Encouraging Others: BFS Free Life

GypsyDuBois

Active member
Hey Gary and JG,

Thanks for that guys, I appreciated your feed back. Thought I might drop in over the next month or so and try to encourage others as best I can. I must admit I havent really given BFS a lot of thought in the last year, just been gettin on with my life and feeling healthy and keeping active , you are both going to love being BFS free ! life will take on a deeper meaning for you as it has for me, making everyday count is my objective and creating beautiful memories for my children as often as possible, even pencilling in a date a week with my hubby has been so much fun, we both kinda feel like teenagers again...lol......I do wonder tho if BFS just has to work itself out of the system like a virus does or if its root is in deep seated Anxiety ? All I know is that when it all started I was deeply stressed and depressed, and thats really when the twitching began. Id really like to hear your thoughts if you get a chance ..


Take care,

Deb
 
Hi GypsyDuBois,
It's so good to read your post!! I've been a twitcher for almost nine months now. I have good weeks and bad weeks...but I'm getting used to it (and now convinced that it IS indeed benign which has lessened a LOT of my stress and worries). I agree that as strangely benign as this 'illness' is, it definitely makes you reevaluate how you live your life--not taking things for granted, etc...

Since I just recently found this board, I am not familiar with your posts from your BFS days. I'm just curious to know how long you were a twitcher. (you mentioned years??) If you could summarize your story, or point me to one of your former posts, I'd appreciate it.

As long as this 'thing' doesn't get any worse than it has been on my worst days so far, I know I can handle it and not let it interfere with my life....as many on here have said, if this is the worst thing we are plagued with in our lives--it's not such a bad cross to bear in the grand scheme of things.

I'm very happy for you, and very grateful that you came back to share your support and reveal that this CAN subside.

-Amy
 
Hey Amy :D)

Thankyou so much for you post.. I applaude you, because you KNOW that BFS is benign and only temporary I think thats a hurdle you have just leaped over and you are definately on the right track. You sound like a very level headed and balanced lady. I was amazed to find that there is still a post of mine lingering on the board, its in the title Experiences with BFS and its on the 3rd page right down the bottom of the list :D) . BFS started for me when I was 36 and lasted approximately 6 years, BUT during that time it did change, and waxed and waned, and at 42 it has practically gone, just a twitch here and there,I am now 44, I can say with confidence that over the past 18 months to 2 years I have been free of all twitching and shaking and jerking and fatique. I excersise for an hour a day now with no side effects of any kind, and also I do not have any anxiety, absolutely none !!I have my full health back which brings a super huge smile to my face, and Amy trust me YOU will get thru this "stuff" it WILL happen for you, your life will get soo much better, please stay strong and trust with all your heart that it will pass, I just pray the sooner the better for you my friend, just because it took 6 years for me DOES NOT mean it will be the same for you, please dont look at this post and be disheartened, I was not on medication for most of that time but as soon as I started I got better. Are you on any medication ? I hope that I have helped you some Amy, please keep me posted on your wellbeing.

God Bless ya Amy,

Deb
 
GypsyDuBois---I have been twitching for 7 years now---I know my twitching is due to anxiety--I have tried medications -years ago--and they did not help--I was just wondering, what medication you tried that made you better --and are you still on it?
thanks
Pandora
 
THANK YOU GypsyDuBois,
I am 30 years old...and have been dealing with this for almost a year. I read an awesome book about anxiety. (I never thought I had anxiety until this last year). My father and his two sisters all have suffered from GAD....and of course, I watched them deal with it when I was much younger and thought "that'll never happen to me". Don't get me wrong...my dad has led a very normal life, but I do remember many a time where he'd be laid up on the sofa breathing into a brown paper lunch sack.

Anyway, the book about anxiety discussed how generalized anxiety (along with other types such as panic disorder) tends to strike people in their mid-20s to mid-30s in the VAST majority of cases. It will run it's course over months to years...and is rarely seen as people get into their 40s and beyond.

Sounds like you have been through exactly this cycle. Anxiety is the hardest thing to deal with for ALL of us...NOT the twitching. It just stinks that each symptom makes the other worse. How closely they are related is beyond me....my neuro, however, seems convinced that anxiety is bringing on the BFS--but even she admits that she can't be sure on that one----but what she's absolutely sure about is that the twitching is BENIGN.

