MS Fatigue
 

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?

No one understands M.S. unless they HAVE M.S.
Try some B12 drops or lozenges that dissolve under the tongue. They may help to take the edge off the fatigue.

Yesterday Montel Williams was on Dr. Oz and he swears his energy level has quadrupled with his morning smoothy of spinach, pineapple and watermelon, vitamin b12 and some other stuff. You'd have to look it up. It was on Dr Oz just yesterday and Montel has suffered with M.S. for quite some time.

Here's wishing you some energy :hug:

I would also use one word, but hyphinated....It too would begin with f..:yikes:.

As far as discribing it, you did it excellently..:) Then, if I had the strength, I'd punch out all the peeps who say, "Oh yes, me too":rolleyes:..grrrrrrrrrrr!!

When I was in hosp. PT/OT, I explained the MSFatigue to the trainers and nurses, trying to make them understand that it was different than and more extreme than the usual Fatigue. I only had to say it once and they understood and treated me, with the MSfatigue, in mind. I sooooooo appreciated that.:)

Like trying to pull two 100# blocks of cement, that are attached to your legs, through a current of water running against you, while you have the flu.

And I'm not exaggerating.

And with your arms tied behind your back!!!

Like you have been swimming in a pool all day long, and you just hauled yourself out and you immediately miss the buoyancy of the water. It feels like your body is dragging itself down .... like gravity has quadrupled.

I also tried Amantadine and Provigil, the Amantadine seemed worthless, Provigil provides a limited benefit, I may not feel as tired, but I still don`t have enough energy to do much. I had no apparent side effects from either.

I also tried over the counter energy pills and energy drinks, those made me feel wired, and provided no apparent help.

Unlike others I don`t seem to have much of an issue with mental fatigue, mine seems to be limited to physical, and it can be daunting. A lot of my falls came from thinking before my body could keep up with the thought. It is something to be aware of and adjust to, you have to learn to slow down.

I also take B-12 and D-3 I don`t notice any difference when I do or when I don`t.

I have a pool, it was a safe place to exercise with out much of a risk of injury thru falling, until climbing the ladder out became a problem.

I learned to move at my own pace, to do what I could and accept that as all I could do and not to worry about what others with out MS think.

Dragging this back out because of something I was just thinking.

I truly never understood what my mom (heart disease) or my sister-in-law (myotonic dystrophy) REALLY meant when they said "I just can't".

People will say to me (or I'll read in an article, or whatever) "All you have to do is mix these three ingredients", or "Just sew two towels together" or "It only takes ten minutes"....

And I think, "I just can't". Not don't want to, not maybe tomorrow--I just can't. Just can't.

I know. I completely understand. :hug:

That is an excellent discription, Blessings.:hug:

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.

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.

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.

Wow, that is so sad, blessings..:(

Provigil for 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.

Provigil is now availabe as generic and maybe you can afford it without insurance. Goodluck. I'll have to look for the tea.

Lovin' this description!

Thanks

Lyn :)

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 :(

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.

We hear you Baby and empathize.. So sorry that you sx are worsening. Are you on any of the MS meds?

Hang in there..:hug:

M.S. Fatigue and Related 'Challenges'
 

Hi Sally.Thanks for the understanding.... I'm realizing how much it means to talk to others who just get it..... Others say they do, they really think they do. they really try to, but they can't really...... Yes, I've been on copaxone injections for about 3 yrs now. I also take Provigil to just get to work most days... but it's not as effective for me as of recently.... I've had to take so many days off lately just because either I can't move or talk or I have some kind of unrelated infection, which of course takes me longer to fight due to the M.S. Right now I've been out for couple days for a surprise resperatory infection... but usually it's due to the fatigue... My cognitive issues are really getting worse. Some scary things have been happening lately. It's becoming more of a reality that I won't be able to keep this up for much longer. I'm killing myself to keep everything going.... Have you or any of the other members had to deal with quitting your beloved career to apply for medical disability? That's what I'm facing and it makes me so upset to even think about it, but it's getting closer I fear. It terrifies me to think of how to even begin.... how to support myself while waiting since I understand I can't have a paycheck when I apply, so I will have already needed to quit or be laid off... It seems almost impossible. I'm divorced. My son is in college and lives with me and is still depending on me.... What do people do about this? I'd love to hear of some stories from this group on how they deal with this.... Thanks so much. I feel so blessed that I've found this group. - Denise

Today's Dr Oz had a few things for fatigue. B12 & Iron are always a great start.

