BFS: Struggling with Annoyance

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tearsneverfall

Well-known member
I am so sick of this crap I could scream. Not because I am afraid of ALS but because of the simple annoyance factor in it all.

Today my right hand feels so clumsy it's not even funny. This has come and gone so much over the past 8 months.

I spoke to Carrie on the phone last night. She is a fellow BFSer that just so happened to be local and we talked on the phone about our BFS.

I jinxed myself because I told her I hadn't had any trouble out of my hand in a while. I can still type just as fast and do everything but it feels so awkward and so fatiqued. It just gets sooooo old dealing with it everyday.

Today I have barely noticed any twitching but my hand is driving me nuts. I am doing a ton of typing today and I allowed myself to sleep on my stomach last night with my hands balled underneath me and I always pay greatly when I do that.

I can even see whay JG is going nuts even after a normal EMG because it is such an annoyance to live with this! Fear or no fear it's a huge annoyance.

Okay I vented, I'm done!

Thanks for listening,

Karen
 
Darn, I was hoping you'd be on an 'upswing'! I totally hear you; I get the clumsy feeling on my left side. I try my best to attribute that to carrying my kids too much.

BFS sucks. One thing to remember...we're also getting older, and we're starting to creak and break down. Watching the Olympics over the last weeks really made me realize 'we're not young anymore'. It really hit home when the gymnastics commentators kept talking about how 'aged' the 26 year old gymnasts were. Only 26! Heck, I'm only 30, but now I absolutely see how age wreaks havoc on our bodies--even when we're still relatively young in the grand scheme of life. Plain and simple, things start breaking down, and we have to adjust accordingly.

Did you watch "last Comic Standing" this last season? John Heffron, who was the winner, based a ton of his comedy on turning 30 and no longer being able to function like we did when we were kids. He joked about pains and bruises that we can't fathom where they came from. He also did a good one about how when we were kids, sliding down the stairs in a clothes basket seemed like a good idea. He said: 'I dare all you guys over 30 to try that now--not such a good idea anymore, huh?'

I'm sure it's not all BFS. Many of our aches and pains and fatigue can be due to plain old age. We're just bigger worry warts than the rest of the population--of that I'm pretty sure!

Take it easy on yourself, and just watch out for little things like your posture and facial expression. If your body and face are in a slump, you'll definitely feel it. I'm a terrible sloucher at the computer and when I'm relaxing. I notice when I keep my self 'more picked up'--I feel better.

It's great to let off steam--and you definitely just did that! Good job!

By the way--to get your mind off some of this crap and onto something fun, the new season of 'last comic standing' starts tonight (right after fear factor--which believe it or not, my three year old loves to watch--ugh!). Have a margarita or a glass of wine and enjoy the laughs!!

Amy
 
Karen - I totally understand how you feel!!! I hope by now you are feeling better. I'm sure we all have our good days and bad days, but we need to remind ourselves everyday that this is a benign situation. The twitches are annoying as heck, but that's all they are - annoying! Hopefully, one of these day, there will be a medication for BFS. We can all be in the commercial!!!
 
Karen, I fully understand the frustration. The body twitches don't bother me nearly as much as the clumsiness and tightness in my right hand and wrist. Mine has been present most of the time since this all started in Jan. My right hand also feels "trembly" for at least a period eveyday and usually a couple days a week certain fingers will twitch or "tremble".
Anyway, you are not alone in this and your vents are our vents. Vent on, when ever you need to.
I'm not a doctor but the running naked in the woods on LSD possibly is not the answer, but if you try it and it works let us know. :LOL:

John L
 
Karen-

Today, it's my left leg. Yesterday, it was constantly tight abdominal muscles...all throughout the week, I have had far more tremors than usual throughout my body, particularly when I try to get muscles to do something they haven't done for a long time (like this morning when I put my right thumb up and it did quite a dance all around). Right now, I just feel like just about every muscle in my body is extremely fatigued, or not getting/storing the right nutrients, and they're just not "happy".

