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Veteran with some thoughts

PostPosted: May 18th, 2014, 9:24 pm
by DoubleD
I don't post much anymore but I do lurk around from time to time and try to help out and send some personal messages and post here and there. I am going on my 8th year with BFS and just want to share a few things that I have learned over the years.

First my credentials. If you look up any of my first post I was a mess. I believed I was dying for sure. To be fair to BFS I was already a card-carrying hypochondriac before this even started. Do I believe that my anxiety brought on BFS? Who knows really. I have logged more time on the Internet trying to figure out what I had and why I had it. I've done research on herpes Symplex and BFS, other viruses and BFS, pesticides and BFS, stress and BFS, food and BFS and of course just bringing it on yourself BFS. I I don't have the answer for why I have BFS but at this point in my life I don't care. Once I got past the crushing fear of death of ALS and owned my BFS has a real disease then things got better for me. But then I went through a couple years of trying to figure out why I had it and can I get rid of it. That also consumed me. Then one day I just figured it was time to live life. It's the old quote from the movie Shawshank redemption "get busy living or get busy dying" that really affected me and change me. It was an easy of course. It's not like it was overnight I got better. None of this started overnight so it was going to take time for me to finally get through it. It wasn't going to leave overnight . It was a slow process but it was progress. Yes I had some lows along with the highs, but I just kept punching till I broke through

Fear took so much from me that I will never get back. I lost the first two years of my daughters life being bedridden and consumed with the fear of ALS. doctors appointments and thousands of dollars wasted time. I truly understand and remember all the fears and questions that I had that all you have also. "Is this muscle wasting?" "I have a dent here." " is one forearm is smaller than the other"?I really asked all the same questions. It is an all-consuming journey. Unfortunately like many veterans here we don't have all the answers , just reassurance sometimes. We can sympathize and empathize but it's up to you finally believe us and start to move on with your life.

You have to do whatever it takes. Like I said earlier for me it was owning it and excepting that this is the disease that I had. And now I live with BFS. I can't do all the things that I used to do and sometimes that bums me out but I accept it as the cards that were dealt to me. Do I still have fear? You bet. I renew my hypochondriac card yearly. :) But I continue to move forward.

Do whatever it takes to get better . If you have to write some inspirational things down on the card and carry with you to constantly look at when the fear sets and then do it. Join a gym. Ride a bike. Go for regular walks. Jog, go fishing, whatever you do make sure you're moving forward I am convinced that is the biggest key to getting past this. Get a healthy structure in your life and get your body moving. Get the blood flowing and pumping through your body. Put down the computer the iPad and turn off the Internet and go outside. Trust me.

I'm sorry but long ago I decided to purge my mind of all the medical jargon that goes along reading EMGs, MRIs, blood test and all the other host medical stuff. I'm not taking a shot at those that do. I think that's awesome. Continue to look to them for your answers to those questions. But for me it really is this simple. A clean clinical exam by a neurologist is all you need. If they say BFS and not ALS then BFS it is. An EMG is just icing on the cake. Get one if you must but get only one. You got the golden ticket.

I heard a new quote the other day that I just love. I've never heard it before but it is my new mantra.

"Life is not a journey to the grave with the intention of arriving safely in a pretty and well-preserved body. But rather, to skid in broadside, thoroughly used up,totally worn out, and loudly proclaiming .... WOW what a ride.”


Re: Veteran with some thoughts

PostPosted: May 18th, 2014, 10:36 pm
by virginiasteve

Just checked in for the first time in a long while! Glad I did...What a great Post!

Same on my end after 6-7 years...time to continue to move forward!


Re: Veteran with some thoughts

PostPosted: May 21st, 2014, 1:24 pm
by nrwtwitcher
"but I do lurk around from time to time and try to help out and send some personal messages and post here and there"
and that ist so important for me and other newbies. Your always find calming words and you also have helpfull advises. Thank you DD for being here. Please do not stop it!

Re: Veteran with some thoughts

PostPosted: May 22nd, 2014, 4:09 pm
by hpc
What a super post! Thanks DD.

I too am a long time twitcher - 10/11 years. I had a 'relapse' I guess early this year. It was like I regressed by a decade. I was (am) sometimes consumed with scary thoughts, I check myself constantly, I am delighted when the weeks go by and no noticeable progression. I drive my sister (a doctor) crazy with phonecalls looking for reassurance. It's so scary to me that my mind can do this again all this time later (I had a clean neuro visit with emg in 2004).
I try to completely distract myself when I feel myself 'going off on one' - as you say DD put down the laptop ipad whatever and get outside. When you clear your head you feel a 1000 times better and get perspective.
Some days when Im busy in work I'll suddenly have the thought 'wow I haven't twitched much today' then - bam... a twitch!!
It can't be a coincidence that a huge number of us on here seem to suffer with anxiety...what do you think??
The best advice someone gave to me was to 'Look outside yourself'. There is a tendency for me with this BFS to self obsess.
Good luck to you all!

Re: Veteran with some thoughts

PostPosted: May 23rd, 2014, 8:53 am
by DoubleD
Anxiety plays the BIGGEST role in BFS. That is a question that is not in doubt in my opinion. To many people, including myself, say "When I am busy or getting away I feel better" or "I am not twitching when I am busy"

Twitching should not scare us. Thats hard to accept but its the truth. With als someone would have a dead or dying muscle way before the twitch. twitching in als is a distress signal to the brain saying I need nourishment. Its an SOS AFTER death is occuring. In als the twiching gets slower not faster. All twitching is in BFS is a hyperactive nerve making the muscle fire. It gets faster and slower based on anxiety, use, diet, sleep.....

The problem is when you have muscles firing in multiple places is that it causes body wide fatigue, cramping, tightnesss....which makes us think we have something sinister going on. Think about it. When the muscle is twitching it is in motion. Imagine walking 10 miles. your are going to be sore, tight......PLUS with anxiety the muscles are ridgid so they are moving against force. Kind of like a tight spring.

getting massages, warm baths, yoga, working out has helped me a ton


Re: Veteran with some thoughts

PostPosted: July 21st, 2014, 8:06 am
by joshi
I think that many of us who have other symptoms than twitching have a sort of degree of myopaty.. for me for example twitching is not a problem but are all the rest of symptoms and i can say tha after 8 years of having it whatever it is it is progressing, slowly but progressing. I can still do everything, i go to the gym, i can run and do a normal life but with all my list of symptoms that are far more widespread and far more than when it all started 8 years ago..

Re: Veteran with some thoughts

PostPosted: July 22nd, 2014, 1:30 am
by Red Raider
Thanks DD for all you have done! You have help me personally at my low point continue to drive on and raise the bar brother. Awesome quote by the way I might steal it if you don't mind?

Houston take care man.

Re: Veteran with some thoughts

PostPosted: September 20th, 2014, 7:55 pm
by LKP1231
I just read this as a new twitcher and it gives me hope as I await the serious tests. Thank you for posting.