My Story BFS?

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My Story BFS?

Postby Deanob on September 25th, 2014, 3:18 am

Hi here's my story, it started around 2-3 months ago, I had a couple of vaccination's for a honeymoon trip to Tunisia, after the shots my wife was diagnosed with rare form of skin cancer a week before we got married - so could it of been the stress of my wife's diagnosis, the wedding or the shots - who knows?

Anyway when we returned from the honeymoon I started noticing small twitches in my arms and legs for a few days nothing major, then BAM over night my full body erupted from head to toe with a fever and night terrors and to top it off it was the day of my wife's operation.

As you do I started googling my symptoms which made them worse, I couldn't eat, sleep or do anything, I was thinking a lot about my wife but at the same time constantly worrying about my own symptoms and every spare minute looking them up on the internet, I would sit and watch my skin crawl and twitch, I had twitches in places I never knew I had muscles lol, I was convinced I was dying. A trip to the doctors and told him my story he dismissed it as stress and gave me a blood test all ok, and 2 weeks sick.

As I relaxed I noticed my symptoms reduced but are still present, this took over my life for 2 months, constantly think about it, googling, talking about it, worrying and anxious all the time, I stopped running and playing football which I love, and even thought if this is how I am going to feel forever I would rather not be here (could this of been my anxiety taking over)

Finally I had a fight or flight moment, do I come home and sit on the sofa googling and worrying or do I get back into my routine, so then I got my running trainers out and started doing what I did before my illness. This seems to have helped a lot and my head started to sort itself out, my body still twitches every day and I have tingles that come and go in my hands.

As for sleeping if I am less stressed I get a full nights sleep, but if I have a nightmare or bad night my body can feel like its shaking inside, all these worrying symptoms, internal tremors, twitches (visible and non visible), tingles all seem to reduce if I have less stress, there may be a day where it gets to 10AM and I think I haven't had a twitch yet them BAM there one goes as if to remind me i'm still here, I hope this makes sense to you all, I came across this site and loved the questions and answers

any feed back from anyone would be great

thanks for taking the time to read.
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Re: My Story BFS?

Postby Yuliasir on September 25th, 2014, 5:29 am

Hi Deanob,
sad to read that your wife has skin cancer but I suppose you both do a lot to overcome that. No doubts you have superimposition of several significant stressors, so you seem to demonstrate reaction typical for this board members.

Good to see you got a grip on it before the fears just got it on you.
Wish you and your wife all the best
regards
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Re: My Story BFS?

Postby Deanob on September 25th, 2014, 5:33 am

thanks for the message, my wife got the clear last week after two ops, my twitches tend to flare up under stress then reduce just wondering if this is a normal BFS sign

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Re: My Story BFS?

Postby Yuliasir on September 25th, 2014, 5:59 am

Yep Dean, absolutely normal. BFS is a crazy show, it can change locations or intensity frequently, add cramps or pains, paresthesias etc.

Good to see your wife is Ok now :) So would be you for sure. BFS lasts for long but otherwise it is rather harmless
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Re: My Story BFS?

Postby Deanob on September 25th, 2014, 6:34 am

Hi thanks, yeah the symptoms are crazy with them settling down but still present I haven't been back to the doctors as I have no weakness or pains really just twitching.

Hopefully the worst has been and gone I can cope with it as it is, this site seems to have helped me really, peoples personal experiences seem similar to mine

thanks for the response
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Re: My Story BFS?

Postby Deanob on September 25th, 2014, 10:51 am

Another symptom I personally experience is Vibrating Legs and Feet anyone else experienced this?

thanks
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Re: My Story BFS?

Postby misterjuanperalta on September 25th, 2014, 11:24 am

I've experienced that.
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Re: My Story BFS?

Postby terry in sf on September 25th, 2014, 3:30 pm

Hi Dean, interesting that yours started after a series of vaccinations - I recall someone else mentioned that as well (not of course that there weren't other things going on!)

You mention vibrating feet and legs - I wonder if this is what I refer to as "buzzing" which is my perception - but yes, moreso in my hands.

