby Ghayes420 on July 6th, 2012, 2:05 am

I dont know if I am just tired but I dont think i have ever read a post whose symptoms line up as close as mine.

you talk about the things I am always wondering about that are said here often.....

Body pulse constantly, can really hear in my left ear when i sleep, feel it in other areas like finger tips, hands, feet.

ALERGIES. wtf is this, started with me on about month 4, I was waking up with a runny/clogged nose constantly. I have allergies in the spring only, and here it is mid summer and I still wake up with arunny nose, i go through boxes of tissues!

I am having a hot spot now in my left bicep and arm that has lasted near six weeks. I have lost the track of time.

Not cramping yet, but gobs of soreness and deep shooting muscle pains (those didnt start until about month four).

Thanks for sharing your story. Please stay in touch. Your story gives me hope that maybe there is something organic that can be identified, these symptoms match too closely. I was borderline Vit D def at 33 btw. My symtpoms chilled out about month 4-6 but when my tongue felt "weird" the increase stress sent my symtoms through the roof. Thanks again for sharing and welcome to the family of benign twitchers.
A very proud fasciculator since 8/14/2011. :)
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Re: New Fisciculator

Postby volfan on July 6th, 2012, 5:41 am

the tremors and body stiffness are the pits - I can handle the twitching better than that (most days...but not all!). I, too, have been having a stuffed up nose pretty much every morning (including today!) since this started. Interesting. Before I had the first twitch (thumb), I had been having shooting pains down the back of both legs and had already planned to go to the doctor about those. Then the twitching started. I remember I felt stupid having to tell her about what I thought at the time were two totally unrelated things. I thought she would write in her book "just plain nuts". But over the last 7 months of twitching, cramping, tremoring, etc., I have had such a wide variety of things I had not had before I just have to think that BFS has a huuuuge bag of tricks it can bring out slowly to entertain us with.

The last few days I have gone into major eye lid twitch mode. I hate that one too. I blame it on Matt - I'm meeting him today in Boston and he was/is? a big time eye twitcher. I figure I have caught him from him - before I even meet him.

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Re: New Fisciculator

Postby nicholsan on July 6th, 2012, 12:13 pm

Wow. Some of your symptoms sound a lot like mine. I have the shaking in some of my muscles. I especially notice it in my core and neck when I raise up in bed to look around (kind of like 1/3 of a situp and hold it there). The first few months of BFS I had the heartbeat thing so much it drove me crazy at times. I would be reading a book and could feel it beating in my finger against the page. Or I'd be laying in bed an could feel it just pounding in my ear against the pillow. It was very unnerving but after 13 months I don't feel it anymore (even though a lot of my other symptoms persist).

I sounds like you have the best mindset for dealing with BFS. It's annoying and uncomfortable but it could be a lot worse and you're going to be fine. Good luck on the journey.
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Re: New Fisciculator

Postby tastemaker on July 8th, 2012, 11:11 pm

Ghayes420 wrote:
ALERGIES. wtf is this, started with me on about month 4, I was waking up with a runny/clogged nose constantly. I have allergies in the spring only, and here it is mid summer and I still wake up with arunny nose, i go through boxes of tissues!


Yeah, I don't know what the deal is. My biggest allergy problem isn't so much a runny nose as it is runny ears. Constant water buildup. I've had it for years, but much worse this year. I go through lots of q-tips dabbing it up. Some congestion as well, which is abnormal for me. I also got a sinus infection, which I'd never had before and it took about a month to go away. I even tried going on a gluten free diet for a few weeks last month. It didn't seem to change anything, so I guess I don't have a wheat allergy.

Ghayes420 wrote: I am having a hot spot now in my left bicep and arm that has lasted near six weeks. I have lost the track of time.


Mine lasted about three months. I think it has finally moved on. Haven't noticed it in a couple of days. It's really disconcerting to have a twitch last that long...

Ghayes420 wrote: Thanks for sharing your story. Please stay in touch. Your story gives me hope that maybe there is something organic that can be identified, these symptoms match too closely. I was borderline Vit D def at 33 btw.


My vitamin D level was at a 14, really low. Which scared the heck out of me at first, because I read that low D has connections to MS. Have been taking 5000iu for a month and a half now, and have noticed significant overall mood improvement. For sure, let's stay in touch. Maybe we'll figure something out. To me, it seems like it has to be connected somehow with the modern diet (in conjunction with stress, of course). From what I've been told, BFS was first diagnosed around the 1950's or so. The big things that seem to have really affected the modern diet are processing, gmo's, pesticides, and refrigeration. The reason I mention refrigeration is because our ancestors would ferment food in order to preserve it, and we don't need to do that anymore... and so many of us don't get the proper gut flora provided in those foods. It seems a lot of issues have been connected to this, some neurological.

So, I'm trying several things right now... sticking to primarily organic foods, supplementation, and trying to get more probiotics (gut flora) into my diet.

volfan wrote:I, too, have been having a stuffed up nose pretty much every morning (including today!) since this started.


Yep. That's pretty much how I wake up, too. It gets better after I start moving around, but still strange for me.

nicholsan wrote:Wow. Some of your symptoms sound a lot like mine. I have the shaking in some of my muscles. I especially notice it in my core and neck when I raise up in bed to look around (kind of like 1/3 of a situp and hold it there).


Yep, that sounds just like me.

nicholsan wrote:I sounds like you have the best mindset for dealing with BFS. It's annoying and uncomfortable but it could be a lot worse and you're going to be fine. Good luck on the journey.


Thanks so much. Pleasure to meet you.
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Re: New Fisciculator

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