Fatigue

[Steven A Williams]

Hi all,
I have bulbar onset lower motor neurone ALS, and am getting very tired a lot of the time. I know fatigue is aa big issue for ALS patients. Does anyone have any hints or suggestions/meds etc?
I have been chelating for a couple of months, which could add to the problem.
Thanks
Steve

 

[affected]

Conserving energy seems to be one of the best strategies.

What do you enjoy doing the most, and what do you enjoy less that takes a lot of energy? The latter are things you may look at modifying. It's different for each person so this example is just a thought starter not a suggestion.

It would take my Chris 20 minutes to dress of a morning and by the time he finished he was exhausted. The first day I dressed him and it took less than 2 minutes he was stunned as he had not realised how long it was taking him and how much effort.

He suddenly could get up, be dressed by me, and come out to enjoy his breakfast and coffee and actually receive some energy from those calories

 

[ShiftKicker]

I am not sure if you've had a night time breathing assessment, or if you have a BiPAP already. It might be a good idea to make sure your breathing is not compromised while you sleep. It can definitely make a difference in your daytime energy if your breathing is affected at night.

 

[KimT]

Are you getting good nourishment and enough quality calories each day? I know when I skip a meal I get exhausted and crabby, too. Also sufficient hydration is necessary to avoid exhaustion.

 

[Steven A Williams]

Thank you everyone,
Some great suggestions. It seems there's no easy solution, i.e a drug that can help. I have trouble with my nasal passages, and I suddenly wake up with severe cramp in one of my legs, so sleep isn't as restful as it could be. I am taking magnesium for my leg cramps, but it doesn't seem to be helping. I don't need a BiPAP, and don't know how to get a night time breathing assessment. I live in London UK. I am eating well and drinking plenty.
Thanks,
Steve.

 

[AKNate]

Up your magnesium Steve. Try a powder and tablets too. Also try CoQ10 vitamins. My husband takes 5 daily.

 

[Nikki J]

For the breathing assessment ask your neurologist. You have excellent MND doctors in London. If cramps are uncontrolled by a good dose of magnesium ask about mexilitine. It is a heart medicine that was found to help with ALS cramps. Not everyone can take it if they have medical issues and I don't know if it is available in The UK. It is not expensive or new though

Chelation may have affected your body chemistry. The risks depend on the agent used. Have you had follow up blood work

 

[Manhattanite]

Some people here have tried Modafinil ("Provigil") - you can run a search for it in the forums

 

[diagnosed2016]

Hubby takes mexiltine to control cramps and it works very well

 

[mpnatx]

I've had severe cramps from the beginning. I tried various medications that didn't seem to help. I was prescribed Quinine Sulfate 300mg and that finally gave me some relief.
Can't get it in the US, so I order from a reputable pharmacy in Canada.
Hope you feel better.

 

[lgelb]

Besides magnesium for leg cramps, adding a vitamin B complex and addressing any iron deficiency may help. And there is evidence for pickle juice, though that may not be the tastiest bedtime snack.

Best,
Laurie

 

[Steven A Williams]

Thanks all,
Some more brilliant suggestions. I would try Modafinil, as it could help both fatigue and cramps, but I read on another forum that it affects bulbar issues. I think the bulbar problems recede once you stop taking the drug,, so I might give it a go. Mexiltine looks like it might be worth a try. I can't take too much quinine as I have tinnitus. And since chelation I haven't had any follow up blood work. Not sure what that would involve Nikki.
Thanks again
Steve

 

[Nikki J]

It sounds like a visit to the doctor is in order. Your gp can order blood work. Be prepared to tell him/ her what chelating agent you used but checks of blood count and chemistry panels as well as things like magnesium level would seem sensible. You might have to see your neurologist to order breathing assessment

 

[KimT]

Make sure they also check you Iron, TIBC, and Ferritin levels. I was iron deficient and taking supplemental iron helped. My GP also chose to check zinc and copper, TSH.

 

[Inventor]

Careful with the iron though. There are some indications that excess iron may contribute to the disease processes in the central nervous system.