Old 11-08-2018, 04:13 PM #1 (permalink)
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Default Suggestion for Fatigue?

Fatigue is what took me to insisting on testing. I now get exhausted even taking a shower. Anything medication wise that will help? I am using a Trilogy for 3 to 4 hours at night and also use it when tiring during the day. Interestingly, I have always been a “night” person and still seem most awake, alert and not tired after 10 PM.

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Old 11-08-2018, 05:15 PM #2 (permalink)
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Default Re: Suggestion for Fatigue?

Hi Darrell,
What seems to help most with fatigue is conserving energy.
That sounds like a paradox but what I mean is allowing help with things that suck up your energy so you can spend your energy on the things you enjoy most.

For instance, if you were to receive help showering - maybe with the undressing, drying and dressing part as a start, you might have more energy to then enjoy something else in your day.

You can't just take some energy producing medication and get away with doing more. There is a thread on how B12 is giving some energy boosts.

I would suggest however that combination of conserving energy on things you could be helped with, and something like the B12 could help a lot?
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Old 11-08-2018, 06:49 PM #3 (permalink)
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Default Re: Suggestion for Fatigue?

Tillie is right.

Here is my perspective, which is really just saying what she said in a bit different way.

I recognized early on that my capacity to do things was greatly diminished. I tried to fight it, but found the only successful approach was to accept it.

Now that I know I have limited capacity, I have arranged my life so that I don't do things that don't provide value, use assistive devices whenever possible, and do the things that really need doing in different, more energy-conserving ways.

I started using a wheelchair pretty early, ordering my first wheelchair within a month of being diagnosed. Deciding to use a wheelchair is one of the best decisions I have made. I can still do many of the things I enjoy, but in a way that does not use up my limited capacity, because the wheelchair does all the work!

I love to cook, so bought new knives that fit my hand in a way that reduces how much hand strength I need to use them.

I use tools for virtually everything so that I can use the leverage they provide rather than trying to produce the desired result using brute strength.

I also sleep whenever I need to and for as long as I need to. Some weeks I sleep 20 hours a day. Some days, I can get by with 10 hours of sleep. i let my body tell me what I need and then I sleep that much.

I schedule everything so that I can cancel if I am too tired to keep the appointment. Folks have been amazingly understanding.

Of course, my wife still thinks I do too much.

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Old 11-08-2018, 06:53 PM #4 (permalink)
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Default Re: Suggestion for Fatigue?

Tillie's got it right. It's a matter of fostering energy and saving what energy you do have for the things you want/need to do. Planning ahead, resting when you can, strategizing your day, and so on.

There are a few things that some folk have had moderate success with. If you use the search function on this forum, you can dig up quite a few threads with people lamenting a lack of energy and some of the things they've tried. I researched this quite avidly when I first got my diagnosis, as my primary disability at the time was fatigue. Some of the things I tried were:

Modafinil
Low Dose Naltrexone
Ritalin
vit B12 iv
several different antidepressants (when the doc thought I had depression, not MND)

Unfortunately all of the above produced only transient benefit and likely it was placebo. What has helped the most is getting a decent sleep, eating properly and resting before complete exhaustion- an energy deficit is way harder to recover from.
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Old 11-08-2018, 06:54 PM #5 (permalink)
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Default Re: Suggestion for Fatigue?

Hi Darrell.
My biggest burden has been weariness. I have stopped showering and do a flannel wash which leaves me clean enough but does not take all my energy. To try to help I have taken numerous supplements which to be honest have always given me some hope but no respite from the weary . I tend to lie down for a few hours before any set tasks obviously as time passes with me anyway it is more laying and less tasks my latest try was canned Oxygen to take a few puffs 4 on just a few times a day .
Hope is a big thing with me as I try for some miracle outside of boxes. I have three ayurvadic supplements on order to try Ashwagandha Root, DOPA Mucuna Pruriens and Safed Musli Ha ! just hope, at least when I have finished just cross all of my tries of your list. I am not allowed to edit my old posts or any new ones for that matter ( Naughty corner ? ) so my lists are updated on other forums. Take care dude and best of luck.
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Old 11-08-2018, 08:21 PM #6 (permalink)
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Default Re: Suggestion for Fatigue?

ALS is one of the most intense workout I've ever done. I used to put 25 km on crosscountry skis on a regular basis. I use the spoon analogy. You are given a certain number of spoons to use in a day. Everything that uses energy costs you one or more spoons, say you have 8 spoons for a day. Getting dressed= 1 spoon, having a shower= 2 spoons, walking to the mailbox= 1 or 2 spoons. You get the idea. When the spoons are done so are you.

