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

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Postby fabfab on February 19th, 2005, 1:04 pm

Hi there,

Since a few days, I am soooo tired. I mean, I am always sleepy. I have the feeling I could go to bed anytime and sleep right there - it's just that I don't. Maybe I'm just too nervous. The only time I don't feel sleepy is early in the morning and late at night, just before going to bed. Then I fall asleep quickly, and wake up early in the morning (too early ?), without any interruption. But that doesn't tell me anything about my real sleep quality. No other symptom so far, except bfs ones of course. I was wondering if any of you had already gone trough this, and how did it stop - if it did. Could this be bfs related ? :?
Thank you very much -
"Interestingly, according to modern astronomers, space is finite. This is a very comforting thought-- particularly for people who can never remember where they have left things. " Woody Allen
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Postby Ish on February 19th, 2005, 9:36 pm

I was wondering about that myself. I am excruciatingly sleep by 9 am. and it lasts all morning. Eases off around noon and comes back at 2pm, lasting until 6. I've taken to taking two naps a day, and it isn't enough.
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Postby DeeDee on February 22nd, 2005, 8:56 am

I have had increased fatigue since the onset of the BFS. Initially I thought I had a virus. I had diffuse muscle pain and fatigue. I cannot stay up late anymore. There was a point where I went to bed at 7-8 p.m. Now I plan all of my activities for the early part of the evening.
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Postby Roger G. on February 22nd, 2005, 6:32 pm

If you plan all your activities around being tired,you WILL be tired.If you plan on naps you WILL take naps. You must reverse the cycle :!: You MUST get into some sort of exercise activity,I am sure this will be of help. start slow,but do not give it, up it takes time :!:
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Postby Greg A on February 25th, 2005, 1:27 pm


I am in my early 40's, and started having twitches about 4 months ago, (Dec) after a month or two, they were so freaquent and severe, I went to the docs (who sent me to a nero doc) and had all the tests (emg, mri , bloodwork) and everything is clean (thank god) Dr. said I have BSF.

The 2 major sysmptoms I had and still have are twithching all over my body (sometimes single ones, sometimes along time in 1 spot, sometimes hard, sometimes soft), they vary from day to day, sometimes almost just a few a day, but the main reason I went to the docs was my fatigue, always feeling run down and tired, sometimes just my arms or legs, or sometimes my whole body feels run down and always drained and don't feel like doing anything.

I was wondering too if anyone else has (or had) the fatigue part of BSF symptoms, and if it ever goes away, and how they delt with it (suggestions). I am learning that different people have differnt types of sysmptoms and different severitys, like I don't have any cramping or muscle pain, but am very tired and fatigued, and know noticing over the last few days that I get the shakes and trembles a few times during the day.

Also, Thanks to everyone on this board for thier input and advice. this board is a real insperation and pick me up for people like me who have BSF, it really helps to know I am not alone!

thank you in advance.

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Postby stevepaul on February 25th, 2005, 4:17 pm

Hello Greg.

I’m going to repeat myself here as to why people suffer from fatigue. If you think about it, you have persistent muscular activity in the form of twitches. Now everyone knows that muscles cannot be worked indefinitely, sooner or later they need time to rest at which point your brain tells you that you are tired. Unfortunately the twitching continues, and in a lot of cases even during sleep, so you end up feeling permanently tired and drained. I would like to bet that not many people with BFS/PNH where fatigued prior to the onset of their symptoms. To me at least it would stand to reason that it is this persistent muscular activity, or over activity, that is the cause of fatigue.

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Postby Davey on February 25th, 2005, 7:03 pm

Fatigue is a common symptom and although muscle fatigue may be a result of overactive muscles, the same autoimmune dysfunction or chemical imbalances causing peripheral nerve hyperexcitability will likely disturb the overall function of your body.

Although there is wide variability in homoestasis, when things get out of balance it has a wide-ranging effect. For example, simply being dehydrated can cause a variety of neurological symptoms, as well as cause problems with other systems in the body.

So it is reasonable that BFS would cause fatigue.


Proud sufferer of Cramp-Fasciculation Syndrome since June 2001.

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Postby traveler27 on March 3rd, 2005, 11:00 am

My muscle movements do not stop at night, and I didn't realize it until my husband noticed it. I think many of us just do not get the deep sleep at night that our body needs. Taking .5 mg. of Klonopin at night has made my life bearable again. The tab can also be broken in half for a smaller dose. The Dr. says that this dose is way under a habit-forming dose. It's definitely worth a try!
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Postby Buzzygirl on March 24th, 2005, 12:08 am

Hi All,
I too have chronic fatigue. I got into a habit of taking naps after work, I just felt like I HAD to lay down. This is not the lifestyle I prefer. I don't feel up to doing much even on the weekend, and if I DO, I need a day to recover. Feeling like this so much of the time makes one think something must be terribly wrong. I don't recall having the tremendous feeling of fatigue prior to experiencing symptoms of PNH. I recently decided to try cutting down on my medications, eliminating the mid-day dose, in order to alleviate the extreme need for sleep in the middle of the day. I don't know that it's helped all that much, I just end up going to bed earlier!!!
Friends and family do not understand, they seem to think you're some kind of a slug or something. I'm glad to know it's not just me, but instead a by product of the syndrome.
Take care, sleep well, (if you can) :roll:
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Postby juli847 on March 24th, 2005, 8:43 am

I know with Fibromyalgia and Chronic Fatigue Syndrome twitching and tiredness are symptoms.
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