How many with fatigue?

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

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How many with fatigue?

Postby jcavan4125 on January 26th, 2005, 1:52 pm

I was just wondering how many other BFSers experienced significant daily fatigue. I for one have to take a nap after lunch nearly every day. I don't sleep long, usually about 20 minutes, and then I'm good for the rest of the day. Anyone else?
Joe... "That which does not kill us makes us stronger"! - Nietzsche
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Postby Pasics Pete on January 26th, 2005, 2:37 pm

It's not unusual for me to sneak home at lunchtime and catch a few "winks." I usually blame my tiredness on the inability to get quality sleep at night.
I'm pretty much convinced that BFS/PNH/CFS (and perhaps Fibromyalgia) are all pretty much the same syndrome. From what I've read, the symptoms are nealy identical and it appears that they all may have an autoimmune component.
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fatigue

Postby kristinz on January 26th, 2005, 2:52 pm

I would have to agree with Pete. LAtely, I have been thinking a lot abou the connection to CFS. There are days that by the time I drive home from work, I've have a hard time staying awake (more so then the feeling of having a long day). Also, at the end of the day both arms feel fatigued. For me hot baths seem to work and exercising (as strange as it sounds...) I exercised for the first time in a while last night- all the pain went away and I had more energy then I can remember (since BFS).

Good luck- Kristin
It could be worse! :)
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Postby amy_twitch on January 26th, 2005, 4:42 pm

I had pretty bad fatigue for the first six months....but then it subsided greatly. Don't know why though. I think it's been like that for many people here. Great sleep and light exercise certainly help.

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Postby jcavan4125 on January 27th, 2005, 3:12 pm

Thanks for the replies guys, and I agree that BFS CFS and FM all have overlap and maybe even a common cause.
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Postby LeeNC on January 27th, 2005, 8:53 pm

Just another one agreeing that FM and BFS seem closely related. Years ago, a new friend told me about her FM. I didn't really know what it was. She described fitful sleep and explained how her muscles would at random sort of vibrate and twitch, and I thought to myself, "So?" Then I got a whopping case of BFS. (Hmm, contagious? JK) I felt sorry for her, because she admitted to needing Klonopin and pain medications that sapped her energy and made her feel "thick." Now I see why she'd take 'em! Personally, I'm not taking any meds, but I sure understand why someone would choose differently. In fact, if my symptoms were worse, I probably would take something.

Like Amy, I went through several months of extreme tiredness, but that seems to have lifted. Yay! ...I had started to list the symptoms that HAVEN'T gone away, but the list was long, and y'all can guess all the stuff on it. So...what I can list instead are a few symptoms have gone away after my 7-month experience with BFS: the shaky-like-low-blood-sugar feeling, the exaggerated yawns, the random shivers, the wiped-out tiredness, and most of the fingertip blisters. All this varies from day to day, but overall I do feel some better. So have hope!

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Postby Ish on January 28th, 2005, 12:43 am

Absolutely. For me, as unpleasant as my basic BFS symptoms are (and they are awful), it is the fatigue that really has the impact. It pretty much has ended my professional life (can't compete like this), and also done a number on my personal life as well.

I'm not afraid of ALS; I'm not anxious; I hate, but can deal with the sensations and pain. But the fatigue -- that's the problem. That's why I'm hoping for a treatment: I'd like my life back.

I don't really hear that many people complaining about the fatigue. I wonder if it varies a lot. If I have a bad case. My fx are literally constant, there is no second I'm not twitching, 24/7. And they show up on the EMG as soon as the needle goes in, wherever they put it. The soreness is extreme too, literally like a day of mountain climbing, every morning. Dx "BFS" by a neuro at 1 year. It has been 1.5 years. My life is quite diminished by this. Eager for some relief.
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Postby traveler27 on January 30th, 2005, 2:24 pm

Ish, do you take something at night? I couldn't understand my fatigue until I started taking the Klonopin at night. When I started that, I felt so much better. Prior to that, I was sleeping, but not getting any rest. My husband said he could feel me trembling at times. I was totally oblivious. The Klonopin hasn't helped with everything (still can't exercise much, just walking), but it makes day to day life so much better!
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Postby Ish on February 2nd, 2005, 9:51 pm

wow, just what I was wondering. Maybe I'll try it. Thanks.
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Postby eleven on February 3rd, 2005, 9:55 am

To the initial post - I too experience a lot of fatigue. The first 5 months of BFS were very tiresome. And then, at month 6, I started on an SSRI to help with the anxiety (and it did!); however, SSRIs also cause some drowsiness. My fatigue continues - I cant watch TV at night without falling asleep; I can take an hour nap at anytime of the day. Things that have helped with my energy levels are : exercise (Yoga & Pilates), and eating a healthy diet (tons of fruit and veggies, milk, tuna, salmon).

My twitches have diminished somewhat. And for the most part, I dont have too many 'strange' symptoms anymore.
The eagle never lost so much time as when he submitted to learn of the crow -William Blake
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Re: fatigue

Postby Davey on February 3rd, 2005, 2:52 pm

I have experienced a lot of fatigue with BFS/PNH. When I get flare ups, I can never get enough sleep. Even when I have 10 hours of sleep, I still feel dead tired. This waxes and wanes with my other symptoms. Right now I am in a flare up, so I am lacking energy. My arms and legs feel dead, and although I have no loss of strength, they burn and tire easy with exertion. Of all the symptoms, this has to be the worst.
:cry:
Cheers,

Dave

Proud sufferer of Cramp-Fasciculation Syndrome since June 2001.

"Do not fear death tomorrow so much that you forget to live today."
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Postby whatnext on February 3rd, 2005, 6:39 pm

LeeNC wrote:So...what I can list instead are a few symptoms have gone away after my 7-month experience with BFS: the shaky-like-low-blood-sugar feeling, the exaggerated yawns, the random shivers, the wiped-out tiredness, and most of the fingertip blisters. All this varies from day to day, but overall I do feel some better. So have hope!


I don't know if I've mentioned this before, but I had the little fingertip blisters last summer too! They lasted a few days and then went away as suddenly as the first appeared. Weird!
I will ultimately and completely crush, defeat, anihilate, and eradicate my anxiety so it cannot and will not do the same to me.
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Postby LeeNC on February 3rd, 2005, 6:58 pm

Hey, whatnext, long time no "see."

Yeah, I am theorizing that these fingertip blisters are evidence of a virus that lurks in our nerves, like shingles (herpes zoster). But that's my nonmedical viewpoint.

Anyway, we're proof that BFS is something we can live with...once we get over the initial scare.
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Postby whatnext on February 3rd, 2005, 7:03 pm

Yeah, I'm back. I'm trying to time my visits to coincide with my monthly "anniversary". I'm a little early this time! :)
I will ultimately and completely crush, defeat, anihilate, and eradicate my anxiety so it cannot and will not do the same to me.
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