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MS Fatigue

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Unread 02-19-2012, 06:19 PM   #11
Dejibo
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I read somewhere that alot of MS patients run into fatigue so debilitating that they dont have the energy required to think, and sometimes talk.

Have you ever bee so fatigued that you just stopped talking? scared me so when it happened to me. I just sat back and let the world pass me by.
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Unread 02-19-2012, 06:30 PM   #12
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Hard for me to tell sometimes whether I'm too tired to talk, too tired to find the words to say, or both. I've told people "I have to get off the phone, I've got a situation to deal with" or some such thing because I just was too tired to listen, think and talk. It wasn't confusion, it was fatigue.
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Unread 02-20-2012, 06:53 AM   #13
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I was just remembering...my niece was 16 when my brother married her mom. They would come up to visit, and my niece would just sit around. No, she didn't want to go for a walk with us, she was tired. My brother said she was like that at home, never wanted to go biking with them, etc. She wasn't overweight or sickly, just never had any energy. They thought she had LTS (Lazy Teenager Syndrome). Who'd blame them?

Turns out she had Myotonic Dystrophy. She wasn't diagnosed until she had her second baby (who was born with it and nearly died). We all get some points for not KNOWING there was something "wrong" with her, but I still remember how I felt...that she wouldn't be so tired all the time if she'd just DO something, get some exercise.

I'll always remember that poor child on my sofa saying, "I'm sorry, I just can't". And how frustrated and yes, judgmental we all felt, essentially telling her she could if she'd just try.
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Unread 02-20-2012, 01:18 PM   #14
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Wow, that is so sad, blessings..
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Unread 04-02-2012, 05:19 AM   #15
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Default Provigil for ms fatigue

Quote:
Originally Posted by Blessings2You View Post
Sometimes I think that should be all one word MSFatigue.

I notice this subject coming up every time there's a batch of newbies. "How would you describe your fatigue?" I don't think there's a symptom any more difficult to explain to non-MSrs than MS fatigue.

According the the NMSS, something like 80% of people with MS experience that fatigue, and it's the primary cause of MSrs leaving the work force. For some people, it's their PRIMARY symptom. Fatigue and its accompanying stupidity drove me to the doctor to start with.

I would go to meetings that started at 6 p.m. and already I'd be nearly catatonic with fatigue. My body was tired, my eyeballs were tired, my brain was tired, my emotions were tired, even my hair was tired. Even if I could have explained it to anybody, I was too tired to try.

I can see where people would get the idea that fatigue is the result of the other symptoms, but fatigue IS a symptom itself. Out of the blue, for no discernable reason, I'd suddenly feel as though I'd pulled two all-nighters, run around the lake, and was recovering from the flu.

I tried Amantadine (allergic) and Provigil (jitters and nightmares weren't worth the tiny difference it made). I've resigned myself that it's part of the deal, and although I can't "cure" it, I have to manage it. And restrain myself when someone (other than MSers) says, "Oh, I know what you mean. I stayed up late last night and I'm tired, too."

So...for the benefit of newbies...how would YOU describe your MS fatigue?
Well ms related fatigue is something I have not had to deal with (most, but not all) of the time. Provigil has worked for me. Prior to provigil, I was on amantadine and it didnt work for me. Now, all of a sudden, insurance will no longer pay for medication because it's considered "off label". This same insurance carrier has paid for this medication since 2006. I don't understand how they can all of a sudden decide they won't cover "off label" uses for medications, when they have been paying for this medication for six years!

I too watched dr oz, montel show and will be going to mothers market to purchase "cocoawell" which is the energy tea he mentioned during the show.

I guess this is another way to describe the fatigue associated with ms, it's so great, you don't have the energy to fight or the cognitive endurance to form an eloquent argument. I'll let you know how the tea works.
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Unread 04-02-2012, 09:42 AM   #16
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Quote:
Originally Posted by Hbjro View Post
Well ms related fatigue is something I have not had to deal with (most, but not all) of the time. Provigil has worked for me. Prior to provigil, I was on amantadine and it didnt work for me. Now, all of a sudden, insurance will no longer pay for medication because it's considered "off label". This same insurance carrier has paid for this medication since 2006. I don't understand how they can all of a sudden decide they won't cover "off label" uses for medications, when they have been paying for this medication for six years!

I too watched dr oz, montel show and will be going to mothers market to purchase "cocoawell" which is the energy tea he mentioned during the show.

I guess this is another way to describe the fatigue associated with ms, it's so great, you don't have the energy to fight or the cognitive endurance to form an eloquent argument. I'll let you know how the tea works.
Provigil is now availabe as generic and maybe you can afford it without insurance. Goodluck. I'll have to look for the tea.
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Unread 04-08-2012, 04:13 AM   #17
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Quote:
Originally Posted by Hbjro View Post
I guess this is another way to describe the fatigue associated with ms, it's so great, you don't have the energy to fight or the cognitive endurance to form an eloquent argument.
Lovin' this description!

Thanks

Lyn
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Unread 04-08-2012, 08:22 PM   #18
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I get up and do just a little and want to lay back down. In the three years I have known I have MS, this last week has been the worst. Friday thru today, I have been in the bed most of the time. when I get up I feel achy. Not the numbness feeling but a weird feeling running up and down my arms. I normally do really well so I am just trying to listen to my body and rest. Back to work tomorrow
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Unread 04-11-2012, 10:27 PM   #19
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Frown M.S. Fatigue and Related 'Challenges'

Hi. I'm brand new to this site. I stumbled (like the pun?) onto it accidentally and it was so refreshing to see people who actually 'get it' writing about this topic....Like someone else said I'm too tired to keep trying to explain the feeling of MSFatigue (I also agree with the 'all one word' suggestion).....For me, I tell 'civilians' that it feels like a heavy lead blanket (think the lead protective thing they put on you during an x-ray, but times 20) is put on top of you and it's weighing you down so you can't do anything even if you wanted to.... My M.S. symptoms are really progressing (stayed the 'same' for quite a while and is now changing).... Besides the physical challenges of falling and breaking things (wrist, ankle, lumbar/sacral, my pride, etc), the cognitive issues are really hitting me harder..... It seems like at work I'm having to work 10x harder than anyone to 'cover' up the fact that I'm struggling and taking longer to do things I used to do quickly.... so I end up exerting so much energy just to keep this 'on the down low' from others besides my really close friends. Know what I mean? I feel like I'm becoming 'stupid'.... So frustrating.
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Unread 04-12-2012, 10:08 AM   #20
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We hear you Baby and empathize.. So sorry that you sx are worsening. Are you on any of the MS meds?

Hang in there..
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