A REALLY bad night!

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

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A REALLY bad night!

Postby solarisle on November 4th, 2002, 4:15 am

It's 4 AM and I just can't get any sleep - my body feels like I am plugged in! It's been almost two years since the onset of BFS and it just keeps getting worse. I am now at a point where I just can't stand the constant twitching and major "thumps" that hit certain large muscles.

My symptoms started in my calf's and feet with mild, infrequent twitches. Over time they became constant and have spread to my thighs, forearms, triceps, back, shoulders, and now I have them in my face. I seem to go for months at a particular level and then BAM! - they start somewhere else. It's as though I go through phases where it stalls for a period of time and for no apparent reason it just continues to progress.

I've been to some very reputable neurologists here in South Florida. Even though they are familiar with BFS, I sometimes feel like they have no idea how difficult it is to cope and manage this "benign" condition.

I started taking a mild dosage of Neurontin but the side effects are brutal. I will probably try to work my way through it as I just can't seem to get any relief. I can't sleep now without some form of a sleeping pill.
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Postby Arron on November 4th, 2002, 10:46 am

hey solar, hang in there. We all have good times and bad times but keep in mind, it could be a LOT worse. I would ask for anopther kind of med, such as Xanax or Ativan to help calm your nerves. Just remember, the more you stress over it, the more you feed this stuff, which makes it all worse. My face has been twitching lately and just won;t stop. That drives me nuts too but after seeing a couple of those medical shows on Discovery Channel, I feel like I am lucky to have what I have compred to what other people get in life. You have to put this into perspective and stay calm. Good meds will help those times where it is harder to do. It really sounds like your meds just aren't doing it for you, not that you need them everyday but there are periods (weeks and even months off and on) where you might need some med help during the day and night on a regular or semi regular basis to get over the anxiety and stress you are going through. Hang in there :-) You'll be OK
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Postby Davidd on November 4th, 2002, 2:09 pm

I agree...you should try to find a med that will help you relax and help you sleep. I went for an extended period of time where I was unable to sleep more than 2 hours a night so I know how you feel.

AND, if it makes you feel any better, I went to sleep at midnight last night, woke up at 3AM and that was it! Not fun at all. Oh well, let's hope tonight is better.

--David
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Postby tlotoxl on November 5th, 2002, 4:29 am

I'm having a bad day, too. I did it to myself, I guess, by drinking too much last night when I knew I had to get up early -- but today my shoulders and upper arms are twitching pretty much nonstop. Aghghgh.. Give me a hangover but take away my twitches!

Still, with the exception of today, my BFS symptoms have improved steadily over the past couple of months after peaking in June, around two years after it all started. Don't let it get you down.
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