Forum

Fatigue - does it ever go

Fatigue – does in ever go away? Christmas was great but in the end I’ve spent four days in bed in the last ten. I’m frustrated because I put time into resting up but then crashed over the weekend really badly. I’ve come to work today – got out of bed ok this morning but 11am and I’m knackered, trying to concentrate and keeping the eyes open is a real struggle. There is a part of me that just feels I’m being pathetic, but does fatigue ever go away or is it just an elephant in the room with MS? Tim

Well I thought that I had overcome my fatigue in the main with the help of my latest medication and I had got used to what made me tired and knew when to rest.- but apparently not!

We flew to Malaga on Christmas eve for a nine day holiday and it appears the sunshine did me good. I could walk further (albeit at a slow pace), didn’t have pins and needles, and no aching left leg and buttock, I had a good night’s sleep everynight and only fell asleep on the sofa on one occasion :slight_smile: There was no rushing around or pressure to do things though.

Now that we have returned I feel worse than before we went.

Yesterday I didn’t know what to do with myself, I was tired and wanted to sleep but kept thinking of how much I had to do, even though I couldn’t seem to think straight, and today I am tired and in work and really do not want to be bothered with anything - I just want to sleep - feeling a bit pathetic too- why can’t I get some motivation going?! I guess it’s going to be a few days until I get back into the routine I am used to.

I don’t think it ever goes away, but lulls you into a false sense of security and creeps up on you just to let you know it’s still there.

Lynne

PS enjoyed the break though :slight_smile:

Yep.its the elephant, im afraid!

I had to retire on ill health in 2000, as the fatigue got earlier and earlier in the day.

Now I can rest whenever I need to. But I always refuse evening invitations, as i know im not up to it. I miss out on some stuff, but cest la vie!

luv Pollx

Hi, yes I’m like Poll. Fatigue is the blight of my life… although I try now just to accept it. Haven’t worked for 6 years now. Spend a lot of time either resting in recliner or in bed. I’ve read it’s the number 1 reason why MSers give up work.

But you can help it a bit. Take it very easy. For instance, if possible, when you get home from work today go to bed and spend the evening in bed resting. Get an early night. Don’t plan anything extra this week and plan the weekend so you can do nothing but rest.

Trying to fight MS fatigue is completely counter-productive. Makes it much worse. When you have fatigue you really have to rest.

Hope it helps,

Pat x

Hi,

Don’t mean to be controversial here or provoking but need to ask.

I have been told by MS staff, nurses and consultants and OT and all that, exercise is actually a good thing to help with fatigue.

In fact, I was advised to start off very very small amounts, such as maybe a 20 minute workout taken over a period of time. Like, 2 minutes here and rest and then 3 minutes there and rest and so on. Would be advantageous over time and things could be built up from there to a longer period of time over time.

Just wondered what others thought about this?

As a little worried now that ‘fighting the fatigue’ will make things worse , like some have said on here.

Really fed up with the fatigue like everyone else as it is swallowing up my life at present!

Really getting me down now too…

tc

Anna x

Hi Anna, yes it’s really hard to get the balance right. I do try to do a bit of exercise every day, although on days when my fatigue is bad it’s impossible. When I talk about not fighing fatigue I really mean not trying to continue a ‘normal routine’ when you have fatigue. For instance, when I first had MS fatigue, long before I was diagnosed, I would, like most people, try and continue to work, to socialise, to do housework etc etc etc. After pushing myself like this though several ‘episodes’ of fatigue, I eventually got shingles over one side of my head and face. This certainly stopped me in my tracks. Suddenly I didn’t have any energy at all so was forced to take to my bed and ultimately gave up work. I think it was my body screaming ‘ok enough is enough’.

Now I live daily with fatigue but some days are better than others. Some days I can get out on my mobility scooter. On some of these days the scooter trip is all I can manage… but there are days when I can park the scooter and walk for a while, round a shop maybe (with walking stick). Other days I know there’s no way I can get out at all.

I think you just try and do what you can. On a good day you can try to increase your exercise a bit from the last good day you had… but in my experience on the next day you might not manage any exercise at all.

So Anna my advice would be to push yourself a bit when you feel able, and then see how you feel later and how you feel the next day. We are all different, different ages etc, MS affects us differently AND we have different types of MS (for instance both Poll and I have PPMS).

Listen to your body and get to know how far you can push yourself and how much you need to rest.