Fatigue!???

I agree that unless you have MS you have NO idea what this fatigue is.

My husband is sympathetic but still does not GET IT!!! I had to stay home from work on Friday due to just being worn out and having more symptoms. Now we have a 6 year old at home who is on School break. I told him I was not feeling well, I was tired and worn out. So on Friday morning at 5:30 am, Lexi gets up- do you think he would move??? NO!!!!! I had to get up. Then because i was home, he decided it was a good time to go do things he wanted to. While he was gone I called the Neuro, What was said, go to the ER if the symptoms do not get better or if they get worse. Relayed this to my husband, thought he would give me a break -- HELL NO!!! So this morning same thing happens. So as I get out of bed I tell him on Monday I am checking into the hospital so I can get some REST!

Do have an appointment with the Neuro on Wednesday. Due to I am dragging my feet, to much trouble to get them to lift up to walk, things seem blurry and just out of wack in my seeing and the eyes are fluttering. Arms feel like lead weights and I am just SO TIRED!! Just want to go and crawl in bed and sleep.

Maybe Monday would be a good day to enter hospital for a few days rest! Seems like that is the only place I will get it.

Geri

Geri, I don't think you will get much rest in the hospital. They delibertly wait until you've conked out to wake you up for some stupid reason.:D

How super of you to take in you GD to raise. I hope you are feeling stronger soon..:hug:

Like being rolled over by a truck...first forwards then backwards...and then parked on.

My daughter & I went on a power-shopping trip (for me). We drove to two stores: the first I did ok...then leaned on a cart; the second was in there for, maybe, 15 minutes...leaned on the cart the whole time; the third one, she went in, I stayed in the car. End of shopping trip.

I came home, she took bags in & I took a two hour nap.

:D

Yup, totally identify. We start out with 5 stops on the list. I decide I don't really need to go to the bank this week; I can order the vacuum cleaner bags from Amazon and skip stopping at Ace; I can get my drugstore items at the grocery store for a little extra $ if I'm not fussy; and we didn't really need Chinese food anyway.

Yep....I start out with great intentions and end up only completing one or two of the things I wanted to do. I know what happens when I push myself too far and I don't like it so I try to stop while I'm still feeling somewhat okay. Still working on it, though............:o.

Sally,

At our local hospital they have this really neat little unit. There are only about 6 beds and they leave you the Heck alone! Ended up there first go around. Only time they came in was when my BP dropped off the charts. Went really low, though I have low BP to begin with. I really liked that unit. Is close to all of the Testing equipment so makes things really nice for the patient. No long halls to go down for testing. I told them that is the only place I want to go to from now on.

But my luck they would stick me on a normal floor and they would bother me all day and night.

Geri

I think the fatigue is affecting me today. My legs feel like they weigh 100 pounds each. I'm okay until I do something....anything.....then I feel like I just can't take one more step. And if I try to I trip because I don't lift my feet up far enough off the floor. I know it will pass but while it's here I just feel so limited. I'm even afraid to try and take a shower. :o Don't worry, though......I can still spritz some perfume on! :p

Kell, is it rainy and humid there? I notice what I call wet fatigue, where the weight of the humidity weighs me down..:thud:

Yep.....thunderstorms all day. But the good news is the pollen got washed away!

Which reminds me once again of my biggest frustration: If I don't make a big deal out of MS fatigue, they won't understand that it's not "normal" (stayed up too late, rough day at work, just had the flu) fatigue.

BUT.

If I make TOO big a deal out of it ("It's such crippling, crushing fatigue that I can barely get through the day without a couple of naps or I cry and can't think straight") than I absolutely KNOW that my kids and granddaughter will think twice before calling me because I might be napping.