You can push things and use some of tomorrow's spoons, but you just get fewer spoons tomorrow. This is where help and equipment become your best friend. If someone helps you get dressed it may cost you 1/2 a spoon. Say you want to meet someone for a coffee down the road. Just walking there can cost 3-4 spoons, just sitting there talking can cost a spoon. Use a cane or walker you might save a spoon just because you aren't fighting to keep balance. Use a scooter or a power chair and the trip downtown is free. That's the secret to not being as tired as ALS can make you. This even gets into getting a g-tube when eating is unsafe or just tiring.

One other thing you may want to do is having a breathing test done on your next clinic visit. You DO NOT NEED OXYGEN. Unless you have COPD or the like you DO NOT need oxygen. The issue with ALS is not getting enough air in and out of your lungs so you don't get rid of carbon dioxide. This is treated with a Bipap machine. Most of us start out just using it overnight. It isn't that much different than a Cpap machine, it just has inspiration and expiration pressures instead of a constant pressure.

As far as pharmaceuticals go, anything that boosts energy tends to burn out motor neurons quicker, we have enough issues with motor neurons as it is. It is kind of like over amping a circuit, it just fries the wires. Hope that helps.
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Old 11-08-2018, 08:31 PM #7 (permalink)
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Default Re: Suggestion for Fatigue?

Thanks Vincent, I have been using a Trilogy for a week. Still trying to get used to it.
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Old 11-09-2018, 12:26 AM #8 (permalink)
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Default Re: Suggestion for Fatigue?

I just want to pile on and warn that PALS do not need O2. This will not increase energy, but it could be very dangerous. Taking in O2 can trick your body into breathing even more shallowly and so build up even more CO2 whilst masking the whole issue.

Most PALS find it takes several weeks to really get used to their bipap - do persist at it. Try different masks and work with your RT or Laurie to get the settings right and you may increase your quality of life significantly.

This is a great thread, it's one of the topics that should be discussed often here as new PALS are always joining
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Old 11-09-2018, 08:43 AM #9 (permalink)
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Default Re: Suggestion for Fatigue?

Hi Vincent Hi Tillie. Thanks for your Oxygen warnings. I will repeat
Quote:
my latest try was canned Oxygen to take a few puffs 4 on just a few times a day
This is not Oxygen therapy or the amount I try 4 puffs will not trick my body in any way. I go on feelings and I have no bad feeling that this is a problem. Some of us who are fast track \ will try maybe outside of the box but safely in my case. When I was a firefighter we used Oxygen Therapy on many trauma victims and many who were near death after trauma. O2 revived all of them somewhat with improved stats, This may have been 30 Mins or over an hour with 100% Oxygen, not a few puffs from a can. No one else has to try this, I will let you know of any negatives or positives, it seems not much benefit after a few days, I have reduced slightly to 2 x 4 p and will conclude findings after 10 days. Then it will be shelved if no benefit. Next try my Ayurvedic supplements. Then onto Mushrooms the safe ones. Nothing I have tried has steepened my line it has actually eased but slightly. O just to ease my weary. I will also contact my OT and get a Bipap ordered.. Peace all.. TIANDB
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Old 11-09-2018, 11:57 AM #10 (permalink)
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Default Re: Suggestion for Fatigue?

Try the B-12. If you can't get the injections, try a heavy duty sublingual. I use Nova Nutrition 6,000 mcg. (6 mg.) once or twice a day. Just make sure it's methylcobalamin. B-12 is water soluble so what your body doesn't absorb will be eliminated in your urine.

Have you had a Vitamin D test? Even if you are in low normal range, you can supplement. Three out of four of my doctors suggest a level of 60-90. I test every six months to make sure I'm not taking too much but even at 5,000 IU a day, I've never gone over 70. When I cut down or stop, my levels drop quickly.
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Old 11-10-2018, 07:51 AM #11 (permalink)
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Default Re: Suggestion for Fatigue?

Kim, I have had 3 B-12 tests this year range was 485 to 682. Latest at the end of August was 520. Don’t see a vitamin D test per se.
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Old 11-10-2018, 05:43 PM #12 (permalink)
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Default Re: Suggestion for Fatigue?

It won't hurt to take sublingual B-12 with that level. I keep mine above 1,000. As for Vitamin D, I would definitely get that checked.

I'm assuming they did a TSH and free T3/T4 (thyroid tests.) If you are hypothyroid, it makes a huge difference in energy. I have Hashimoto's and I can easily tell when my TSH rises into hypothyroid. Even a couple of points can make a difference.
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