I can totally relate. My husband finally gets it and some of my good friends. Others do not understand How I am raring to go and then all of the sudden I am done.
Alex
Oh how I can relate. The fatigue is one of the things that bothers me the most. Probably because I live alone and if I am too tired to do something it just doesn't get done. And like you said a good nights sleep doesn't mean you are any less fatigued the next day.
Lately I have been on a 2 day cycle for my fatigue. One day I will sleep about 10 hours at night and barely make it through the day and the next I will end up sleeping 18 hours of the day.
I do hope the new medication will help you with your fatigue.
Dennis
Hey JB,
Your so right - people who have not experienced true fatigue think it's comparible to being "tired." And, they couldn't be more completely different.
I hope the med helps you out.
Fatigue is not the same as being "tired". I think you need to use other words to describe it. I'm partial to "i fell like I got hit by a bus". exhaustion is good too, or totally drained. I also describe it as like having the flu without the respiratory symptoms. I don't have MS, have cancer, but fatigue is a part of my illness, and also a symptoms of the chemo etc.
keep us posted on how the amantadine works!
My fatigue has been over the top, these last few weeks. It tends to hit me at about 8:30 in the morning for an hour or two, and then again at about 2pm-5pm. During those times, the thought of going into a store to get some groceries is just overwhelming. The thought of running the vacuum cleaner is just too much.
Thankfully, the family "gets it". Most of my co-workers don't, though a few do.
About 3 weeks ago, I quit my Acetyl L-Carnitine, because I just didn't think it was doing anything for me. Boy, was I wrong! Within a week, my fatigue was just debilitating! I got back on it, and lo and behold, my fatigue improved to the way it was before I quit it. Which is to say, it's grinding, but not completely debilitating.
Acetyl L-Carnitine was pitted against Amatadine in a 2004 Mayo study for effectiveness, and it beat out Amatadine.
http://www.ncbi.nlm.nih.gov/pubmed/14759641
My neuro says they're very similar in composition. I take 1000 mg in the morning, and 1000 mg in the afternoon with my afternoon Baclofen. I guess I'm glad I'm back on it, but my fatigue is still a big issue. At least it's not as big as when I quit the stuff for a short while!
interesting, I take my baclofen at night, because that's when my spasms hit and it makes my insomnia worse! doesn't give me any more energy tho!
JB- I hope the med works for you and you can get some real sense of not feeling like that Mack truck just hit you!
GG-HOw interesting about the Acetyl L-Carnitine! I do believe that is what my brother takes but in higher doses. I'll have to check.
Sleep tight!
Ren
I've been having alot of fatigue for the past month or so, it's a horrible feeling, my sis asked me what it felt like. Did I feel like I didn't want to do anything, or did I feel I wanted too but felt my body couldn't do it. of course it's the second one.
I am starting to understand why people get depressed, I'm not doing very well for the past few months and I'm getting tired of it all, I feel it's affecting my family and they deserve alot more then I can give, I can't even go for a walk without help or my wheelchair etc. I hate it and really feel down about it. Amantadine which I've taken for a few years doesn't seem to help anymore, so I'm stopping it for awhile and boy it's hard to stop.
but I will try it again and I see the MS clinic in May when I'll let them know how I'm doing.
take care and hang in there, I'll try too
wobbly