If I don't make a big deal, they'll expect me to do things I can't do. If I DO make a big deal, they won't ask me to do things I can and WANT to do.

*sigh

Noone asks me to do anything anymore...*big sigh*

My kids still "suggest" things for me to do. Like going to the Botanical Gardens!! :rolleyes: Are you kidding me??? That's about four miles of nothing but walking. Yes, they offered to push me around the gardens in a wheelchair but I'm just not up for that right now. They don't seem to understand that I--am--slow now. I know it's not their fault.....and I'm so thankful that they are able to get around without anything hindering them......but I can't keep up with their pace and I feel like I'm slowing them down. I'm always waaaaay behind them and, while they stop to let me catch up, it's just another reminder of how slow I really am. :(

I am exhausted today. I have spent the last two hours just lying in bed, but I can not relax. Plus MS symptoms are rearing their ugly head. I just tried the biofreeze I have for my knees on my rib cage and back:rolleyes:.

And yet, I am still going to my book group this evening. I do plan on parking on the street instead of driveway so I can make an early exit. I feel like I gave up doing too many things the first year that I was dx, and I am not willing to give up some of the things I enjoy at this point. Fatigue/ spasticity ... have robbed me of the ability to travel,shop, goes to art festivals ..., so I am going to go to my book club - gosh darn it;). And I am going to try to go see a local production of Godspell on Saturday night.

I know what you mean, Barb. If it weren't for the unrelenting fatigue and exhaustion I'd probably be up for walking around the mall or even the botanical gardens. Yes, I'd be slow but if I could do that without the feeling of dragging around cinder blocks tied to my ankles I'd do it!

You know, sometimes affirmation STINKS!

I found myself wondering--what if the biggest part of my fatigue really IS depression? What if I really WOULD feel better if I didn't just schlump around all day, not bother to get dressed some days, sit in front of the window/computer for hours?

Well, this morning I did three loads of laundry, made a baked macaroni and cheese, then had company for the afternoon--just my daughter and her little dog. That's it. And I'm so tired I'm almost in tears.

No, it's not all in my mind. No, it's not just depression. No, it's not laziness. It's MS. And it bites.

Well, B2Y, I wish I had the magic spell to fix it all. And you know what? It's depressing not to be able to do the things we want to do. I'm not talking about stuff that would be challenging even if we were in perfect health.....I'm talking about just what you described - visiting for the afternoon with a family member. Just run of the mill ordinary stuff. I think that's why other folks cannot grasp what this means to us. We say we cannot possibly go out somewhere and then entertain company at home the same day. This is the "ordinary stuff" we can't do anymore and it's hard to explain it to someone who cannot relate. I just want to go out to lunch, shop a couple of hours and then go to Starbuck's with my friends. Doesn't sound very hard for the average person......but I'm not the average person anymore. Yet.....I'm so very thankful for what I can still do. I don't want this to sound like I'm not grateful or that I'm whining. I'm just stating facts.

Me too me too me too...bahhhhhh!!!:Viking::Crazy 2::Slip::Sinking:

Old People with Food on Their Clothes

I remember back 20, 30, 40 years ago--I'd see elderly people, especially women, with food stains, or actual food, on the fronts of their blouses. I'd wonder, Do they not see it because their eyesight has failed? Do they have early dementia? Are they just too lazy to change clothes? I'll never do that!

Seriously? This morning, as I'm putting on an "almost clean" sweatshirt with just one spot where I dripped applesauce and I'm not going anywhere anyway and I can make it go one more day because it doesn't stink or anything and now I don't have to bend over and paw through the drawer....

And it hit me. I'm one of them!! Now I get it! When you don't have enough spoons to get through the day to begin with, it's just ONE MORE THING. And I'm not even in the era where most clothing had to be ironed.

Would I change clothes if I were going out in public? Of course. Well...maybe to the Post Office. You can always feign surprise and say, "Oh my goodness, I must have spilled something on me just before I left the house!"