Extreme fatigue

We have talked about fatigue many times before on this forum, but I don't remember anyone telling of it hitting them like it does  me. Of course some times I have trouble remembering my own name so that could be what it is. :)

Anyway last night at about 7PM the fatigue hit me like a ton of breaks and by 7:15 I had to go lay down for a nap. I set the alarm for 1 hour but when it went off I just rolled over, turned of the alarm and went right back to sleep. I didn't wake up until 7AM this morning.

Today I had to go up to the VA 2+ hours away for a C&P exam but was only at the VA for about 15 minutes before I was heading home again.  But still by 12:30 I was fighting to keep awake again even after sleeping for 12 hours last night.

Usually when I get this extreme fatigue it means that I am entering another flare up of MS symptoms and I have noticed when having mu lunch that both hands were having tremors even though my medications have had them under control.

So my questions are:

Does anyone else have the fatigue hit them like flipping a light switch? One second felling OK the next can't keep your eyes open.

Does anyone else end up sleeping these large amount of hours? A couple of months ago during one of my flare ups I was sleeping 16 to 18 hours per day.

Dennis

[Doll555]

Yes, I have fatigue hit me all of a sudden. I will be fine and then bam just a wave of exhaustion comes over me. Sometimes it happens when I am cooking so I assume it is from the heat. Other times for no apparent reason other than my darn MS.
It is not uncommon for me to be asleep for the night at 7pm and I will sleep till 7 the next morning.
When I am in a flare the exhaustion is constant, it does not let up.
I hope you are feeling better soon!

[BOK2Bjan]

I also have extreme fatigue that comes in waves.  I'll have a week or so where I could sleep non stop.  Then I'll have a period of time when I'm my normal self (tired, but not practically narcoleptic).  I hate it when I'm that way and it's becoming more and more frequent.  Now, I look forward to spells when I have some energy rather than the other way around.  I've been given all sorts of meds, but I take them sometimes, but not all the time.  When I take it all the time, it doesn't really work as well.  I don't think there's a good answer - it seems to just be part of many people's ms.  Lucky us!

Wish you the best, Jan

[PastorDan]

Me too.  One minute I am chatting away; the next I fear I will slide off my chair - and I actually have before.

Flare.  Hmmm.   I've accepted the term "relapse" in reference to myself; not sure "flare" feels right.   Takes some getting used to.  Definitely felt the fatigue more and slept more since September.  Before that, I had 30 wonderful months of (almost) total remission.

[Sailorsong]

I use the "FLARE" term since I am PPMS and don't get remissions.

Dennis

[supermum_ms]

Hey Dennis,

I dont like to think of it as sudden, I'd rather think of it as creeping up on me and i'd missed the warning signs but honestly sometimes it really does feel like someone just suddenly turned my on button off. lol  Fatigue was one of the hardest sx's for me to explain and to be understood, I seriously believe because I am a skinny female i got every crappy explanation you can think of.  The way my fatigue played out, was one of the reasons my old dr got stuck on Hypoglycaemic for so long, forget perfect blood work, stuffing my face all day long and it only happening for odds blocks of time, that all said otherwise lol

I am actually never more aware of the sudden impact, as when i'm wakeboarding, not what i was once like lol but still the adrenaline is running high, i'm in seventh heaven doing something i really love doing. I fall, ok I fall a lot lol but i'm still going for it, having a ball and then i'll just crumble, literally fold in on my self, i have nothing left and i do mean nothing lol dead fish in the water. DH says he can actually see the difference, i seem to go boneless before his eyes lol I'm pretty useless, standing up on my own steam is definitely out. All i can do is sleep it off, its all i want to do and i really dont care where I am because i can't fight it though i have tried!

So yes count me in too.

cheers...........JJ

ps Fatigue is like a sirens call, simply impossible to ignore lol

[jibjen]

Hello,

I have extreme fatigue that hits me all of a sudden and I just have to stop and rest, however recently have had this fatige for a while and have been exhausted and in bed at 7:30 and out like a light.

I just had a sleep study completed this week after talking to my doc as I am sleeping quite a bit yet still tired. He wanted to rule stuff out before he looks at any medication or other things.

I know how you feel, I will I could nap at work but don't think the boss would like that..

I'll let you know my outcome.

Jibs

[PastorDan]

Terminology can be a peculiar thing.  I see where you're coming from on that, Dennis.  We'll pray that you get relief, whatever you call them.

[Guitar_grrrl]

Hey, Dennis!
Fatigue is one of my worst, most consistent symptoms.  It hits me hard just around 8:30 in the morning for a couple of hours, and again at about 2:30 in the afternoon for a few hours.  

I started taking Provigil on occasion last year, and have started taking it more consistently since August.  I find it really helps, especially on a day that I'm working, or I know I have a big day ahead.  Driving to the VA, jumping through the C&P hoops, etc., would definitely be a "big day" for me, although you'd probably be better off as your "real self" for the C&P. Just sayin' ;-)  

In any case could/would your doctor prescribe this for you?  It's been most helpful for me.

[SarahL2491]

I couldn't deal with fatigue without Provigil now that I can afford it!
Mine too will hit me early in the morning and by mid afternoon, even
if I've slept all night...........like you just can't go any further, heavy fatigue, like fog would feel to you!  (weather fog)

[debgen]

Hi Dennis,

I know exactly how you feel....me too!

Now that I am retired, my daily naps have become my survival routine! That and lots of coffee keep me functioning! LOL

I am having one of those very sleepy days today. I keep nodding off. On the bright side, I always sleep very well through the night!

