Old 10-19-2015, 11:08 AM #1 (permalink)
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Default Accelerated Fatigue -- solution/suggestions?

Hi all,

I don't go back to the neuro until my next scheduled visit in December. I was told to get in contact sooner if I experience any worsening breathing or swallowing issues. Breathing I feel has decline some, particularly when eating, but not remarkably and not enough to warrant an earlier appointment in my opinion.

However, fatigue has become a massive obstacle. Does anyone have any suggestions in relation to fatigue? I'm not bouncing back at all. I think this damn move has done me in. In the last week, I feel like my progression has sped up substantially. So much so, it's scary.

Any tips on overcoming this fatigue? Energy drinks? Anything? I'm living alone so I need to get a grip on this. I have been so determined to fly out in November to see friends I left behind in June, but honestly, the way I feel right now the thought of travelling overwhelms me.

I can't seem to get comfortable anymore. I feel so damn stiff and weak all the time and my twitching butt cheek is driving me mental. I feel like I'm riding a horse while watching the telly. I'm assuming this is related to fatigue and if I can address that issue, it might has a positive effect on the others.

Sorry to sound so whiny. Any help is appreciated.

Thanks,
Cee
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Old 10-19-2015, 11:30 AM #2 (permalink)
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Default Re: Accelerated Fatigue -- solution/suggestions?

The fatigue can be incredible. Breathing can be a big cause or contributor and if you think you are having issues maybe call? But even with zero breathing issues ( as of last clinic in September and still no symptoms) I struggle with fatigue. I have found if I do too much( and too much is ridiculously little) it will wipe me out. The longer I push it the longer the recovery. When did you move? Last winter I traveled a lot in one month and was having great difficulty walking when I returned. It took a month to recover. One strenuous day ( like clinic) puts me down for 2 days after. If anyone has an answer I need it too! All I know if to pace myself during each day and plan major down time after if there is a big event. The longer the event the more downtime. The only other thing that helps is my afo. I expend less energy when I wear it
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Old 10-19-2015, 11:31 AM #3 (permalink)
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Default Re: Accelerated Fatigue -- solution/suggestions?

The main thing would be simply to rest as much as possible and use the tools you need. A walker or wheelchair will help with energy conservation. Eating clean will give you good nutrition without digestive issues.
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Old 10-19-2015, 11:33 AM #4 (permalink)
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Default Re: Accelerated Fatigue -- solution/suggestions?

I've heard of some people being prescribed ritalin to help with fatigue. Other than that pace yourself and use things like scooters and wheel chairs, they don't just help with mobility issues they also conserve energy.
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Old 10-19-2015, 11:41 AM #5 (permalink)
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Default Re: Accelerated Fatigue -- solution/suggestions?

Cee, I bought a rocking chair (yes, it's green) that I just about live in.

It really is knowing your limits. I totally get it though, the brain so wants the body's limits to be greater than what they are.

As progression goes on, my limits are less. Some days I feel extremely lazy, other days I move between my bed and chair and...that's it. Paying the price is getting too high for doing too much.

Even my kids tell me off when they think I've done enough. I need to listen to them.

So, suggestions? Listen to your body, and stop when it needs you too. Ok, so I need to take my own advice, but it's advice you'd give me if it was the other way around.

Going to see your friends sounds like an awesome idea. Rest up, because flying can be terrible if you aren't prepared for it.

God bless, Janelle x
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Old 10-19-2015, 12:15 PM #6 (permalink)
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Default Re: Accelerated Fatigue -- solution/suggestions?

Thanks everyone. As selfish as this sounds, it's nice to know I'm not alone. I have always listened to my body and knew fairly well how much to do and how long it would take to recover if I over did it.. And for the past four months, it was working out all right.

In terms of where I am in progression, I am quite good in relation to so many other PALS. Because of this rapid change -- and the fact that I am noticing more significant changes in weakness -- I guess inside I'm a bit scared that I'm starting a very slippery and fast slide downward. I think there has always been a part of me that remained in denial.

This sudden and profound has admittedly shook me up. So far, I've been recovering for over 10 days and don't feel much in the way of improvement. I haven't even had the energy to organize window coverings on the sliding door. I actually have two big left over flattened cardboard boxes propped up for privacy. That is so not me yet I can't muster enough energy to get it done. I feel like a squatter.

And while I'm not depressed -- frustrated mostly -- I'm crying for no flipping reason over nothing. It's bizarre. And think that my be sucking up my energy too.

I'm thinking of trying to increase my calorie intake for the next week or two and see if that helps any. Beyond that I'll just take everyone's advice about resting and not overdoing it. Hopefully, when I have my next appointment in December, they will have some ideas too.

Thanks everyone.

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Old 10-19-2015, 01:00 PM #7 (permalink)
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Default Re: Accelerated Fatigue -- solution/suggestions?

"Crying over nothing" (a sign of PBA, esp. if you are not depressed, as you say) merits a trial of Nuedexta, perhaps. Crying and strong emotion are strenuous in themselves so if you can reduce your emotional cycling, that might help your fatigue as well.

As to calories, I would esp. look to balance meals, i.e. every meal or snack has protein as well as carbs. And keep hydration and fiber consistent as well.
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Old 10-19-2015, 01:29 PM #8 (permalink)
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Default Re: Accelerated Fatigue -- solution/suggestions?

David, you have never identified yourself on this forum as having ALS but make these posts, they are not helpful.