But I am. I've had a rough patch of a few days, but getting back on here in the company of friends with ups and downs has been remarkably therapeutic, and I truly believe that I am being reminded that quality of life starts with how I respond to its challenges, and ends with my faith in God and his plan for me. I know we are all of varying degrees/types of faith, but a simple reminder that God will not present us with challenges we are not strong enough to overcome was more than enough for me to get past a rather down week last week. I WILL have many more new symptoms, and many more swings - high to low and everything in between. I'm flat out not going to waste my time and the gifts I've been given - a wife, two beautiful kids, the capability to help others and make a difference, etc. - on stewing about this annoying syndrome. This is my cross to bear, and I will do it with a smile on my face, and with resolve not to let it consume me. Most of all, I refuse to spend any longer pining for a cure or waiting for the glorious day when my symptoms simply vanish - they may never, but I am already CURED as this thing will not kill me, and now it will not overcome the life I've been blessed with and the spirit which I've been asked to live every day with. I hope many of you will join me in simply saying "NO" - the odd sensations, twitches, mood swings, muscle aches, etc. may be here to stay, but NO - I refuse to let them take over my mind, my life and my happiness.

I love the evolution of this site, as I have generally seen the overall feel change from one of fear and questioning each other to one of strength, courage and mutual support as the wealth of information continues to grow and more diverse opinions and facts are shared. I wish all of you a speedy recovery, in whatever form it may come to you.

JG
 
I agree 100% with you. My faith is the only thing that can get me through when I am getting afraid or anxious about all the possible but already ruled out diagnoses. The enemy would like nothing better than to have me crawl in a hole, fearful and forgetting about my Lord. My strength can and does only come from Him, the Lord that is. Prayer and getting into the Word-that is what helps me most during those times.
Thanks for the encouraging words.

Lisa
 
JG,

I think you touched on a very critical point in you post, and that is the power of determination and the will to fight back. For me, it took the realization that i was hurting more than myself by allowing BFS to rule my life. I was doing much harm to my wife and two year daughter. That realization lead to a hardened resolve to fight back, and regain my life. That was my first step to getting better emotionally eventhough my physical sxs didn't change. I no longer allow this crap to rule my life. I now just let the wife do that, like before BFS ;) .

Keep up the fight,

Gary
 
Exactly!! My sister-in-law recently gave me one of those yellow bracelets from Lance Armstrong's "Live Strong" cancer campaign. It's a great reminder to do exactly that: Live strong in the face of life's challenges.

Lately, I've been getting a little frustrated by some posts on this board. Not in a negative way--but because I feel helpless not being able to 'pull' people out of the slumps they get in. I can only hope my words of encouragement help a little. To each his own journey.

Don't get me wrong, I know BFS is a pain in the tush--and can be extremely bad at times. This site is the best place to come to vent and seek comfort. I'm sorry though, I just can't fathom that our 'pains and fatigue and twitching' come anywhere close to what someone going through chemotherapy is feeling. There are thousands of other illness out there--and BFS is pee-wee-league for sure.

The mental battle is the key to combating our mess of symptoms. The huge point being that our 'mess of symptoms' isn't that bad in the grand scheme. So why is this mental battle so tough for so many? Anxiety and worry (to the point of self absorption) gets in the way. Everyone here is or has been guilty to some extent. We are all going to die someday--so everyone needs to find a reminder on how to 'live' and 'live strong' to boot. I love the fact that I can spend 'therapy' time on this site, and then when I walk away from my computer, I give my full self to my family and friends--using my faith and mental strength to completely ignore my symptoms. Sometimes on a bad day, it can feel like I'm acting--but at the end of the day, I'm so much happier and I did so much more than if I just gave into the 'rut' and let myself sit and worry the day away.

Stay strong everyone--and do whatever it takes to fight through your symptoms, and enjoy your life!

Amy
 
Amy,

don't get too burned out, you're one that will carry the torch for the next generation (every 4-6 months) of sufferers. My generation is fading fast.

Take care,

Gary
 

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