Friday, March 30, 2012

Time of Day, Fatigue and Walking Ability

Writer, ms.about.com

I don't know about you, but when I am feeling fatigued, things are hard. In fact, the more fatigued I feel, the harder everything is – and I mean everything. I find it harder to think, to talk and certainly to do anything physical.

Therefore, I found it interesting that a European study found no correlation between fatigue levels and how people with MS scored on a walking test.

It is pretty well reported by people with MS that fatigue levels worsen as the time of day progresses. It is assumed by many that fatigue levels affect physical functioning, such as mobility. Therefore, it could be deduced that a person with MS-related mobility problems would do worse on a walking test in the late afternoon or evening than they would in the morning.

In this multicenter test among 8 European MS centers in 5 countries, 102 people participated. The group was split into those with "mild" ambulatory dysfunction (EDSS 1.5-4.0) and "moderate" ambulatory dysfunction (EDSS 4.5-6.5). They were asked about fatigue levels at 3 different points in the day (morning, noon and late afternoon). They also were given two walking tests at the same 3 times of day – the 6-Minute Walk Test and the 10-meter walk test, performed at their usual and their fastest speed.

Here's what happened:
  • Although the people in the mild and moderate ambulatory dysfunction group clearly had different degrees of mobility problems, fatigue levels in both groups were the same.
  •  In both groups, reported fatigue was worse later in the day than it was in the morning.
  •  However, time of day did not affect performance on the walking tests in either group.

This is pretty important stuff to understand. For one thing, if researchers are conducting a clinical trial to see if a certain drug or intervention helps with either fatigue or walking ability, it is important to know whether time of day when these things are being measured or reported matters. Looks like it is not that crucial to measure walking ability at the same time of day. However, to measure fatigue, one would want to make sure to ask about many parts of the day and overall ability to function.

On a personal level, this data makes me wonder, then, if things just seem harder when I am fatigued. I am sure that I am much less likely to want to do anything as the day wears on – maybe, in my case, this is a cycle of being tired, thinking things are hard, avoiding doing them and feeling more tired from not accomplishing things. Perhaps I'll try to fight the fatigue when I can and see what I can really do, rather than assuming it's too hard. It may be worth a try.

However, it should be noted that a research situation is much different than real life. Although participants' walking speed seemed unaffected by their fatigue in the study setting, this does not necessarily translate to meaning that fatigue is not a factor in endurance or simple physical ability to get things done. What I am going to try is pushing through the fatigue on a couple of small things and seeing how that works out.  

What do you think? Do you feel worse as the day wears on? Do you have more problems walking later in the day? What about other things? Let us hear from you in the comments section.

31 comments:

  1. I think a lot is "skewed" by what is financially beneficial to the entity conducting MOST trials.
    We, the patient, are just the "pesky" valiable in their equation to make money.

    ReplyDelete
    Replies
    1. It's not so much the time of day that affects me, whatever activity I've been doing. For example, today getting clothes etc ready for a 2 week vacation. I was totally exhaused after an hour. 58 female, married 32 years, MS about 7 years, retired on SS disability. It veries hour to hour. I use a walker in the house (ranch, no stairs) and a cane elsewhere.

      Delete
  2. I am definitely more fatigued as the day wears on. But I agree with your statement that things just SEEM harder, but aren't necessarily so. And I know that if I am really tired, I concentrate harder on things like walking - because I have to - and therefore, performance is not affected but fatigue is only worsened. Does that make sense?

    ReplyDelete
    Replies
    1. It makes total sense to me!! I can empathize completely! Sometimes it seems like time itself wears on me physically, that leads me to concentrate harder on the simple things that people usually do mindlessly, which leads me to feel more fatigued, creating a snowball effect! *sigh*

      Delete
  3. Personally I find stairs to be harder for me when it gets closer to when I go to sleep. Living in a split level I am very dependent on the rails for our stairs. When I wake up in the morning I swing my legs to the side of the bed and go to stand up. I know I cannot put all the weight on my right leg because that leg seems to be weaker first thing in the morning. After I walk around the house for 10 minutes or so I can feel more power get back into the right side and then I am able to use both legs equally.
    Interesting thought though.

    ReplyDelete
  4. I have fatigue no matter what the time of day :) I too have attempted to adopt your mindset of "pushing through" some of the small things regardless of my fatigue level. It has helped me mentally. Getting down on myself and feeling depressed about what I am unable to accomplish makes me even more tired.

    ReplyDelete
  5. Having participated in a few studies here in the U.S., I do not feel like anyone ever understands fully what fatigue is like for someone with MS. It is not as simple (at least for me) to sit down and rest for 20 minutes and then get up and be able to go full throttle again! I am lucky if I am able to function at 50% by late afternoon AND YES - my brain is the first thing that seems to go, then all else begins to fail! Having broken my leg two years ago makes the walking fatigue even worse now. I wish the world understood that we, with MS, might look and speak well - BUT we do have severe limitations that they could never understand!

    ReplyDelete
    Replies
    1. I'm having that same issue as well. I'm newly diagnosed and even my neurologist doesn't seem to get how disabled I am. I cannot function past getting myself dressed in the morning on my own! And even that seems to be an increasing issue... :(

      Delete
    2. Well said, Antonellini2B! As I read your post I thought, "This woman is me," except I broke my hip instead of my leg.

      Delete
  6. i think they need to study this more. it all depends on eating too. cortisol levels peak in morning and drop through the day. i think cortisol is key to to a lot of the illness and fatigue. i find that my level of fatigue decreases with proper eating.

    ReplyDelete
  7. I am fatigued at any given time during the day. I find if if I have alot to do the mental part of that makes me more tired before I even begin. I was diagnosed at 15 and turned 46 this week. If I give in to the fatigue I wouldn't be able to accomplish a thing but I push myself which in the end I pay for with added fatigue the next day. If its warm out forget doing anything at all.

    ReplyDelete
  8. I am really fatigued in the evenings, no matter what. I begin my days early and like to start out with a workout. If I wait to exercise in the evenings I have no energy. Around 5pm I feel like I can do nothing. Everything takes so much more effort and concentration. I try to nap when I can to recharge my body and get some work done later in the day, but it's not always possible.

    ReplyDelete
  9. I've had MS for 18 years... at the end of the day most times, I can barely drag my tired self up to bed! Mornings are amazing, though! I feel the best from about 5 am until about noon. Moderate after that until around 5 or 6 pm... after that I'm relaxing!

    ReplyDelete
  10. I don't know if the fatigue is MS related or just me getting older. But, I do know that I like my AM energy levels best.

    ReplyDelete
  11. I find that my energy level is at its highest in the mornings when I first wake up, however it doesn't seem to take much for me to exert that and become completely exhausted and fatigued. If I want to make plans for the evening, I literally have to plan my day to do nothing and take naps so that I have the energy to do so and even then it isn't the same energy that I have early in the mornings that just doesn't last very long. I admire those of you that keep pushing yourselves thru the fatigue, I have been reading different books and topics on line that help with overcoming some of the disadvantages of this disease however I have concentrated primarily on those focused on stress and pain at this time and maybe the others will fall into to place later. Good Luck to all of you!!

    ReplyDelete
  12. I am 35 and newly diagnosed, although I have been having symptoms for over a year now. Fatigue is such a killer of life for me! I get up and just getting myself ready for the day can be overwhelming. I have yet to convince anyone how awful I feel, even from the get go, to how trashed I feel at the end of the day. Fatigue has got to be the most evil and underestimated beasts of MS! Somebody please tell me it gets easier to deal with?!

    ReplyDelete
  13. Walking, sitting, keeping my balance while sitting, and just keeping my eyes open :/

    I'm a hell of a lot more iritable when fatigued too ((Much more likely to get frustrated, too..))

    I'm fairly easy to get along with in the morning, but as the day drags on...

    Funnily enough - It seems different ((Sleeping schedule is skewed))

    Morning, good. Noon, meh. Afteroon >.<. But if I stay awake long enough, get short bursts of energy that last good enough..

    Really depends on the day...

