My ONE YEAR BFSiversary!!!!!!

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My ONE YEAR BFSiversary!!!!!!

Postby plainslady on August 14th, 2012, 1:03 pm

A year ago today I noticed a strange twitch in my calf while lying in bed. Shortly thereafter, I made an appointment with Dr. Google and the twitching took off like wildfire from head to toe. This was my first post here a few weeks after:

viewtopic.php?f=5&t=16611

I’ve had some tell me how calm and “together” I sounded even back then but let me assure you that was just me hiding behind the keyboard trying to sound rational. I remember hitting submit and telling myself that no one was going to respond because my story wasn’t going to sound the same as everyone else on the board. There were two of me back then, the semi-rational person who could see myself in so many other stories, and the inconsolable crazy lady who just knew I was going to be the exception.

Then the best thing happened. People started responding to my post. Matt, Shannon, Johnny, then others. I started to truly hope that maybe this wasn’t the start of ALS or MS after all. It seemed unlikely at the time that it was benign. I’ve religiously kept a journal since I was a young child, and my entry from September 6, 2011 (my 33rd birthday) read like this: “Tonight I decided to sit and count my twitches. This is hard to do considering they don’t take a break and I can feel many different places twitching simultaneously. But I did my best, and my figures are scaring the life right out of me. I counted them for a minute and came up with 73. I don’t think I got them all though because it is hard to count the ones in my calf and thighs while my arms are going off like machine guns along with my abs. But taking 73 as my number that means I am twitching 4,380 times an hour. That number translates into 105,120 a day. WHAT THE HELL IS GOING ON?????? Not a second goes by that I’m not twitching somewhere. I feel like my body has been taken over by a demon. I don’t think I will be able to keep on living if this is what the rest of my life is going to be like.”

I was already struggling with intense suicidal thoughts at the time, having dealt with chronic pain from my spinal issues and the unrelenting health anxieties that took up every waking moment of my life. Not only was my mind seriously ill, but my body had been taken over by BFS and it was no figment of my imagination. Before BFS most of my health scares were the result of my overactive imagination; things that were quickly dismissed by a trip to the doctor or some simple lab work or test. No one could explain BFS…well no one except for everyone here. That’s why I can say without a doubt that this site, my friends here and on chat are the ones who saved my life.

Today my twitches are almost gone. They had become rather quiet the last few months for the most part, but after my Tarlov cyst surgery two weeks ago they have virtually disappeared. I wish I had the answer as to what caused BFS to take over my body last summer as well as what has made it slowly calm down. The fact is, I just don’t know with 100% certainty. My theory is that the cysts in my sacral canal were the culprits causing the original twitching in my calf. I am confident that the twitching I described in my journal last September was the result of severe long term anxiety that was finally pushed into overdrive mode by the ALS fear. I know there are some here whose twitching has not slowed even with lowered anxiety. We all suffer from similar symptoms, but I don’t believe the answer is the same for every one of us. What I do know is this: I was twitching tens of thousands if not a hundred thousand times a day when BFS started. This doesn’t even include all muscle jerks and sensory issues I experienced as well. I did not have an EMG, just clinical exams. I have BFS. Not ALS, not MS, not some rare disease previously unheard of…its BFS.

One last thing…I’m thankful I got BFS. It was the last straw, the one thing that made me deal with my anxiety once and for all. That in and of itself is wonderful, but the friendships I have made are irreplaceable and without BFS I never would have known any of you. Because of BFS I also appreciate life like never before. BFS is rough, but good things are there to be found if you take the time to look for them.

Frances
“Friendship is born at that moment when one person says to another, 'What! You too? I thought I was the only one”
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Re: My ONE YEAR BFSiversary!!!!!!

Postby Yuliasir on August 14th, 2012, 1:36 pm

Hi Frances, I have my eyes watering really...

such a great warm story of defeating anxiety...
Thanks, thanks, thanks again.
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Re: My ONE YEAR BFSiversary!!!!!!

Postby mwagner on August 14th, 2012, 1:44 pm

Frances,

Sounds like you've been through hell and back with this, but I'm so very happy you're doing so much better now than before.

Happy BFSiversary! I just passed mine a couple of weeks ago. It's nice when you can put a year behind you. I remember what a wreck I was over this a year ago, and I don't like to look back because it was really a bad time for me. But, I've been so lucky to meet people like you, who have been such wonderful inspiration and support.

Hugs to you!

Mitra
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Re: My ONE YEAR BFSiversary!!!!!!

Postby bobajojo on August 14th, 2012, 3:05 pm

I'm so proud of you Frances! You have conquered BFS both mentally and physically. Its not easy to do but you did it! You are truly an inspiration to so many BFS sufferers. If you are a new twitcher and reading this post, Frances's story and how she handled BFS will truly be a great help to you! -Matt
Over 10 billion twitches since May 2011.
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Re: My ONE YEAR BFSiversary!!!!!!

Postby DonaldD2 on August 14th, 2012, 3:53 pm

I wish I could get out of that state of mind but I'm still struggling with lots of things concerning this "BFS" amongst other things you mentioned.
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Re: My ONE YEAR BFSiversary!!!!!!

Postby Shanny63 on August 14th, 2012, 4:22 pm

Happy anniversay Frances, I echo Matt in saying I'm so proud of u too...and even though u say u were a wreck at the other end of the keyboard in the beginning u always seemed to keep it together...you are a wonderful lady who Has helped so many others along the way with their journey...best wishes and I'm glad to hear your recovering so well from your surgery....shanny :D
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Re: My ONE YEAR BFSiversary!!!!!!

Postby johnnythejet on August 14th, 2012, 4:28 pm

Great story Fran. I always thought you made it through this as well as anyone. Very proud of ya!
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Re: My ONE YEAR BFSiversary!!!!!!

Postby plainslady on August 14th, 2012, 5:57 pm

Thank you all. I don't know where I would be (or even IF I would be) had it not been for this place and your friendships. You all hold a very special place in my heart.

Frances
“Friendship is born at that moment when one person says to another, 'What! You too? I thought I was the only one”
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Re: My ONE YEAR BFSiversary!!!!!!

Postby Wells05 on August 14th, 2012, 9:47 pm

Fran yay miss u so much friend and everyone else! Great post and u are such an inspiration to all! Ash :)
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Re: My ONE YEAR BFSiversary!!!!!!

Postby Ghayes420 on August 15th, 2012, 12:10 am

Love ya Fran! Happy day for us both! Your story is a great inspiration to many people here!
A very proud fasciculator since 8/14/2011. :)
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Re: My ONE YEAR BFSiversary!!!!!!

Postby Wells05 on August 15th, 2012, 8:07 am

[quote="Ghayes420"]Love ya Fran! Happy day for us both! Your story is a great inspiration to many people here![/quote]
Greg u too! now get to Oregon soon! :)
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Re: My ONE YEAR BFSiversary!!!!!!

Postby raindog on August 16th, 2012, 4:24 pm

Frances you are an inspiration , you have proven there is light at the end of even the darkest tunnel. Awesome post and enjoy you anniversary with a drink on me.

And
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Re: My ONE YEAR BFSiversary!!!!!!

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