I have yet to see a post by anyone on this board who does NOT have some level of anxiety.

Back to my neuro...I just saw her today for a 'reassurance' check (since I have fierce twitching in my hand--which is new--and because I'm now battling fatigue). She checked my reflexes and answered every question I had about the accuracy of EMG and onsets of neuro muscular disease, etc....She's awesome, and she totally understands if I need to come in as my symptoms come and go. I think today I can close the book on needing to see her again unless I wake up and can't move a body part.

Both my neuro and my GP have suggested medications. I tried SSRIs (both Lexapro and Zoloft), and I ended up in the ER with major panic attacks within two days of being on each med. Of course, I didn't taper up slowly....they just gave me the standard dose. Now, just the thought of taking any SSRI makes me antsy.

I do have Xanax and Ativan that I can take as needed....but I only need half a pill (.25 mg)...maybe once or twice a month. At this rate, there's absolutely no worry about addiction or withdrawal. I know how to recognize anxiety symptoms, and therefore I'm much better about keeping them from spiraling out from under me. Now that I am embracing anxiety instead of constantly thinking something biological is causing my symptoms....I actually experience anxiety symptoms less often. Though there are times, even good times, when the anxiety symptoms appear. For me, as with a lot of cases of GAD, there often is no trigger to set off the anxiety...your body just starts showing symptoms--for reasons unknown except to the body itself.
My doctors have actually asked me to take xanax more frequently to see if it helps me even more. But as long as I can live and function normally without it...I'm fine with just the occasional half-pill. If I couldn't function as normal, then I'd consider taking more.

SSRIs don't make sense to me....there's got to be a more natural way to get brain chemistry back to normal. Plus, the docs prescribe them to millions of people without knowing 'for sure' that there's a true chemical balance in the brain....it's just assumed. Shouldn't there be an actual test for that??? ;) Don't know how they'd do that though...spinal tap maybe??

It would be nice to hear more success stories with regards to SSRIs. I spoke with a psychiatrist about six months ago who said there is NOTHING wrong with sticking to straight xanax for pure anxiety. He said people with anxiety are the least addictive types of people because all we want to do is feel 'normal' without the use of any drugs whatsoever Depression lends a different outlook....and I'm certain that I'm NOT depressed.

Anyway, thanks so much...and God bless YOU for sharing your stories with the new people on the board. I hope you keep checking in to lend more support!
Amy
 
Hey Marie,

Thanks for your post. I was on Aropax which in the states is called Paxil to begin with ,I found it really weird as I have never had ssri's before, it did give me those crawly sensations and really itchy skin but I persevered with it and eventually it worked very well. I am not taking any medication any more, I made the choice to slowly go off my meds 6 months ago, with no side effects and no more anxiety :).

Have a good day,

Deb
 
Thanks GypsyDuBois,
You sure sound like you are"together" mentally!! I tried Paxil 6 yrs ago and it was a nightmare experience-nauseous, shaky , nervousness, jittery--etc!! I'm sure there is something out there that can help me--maybe a psychotherapist!!
Pandora
 
are, GypsyDuBois. I also "came down" with my syndrome at age 35 and now at age 43 am so much better. It's not gone, by any means, but the way I describe it to people is that I am 80% better 80% of the time.

It's interesting because right now I am very stressed out over something (one of my children is going away for 3 weeks) and it is causing me some anxiety. Bingo, up goes the syndrome.

But not nearly as bad as it used to be. I'm on 1 mg. klonipin nightly also.

good luck everybody. I agree: it can and usually does improve over the years.
 
Hello all,

I havent potsed here in a long time either. Like it was said before in another post, my symptoms are 80% better 80% of the time also. I really couldnt even tell when and if I twitch...I just dont focus on them at all. The best remedy is to realize that it is benign, that time does BFS good, and move on... you will be amazed at how your life changes back to normal when you allow it!
 
Hi,An old post ,just for keeping our spirits up, another example of BFS getting significantly better or cured with time.Luck,Eduardo
 

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