LE - the fatigue is something that you need to take seriously.

You can speed up progression by overtaxing dying muscles. I don't want to sound alarmist, but you are experiencing the results of overdoing things now and I hope you can avoid doing that again.

This means getting serious about working out how to conserve energy. Taking energy drinks or any drugs is not a good solution. If you took something that made you feel more energetic you are more likely to do more than you should and worsen things.

Make a list of all the little ways you can conserve energy instead.
Start a high calorie diet. Increase your daily calories but not to try and do more, rather to ensure you have the energy you need so you don't lose too much weight.
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Old 10-19-2015, 04:41 PM #9 (permalink)
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Default Re: Accelerated Fatigue -- solution/suggestions?

Quote:
Originally Posted by affected View Post

This means getting serious about working out how to conserve energy. Taking energy drinks or any drugs is not a good solution. If you took something that made you feel more energetic you are more likely to do more than you should and worsen things.

Make a list of all the little ways you can conserve energy instead.
Start a high calorie diet. Increase your daily calories but not to try and do more, rather to ensure you have the energy you need so you don't lose too much weight.

Tillie
Point taken! Thanks, Honestly, I was thinking more energy means more I can do for longer without losing steam. Obviously not the way to go, as I'm learning the hard way. Although of late, I honestly had no choice. I have managed bed and sofa today, the rest of what needs to be done will have to wait for the time being.

In terms of PBA, Laurie, I just looked it up. It sounds right on the money and I will discuss it at my next appointment. I thought I was just going a bit loopy maybe from stress and exhaustion but then I realized I was crying excessively over silly stuff like television commercials.

I think it's about I time take my head out of the sand, educate myself more, and fully face what's going on and start doing and looking at everything differently whether I want to or not.

Again, thanks for all your feedback. Greatly appreciated.
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Old 10-19-2015, 10:00 PM #10 (permalink)
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Default Re: Accelerated Fatigue -- solution/suggestions?

This disease changes the way we think about everything and it does take a bit to get our heads around what once seemed common sense - like use it or lose it. That just don't work now, using it can actually cause losing it faster. It takes a bit to get it, but you just learned that doing a lot today won't be fine after a good night of sleep, or even a day off.

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Old 10-20-2015, 06:58 AM #11 (permalink)
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Default Re: Accelerated Fatigue -- solution/suggestions?

Cee - I was crying over commercials, too! And laughing way too hard. Nuedexta has made a huge difference. With it, you can still laugh & cry appropriately, but you're able to "put the brakes on" so to speak. Do you use a BiPap/Avaps? I use it at night, but find that if I'm overly tired during the day, just putting it on for an hour really helps. You don't have to go to bed (unless you want to) but can use it while watching tv, on the computer, etc. Pacing myself has been difficult - I try to take a lot of breaks during the day, but use that time for reading, tv, etc. Even with all this, I'm often tired all day, especially if I don't sleep well.
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Old 10-20-2015, 07:01 AM #12 (permalink)
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Default Re: Accelerated Fatigue -- solution/suggestions?

Cee, why not call for an earlier appoiontment? As Laurie said, crying in itself can be exhausting, so if you can get a handle on that you might save a lot of wear and tear on your body between now and December. The way this disease works, I just don't think that waiting when there are changes is a good idea.

I wish I could cover those windows for you! Moving takes a lot of energy, both physical and mental. Please be kind to yourself.
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Old 10-20-2015, 09:23 AM #13 (permalink)
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Default Re: Accelerated Fatigue -- solution/suggestions?

And more great ideas. Thanks.

I know I'm crying at inappropriate events, but I don't believe I am laughing inappropriately. I don't use BiPap. My breathing has been good, although I do find some subtle recent changes, particularly when eating.

I will likely take everyone's suggestion and see the doctor earlier. I am going to give myself a few good rest days and see if that makes any difference at all. If I doesn't help, I'll ring the office. Promise. Thanks a million everyone. Cee x
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Old 10-20-2015, 02:48 PM #14 (permalink)
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Default Re: Accelerated Fatigue -- solution/suggestions?

Cee, look for ways to not use energy. Use a shower chair and handheld so you don't have to stand, use a walker with a basket to carry your stuff and with a seat so if you get tired you have a seat. Think about showering every other day and wiping off with oral hygiene the other days. When you cook, cook for days of meals and freeze them. Fall in love with your crockpot for soups,stews, etc. Make a batch of smoothie and put them in cups so if you are tired but need nutrition you have a good substitute.

If you are going to do something try to make it count for many days or trips. Enlist friends to do the most tiring tasks. Think about joining amazon prime snce they deliver in 2 days and you won't need to do much grocery shopping-you can buy lots of home care and self care items on there.

Buy socks a size bigger. They are much easier to get on and off. Elastic waisted pants or loose leggings are good. V necked shirts are easier to get overhead. If you use button up shirts you can have all shirt buttons replaced with velcro. Same for regular pants. We buy my pals shirts a size larger for roomy comfort and getting on and off more easily.

Just a few more ideas
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Old 10-20-2015, 03:12 PM #15 (permalink)
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Default Re: Accelerated Fatigue -- solution/suggestions?

le - youre in canada, right? two years ago, neudexta was not available in canada. (i was friends with a pals from canada - who has since passed away - and she was unable to get it.) hopefully, that has changed. i think some other options have been given on the forum when others have been unable to get or afford neudexta. maybe search the forum using dex as a search word.
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