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What helps you with BFS symptoms and worries?

PostPosted: January 3rd, 2004, 2:54 pm
by SusanSid
Hello all,

I thought I'd start the New Year out with 2 basic questions for all of you, as I really am interested. For all of us BFS sufferers:

1. What do you find helps your physical symptoms of BFS?

2. What do you find helps you with the emotional component of this condition? For example what helps you keep the worry from getting out of control?

I know this sounds elementary, but I think we can all learn from one another if we share our successes.

Thanks ahead of time!


PostPosted: January 3rd, 2004, 3:55 pm
by sarahtonin

A couple of weeks ago I really thought I had this thing beat - my twitching was down to virtually nothing, but unfortunately it's back again now, though not nearly as bad as it was.

My main things to deal with the twitching are magnesium supplements, a lot of sleep and lots of water - if I get slightly dehydrated (such as on new years day after a rather heavy night :) ) then the twitching is much worse.

I can't say that I've dealt with the psychological aspect of it yet but I try to say to myself that living in a state of constant fear is almost as bad as actually having something physically wrong so I might as well just get on with life. It works sometimes!!

PostPosted: January 5th, 2004, 9:43 am
by garym

I take neurontin 600 mg/three times daily and it helps with the muscle pain. I guess i have extreme exercise intolerance, because I can't do anything without muscle pain. Hasn't helped much with the twitching. I also try to get plenty of sleep. I do notice a big correlation between lack of sleep and increased symptoms.

As for emotional help, that's a tough one. I just try to stay positive and not worry. I keep reminding myself that two drs. have said no als. I have to say it is getting a lot easier to believe as time passes.

Good luck,

PostPosted: January 5th, 2004, 12:48 pm
by Dale
Personally, I can't answer your two questions separately. In my case, the emotional component DIRECTLY impacted my physical symptoms.

I'm going to sound like a broken record, so some of you may want to stop reading now...

I tried taking supplements (after discussions with my GP) and found little to no benefit. I have become very aware that taking supplements may help with one symptom/problem, however other problems tend to crop up. This has only been my experience. I now take a very balanced approach. For my meals I try my best to eat the recommended portions (starch, fruits/vegetables, protein, milk, fats/oils) from the Canadian Food Guideline. I also exercise daily in which I incorporate aerobic & weight-training. Fortunately I have never had problems sleeping & always get 8-9 hrs a night. I do take a multi-vitamin daily.

The most important aspect (and the most difficult) to controlling this condition, in my case, was mentally. I was very fortunate to have a fantastic GP & Neuro. Their reassurances really helped.

I did however still have doubts. I was able to understand that I trusted my Doctors & believed them, but I was still really worried. I did a lot of reflecting over several months & realized that I was obsessing over this condition but more importantly that I was being selfish, I was only thinking of myself. I realized just how lucky I was. A great wife, two wonderful kids, a supportive family, a good job, roof over our heads & groceries in the fridge. I really look at things differently now. I have much to be thankful for - just getting out of bed in the morning & being able to walk - look at Christopher Reeves.

I no longer focus on my twitching and muscle aches. I have resigned myself that I have this & it will most likely be a part of my life forever, albeit a small one - that's my choice. Once I realized this and started focusing my energy into fostering relationships with the people who really mattered to me, the other stuff didn't or hasn't bothered me nearly as much.

There are many times on this BB that I make sarcastic comments. My intention is not to start fights but to downplay this benign condition. If you have been diagnosed with BFS, be thankful, it could be a whole lot worse. Find out what is really important to you & focus your energy in that direction - BFS just isn't worth it!

Good luck to all of you.


PostPosted: January 5th, 2004, 2:47 pm
by garym

Good post.


PostPosted: January 5th, 2004, 3:40 pm
by Jenn311
I'm with Gary...great post Dale. Ditto to that!

PostPosted: January 8th, 2004, 9:04 pm
by Floater
klonopin 1 - 2 mgs

PostPosted: January 9th, 2004, 8:39 pm
by Nole
I dont think about them or focus on them at all anymore. I keep busy and active...

PostPosted: January 10th, 2004, 4:10 am
by twitchaholic
Sleep does wonders. Getting a good amount of sleep not only keeps you healthy but there is no way you can worry whilst you sleep. It's waking that causes some trouble. When I really notice the twitching I move around and do something like walk to take my mind off of it. Busy and active, like Nole said. Hang in there (I say this as my left eyelid seems to have a mind of its own). Better go for a walk!

PostPosted: January 12th, 2004, 2:55 am
by SusanSid
Thanks to everyone for the postings! I really enjoyed reading them and related with you all. I think many are in agreement that the worrying is the worst part of BFS. That's the part I struggle with the most.
I do want to mention that sleep, staying hydrated and lowering my stress level helps a lot. Exercise makes me feel better but can cause the twitching to increase. But I think my heart likes the exercise, if it has a choice in the matter..ha ha.
I was on a short vacation last week visiting my sister and she mentioned that if she could do anything over again (she's healthy) she wished she didn't spend all the days, years worrying over things that never even happened. I thought about it and realized that I have spent the past 2 years worrying and preventing myself from truly enjoying the moment or my family.
Thank you all for helping me realize this many of you have shared this and are probably are thinking....good one Sue, it's about time! ha ha.
Perhaps this will be a good year for many of least I'd like to try and make it that way!

Sue :wink: