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Avatar universal

A different fatique

I thought I knew fatique.  I was dx w/ CFS in 1995, Narcolepsy 2004.  Fatique/ falling asleep, has been a chronic battle for me.  But now, this fatique has got me whipped.

It's hard to explain. The best I can say is it is such an effort to move my body to do anything.  Try to wash a dish or pull a weed it's like I have to draw every bit of strength from somewhere deep inside to even attempt it.  I find myself groaning like I have been lifting weights for hours with the simplest of tasks.

I am finding it hard to even accomplish even mental tasks.  (like going to computer to get bank infor for check book). I haven't even been going anywhere because it seems like such an effort to get around let alone go out.  (It's not depression, I know the social isolation, feelings that go alone with that from earlier experiences when I first got CFS and had to be off work!)

I am on Adderall for fatique and excess daytime sleepiness for my other dx's and it helps, but it is not touching this kind of fatique.

Does this sound familiar, does anyone have any suggestions?

I am desperate!! Any replies would be greatly appreciated.

Have a great weekend all.
Karen

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Avatar universal
Sllowe and all.  Thanks for your replies. More info and questions.  

I was just referred to a new neurologist and only saw her one time.  I was supposed to have seen another doc in the group that I had seen a couple of times in the 90's when I had months of vertigo on 2 different occasions, and is supposed to be better with  MS.  Somehow I got this new lady.  

Her exam was so short that I never got to mention the extreme fatigue to her.  She didn't have me walk heel to toe, on tippy toes, heels, and only checked my reflexes on the way out when I mentioned to her that I did have hyper-refexes.  

She did set me up for more MRI's, but when I went and talked to the tech she agreed with me that I should get them done somewhere else.  Their machine was only 1.5T and she never heard of the McDonald criteria.  This would have also been at least the 3rd place were I had MRI's done.  I thought I should return to the last place b/c they have a 3T and will have an older one to compare part of the spine with.  

So I went to pick up the order to schedule the MRI and found that they ordered it for the brain, thoracic spine and lumbosacral area.  No cervical area.  I do remember her drawing a line across my back with her pen and mummbling something about a definite line.  She did take a pin to my rectum (had rectal leakage without feeling it) and I didn't feel it.  See newbies and limbolanders - embarrassing topics are here and OK!

So another question I had and tried to research but didn't find anything is,  MS has nothing to do with the lumbar/sacral area right?  I think I remember that, but maybe I was making it up in my head.  Why would she skip the cervical area?  I do have numbness/tingling in some of my fingers with a negative EMG.  

On a side note, I have had new trouble this summer with edema.  Usually worse in the morning.  Mostly in hands and feet, sometimes periorbital.  I have good cardiac function so I know it is not the cause.  Does anyone have trouble with edema, or is this another issue all together?

I don't have much faith in this doc and the tech confirmed this as much as she could without saying it directly.  I get the Mri on the 24th and supposed to see her on the 28th.  I guess I will hear what she has to say then, but I really wish to have the other doc.  

Sorry for such a long post.  I had all this running around in my head.  I was hoping asking the questions would allow it to quit swimming up there!!  

Thanks for any and all replies,
Karen
Helpful - 0
198419 tn?1360242356
Hey Kmil,

Fatigue is one our more life altering chronic symptoms.

Before my 1st attack, I never knew the difference between tired, sleepy and true fatigue.  

Supermum describes it well with her two different versions. One being more extreme than the other. Fatigue, when it's at it's worse you can't work through it, a meal won't cure it, sleep doesn't perk you up.  You simply cannot hold your eyes open, and your head and body up, and when you wake up, it's as if you never slept.

Kmil - though you are undx'd, you should still bring this up to the Dr. next appt.

ttys,
shell

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Avatar universal
I too have been dx'ed with narcolepsy/cataplexy.  I had mixed results with Provigil and could only use a 75mg - 100mg dose.  

There is a new generation of Provigil called Nuvigil.  For my body chemistry Nuvigil is a winner.  Ask your neuro for a sample of Nuvigil and give it a try.  

Also, have your thryoid levels been tested?  You could have an underlying thyroid disorder which is contributing to your fatigue.

And, you may consider having a sleep study done.  There may be something that is preventing you from sleeping.

