fatigue & brain dead (your solutions)

[Ufrustrated2]

ok, i know caffeine is bad for us MS'ers but i still take it in the mornings as i'm so brain/body dead. takes hours to get motioned.

if we should not take caffeine, then what do you folks take, do, supplement, etc. i'm on SSD now so i sleep more than most. kinda like a cat. i'm up when i'm up, laying down when i'm tired.

thx

[jumpinjiminy]

Thanks for the input. I've always blamed my fatigue on diet. There was a point in time when I felt my best and it was after months of taking this super multivitamin and eating everything made from scratch. Sometimes I think I'm reacting to food additives because they make me puffy, stiff and feverish.

In either case, it's worth trying. It's all I've got right now and maybe it will help. The vitamin D supplement did help a little. The medrol helped a lot - but we all know you can't take that forever. The Cymbalta is helping with the mental fatigue. I tried a short trial run of the ala/alcar combo and that helped a little. Every little bit gets me closer to where I was, right? It might take a combination of things. The hope is to get enough to start a little exercise which will help even more. It's a slow climb.

[supermum_ms]

Just thought i'd let you know that for years my GP thought all my problems were from not eating properly, i'm naturally small in statue and skinny and I have always been a small eater. Hypoglycemia was thought to be behind the fatigue, tremors etc. for over 2 years i was eating healthy chemical free, 5 meals a day, it didnt alter anything so had to add snacks in between those 5 meals. That didn't alter anything so had to increase the amount eaten for meals, that didn't alter anything so had to add protein drinks and take glucose tablet when needed.

Meditation, yoga etc was recommended but still it didn't alter anything. What i discovered after 2 years was that my blood sugars have always been in the normal range, vit levels perfect (vit D never checked) thats on or off the diet. I lost 2 kilo's dispite eating a tonn of food, I felt hyperactive some days and it did absolutely nothing for when the fatigue hit. I was still sleeping 18 hour days until the fatigue lifted, once it lifted I'd go back to eating all that food and the cycle continued regardless.

I'm no longer eating that much, I don't need it but I still have the habbit of stuffing food in my mouth if i start feeling the fatigue coming, drinking a high caffinated drink, either brewed coffee or a V so i can get my self hyper enough to get home, then I crash though it doesn't always work out the way i'd like, a sooze in the car is sometimes the best I can do lol.

By all means try it out but please dont expect more than just being healthier than you are now, eating better is a good thing but will not fix or considerably alter fatigue, in my humble opinion.

Cheers........JJ  

[supermum_ms]

When they are talking about coffee, are they talking about coffee or caffine? Too much caffine for anyone (MSer or not) I could understand, an expresso, short black etc from ground beens is high in caffine and is 'real' coffee, the instant I drink doesn't have the same level of caffine, from memory instant is the lowest overal.

If you want truth you need to look at reputable sites, research and peer reviewed published articles. Remember coffee has been linked to a hole gamet of things, stunt your growth to more serious health concerns like causing cancer and heart disease but according to Mayo (not the best eg) the current research doesn't support.

"Newer studies have also shown that coffee may have benefits, such as protecting against Parkinson's disease, type 2 diabetes and liver cancer. And it has a high content of antioxidants. But this doesn't mean you should disregard the old maxim "Everything in moderation." Although coffee may not be very harmful...."

http://www.thisisms.com/article165.html

"So is coffee dangerous for people with MS? Not very likely (for one, the inflammatory markers they studied here for heart disease may have absolutely nothing to do with inflammation in the CNS), but it could possibly be a small provocation..."

If you look hard enough you'll even find a study from 08, that is saying coffee may prevent MS, lots of hits on that but i have a sneeky suspition this is the study that was sponsored by a coffee organisation. You'll find articles that say coffee is bad for MS and the oposite that says its good, I think the point I'm trying to make, is that until there is scientific evidence, multi blind studies etc etc then it holds little to no meaning and falls into the myth catagory.

Cheers...........JJ

My 2 cents lol  

[jumpinjiminy]

There's a book called "Tired of Being Tired." I'm reading it now. It's about adrenal fatigue, how to gauge which stage of fatigue you're experiencing and how to heal your adrenals so they can support your energy demands.

Being the queen of one-meal-a-day, it appears I've been overstressing the adrenals on top of all of our daily stresses around here, just by skipping meals. I've done it for years. Now it's time to stop. I'm also wondering if this is why I felt like a million bucks on those steroids the last two weeks with a little cortisol supplementation. I haven't felt that good in years.

In the meantime, I've got a little script for Cymbalta. It increases the concentration of norepinephrin in your brain which is needed for focus, concentration and energy. Now my mind is awake, but my body still doesn't want to cooperate. No energy. It will take a long time to get back up to speed. Even so, it's much easier to force myself to do things than it was without Cymbalta and I've only been on it for two days so far. I could tell a difference right away.

The current plan to restore reserves is eat five to six small meals a day, stay away from simple sugars as much as possible, nap when tired, stay away from caffeine and spend a few minutes every day doing relaxation training. I hope it works.

[Sparkysarah]

My caffe latte is my treat after going to the gym and I drink coffee several times a day. they say that "a little bit of what you fancy does you good" so I am in with Red and think that a lot of chocolate must therefore be in order. I think life is too short to deprive ourselves of what we love and unless you have an allergy or food intolerance, then just eat and drink (within reason) what makes you happy.

