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What Worked for Me (15-year BFS-Recovered)

PostPosted: February 27th, 2013, 2:08 pm
by Rainyjane
I am now recovered (after about 13 years, the latter years being very, very good peaceful years too!), now only an occasional twitch...But here's what got me through it:

1 Valium - there is no way I could have done without the few hours of relief it gave me!

2 Very Hot Baths - So hot I could JUST get in them...to mellow out the muscles so the twitches did not "pound" into the muscle. Can't say how helpful this was. Mellowed out my muscles.

3 Stay OFF the Internet - No research on the internet. This includes THIS forum. Yes, I have actually gotten quite a few more twitches in my day since I've been on here reading a few posts! lol. My doctor said to NEVER do it and he was right!

4 Get on with life! - No 1 at helping me get over this...being very BUSY socially, at work...have fun, go out, get your mind off it (Seems hard at first, but you just have to get on with things.) My wellness depended on this! Eventually, I acted like I was back to normal and I GOT back to normal!

WHEN ALL ELSE FAILS - Emergency measure - sit under the shower so you can't notice the twitches as much anymore! lol

Now I'm going to get off this forum, and I may check back in again in a couple years! :) Good luck to you all! Big hugs. x

Re: What Worked for Me (15-year BFS-Recovered)

PostPosted: February 27th, 2013, 2:13 pm
by BFSBurger
15 year BFS Recovered

:D :D :D :D :D :D :D

only an occasional twitch

Awesome!
I've had occasional twitches my whole life. As does everyone.
Congrats! :D
I can't live without the hot baths.
Adding Dead Sea Salt quadruples the therapeutic benefits for sure.

- Burger

Re: What Worked for Me (15-year BFS-Recovered)

PostPosted: February 27th, 2013, 2:27 pm
by Rainyjane
Argh, I've had quite a few more today since being on this site! But nothing too bad. There is hope for you! There is hope for everyone. That is why I came back on here. Give it time. Take everything you've learned from this site...and get off it! lol. It's not good to dwell on our twitches. It's the worst of things, in fact! xxx

Re: What Worked for Me (15-year BFS-Recovered)

PostPosted: February 27th, 2013, 2:28 pm
by Rainyjane
I'm going to go get some Dead Sea Salt!!! For sure! :) WHere do you get it?

Re: What Worked for Me (15-year BFS-Recovered)

PostPosted: February 27th, 2013, 2:29 pm
by johnnythejet
Rainyjane wrote:Get on with life! - No 1 at helping me get over this.

Yes, this is the tried and true method necessary to beating BFS. I'm glad you beat the anxiety beast and can enjoy life like the rest of us. Thanks for sharing your successful methods and showing newbies how to move past the dark days.

Re: What Worked for Me (15-year BFS-Recovered)

PostPosted: February 27th, 2013, 2:30 pm
by Rainyjane
Crap, I don't know why I wrote "I am NOT recovered"...I do consider myself recovered! :S

Re: What Worked for Me (15-year BFS-Recovered)

PostPosted: February 27th, 2013, 2:33 pm
by BFSBurger
I agree with the Valium too.

I think the main idea is that we are easily stressed people. And that's fine. A lot of people are high stress. However, we have some sort of malfunction in addition to that.

This means:

High Stress Person 1 Experiences Long Term stress and never has a twitching problem
High Stress Person 2 Experiences Long Term stress and has a twitching problem

Whats different between the two? We don't know. Some sort of trigger. For some genetic. In my case, probably destroying my body with toxic medications. Cellular damage well documented with AZT. Probably effectively advanced myself from a normal stressed person to a stressed person with malfunctioning cellular activity.

So Valium ... or some other medication which allows the mind to *STOP THINKING* for awhile ... almost seems imperative for some people here.

It isn't easy calming your mind. Probably one of the hardest things to do. Its literally a minute by minute thing. And it sucks that we have to be so good at it or else we experience disability.

There are plenty of people out there who are 10x more stressed than I have ever been, and they're not dealing with this. So that beloved "third element" .. that "mystery factor" ... is what sets us apart.

We've got to manage it. And hope in time that the *propensity* towards agitation decreases. Hope in time that the *resilience* to stress increases. So that a stress event doesn't cause problems physically anymore.

Its good to see a recovered BFSer stating the very things which some of us here have already found, help. :)

-Burger

Re: What Worked for Me (15-year BFS-Recovered)

PostPosted: February 27th, 2013, 2:36 pm
by Rainyjane
OH, I know, I meant to write "I am NOW recovered.." lol. :) Yeah, the Valium physically decreased my twitches. I guess it may not work for everyone... x

Re: What Worked for Me (15-year BFS-Recovered)

PostPosted: February 27th, 2013, 2:39 pm
by BFSBurger
Rainyjane wrote:I'm going to go get some Dead Sea Salt!!! For sure! :) WHere do you get it?

I went balls-to-the-wall on the dead sea salts LOL ... i got the best I could find. I am sure you can find it for cheaper online. But google this: cleopatras choice dead sea salts.
Its expensive there, but I have two 20lb bags right now and live by that stuff. Its unbelievable the effects.
Why is it better than Epsom salts or just plain hot water?
Because it contains Bromelain. Something well established as a sedative. It seeps into your muscles and you feel a calming that literally goes to your core.
And I even feel it the next morning while eating breakfast. It lingers that long for me.
I always do these things the night of my workout, and the 2 or 3 days after the workout.
Right before bed. Crawl out of bath, into bed. Its awesome.

You can edit your first post by the way - im sure that first line is going to make many people very happy if its corrected! :D

-Burger

Re: What Worked for Me (15-year BFS-Recovered)

PostPosted: February 27th, 2013, 2:46 pm
by BFSBurger
As a side note - I am surprised Marijuana doesn't help with BFS. But one guy on here told me he smokes it religiously and it does nothing. I would tend to disagree. I think it may not calm your muscles directly. But it will "turn off your brain" and allow you to stop anxiety. I wonder ....

-Burger

Re: What Worked for Me (15-year BFS-Recovered)

PostPosted: February 27th, 2013, 2:59 pm
by Rainyjane
I'm SO going to go get those bath salts!! :)

Yes, I started out LIT UP LIKE A XMAS TREE...the twitches were EVERYWHERE. I was misssserable. Now most days I never notice a twitch! It took awhile! But you CAN recover from BFS. :)

Re: What Worked for Me (15-year BFS-Recovered)

PostPosted: February 27th, 2013, 3:11 pm
by Rainyjane
Is it the Adovia Muscle Soak you use on Cleopatra's?? :)

Re: What Worked for Me (15-year BFS-Recovered)

PostPosted: February 27th, 2013, 6:10 pm
by BFSBurger
Its this one: http://www.cleopatraschoice.com/deadseasalts-20lbs.html They also have 10lb bag. You are supposed to do 2 full cups of salt each bath. So the 20lb bag ... at 3-4 nights a week .... lasts me about a month or two. Depending.

Re: What Worked for Me (15-year BFS-Recovered)

PostPosted: February 28th, 2013, 8:42 am
by Fabiola
But valium?? That is very strong, isn't it?? There is no another medication?? :(

Re: What Worked for Me (15-year BFS-Recovered)

PostPosted: February 28th, 2013, 8:59 am
by Fabiola
Have you ever tried with coenzyme Q10 ? I just meet a new neurologist last saturday who told me that had a pacient in the past with fascics and cramps and that it worked for her. So, I'm trying too together with your other suggestions.

Fabiola