Thanks for all your replies. Always nice to know that others can relate. It is so hard to explain it to someone who hasn't experienced it. The walking in water analogy for that heavy feeling is perfect, Ren, that's it exactly.
I am going to talk to my neuro about amantadine or something along those lines, but as before he may discourage this as he wants me on as few meds as possible, and nothing that he thinks might interfere with my sleep.
It's really having a huge impact on my life right now: still not working (also b/c of relentless pain); no energy to even considering travelling right now, even though my husband is in desperate need of a vacation; supper is a task of assembling as opposed to actually cooking food.
Today I was actually a little better; I slept 13 hours last night so that might be why. Just don't want to be sleeping my life away in order to have a couple good hours a day. Ugh.
I have that too on and off unrelated to an attack. For me, it's almost like I'm so used to the general tired, that when the actual fatigue lays ontop if it - it throws all I'm use to getting through into a whirl.
I get the same way but my extreme fatigue usually means I am starting into a flair or I have a UTI. I always rule out the UTI before I call my neuro.
I have been down like that for the past 5 days and my SS nurse told me to call my neuro to see if it is a flair.
Wishing you the best, hoping this passes soon for you so you can feel "normal" again.
Hugs,
Paula
Hey girl! I was at the clinic on Thursday to see my wonderful neuro (which I wouldn't have if it were not for you!). Your doc seemed really busy but pleasant as always as was mine!
I am now on Amytriptyline, Tegretol AND Gabapentin so with the Gabapentin added I can only imagine what the fatigue will be like! :( What I wanted to say though is that before I started this last med, I was like a yo-yo with my fatigue and when it hit, it hit hard. I do have the drunk feeling and the slurred speech but my doc seems to think it's due to the TN pain I have been having (which is getting worse). He is going to send me for a new MRI (and can you believe HE suggested it?) so we shall see what the future holds I guess. I hope you can find the culprit that is making you feel so icky all the time soon! I mean, there really is a big difference between the drunk feeling we get and the real thing and unfortunately for us it just doesn't have the same pleasant effect as the real thing!
Oh yeah, my doc also has me on Amantadine for fatigue and not only does it seem to help with the sleepiness...I don't get the regular colds or flu bugs others do which is a real help for people with MS. Maybe your doc can suggest something to help with the fatigue cause I doubt he will take you off the other meds if they are helping you live as close to normal life as you can right? Keep us updated girl and in the meantime, take care and enjoy our spring weather...you are getting the nice stuff we are aren't you? Hope so cause the water is running here in Edmonton!
Lots of Hugs,
Rena
Ugh - all of you! I can SOOO totally echo your posts! I get to these points where I have no choice but to get horizontal.
I am lucky, though, that my fatigue comes and goes throughout the day. I'll have a few hours where I'm totally useless, followed by a few hours where I'm more energetic. I take advantage of these hours ;-)
Like Alex, DH keeps an eye on me and kind of "picks up the slack". I'm grateful!
Hugs to all of you!
Like Karen, I too, could steal your notes and give them to my neuro. They have already said it's the meds or part of my current relapses but no real answers because as my honest down to earth neuro said ,"We simply do not know".
He told me some of his patients feel like this , especially with even the mildest of diseases that go unnoticed. Others never have any inkling that they have been infected or that the relapse is hardly there, just extra fatigue(lucky duck!)
I told mine of my extra symptoms on Friday and he said he would do 5 days with a longer taper but since i have tysabri tomorrow that isn't possible. N....i....c.......e. Feel awful and then I get to feel exhausted on Tuesday some more. Sorry for the sarcasm and going off topic.
I do understand the weighted down feeling. One of the closest sensation of the body fatigue would be like walking and functioning while immersed in water. The off balance everyone keeps telling me it's the relapse. It's not. This is different , just as you described about the disequilibrium, almost like drunk but no memory of having a drink.
It is hard to make someone understand, especially if they can't "see" the symptom. Luckily my neuro understands and lets me vent but alas he has no rimed either.
I hope you eel better. If you figure out the remedy, let me know please. When my intention tremor goes away as the day progresses, I'll add what minute flakes of golden knowledge my neuro has imparted. At least he knows this a real symptom , no just part of the relapse.
I do hope this phase passes and you start to feel better. Take care of your self as in spoil yourself, You've earned it!
Ren
My MS super charges my nervous system and I get too much adreline. Then at some point it runs out I get too tired. I actually will have not taken any medications to make me drunk or spacey. I am so tired and so spacey for a few days. My husband recognizes it and calls it my high gravity days. I am not only pulling my body but I can't talk or think. I have learned I have to retreat to the recliner until I am back to normal. It is like I have a diving suit on with 80 pounds of weight. Luckily he picks up the chores and says nothing about it, he is a keeper.
Alex
Me too. I could have written your post myself.
I also wonder if these fatigue episodes are my relapses since I've had few symptoms other than fatigue and pain for many years. As usual, I'm just waiting them out. Will have to ask my neuro about this next visit.
Hang in there. I've heard that Amatadine is now being used for persons with brain injuries with good success. I'm considering giving it a try.