Am I alone in this symptom?

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

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Am I alone in this symptom?

Postby seventhcandle on October 13th, 2012, 10:29 am

I've noticed lately that as my twitching intensifies and spreads, the quality of my sleep has deteriorated as well, to the point where I need medical help.

When I manage to fall asleep at night, I always fall into a very light, dreamy sleep that only lasts 30 mins - 2.5 hours max. Then I wake up feeling like I hadn't slept at all, feeling unrefreshed, sweaty, and exhausted.

Then it takes another 1-2 hours to fall asleep again and only to end up in another 30 min - 1 hour long dreamy nap. Sometimes I cannot fall asleep at all.

Does this/has this happened to anyone else on a regular basis, where you just don't get any deep sleep at all?
Been on the BFS journey since 6/26/12...

Twitch way do I go from here?

BFS does get better with time. Almost two years in and able to do almost everything I could do before I had this condition. Still twitching away of course...
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Re: Am I alone in this symptom?

Postby mike fla on October 13th, 2012, 11:04 pm

Yes it has happened to a lot of people here. There is a strong tie in to both anxiety and twitching.
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Re: Am I alone in this symptom?

Postby bobajojo on October 14th, 2012, 8:50 am

I went through a few months of this pattern in the beginning. -Matt
Over 10 billion twitches since May 2011.
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Re: Am I alone in this symptom?

Postby johnnythejet on October 14th, 2012, 10:30 am

You are definitely not alone, buddy. Sleep deprivation is a real struggle I understand, and adds additional stress to our already stressful situation. Not fun.
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Re: Am I alone in this symptom?

Postby seventhcandle on October 14th, 2012, 11:24 am

Thanks guys. I don't stress about the twitching at all - I know fully well it's benign. It's the constant, unrelenting sleep deprivation that is killing me.

I was wondering if anyone else has odd sleeping arrangements because of their twitching. This is my nightly ritual, making up the living room couch, putting my head on a beaded pillow so it doesn't jerk too hard, wrapping my body around a body pillow and digging my feet into the couch so I can't feel the toe twitches as much.

The link below is a picture of my current sleeping arrangement:

https://picasaweb.google.com/lh/photo/84lPZHFLo0uERLRAfY2bl7g7sjVKV08axQrgS1Pf_q4?

Sleeping in a regular bed is impossible now.

Maybe I have false hope here, but I am hoping that there is some kind of medication that can help me sleep more normally than this. Maybe I can return to my bed some day.

Does anyone else have these odd sleeping arrangements now because of their BFS?
Been on the BFS journey since 6/26/12...

Twitch way do I go from here?

BFS does get better with time. Almost two years in and able to do almost everything I could do before I had this condition. Still twitching away of course...
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seventhcandle
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Joined: August 2nd, 2012, 2:11 pm
Location: Pleasanton, CA

Re: Am I alone in this symptom?

Postby Cheddar on December 2nd, 2012, 11:54 am

This pretty much describes my recent sleeping problems to a T. I also feel as if I can feel the twitch travel from the top of my spine to the point that it reaches. I now have to use some sort of sleep aid to at least get a few hours but it is still a very light sleep for me.
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Re: Am I alone in this symptom?

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