Hang in there Dennis :)
Deb

[twopack]

Sometimes the "instant lights out" type of sleepiness overwhelms me.  I have times when I'm easily up until two or three in the morning but other times I can barely make it until ten or eleven.  I think there are a variety of reasons.  Many times I can't figure out the WHY part of it.

The switch flipping feeling I am more familiar with has to do with cognitive skills.  I only last so long even at optimal temperatures.  Surpass time or temperature limits and I can literally FEEL the power down effect.  I immediately slow down, lose my train of thought and start searching for simple words.  

It can also be likened to what happens when a plug is pulled and water begins to drain from the basin.  I know my cognitive ability is swirling down the drain.  Worse yet, nothing but a good sleep is going to fill 'er up again.

[BOK2Bjan]

I just hate that you all are going through this -  BUT, I have to also admit that it is nice to not feel alone with this awful fatigue problem.  My worship arts pastor at church has ms also and he and I talk on occasion.  I asked him last week how he was doing and he mentioned the fatigue thing and that his doctor had put him on provigil and it helps so much.

I have the problem that it doesn't go into effect until later in the day and sometimes right when I want to go to sleep.  I've set the alarm at 4am to take it and then go back to sleep to have it help more earlier in the day.  A few years ago, I was put on ADD meds and then methylin.  I ended up having a medical crash with all the drugs and went off of all of them at once.  I felt better and didn't take anything for a long time.  THEN the fatigue was knocking at my door so hard and I was spending almost all my time in bed, so now if I need to do something - anything - I'll take a provigil and it helps some.

I think fatigue is the most debilitating symptom of all.  Yes, extreme pain puts me down like being hit by a truck, but with the fatigue, even if you feel well enough to do something - you're too tired/sleepy.  It's a mess!  Oh, whoa is me! (A little whining for all of us)

Blessings, Jan

[Sailorsong]

Thanks for your comments. My MS Neuro put me on Amantadine for fatigue as a trail to see how I would do on it. Started out with one at 7Am and another at noon. But quickly found out the Noon pill was making it very hard to get to sleep at night. So I had been taking it only at 7AM.

With that schedule I found I was able to keep going until around 9 or 10 at night. But I also started having nightmares almost very night so my shrink doesn't want me to take it. But even when I was taking that I would still get the light switch fatigue every once in a while.

I keep forgetting the name of Provigil when I see my doctors to ask about it. Since it seems to work so good for others on here it probably isn't on the formulary at the VA so I would be able to get it.  :)

As a side note I think I am entering yet another flare of my MS. I have been getting intention tremors in my left hand (NEW), and today I almost fell a half dozen times due to loss of balance. Oh and my vision has also gotten very blurry compared to my normal.

Dennis

[zigfried]

I too have ms and fatigue is a major issue for me. I also suffer from spasisity as well. I get no other symptoms from ms but those 2 are enough believe me!!! I take no medication much to my neurologists dismay. He wants me to take copaxone but i am extremely afraid of meds and dont even take a tylenol if i have a headache. My question is does the provigil make enough difference that its worth taking and r their any unfavorable side effects with this medication? I am so afraid to take anything for my ms due to side effects. Im more afraid of the meds than the disease can somone put my fears to rest so i can get the help i need?

[BOK2Bjan]

Provigil has gone generic and so they've added something to keep their pattent and sell it under a different name to get the big bucks.  I think the VA would cover provigil therefore - is what I'm saying.  I can't remember what the other name is.  I don't think there are side effects that I've felt, but don't know about others.  Of course the staying awake side effect! lol

There are no jitters or nervousness etc.  It's subtle, yet effective -  I'd give it a try.  It does gradually become less effective, so start slow and definitely take it as early in the morning as possible, because it has a tendency to stay in your system a long time (long half life)

Blessings - try it, you might like it lol, Jan

[sruasonid]

Hope this comment is timely enough. hit with sudden fatigue like yours as I was trying to sign in to reply and slept 12 hrs before waking to finish.

For years this happened to me. fell asleep @ wheel of car, in meetings, at rock concerts, in plate at restauranrs, walking dog. No one could figure it out, spouse screamed at me for being "lazy," lost jobs. Finally got new psychiatrist (for years I got diagnosed as "Bipolar" because I'm female and of course if doctors don't know what's wrong, it's all in your head and as soon as medical people find out you're bipolar, they look no further because it's all in your head) who took one session to tell it was neurological and sent me to neuro who immediately said it was MS.

The fatigue hit me so suddenly that I drop. Any time, anywhere. Once in awhile I get 30-60 seconds warning because I've had it so long that I know the feeling. Other times it's for mere seconds I'll "wake up" and discover I've been asleep momentarily and not know where I'm at. The rest of the time I'm so exhausted all day long that I have maybe 2-3 hours a day max that I'm able to even function at all like a human being until I'm forced to lie down. It's horrible. This is not life at all. I'd rather be dead, frankly.

[PastorDan]

Anytime any of us feels that badly, we need to get help right away.  If we can't get help, we need to find someone who can get help for us.  Send me a message if you can't find the help you need.

[grandmalaurie59]

Yes, this happens to me too. Usually around 2 or 3 in the afternoon I crash. I think I am fine and then....I can't stay awake! Yesterday I was SO exhausted (from nothing) I couldn't sit up...I layed on the couch for hours and fell asleep. This has been happening a lot lately.

I usually get a second wind at night....like now. In the morning I drag...feel better then crash, sleep, drag....second wind...this is my "usual" day.

If I am out and about and feeling "good"....I notice I will start to feel weakish and my cog-fog gets worse...I just have to go home and lay down!

Laurie