Guest guest Posted November 18, 2008 Report Share Posted November 18, 2008 Hi beth, For me it is wrong to talk about CMT fatigue as muscle related! CMT for me means that I am tired in another way than people without it. It is not really muscle related, it is due to the high level of concentration. I concentrate when I walk, when I do things, because concentration keeps me from falling. This is what I need to rest from, not muscles getting tired. Normally, I don't feel my muscles are too tired, but my mind is. I found out that doing nothing cures it. Nothing is reading or TV. But I need at least 2 hours of that a day. Also, I think of energy-saving, as a part of my every day. I don't use the stairs (I could, but too much energy), take the simplest way to my work (car), use the help of others, my partner, son, parents. I am very energetic though, but part-time work, family, friends, activities, exercise... I do get tired. But then I see that others (without CMT) are tired too. Just found out that only 40% of families in Sweden cook real meals everyday. I cook everyday, so that made feel good! (My partner cooks in the weekends, I cook during week days.) I see others who are more tired than me, and I always think that they have not found out about energy saving (for their bodies). Routines are great. If you know what will happen, you know how much energy you will need. New things are always more tiresome. Also, you can never rest in advance, only after. As for medication related fatigue, it is something else, and if people need painkillers, they have to learn to live with the fatigue and plan for napping. If your fatigue is muscle related, and you feel that your legs are to tired, numb, by the end of the day, then maybe you need to sit or lay down more during the day. Then your muscles can recover and you will keep going for a couple of more hours. Beata Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2008 Report Share Posted November 18, 2008 Hi Beata, I think you and are actually saying the same thing. The muscle weakness causes fatigue, a loss of energy, and mental exhaustion. This is helped by resting, i.e. not moving. This is different than being sleepy and needing sleep. As you describe, it's really the complete lack of movement that helps. This is exactly what I experience too. Due to the fatigue, I have to spend many hours a day simply not moving. Many times I just lie there listening to the TV with my eyes closed. I'm not sleepy, just extremely fatigued. This resting and energy conservation helps me to do the things when I need to do them, like stand, walk, get dressed, etc. When I do too much, the simple things aren't possible, so energy conversation is a must....just as you describe. So I think we are all saying the same thing...fatigue is different than being sleepy. It's akin to a marathon runner reaching the end of the race, dropping to the ground with eyes closed and lying completely still on the ground for a few minutes until the fatigue subsides and muscles recover enough to allow movement again. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2008 Report Share Posted November 18, 2008 Beata: That is great that you conserve your energy. That is what my husband and I do. We take turns taking care of the baby and cooking or whatever else we have to do. I do the same thing when my legs are tired, I relax, maybe take a nap only when my child is sleeping though, lol. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2008 Report Share Posted November 19, 2008 Sometimes I don't know I'm tired until I lay down...I fall asleep fast ..sleep hard and wake up in the morning and my body is in the spot ...I never move.......There are times I think I could just sleep all day to the next day! I don't hear anything ether...Gees! I'm so exciting!!! Can't even say I'm sleeping beauty because I'm far far beautiful...LOL Geri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2008 Report Share Posted November 19, 2008 Thank you . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2008 Report Share Posted November 19, 2008 Hi , I totally agree! We run our marathons EVERY DAY! My partner sometimes says: If you are so tired, go to sleep! My answer is: I am not sleepy! But he doesn't understand, so I will explain it with the marathon runner next time! Thanks! Beata Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2008 Report Share Posted November 19, 2008 Beata, I agree completely! That is why I would always work faster at my call center jobs. One big thing was not only to concentrate (now on how my fingers move too) but also I would concentrate on the job to forget my physical pain! This sure does take a lot out of you! Take care, Dawn Quote Link to comment Share on other sites More sharing options...
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