Information about how to manage or reduce the severity of BFS symptoms

Moderators: JohnV, Arron, garym


Postby amy_twitch on August 28th, 2004, 1:16 pm

For those of you who posted in the online journal for July...let's continue our updates to see how we're faring over the last month.

Anyone who wants to join in the journal...just logging symptoms from month-to-month as well as any new doctor updates, medicines, etc... please join in!

August 2004: Over the last month, my twitching is still drastically reduced from where it was only a few months ago. July and August have been very good--no hotspots or buzzing at all. Just a few thumpers here and there. August has also brought me relief from the bouts of fatigue I experienced in July. I have not needed to use any meds at all over this last month, except for some antibiotics for sinus problems. I recently went hiking in Lake Tahoe, and I definitely feel the effects on my left side more than my right. I still have bouts where I feel like my left leg weighs a few pounds heavier than my right--odd, but getting familiar to me now.
All in all, August has brought much needed symptom relief. We'll see if it stays that way come Sept. I'm staying positive and just riding it out and enjoying my life! Til next month...

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Joined: June 13th, 2004, 8:52 pm

Postby garym on August 28th, 2004, 6:19 pm

august 2004:

August was a month of no surprises, just more of the same. I have experienced an increase in twitching in my butt and back, and my legs have been twitching a ton. On the bright side, I haven't had as much fatigue or shoulder pain, which has been really nice. I passed the fourteen month mark this times early on, I didn't give myself a chance to still be walking at this point, but surprise, I am :lol: ! Also just passed the one year mark since my first emg.

So overall, August wasn't that great, but it wasn't that bad either. And from where I've been, I'll take not bad!

Posts: 1893
Joined: August 23rd, 2003, 1:24 pm
Location: Texas

Postby puggriffey on August 28th, 2004, 6:38 pm

I was hoping this would come back...

August 2004

A mixed bag for me. The month started out wonderfully. Lots of energy - very few symptoms...I rarely thought about BFS, twitches, doctors, etc. I feel bad that it even kept me from checking in here from time to time, as I was hoping to write this chapter of life off and move on.

Sometime in the middle of the month, I had a run of VERY late nights and a few stressful days at work/home mixed was weird, I could almost feel myself getting pulled back into this cycle like water going down a drain...within a few days, I was twitching constantly, and I began to experience a host of new symptoms that I had never experienced before - little tiny patches of "heat" on my skin all across my body, "deep down" abdominal twitching or tremoring (can't tell), which reminded me of trying to do that last stomach crunch when you're too tired, and most of all - awful muscle fatigue. My muscles ache all over after I do even the simplest things, like shaving or brushing my hair. The other day I went bowling for the first time in a couple of weeks - I am a league bowler and bowl maybe twice a wek almost throughout the year. For the next 2-3 days, my arm was so sore and felt almost like it was going to fall off. This week - my left leg feel "weak" again...still walks around fine, still can stand on it, etc. but it sure feels more wobbly/weak than the right. Every now and again I take one of those "weird steps" - doesn't feel right, but nothing happens.

In general, right now I almost think this thing has moved into a new phase for me. The twitching is still not overwhelming and constantly prevalent like it was, but my muscles in general are not feeling hot at all. I feel weak, wobbly and sore - like I'm 80. I've seen my GP and neuro again this month - both confirmed reflexes and strength tests still look good, both feel I'm still healthy, and I believe that too. I just have to remind myself that this thing is weird, I can't "solve it" no matter how hard I try, and life goes on...I better darn well enjoy it, and I plan to.

Interesting side note...I've been taking Aleve for what I believe is tendonitis in my left arm (the docs think it is anyway). Interestingly, I HAVE noticed my twitching does subside for the first few hours after taking it - too many times to just be coincidence. I don't plan on popping ALEVE for the rest of my life, and the twitches don't go away completely, but it is interesting. I think inflammation (or lack thereof) is playing a big role in this for me. I wish I knew where (neck/back maybe?)

I'm really looking forward to posting an awesome September journal - thanks for bringing it back for Aug.

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Joined: May 29th, 2004, 11:29 am

Postby Brian_B on August 29th, 2004, 1:44 am

not much has changed really. but for the past year it hasnt really changed, hasnt gotten any worse nor any better.

though getting close to 3 years since it started I am getting better at trying to ignore it.
"The only thing necessary for evil to triumph is for good men to do nothing"
Edmund Burke
Selfless giver of time
Selfless giver of time
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Joined: October 11th, 2002, 9:02 pm
Location: Southern Illinois

Postby Ginlyn on September 13th, 2004, 1:22 am

I thought things were getting better. I swear I was relatively twitch free, but then IT began....

I felt them in my calves (left one worse than right). I actually watched my calf this time, and it freaked me out. Like some invisible hand poking me.

Anxiety level high from this.

No weakness, or anything else like that. Actually calf muscle looks bigger from weight lifting.

Going on sixth months now.
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Joined: June 13th, 2004, 3:08 am

Postby dande5 on September 21st, 2004, 6:40 am

Hi all,

Hi August seemed to go pretty well, the worst twitches seemed to calm down, I was not totally consumed by them or thoughts of what if, even went to Hersehy Park with the kids and 2 other families walked a day and a 1/2 and really had no noticable trouble. Been continuing with chiropractic treatments.

Just passed 3 mnth mark this Sepember 13 and felt fine at visit. A few days later feet twitching began and sporadic all over twitching again...getting frustrated again but trying not to get too crazy.
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