    ReplyDelete
    Replies
    1. "more irritable when fatigued" - yes! I call it "cranky baby syndrome"... like a kid whining "I'm a big girl, and I can stay up as long as I like!" - so I start to do stupid things... and end up staying up longer than I should, thinking I can still get it together if I keep trying. Finally a friend sent me this useful cartoon, that's worth keeping an eye on: http://www.leedscarroll.com/Misc/images/resisting-a-rest.jpg

      Delete
  14. Curious if any of you have tried antifatigue medication (ampyra or provigil) for your fatigue, or physical therapy to help with the physical aspects of the fatigue

    ReplyDelete
    Replies
    1. My Dr tried to get me provigil.... but my insurance wouldn't cover it and I couldn't afford it. :(

      Delete
    2. My doctor got me Provigil - it was a catastrophe! It did weird things to my mental state, but nothing for my fatigue. I kept trying higher doses, and it had no effect. The end was when I was napping from total exhaustion & woke suddenly to see, I thought, that I had slept all night & was late for my provigil. So I took it... and gradually realized that, far from sleeping an extra-long night, I had merely slept for 1/2 hr and it was time for bed. I thought I'd be kept awake all night - but I went to bed and had my best night's sleep ever.

      It also causes dry mouth - which was a major problem for me (I'm a singer)

      Delete
  15. It may have some validity but like days that I know that I have to do something at a very late hour I am more apt to make sure that I am at my best as a habit so that things go smoothly. I think this test would have worked better if the subjects did not know exactly when the walking tests would be given just a window I think the results may change a bit.

    ReplyDelete
  16. Just a note to make sure B-12 is checked and monitored. Should be about 1200 and mine was 192 when diagnosed! It does not cure fatigue issue but for me really did help with energy levels!

    ReplyDelete
  17. I think it can be harder to walk without it being measurable because we all have ways of compensating. The difficulty is compensating is tiring in and of itself.

    ReplyDelete
  18. I only wish I were more fatigued in the evening! I start out zonked every morning, slowly rev myself up to functionality, and find mind & body finally working mid-day. (And sleeping late doesn't help - it always takes a while after waking to get going.) Then I do what I can (including walking with my walker) until I push myself beyond my limits... at which point I lie down for as long as needed to get going again.

    I typically go to the gym at 8:30 PM, when I'm in my best shape and it's easiest to find parking. Then I go home, telecommute to work for a couple of hours, and try to get to sleep... but it's almost always hard to fall asleep. When I do succeed in falling asleep, I wake more easily in the AM... I wish there were a magic sleep pill I could *trust*!

    ReplyDelete
  19. I don't understand the purpose of this study, MS is different for everybody and sometimes different things happen at different times in ONE person with MS! So what are they comparing it to? Right now my diagnosis is Probable MS, but been having symptoms for a few years now. But, I do understand how frustrating fatigue is!!!! That's the worst! I wake up super tired, feel better in the middle of the day, am totally fatigued by the afternoon, get a short lived second wind, then tired again! Some days are better than others and somedays it doesn't take much. And yes, sometimes it is harder to get around when I'm fatigued, but not impossible. The other day a trip to the grocery store wiped me out!! So tell me, researchers, what truly is the point of this research when clearly you don't understand people's fatigue??

    ReplyDelete
  20. My daughter (R/R) 18 years old, formal ballet dancer suffers a lot from fatigue. Once a week in the evening after a tiring day she goes to ballet to excersise on mental power, then afterward she says it gives her more balance and energy. Are there more people who experience more energie when "forcing"?

    ReplyDelete
    Replies
    1. yes! P.T. for me, just after lunch once a week, "seems" to realign the short-circuits throughout my body, giving me a bit more energy and confidence that yes, I CAN do this. It's so much, no, SO MUCH easier to even walk after those sessions. Balance returns for a short while, yet the fatigue from concentrating so hard during that time doesn't seem the same type of tiring me out as concentrating on a math problem or emotional upsets do.

      Delete
  21. I am also one who wakes up feeling tired with more weakness in my legs. It gradually gets better and afternoons are best and then it goes downhill again in the evenings. I'm 59, not currently working, and I've had MS for 27 years. I'm very thankful that I'm still walking. I have never taken any of the medications for MS as I generally don't trust pharmaceuticals of any kind. Although, lately I'm not sure if I've made the right decision about this. So happy to see the video about the WalkAide.

    ReplyDelete