Thursday, November 26, 2009


What is "MS" tired? It is not the usual sleepiness you feel after lunch. It's not the dragging feeling the morning after the night before. It's the "get me to a bed before I drop to the floor in the grocery store" kind of feeling. It's giving your shopping cart full of groceries to a stock person to put away because you just can't make it through the checkout. It's going to a baby shower and leaving after an hour because you can't hold a plate with cake on it for one minute more. It's not going to movies because you're afraid the low lights will allow you to drift off during the trailers and not wake up until the movie's over. It's getting home from work and going straight to bed without eating supper because you just don't have the strength to put food in your mouth (and then waking up famished and grumpy because of low blood sugar).

MS fatigue can hit at any time. Middle of the morning or afternoon....after a full night's sleep, it can hit two hours after you get up. What you have to do is manage it.

For the past couple of years, I have napped on weekends. Saturday and Sunday afternoons would find me curled up in bed instead of outside playing. I would fight the fatigue all week long, drinking cup of coffee after cup of coffee. I don't think the caffeine kept me awake so much as my bladder. Most days after work, I'd go home and put my feet up for a rest, sometimes having a short nap. But since I was laid off I've been napping like Rip Van Winkle.

At first, I thought I was just catching up on sleep, as I hadn't had any length of time off since last year. I decided to take the rest of the summer off and hiked, biked, and napped. By September I was ready for a more regular routine but come lunch time every day I was zonked. I could have slept in til 10 but by noon I had to go back to bed. Very strange. A month of that and I was getting a little concerned. I wondered if I was depressed, as constant sleeping is a symptom of that; I realized that once I had a nap I was fine, so, nope, it wasn't depression. I concluded it was that dreaded MS fatigue.

I've had short bouts with that fatigue over the years; a day or two of rest and I seemed to be recharged. Even sometimes at work, simply laying (lie-ing?) on the floor for 10 minutes would be enough to get me through my day. This time, though, rest didn't seem to be helping in the long term. I initially felt that if I were going to have any physical manifestations of stress from the lay off, I'd see them about 6 weeks after the fact. And that appears to be what has happened. For all of September and October I can count on one hand the days I didn't have a nap.

There are a number of things you can do to maximize your energy levels if you are subject to MS fatigue. I won't get into them here, as people more learned than I have detailed them on their blogs or web sites. I'm trying to do all the things they talk about, eating right, regular exercise, blah blah blah. But I was still exhausted at one o'clock in the afternoon. And once I start working again, I doubt they'll let me go home for a 2-2.5 hour nap.

I stopped in at the MS clinic a couple of weeks ago to talk to Mike, one of the clinic nurses, about meds for fatigue. Long story short, I've got a prescription for amantadine. That doesn't mean that I can't still have the occasional nap, but now I have the choice.



Have Myelin? said...

I hope it works for you! This is a frustrating issue.

I find that with MS I get fatigued but I cannot sleep...two separate things. I hate to take anything because it revs me up, baby! Then it compounds my sleeping problem. GRRR...

Good luck!

Shauna said...

So far, so good....I've only taken it a couple of times, between 11 and noon and it keeps me going all afternoon. There seems to be a "rebound" effect as by 5 I'm really pooped, but the Wookie has pointed out that because I'm awake, I'm doing stuff and may be doing more than I should and am just making myself tired. Either way, it's doing the trick.

I've noticed, as well, that night time sleeping has been disrupted in the past few weeks. Waking two hours after falling asleep and staying awake for an hour or two, that sort of thing.