Deanob wrote:Finally I had a fight or flight moment, do I come home and sit on the sofa googling and worrying or do I get back into my routine, so then I got my running trainers out and started doing what I did before my illness. This seems to have helped a lot and my head started to sort itself out, my body still twitches every day and I have tingles that come and go in my hands.


I finally got to that point in my first go-round with this 7+ years ago - almost have to come to a point where you figure there might actually be something wrong, but what are you going to do with the time you have left? Which in a way is all of us since we are mortal beings!
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Re: My Story BFS?

Postby Deanob on September 26th, 2014, 1:48 am

Hi yes the buzzing is pretty mild and I think tends to come and go mainly more when stressed, for certain if I don't think about it I can hardly notice but when the anxiety kicks in I start looking for it on purpose.
I see you are 7+ years with this, how are you getting on
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Re: My Story BFS?

Postby buddyroxy on September 26th, 2014, 7:05 pm

For the vibrating try taking tums. It worked for me i started with 6 a day, then dropped down to 2 a day the buzzing was very rythmic in my thigh for 3 days it went off evey 5 seconds for about 1sec, it felt just like a cell phone buzzing in my leg.
After a few weeks, the buzzing came back and in a wierd way, everytime i touched my thigh or even tapped my knees together they would buzz or go zzzzz, that lasted a month then i thought well i will up the tums ( calcium) , to 4 a day and it got less and less over two weeks till it was gone.
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Re: My Story BFS?

Postby Deanob on September 27th, 2014, 4:12 am

Hi thanks for the advice I will definitely try the tums, it is mild but tends to come and go if something like tums can make it disappear it's worth a try, I will let you know the outcome, thanks again
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Vibrating legs cure???

Postby leaflea on October 12th, 2014, 8:55 pm

This was not the first time I'd read about taking TUMS specifically for vibrating/buzzing. So, I have been taking 6-8 tablets per day now for a couple of weeks. I have to say it has helped with the almost 24/7 vibrating left leg from the soleus down around the ankle and heel. The tapping, cascading sensation I've described for about 8-9 months now. I'd have to say...IT WORKS!!! I had read elsewhere there is something about the specific calcium in TUMS in the way it is absorbed or something. Anyway, the downside of this is, it seems to have CAUSED me to have heartburn. Weird, I know. It's like a paradoxical or rebound effect. I didn't take the TUMS because of any indigestion, but ended up with it. Anyway...just wanted to report back, that IT worked!!
Matthew 6:27 Who of you by worrying can add a single hour to his life?
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Re: My Story BFS?

Postby buddyroxy on October 13th, 2014, 9:39 pm

I am so glad ti hear it worked for you!!!!!!!!!!!! Tums has calcium carbonate in it, i told the neurologist about it he said tums is one of the safer calciums to take in large doses. Plus on the bottle it says you can take that many. I was on the tums for around 4 months and have not had any in 1 month, vibrating hasnt come back, i will use as needed.
Also when i told the neurologust about tums working and my fears of you know , he smiled and said "do you know why I'm smiling,because Tum doesn't cure that."
Anyways it only helps with my buzzing.
Take care
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Re: My Story BFS?

Postby leaflea on October 13th, 2014, 10:59 pm

thanks for the tip - your writing this made me recall something I'd seen before but never got around to trying with all the other supplements Ive been messing around with. This should maybe go under symptom management. Still working and even one day break is amazing, literally - it was c o n s t a n t! I don't think I've had it now for almost a week!
Matthew 6:27 Who of you by worrying can add a single hour to his life?
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Re: My Story BFS?

Postby MarioMangler on October 14th, 2014, 12:39 am

I had never heard the Tums thing and I figured well that's cheap, why not try it. We'll see how it goes.
BFS FAQ:
1. No, that's not bulbar
2. No, the location doesn't matter
3. Yes, we have all had that symptom
4. No, you're not the exception
5. No, that's not ominous
6. No, you don't need an EMG
7. Yes, you will be fine
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