Day to day fatigue

[Ridge]

I have BulBar ALS and my biggest day to day issue is fatigue. I'm usually fine in the mornings but as the day wears on I get so tired and worn out, all I can do is sit in a chair or go to bed in the afternoon. Plus the more tired I get my ALS symptoms get more pronounced ( speech, weakness, walking, etc). Any suggestions would be appreciated.

 

[Alyoop]

Ridge, neurological fatigue, is a hard issue, I find that I have to make sure I do not overdo it. What I do is work for 20 minutes then rest for 20 - 30 minutes. Yesterday I had to dig over new garden and although it took a long time to finish a small are, at least it was an achievement that I was proud of. There are medications available for the fatigue, but as yet I have not resorted to trying any, as they all have unwanted side effects, so it really does come down to constant resting and not pushing yourself too hard especially early in the day. I often garden quite late in the afternoon so I do not feel quite so guilty when I hit the couch.

 

[halfin]

I found in the early stages that a cup of coffee would give me an energy boost.*

 

[John1]

Has anyone tried these new energy drinks?

 

[AKjo]

Isn't caffeine against the "rules" if you are taking Rilutek?

 

[Alyoop]

John. It's funny you should ask. I tried my first one this morning. I get bad fatigue from about 12 onwards. We shall see. It was rather tasty if this doesn't work, I am going to try the drugs!
Aly

 

[notme]

HI

This might be totally off the mark, but have they done a sleep study? If you're oxygen levels are lowering when you sleep, it will definitely make your more fatigued during the day.

I'm having the same problem--I'm absolutely always exhausted. Mine, I've found, is sleep apnea.

 

[Ridge]

I've recently purchased a used BiPap and will start using it this week, maybe that will help?

 

[KC2U2]

What's wrong with an afternoon nap? I like mine with a grand daughter best :-D:-D:-D:mrgreen::mrgreen:

 

[BarryG]

I find that I'm weakest first thing in the morning and then get stronger during the day until bed time when I'm weak again. It seems like my limbs take some time to get warmed up before they work or maybe they need energy from breakfast? I'm on bipap at night and for naps during the day.

 

[Al]

Are you on Baclofen? Some find it tires them.

AL.

 

[John1]

I've been on the same dose of baclofen for 9 years. The fatique has come on in only the past year.

 

[John1]

John. It's funny you should ask. I tried my first one this morning. I get bad fatigue from about 12 onwards. We shall see. It was rather tasty if this doesn't work, I am going to try the drugs!
Aly

So Aly, how did it work or are you still bouncing off the ceilings and unable to type?

 

[Alyoop]

Well. I didn't really notice a difference except I lived on the toilet for a couple of hours! Loads of caffeine that's for sure. If you have mobility issues keep away from them. Thankfully I can still get about quickly!
I stopped my baclofen last November because I blamed it on my fatigue. Made no difference. I have decided I get a cup full of energy a day. When it's gone, it is not replenished after a rest. If I have a really busy morning, then I hit the couch for the rest of the day.
Being careful with the " cup" seems to help . As I said before play, then rest, play then rest!