Fatigue and tirednesss

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My mom has ALS and she gets so tired so easily. She has to have a nap everyday and she can only do about one activity a day, like go to the doctor. Just getting dresses causes her fatigue, or having a visitor over, if they stay to long, wears her out. Is this normal for ALS? Should I be giving her extra supplements, or is this just part of the disease and nothing can be done?
Thanks for the advice
Jennifer
 
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Hi Jennifer,
I think fatigue is part of ALS, but again, everyone is probably different. I found that I was really fatigued before I started tube feeding. I guess I was not getting enough nutrients because I was not able to eat like I should, so the tube feeding really was a pick-me-up. I started that the first of the year and since then don't seem to be fatigued at all. Don't need to rest during the day.
 
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I would agree fatigue is part of ALS. How’s your mother sleeping at night, is she rested in the morning or does she wake with a dry mouth and a headache.

This used to happen to me and my doctor sent me to a respiratory specialist who put me on BIPAP. I have more energy, do not fall asleep during the day and no headache in the morning. The dry mouth still persist, I put this down to sleeping with my mouth open and I am trying to train myself to stop it.
 
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It's me again, Jennifer
I should have added that I am not suggesting that a feeding tube would solve your mother's problems. Maybe she has one, I can't remember if you said in another post. Just wanted to tell you my experience, not give medical advice! Hang in there! lot's of other people will probably have good suggestions.
 
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Ann

:-?
Hi! This is my first. My Husband was told 3 years ago he had MND. Having lots of falls
his hands wasting away and getting weak. But also his legs are also very weak.
But they have never said which MND it is. Jim is now in a wheelchair 95% of the time and he also gets very exhausted.
Also if we get too many visitors. He is now having a job to feed himself as he can't his arms up enough. So I have to feed him mostly now.
He never complains which is a big help to me. But! I know that I must get help soon as I am finding it is getting too much with all the lifting as I am now 72 years old.
Regards Ann
 
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Hello Ann. Welcome to the forum although I am sorry to hear of your husband's progression. I hope you find help soon. Caregiving is a huge job and nobody should go at it alone, IMO. :-D Cindy
 
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Jennifer,

I was wondering about the issue of fatigue. I do not have a diagnosis yet, but the fatigue is just kicking me in the rear. I can only manage one activity a day and then I have to sleep or just rest. It is SO frustrating and yesterday I had on of those "pity party" days. I had so much I needed to do.

However, for the record, the pity party days do not last long. I have a philosophy about being a bit down or frustrated. I only allow myself a 24 hour period (AT THE MOST) of feeling down, frustrated, scared or whatever and then it is time to move on. This forum helps a lot with that.

Just a few months ago I was working out intensely in the gym and now I am lucky if I manage to get the laundry done...in one day. :)

I do manage to swim a few days a week, but on those days I don't get too much accomplished, but it sure feels great to be in the water. I do have a bit of a problem getting out of the pool, but it is worth it.

The Fatigue has been much worse just in the last 3 weeks. I am grateful that I can still do things at all, so I try to focus on gratitude. I am part of a triathlon club and now I am just trying to volunteer when I can since I can't really train with the club anymore....at least until we figure out what is happening with my body.

I keep my racing bike in my living room as a form of hope...that I will get on it again someday. Until I have a diagnosis...I think it helps me alot.

Ann, I am sorry about your husband's progression. I know it must be heart breaking. I will keep you in my thoughts and prayers. This board is great place for lots of help.

Ellie

Sorry for the long post!
 
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hi Ann,

Welcome to the forum. sorry about your husband. Hope you will find useful info here as you journey down this road we're on together.
 
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elliekusa,,,,,,,,,,,,,,,,,,, Oh my god, i could have written your post! It is very hard to have a go getter mind and attitude in a body that wants to shut down........ It may sound crazy but i think i need to have a memorial for my old self, so that i can accept this new life... I keep thinking about what i wanted to do, who i was, who i was becoming. My body has different idea and i have to go with it! I had a dream that inspired me, there maybe a different name for it but letting go of who i was will release me of a lot of pain and self loathing.... Like you i adore this site and all who are on it.... I do not have a diagnosis but even if i get one that is not ALS i still want to write and read about all who have been through this awful journey...........
 
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Hi folks. On the fatigue issue a Bipap might be needed. If you sleep crappy you'll be tired the next day. As luck would have it I am going for my annual sleep study tonight. I may need some changes to my settings.

AL.
 
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ellie & sam,

I hear you loud and clear. I put years into my tennis and was competing, When I was pregnant last summer I made it to districts! I loved it and loved training and the friendships. I always wanted to play as a child and my parents could not afford with 4 girls. So when I had my kids I started playing and was in love with it. I felt great that I had given up my career to stay home and fond a balance with mothering them and having tennis for me. I miss it everyday. I cant believe a year ago I was playing tennis, working out, planning on going back to school and then this? On the days I miss tennis the most, I just thank god that i am still walking about and able to care for my kids and know that things could be worse. but it doesnt make me miss it any less........

ps. when I go to costco with the kids, I feel that I have accomplished somthing really big. kinda sad when you use to be extremly active.

april
 
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Jennifer,

My husband takes Methylin, and ADHD drug to help his fatigue. It helps somewhat. ( He has ADHD, so he was familiar with the drug and suggested it to the Neuro. He had never prescribed it before with ALS.)

The fatigue is part of the ALS due to PALS having a metabolism that is super charged for some reason. Just sitting in a chair a PALS metabolism is much higher than our own.

I definitely would look into something to help you mom stay alert.
 
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Another option for fatigue might be Modafinil (Provigil). There is currently a clinical study investigating its efficacy in treating ALS related fatigue. I am currently undiagnosed (and optimistic :)), but suffer from chronic fatigue in conjunction with my other symptoms. My neuro prescribed it mentioning that he uses it primarily to treat MS related exhaustion.

I found it to be very helpful, and for me the only side effect has been an occasional mild headache.

Robert
 
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info i posted on pls forum

drugs for fatigue

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hello.
at my neuro clinic there are many pamphlets on various neuro desease's.
i got one on fatigue and is printed by the ms society.
the fatigue we feel is basically the same so you can use the advice.
there are some drugs to treat it.

amantadine(symmetral or lysovir)-------------this is licensed to treat parkinsons,as well as some viral infections.
dosage about 200mg a day.
side effects can include insomnia and vivid dreams.

modafinil(provigil)------------this is used to treat narcolepsy.
side effects can include insomnia and headaches.

prokarin(procarin)-----------a skin patch that contains caffine and histamine.
can be expensive alternative medicine.

not everyone benefits from these drugs,side effect con's may out weigh the pro's.
i think finding ways of conserving energy,doing what you can when you can and not getting over tired are the best ways of dealing with fatigue..........trust me i am now an expert after 9years
look up fatigue on the ms society web page for helpfull tips and advice.
take good care everyone.
caroline
 
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I can speak up for provigil! I used to take it and because i have been sleepy all my life an i was falling asleep at the wheel...... I had NO side effects which is a miracle... You know how when your super tired your eyes close uncontrollably? Well provigil turns of that signal so you don't fall asleep.. I think i took it for four months before i had to up the milligrams because i was getting used to it.. When i lost my insurance i could no longer get it, its 245 dollars a bottle. So i am back to my sleepy self but i am not working or driving at my worst time of day.... For some reason three to four o clock makes me extremely tired. Blue Cross Blue shield is giving some people a hard time with it, like not covering the cost........ At least that is what my doc's nurse said.
 
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