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+ Diagnosed Aug 2005
+ Bipap March 2007
+ PEG July 2007
+ Trache and Vent July 2008
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It seems like any kind of stress or a change in a PALS regular routine causes a lot of fatigue. I have experienced a disabling fatigue from any change in my life and stress is a huge killer. Others have also reported the same so it is not an isolated occurrence.
Here are a few responses to this question.
#1
My wife wanted me to ask if any PALS had problems with fatigue if you get away from your normal routine. She gets up every weekday at six to go to work and is in bed by nine. She seems to do OK with that but if she deviates at all it just wears her out. Last Friday there was a problem with the fire alarm at school and she had to stand outside with her class for an hour. That just wiped her out. She slept until two pm Sat. and one pm Sunday. This Friday night we went to a special dinner at my daughter's school and she slept until noon today and really had a rough day.
#2
My husband is tired everyday just from his normal routine. Friday he went to walmart with me after working a half day and after walking around for about 30 minutes he was so exhausted he talked about getting a scooter next time we went. Today, he tried one of his muscle relaxers and he is walking faster and easier and seems to have more energy.
#3
My husbands routine is a bit different from yours, mainly he gets up to take meds at 6, then goes back to sleep. when we have appts, and he doesn’t get back to sleep he is exhausted the rest of the day. Anything out of the norm (like your fire alarm) seems to stress him out a bit, and with stress comes fatigue. On Tues, we left the house at 8am for my doctor visit, which turned in to an all day affair, ending in me being admitted into the hospital at 6 pm. This is Saturday nite, and he still hasn’t recovered. I was the one who had there appendix removed, but the stress from everything really wiped him out.
#4
My dad keeps a pretty regular routine, but if the slightest thing comes up, it stresses him out, and he has to take a nap. Yesterday for example, he was trying to pay his AX bill, and the AX website had a glitch in it and took you to a weird page. Now to him, that was enough to stress him out and put him to bed with his bi-pap. Travelling, even on a wonderful relaxing vacation causes stress and then it takes 2 weeks to recover from that. ANY kind of stress, ie., "change" seem to set them back.
#5
STRESS whether it is positive or negative seems to increase PALS fatigue. The other thing that you may follow up on is her respiratory status. All PALS complain of incredible fatigue when it is time for BiPAP and then report that they have more energy when they begin using BiPap
#6
My husband suffers from extreme fatigue. He takes Ritalin to give him energy and sometimes that doesn't help. Doing even little things will make him tired, especially if it's something that involves a lot of moving around. And I've found that when he has to talk a lot, he exhausts himself, as he tries so hard to interact with people and have them understand him. That is his passion! It tires out his diaphragm muscles.
#7
I can say that anything out of my routine will make me tired. My Dr explained to me that I wake up in the morning with a bowl of Cherries.. I need to be real careful how I use them up.. If I am planning a trip to town then I need to take it real easy until I go. If I am going out in the evening then nothing during the day. I get tired now just making my bed and putting the dishes in the dish washer. The bipap really helps with fatigue. I will put it on for an hour or so in the afternoon and then I can stay up in the evening. Fatigue is surely a big part of the whole ALS disease..
I could go on and on, but I think you get the point that anything can make a PALS exhausted and it takes days to recover.
Added: May 2010