Pat x

Anna, l have always gone my own way - 30yrs experience of spms [when do l get the gold watch] l am a battler - sometimes a battle-axe. l never give in and try to do as much as l can. l never stay in bed - not that l get up at the crack of dawn. But l do push myself all day - and l know, in my experience, that the more l exercise the better l will feel. l call it the ‘Feel Good Factor’. Sometimes l get on to one of my exercise machines - and find the first couple of minutes so hard - but l push myself through it and often surprise myself how much more l can do. And, Oh, the feeling of achievement. lf l gave in and sat down l know l just get more tired and weary. l am in a lot of pain from arthritis in ankle/knee/hip on what should be my good leg. This is because it has had to support the MS leg all this time. So not a good leg to stand on. Walking is very difficult and it puts a lot of strain on my spine and leg. But the eliptical trainer holds me in a very upright position - well balanced - and away l stride, feeling very chuffed with myself because l look as if there is nothing wrong with me. l also have a healthrider machine and a powerplate - both great for working all the muscles - especially core muscles. l have been advised by the orthopaedic surgeon to have a hip replacement followed by knee replacement. l am a bit daunted by this as l know recovery time really depends on physio and exercise- which l can do - but just getting about after the op worries me as l cannot use crutches - and my left leg [ms] would not be able to hold me up. l managed up until last summer to keep on riding my horse - but my knee now makes it impossible ‘to get my leg over’. But l am not giving up the idea of riding again. l told the surgeon my aim was to join Zumba classes. He had no idea what they were - hope he has googled them. Or pole dancing - at least l could have something to hold onto. Although nobody will want to tuck banknotes into my Bridget Jones knicknaks!!

lf you don’t exercise now - then start doing just a few minutes - twice a day - the MSS fitness dvd is a good start. lt is mainly stretching and can be done on a chair which is good if like me you find it so difficult to get up off the floor.

l find l can’t sit down for many minutes as l just stiffen up and find it so painful to get going again. l have a ‘fit ball’ which l can sit on to watch tv - all the time you are on it your core-muscles are having to work to keep you balanced. Watch out if you have a dog - as mine has had to be replaced a couple of times after the dogs thought they would like to play with it.

l have not tried a Wii - some on here have. lt all a case of not getting to enthusiatic and overdoing it. But when you think you can do no more - just push a little bit to do a litlle more. Make it fun rather then a chore - little and often - exercise does release endorphins that make you feel better.

Frances.

What a great reply Frances - you are an inspiration!

Some of the people from the Hillingdon MSS branch started going to the gym a couple of times a week last year and nagged me into it. I am so pleased they did! When I started I couldn’t manage much, but on Tuesday I did 25 minutes on the exercise bike!!! Still can’t walk for very long, but I am feeling very much better and my fatigue is definitely improved. One of our group has lost more than a stone - despite being a near full-time wheelie, he can use the exercise bikes and the rowing machines. Others are finding simple things like opening jars and getting out of chairs and bed much easier.

You are so right in that we need to push past that initial “I can’t do any more” bit. If I didn’t do that, I’d be stopping at 5 minutes! Of course, on some days getting to 5 minutes would be an achievement, but I honestly think that going to the gym is helping to reduce the number of those days :slight_smile:

Fatigue has always been my worst and ever-present symptom. Modafinil helps me a lot, but exercise has definitely added to it.

Karen x

I agree keeping going does help, I have two small kids and never have a chance for a day in bed and rarely get a nap, no matter how tired I am, I’m up with my littlest at 6am most mornings (used to be earlier this is much more civilised!) and I’m on the go until they’re sleeping in the evening. In some ways I do get fed up of no rest, but I also believe that keeping active and on the go is really helping. I make sure I get a nice early night most nights.

There are lots of mums with young babies/toddlers on this site - and being a mum is the hardest job of all. And with MS - its like climbing a mountain everyday. WELL DONE TO YOU ALL.

My daughter is now 29 - she has grown up being very self-sufficient - and very caring to all who know her. l don’t think for one minute that she has ‘missed out’ having a disabled mum. My only regret is that she never knew what her mum was like pre -ms.

l must ask her if l can borrow her Wii Fit gadget - and see how l get on with it. She’s off on a ski-ing holiday next week - so perhaps she will let me use it whilst she is away.

Best wishes to all of you - and lets try and get a little fitter this year!

F.

I suffer with fatuige sometimes and with a 5 yr old and a 17 month old baby that has me up at 6am every day it can be really hard somedays.

I enjoyed xmas but found it very tiring, Am hoping i will be able to manage the fatuige bit better when the kids are both in school and the days am not in work i can rest.