I’m wondering what people mean by saying the word “fatigue” when talking about MS. I’m wondering because I get the impression that people usually mean that they feel like they need more sleep. Is that what most of you mean? I really don’t experience that more so than most “normal” people do. Lately, I’ve realized that what I’ve meant when using that term is muscle fatigue, that is, my legs feeling like I’ve climbed 20 flights of stairs (in the good old days--I can barely climb one flight now.)and like they’re going to give out. I’m sure that a lot of you get that leg feeling as well, but I suspect that’s a separate thing.

The reason I’m asking is that I have my first visit with an MS specialist on Dec 9, and have been putting a lot of thought into what I’m going to say to him. I don’t want to waste time talking about medications for something that’s not a problem for me.

TIA to anyone who can clear this up for me.

During my working years there were days when I worked 16 - 17 hours on the docks loading and unloading trucks and driving. I never felt as physically fatigued then as I do now.

I haven't once woke up after sleeping, sometimes for 12 to 16 hours in 10 years and felt physically refreshed. Mentally I am still sharp, but just too exhausted to move at times.

I just have that constant, nagging feeling of just finishing a brisk walk or mowing the lawn.

Not that I have walked briskly or mowed the lawn in years.....but I remember the feeling afterward.

Gosh, I'd love to have that feeling again for those reasons. Now, I just have to get out of bed and that's enough.

Exactly....and you didn't have to be doing anything!!!

That's not always with me anymore, only when I exert myself,
to do something, other than sitting at the laptop.

For me, it's muscle weakness. Just sitting here at my computer I can raise my right leg about 3", the first time. Second time, a little less. After that, it's not coming off the floor. There, presto, I'm fatigued. Not all-over fatigued, but enough that if I get up and try to walk it will be noticeably more difficult than if I hadn't tried to lift my leg. That tiny action will show in everything I do until I rest for a few minutes.

Believe it or not, I can hike in the woods for over an hour. But my weakness would be way more advanced after that.

Joan - For me, fatigue has nothing to do w sleep. It is a complete an utter physical fatigue that prevents me from doing one more thing.

One of the irritating things about this is that it is unpredictable. I don't know if I can miraculously "shop for 3 hours" like Debbie D. mentioned recently or if I will get ready and find out that I can't actually go at all!

When this happens (fatigue) all activities are stopped (yes I try to push on- bad idea) and I need to get flat- at least have my legs up on the couch. I let DH2B know that nothing can be required of me.

At home, he is very used to this. When others are involved it is more difficult. It is still my best policy to, "Stop before I drop."

I hope this helps,
ANN

It seems I have 2 types of fatigue. Or maybe it is one but causes the other. I get muscle fatigue and whole body fatigue, like I just ran a marathon or I'm coming down with a terrible virus and I just want to go to bed. I also can sleep 8 to 10 hours a night and wake up feeling like I didn't sleep at all. My mind is working and alert but my body doesn't feel rested. I also get tired as in sleepy tired and have no other choice but to nap. I have to take a nap every day between 10 and noon and then an hour rest in the later part of the afternoon (around 4). Sometimes I feel rested after my nap, sometimes not.

I get the muscle fatigue after activity as well as the too exhausted to move thingy with or without activity. I've had the latter come up on me while out walking or while doing other things like washing dishes, cooking, bathing etc. I just have to stop then and find somewhere to sit or lay down.

I've walked 15 minutes from my truck when exercising my dog and then spent 3 times as long getting back to it. Then have had to sit in my truck for up to half an hour before I can drive or have to call someone to come and drive me home. That sort of fatigue seems to be more common for me when it is warm out, so I'm pretty careful in the summer months about going very far from home or my vehicle.
Of course, my dog thinks those days are just awesome because he gets to sniff about, play with sticks, and thoroughly enjoys himself while I sit and rest .

On top of that, I now also have what seems to be more of a brain/neurological fatigue. It causes a type of narcolepsy (unexpected falling asleep), if I sit still for a few moments.
It isn't always there, but when it is, I can have over 10 attacks in a day. When it hits, my mind gets sort of stunned, what ever may be in my hand drops to the floor, and either that wakes me up or I catch myself mid doze-off as my head bobs forward. It isn't fun to wake up as I'm about to face plant into a bowl of soup or onto the keyboard of my computer. .

When I talk to my neuro or PCP, I avoid using the word fatigue and describe what I am experiencing instead; and do so in terms of how the muscles become weak after activity, excessive sleepiness, extreme bouts of general weakness or sudden loss of consciousness etc.
That usually prompts them to ask more questions, rather than them assuming that they know what I mean.

Hope that this helps.

With love, Erika

Good description, Erika! You did a much better job at describing some of it than I did. Also, good idea about describing what you are feeling as opposed to saying, "I'm fatigued." Fatigued means different things to different people including doctors. Describing how you muscles feel after getting 1/2 way through a shower gives them a better idea of what may be going on and will help in better diagnostics and treatment.

I agree with Erika from Canada. You are better off describing how you are effected and how you "feel" rather than use the term "fatigue". Fatigue is usually used to describe a "tiredness". It is different than muscle weakness or sleepiness. All three may be involved, tired, weak, and sleepy, but to just use the word fatigue may not present a full and accurate picture for your physician.

I do not have MS, at least not that I know of and I do not have the usual symptoms of MS but I do suffer with extreme fatigue. I do not have muscle weakness. I may have no right to be making a comment since I do not suffer with MS but I agree with Erika that descriptions are better than terms.