My extreme fatigue battle that basically kept me house bound lasted about 18 months.  At this point it is at bay.  I take .5mg Ativan at night which helps me shut down and sleep.  As you know, with narcolepsy any "sleep aid" can have horrible results for us.  The Ativan doesn't cause sleep but it helps my mind shut down so that I can sleep.  Without the Ativan at night I don't think the Provigil and now Nuvigil would be as effective.

Good luck, Jules
Helpful - 0
410281 tn?1254229064
Ah!  I thought I was just becoming lazy in my old age (32!!!)  I sometimes feel like just standing up is an impossible task. My hubby, of course, told me I was getting old - even though he's older.

Glad I'm not alone!
Helpful - 0
987762 tn?1671273328
COMMUNITY LEADER
I experience 2 different types of fatigue, one that simply gets progressively worse as the day goes on and requires huge amounts of fuel (6 meals + snacks + glucose tabs + shakes)  to keep my energy up enough to function like a 'normal' person, I still need rest through out the day or im crashing by 5pm.

I was told by my GP i was 'probably' hypoglycemic but no test has proven this (not anorexic, thyroids fine, not pre-menapausal, not depressed,stressed,anxious and my blood work ups are always normal), if i'm doing something that requires energy i can pull it off for a short time and then my energy just disapears, eyes pop, struggle to speak and i semi pass out (awake but unable to respond), i try not to get this low cause its hard to explain why i'm suddenly a limp noodle and eating sugar. It feels like i have to stop NOW and stuff my face or i'll colapse, people say i just suddenly deflate, this is what i call my managable fatigue. I tend to be hyperactive or asleep because of the amount of fuel i need is hard to get right.

The other type of fatigue is totally different, it only happens when i'm having one of my episodes, nothing makes a difference to it, it is all consuming and i can only ride it out. I eat and sleep round the clock for days on end, flueling my body doesnt touch it, there isnt enough energy to hold my self up in a chair let alone stand. I am dead but alive in a body that i cant control, even my mind is affected no thoughts no feeling nothing but heavy gravity holding me hostage. This is when i long for my end of day fatigue to come back, this second type is 1000 times worse and there is nothing i can do but wait it out.

It is only when the fatigue shifts a little that i can get working on all the other things that are happening to me, all the shaking, spasms, spasticity, language etc this years episode was bad, i needed the fatigue to reduce enough for me to re-learn how to walk and talk before it does i am dependent on others for everything. I know that i can fight what is happening when i have enough energy to hold my own body weight, the fatigue makes it impossible to change my reality it is in control of me and i dont like that one little bit!

I dont have any drugs to take, i'm sure it doesnt need to be this hard but my dr doesnt seem to think its that much of a problem if i can manage most of the time. I should be as big as a house but i'm still struggling to keep the weight on, i float around 45 - 47 kilo and drop weight quickly with out trying, i take after my dad there. Oh well just thought i'd tell you that there is fatigue and then there is fatigue, i'm sure others have the same problems with fatigue too.

Cheers.......JJ  
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Avatar universal
Thanks for the comments.  Unfortunately, I had tried Provigil when it first came out.  It never even came close to the effects I got from Adderall.  So I doubt that there is a medication out there for me.

I guess I just thought since I'm in limboland, that I shouldn't have this kind of fatique!  Go figure, one of those brain farts I guess.  

I just know this has been a bad summer for me and I want to go out and play in my yard!

thanks all,
Karen
Helpful - 0
620048 tn?1358018235
Hi Karen,

The kind of fatigue you are speaking of is all over this website.  Mine stared quite awhile back until it got to the point you speak of, before my diagnosis.  I have been on Provigil a long time now and it works well for me.  It was great when i first started it...its expensive, i even paid full price for it once.  Otherwise, i would not get up off the sofa.  You might check into it and there will be a generic out soon, just not sure when.

Good luck ...

hugs, meg
Helpful - 0
Avatar universal
Hi, all i can add is i think i know the fatigue you are speaking about. i've had it for years on and off. worse in the summer months. mind numbing fatigue! no amount of caffeine helps, nada.

of course i've mentioned this to my doctors. asked for med for it, he doesn't like giving out that type of med.

he thinks it due to me not sleeping much/well so he prescripbes an AD for sleep at night. here we go again with the VAs love affair with ADs.

if they gave me a real med for fatigue they would probably have to justify a diagnosis with it -- and they don't want to do that. so pop more ADs

i truly know the fatigue you speak of. i have no ansers except to let you know your boat has mroe than one passenger.

take care




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