Sarah

[gwebb]

I have to agree with the others who 'know' they can't live without coffee.  Coffee, buttery things and chocolate do make my life more enjoyable, and I love them for that.  :)

[RedFlame]

I think the caffeine debate is just that, a debate.  There is always 'someone' saying that 'something' is bad for us either for our MS or people in general. I ignore all the statements about certain foods or additives, because they are reversed years later.  

I drink allot of caffiene, more than I should and I eat way too much chocolate:-).  It makes me happy.

Red

[hbananas]

Heart, you took my salt and saturated fats.  Liver, you took my wine.  Bladder, you took my diet sodas.  I'll be d***d if TM or possible MS or anything else will take my coffee.  You'll have to pry the mug out of my cold dead fingers.

[Doug1964]

I'm so new to all all the actual facts of MS that I have green running down my neck from behind my ears.

There is one thing that I know for sure... if coffee is bad for MS'ers... then this disease is going to take me down much more quickly than I thought.  I'll stop drinking coffee when either pigs fly or the I.R.S. is eradicated.

I will allow docs to poke, pinch, push, pull, puncture, prescribe, scan, radiate, and in extreme conditions... insult me, but there ain't no way anyone or any disease is going to take away my coffee.  Without coffee, I'm as vulnerable as Superman would be on a Kryptonite freebasing binge.

-- Doug

[Ufrustrated2]

i'm gonna ask for provigil soon to at least try it. i find it hard to carry on conversations as i feel so brain dead at times.

here ya go ashley, some googled articles:


[coffee/caffeine good for MS]
http://www.news.cornell.edu/stories/April08/CaffeineMS.kr.html

http://www.*************.org/c/Multiple_Sclerosis_MS/forum/767770-caffeine

http://scholar.google.com/scholar?q=caffeine+and+multiple+sclerosis&hl=en&as_sdt=0&as_vis=1&oi=scholart



[avoid coffee/caffeine]
http://www.umm.edu/altmed/articles/multiple-sclerosis-000111.htm

http://multiplesclerosis-journeyintohell.blogspot.com/

http://www.quackwatch.com/01QuackeryRelatedTopics/ms.html

[pros for some, con for others]
http://www.everydayhealth.com/blog/trevis-life-with-multiple-sclerosis-ms/caffeine-and-ms-more-than-a-cup-of-coffee/

[Ufrustrated2]

that is a good find. i'll pass it along to my buddy.

like i said, i can't get moving without it i really can't. can't drink coffee, but i thake the pill form and it helps

maybe it is just an ol unfounded wise tale or something?

[sllowe]

Hey U,

I don't know what I'd do w/out my daily doses of coffee/caffeine. Only time it made me worse was during my 1st attack. Had to stop it all together - made all my symptoms worse, but that's another story.

I'll drink it as long as it does me right. I've never seen a solid source say it's bad for us. Info I hear is like "butter" you know, one day it's good for us, the next day it's not, lol.  I say everything is better w/butter..........and, coffee!!!!!!!!

-Shell

[ashleyPT]

Who is writing and researching these articles?

[hbananas]

After googling "caffeine and multiple sclerosis", up came several articles about how drinking a lot of it can PREVENT MS.  I've never heard of the no-caffeine instructions, and I've been reading about this disease for about four years now.  Maybe I just read the headlines, said yippee and sipped my morning tankard?

[Ufrustrated2]

>>Amantadine and acetyl-L-carnitine.

been taking the carnitine for years. just something i had around back when used to be much more active

i'll ask my neuro about Amantadine and Provigil. i know last summer when i brought it up he wasn't too keen on it but that was before the VA rating board diagnosed me with MS. he may be more willing now.

thanks

[Ufrustrated2]

another MS'er at a VA SCI/SD ward mentioned it so i don't know if it is written in stone or not. but tweaking our nerves usually isn't good for us.

but i still take my caffeine in the morning! only helps a bit.

nothing i've found helps with the MS fatigue though. for me its like a brain and spine full of novacaine.

[babbs620]

I didnt know caffine was bad for ms! But i do know I drink coffee in the mornings and since I got sick a month or so ago ( nov 1) lol coffee makes my tremors bad and i feel really shakey inside but I still drink my two cups every morning it does pass after a hour or so.

[figuerpa]

I am on Provigil and it helps me stay awake during the day. Today is a day that it is not helping alot but I think that is cause I have been out doing things all day and that exhausts me.

[jensequitur]

I've just been to my new, improved neuro, and she recommends two things - Amantadine and acetyl-L-carnitine.  Carnitine you can get over the counter.  Amantadine is something that's usually prescribed to Parkinson's patients, but they've found that it also improves MS fatigue symptoms.

[drsdonthelp]

I have been extremely fatigued as well and I am on SSD, but I also have my 4 yr. old home with me. I feel bad for her because Mommy is just too tired all the time.. I take naps when she is resting. I drink coffee here and there throughout the day, but it doesn't help. I was not aware that caffeine is bad for ms'ers. I wonder why that is?
My neuro just increased two of my medications so I also wonder if that is what is causing me to be more blah than usual.
I hope someone has a remedy because I am tired of being tired too! lol