Bad Days

This forum is for posting your personal experiences with BFS: symptoms, doctor visits, fears, etc.

Please use this forum to post give and recieve encoragement and reassurance from sharing the trials and triumphs you have faced.

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Bad Days

Postby Roger G. on March 26th, 2005, 11:07 am

Hi Guys Roger Here. I Have to say that I probably get my most satisfaction from helping others in need,it seems this is always the way that it has been with me. That is why I enjoy teaching the martial arts so much especially the children. The past couple of days have been real tough to say the least. As most of you know as far as twitching goes It does not get much worse than my case. from the bottoms of my feet to the top of my head 24/7 for the past 10 years. As with all of us sometimes we get some "added featuers". Well the past few days I:ve had a few. Not only increased twitching in the legs ( I didnt think that was even possible :!: ) but constant tingling,buzzing,and about the only way that I can describe the next sensation is a deep shaking vibrating feeling that seems to coming right from the bones themselves :shock: :!: .Along with this I feel completely exhausted. Like I have said before It is times such as this that truly test our resolve as well as our courage. It Also reminds us what a truly hellish affliction this can be. I thought I would feel better sharing this with you,Remember you are not alone.Right now I am just going to lie down for awhile,maybe go shopping later. I would like to try to get to the gym,at least for a little while.

Thanks For Listening, Never,Never,Quit :!: :twisted:
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Postby Stephanie on March 26th, 2005, 2:43 pm

Sorry you've been feeling worse. I've heard a few posts mentioning the vibrating feeling so it must be part of the bfs. Although I don't think I twitch more than you, I do twitch every single second somewhere w/out a break. Makes it hard to put out of your mind. Lately I've been getting painless muscle spasms too. Today my nose even spasm'ed!
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Postby joeyata1 on March 26th, 2005, 6:30 pm

roger when you say you twitch 24/7 deos that mean 2-30 parts of your body are twitching similatantiously? does it mean your clothese are moving like pants legs and long sleeve shirts? if this is the case its almsot like terats syndrome of the body. i saw a guy on oprah that was shaking like crazy from birth and had some type of surgery that worked. the man couldn't function it was so bad
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Postby Roger G. on March 27th, 2005, 6:07 pm

No Joey,Its classic BFS. Seen three neuros,had two EMG"s all the blood work cat scans MRI:s have seen two movement disorder specialists.Have seen no one in the last four years. I:m through going that route. its here to stay,thats it. And I am pretty sure that by now we all know that their is no cure (at least not at this point). So we have to deal with it as best we can.Phsically I am able to do anything,mentally it can get real tough.
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Postby Barb916 on March 27th, 2005, 10:08 pm

Hi Roger,

I too suffer from the deep shaking/vibrating feeling. It is my most worrisome symptom. I did tell my neuro about it at my very first appt 11 months ago and she didn't say anything about it.

The point that I try to hold on to is that the shaking feeling moves around. First it was in my chest for 2 months, then it spread to my arms (biceps mostly)..then it went away! Unfortunately, a few months ago, it came back. But not in my chest any more. First to my legs for a few weeks, leg are fine now but its back in my arms again. I keep trying to remind myself that it must be part of BFS because of its migrating pattern.

I'm glad you posted because I worry about this symptom alot. I helps to know others have the same symptoms.

Hang in there!

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Postby Barb916 on March 27th, 2005, 10:10 pm

Roger

I forgot to ask you this.....I feel that shaking feel MOSTLY right as soon as I wake up in the morning. Is that when you feel it most?

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Postby twitchbod on March 28th, 2005, 2:23 pm

Hi Roger, I hope your day is going better. I too have had a rough day, but getting on here and reading everyones input is such a reminder that I'm not alone. I do understand the buzzing inside, and I too feel the other feeling of the bones vibrating or buzzing. I have two different sensations. One the buzzing and one is the bone vibrating. When I read your note, I totally related. I just crawled out of bed after laying there counting the twitching. I am an active person and this is bugging me. As I'm typing this, my right arm feels so heavy. Now I can play tennis at the same level, but then to hold my arm up sometimes, it just feels so heavy. Anyway, thanks for your post today, it was needed! Val
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Postby Cutte on March 28th, 2005, 3:08 pm

Roger,

As you have told me on many occasions, hang in there-don't quit!! It's just a setback and you will make it through this one just like the others. And we're here to help you. :wink:
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Postby Roger G. on March 28th, 2005, 8:48 pm

Thanks everybody :!: feeling better today. just got back from the gym.Worked out for about an hour,felt good. Tomorrow I night I teach karate for two classes then work out in my regular class for about an hour and a half. I always feel great after that. I am also working on putting together my own self defense course based on "REAL WORLD, POST 9/11" circumstances. I have been introducing some of it into our classes, its going well although its a lot of work. But I always beleive its best to keep busy. Anyway thank you all for your concern,and if I can ever be of any help you can always PM me.

P.S. The Buzzing And Twitching Is Always Worse When At Rest. I Have Always Found That Activity Overrides The Sensations For The Most Part.Thats Why I Try To Stay Active.
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Postby amy_twitch on March 29th, 2005, 12:15 pm

Hi Roger, Glad you're on the upswing. Seems quite a few of us have been having bad spells lately (or flares or whatever you want to call them). I haven't said much of anything-but I've had a few rough symptom days myself. Lots of random twitches and some buzzing---also just not feeling pretty foggy headed at times. I thought I'd been handling everything very well...but I guess I had a lot going on this last week. We hosted Easter at our house, as well as my grandfather's 80th Bday on the same day. It was pretty hectic---and to top it off, my in-laws were staying with us (I swear, they cause my anxiety to skyrocket--even if I think I'm maintaining control). I totally agree with you about activity making the symptoms lessen (even if that means you're able to handle them better mentally). I found that if I sat and focused on 'why are my symptoms getting worse after so much time of feeling better??' the symptoms seemed to worsen on the spot. But if I forced myself to get up and move around and stay active....all got better!

This condition is so strange!! Glad you're doing better again---I am too!

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