Exhaustion

[Colleen15]

Bulbar onset diagnosed in 3/23. No voice, no eating by mouth. Legs getting weak. Arms & hands ok. Breathing is ok. Is anyone else exhausted? Just taking a shower and getting dressed is exhausting. I sleep about 9 hours at night and nap 2-3 hours. I don’t leave the house. I just sit.

 

[Nikki J]

Me. I think it is a subset of pals. And it wasn’t in the beginning. I think it starts when more muscles are affected probably inadequate nutrition contributes at some point. Breathing would certainly do it but like you my breathing is still ok

Re shower. Exhausts me too. If you aren’t already try this. After shower wrap self in terry robe and sit ( I also turban my long hair). The robe absorbs the water while you rest. Then you will hopefully have energy to dress. Get simple clothes. And rest again. I have to plan my days very carefully and try hard to have activities in the mid morning

 

[KimT]

Me, too. For the first five years I had no idea what people were talking about. I slept well, ate a lot, and had lots of energy. Now I do not. I sleep in shifts. Six hours at night and a two-hour nap. No amount of drugs helps with this. I can still breathe well.

Last year I was going in the pool 4-5 times a week. This year I just don't have the motivation. Same with shower. It's not that showers tire me out, it's just no motivation. I'm not depressed. I sit around a lot busying myself with TV, games, and the computer.

I think mine started when my legs put me in the wheelchair anytime I left the condo. I can walk around the condo but my knee hurts when I do.

Yesterday I did manage to go to the pool. I felt very good while I was in there and hungry when I got out. Today, I was tired.

I see all these PALS traveling and have no desire to put myself through all that.

 

[Clearwater AL]

For me, a few years ago when I could no longer stand on my toes
or heels more and more as time went on… momentum of any kind
become difficult. Either it is progression or a two liter bottle of
soda has become very heavy. My days at the Casino are now just
good memories, climbing a 32’ ladder to clean gutters without
concern, having to do mostly everything with just my right hand,
so far. sitting in my fully equipped shop now just looking at it all.

When I read some of the “Could This Be ALS’ers” almost wanting,
thinking or weirdly hoping it’s ALS… my fingers sometimes reach
for the key board. They don’t have any idea of what this disease really
is and how much of life changes to fear, inability after inability,
(not weakness but failure), becoming more and more dependent on
someone else or others, loss of skills, a tray of meds to keep track
of… when to take with or without food or before, struggle to control
body temperature, struggle to get comfortable, be careful of not
dealing with or going into depression causing more meds for that.
There’s more… but I’ve probably rambled on too long already.

Hope this hasn’t come across as woe is me. Probably posted too many
times this month so far… too much time sitting at this desk I guess.
I'll try and just read for a while.

 

[Doug Frazier]

I had the same thing and it came on quickly. I quit walking, exercising, everything. Just sat there with my head down.

Totally by chance, I was getting a laryngectomy soon so I asked the doctor if I could stop the drugs for drying up saliva because the procedure would eliminate aspiration risk from the mouth. He said yes.

In two days all my energy was back, I was working on the computer all day. Wanting to squeeze in more awake time instead of falling asleep, my walking resumed, etc.

All that I had attributed to ALS picking up speed were drug side effects.

If you are taking those, you might ask your doctor if you could try two days off them for a trial.

But, without the laryngectomy you will be increasing aspiration risk which increases pneumonia risk which is the number one killer of PALS. So only do it with doctor approval.

I will be interested to hear how it goes.

 

[KimT]

Interesting, Doug. I can swallow well and have no problems with salivation. I did cut back or cut out some drugs and supplements but it only made my fatigue worse.

I can totally relate to Al's post. When I was walking every day I felt so much better.

 

[Colleen15]

Doug what drugs are you taking for saliva?

 

[Colleen15]

One of my concerns … my legs are getting worse, i don’t leave the house… is it because of ALS or because i’m barely using them.

 

[Nikki J]

It is certainly true that not everything is ALS so always should check out new symptoms especially when they are not standard ALS. But ALS fatigue is real for some of us.

Colleen the use it or lose it doesn’t apply to ALS. You can try doing a little more if you can tolerate it and do it safely ( remembering the rule about recovering in an hour) but increasing leg weakness is likely progression. Not sure where you are on the spectrum of weakness. Do you need an afo or a walker. Should you talk to clinic about a power chair which takes time to get after ordering? A power chair can give you freedom again

 

[Doug Frazier]

I took these two:
Scopolamine patch, 1 mg every 3 day
Glycopyrrolate (Robinul), 1 mg, 3 times a day

I started on scopolamine and then they switched me to glycoppyrrolate as a stronger option.

1. Tirednesss is part of ALS certainly so I'm not saying this is a solution to the tiredness issue for PALS in general.
2. It happened to be something I found out about my own situation by accident and the change was dramatic and surprising because I was not eliminating the drug with this goal in mind.
3. Every person's combination of diet, drugs, exercise, water intake, genetics are different so this may not have the same impact for others and don't attempt it without discussing it with your doctor.
4. I am definitely not advocating quitting drugs in general.

If you do try it, let me know the result. I'm just curious.

 

[Colleen15]

Nikki, I can walk around the house with a cane. I do not leave the house because i cannot speak or eat food by mouth. My husband does errands. I do have a walker for going to dr. Appts. Thank you!

 

[Colleen15]

Doug,
- I only use the eye drops for saliva now, but was thinking of asking md for other drugs, so thats useful to know.
Also, I recently started Relyvrio. Took once a day, then went to two times a day, and I became more exhausted, so went back to 1.
So many things impacting cause & effect. Thank you!

 

[Nikki J]

Can’t you go out a little? The weather is still decent especially mid day. You don’t have to talk to people Soon enough it will be too cold. Is there anywhere you can sit? Does your walker have a seat?

I completely understand the fatigue and can see the communication issue but fresh air ( such as it is ) and a little sun are good for you.

 

[Colleen15]

Nikki, I do have a very nice yard, and I did go sit out in September, just a bit too lazy in October. Yes I will regret that in Winter…

 

[Nikki J]

It is supposed to be up to 70 tomorrow. Go sit for 10 minutes. Please