Hi - really struggling with fatigue at the moment. Find it really difficult to understand - I sometimes call it tiredness for no reason as it just doesn’t often make sense to me. But hey that’s MS for you. I try to prioritise and delegate to make things easier. Also on modafanil. What really doesn’t make sense is how can I be absolutely shattered from fatigue and go to bed but be unable to sleep??? It’s so frustrating as I think if I can sleep then I will wake up refreshed and full of beans. Also I just get so so fatigued that its painful - difficult to describe - maybe achy - anyone else??? Thanks for your replies in advance. Min xx
Hi Min, Apparently they do say that exercise helps to ward off fatigue. I know I’m to tired to do any though. But I always do some in the morning when I feel fresher. Hope this helps. Janet x
I find the less I do the more fatigued I feel and the stiffer I get. I’m on my 6th week of sick leave from work and I’m trying to get a routine going so I don’t get stuck in a rut of staying in bed half the morning and lazing about the rest of the day. Gotta be honest it’d be easier to laze about! I’m going out most days (fortunately I still can) even if it’s just to the shop in the car. I even went to town on my own last week, hired a wheelchair and browsed a couple of shops. Quite a minor achievement for some but a milestone for me, it’s been about a year since I faced town centre shopping on my own. I can manage the supermarket by using the trolley as a walking aid but that’s as far as I can walk these days. I manage my fatigue better now simply because I can nod off when I need to. I sleep better overnight as we’ll because I’m no longer waking up in a panic in case I’ve forgotten something desperately important at work. I don’t know your situation but the only thing I can offer is try to get out or get someone to take you out and try to get into some kind of routine. I sat in the garden the other day and the fresh air cheered me up no end. Yes i get very achy but I think it’s a downside of not moving about as we should and yes it’s probably your fatigue making it worse for you. Not very up on different medications but could any of the medication you take be causing sleep problems? Sorry I’ve rambled on a bit hope you start to feel brighter soon. Jan
Min I have had PPMS for over twenty years I was back in bed by lunch time today my limbs feeling alien and pain all over slept for eight hours watched bit of TV now back in bed. Some days I am back in bed by breakfast time. I must say I feel worse some days than others maybe it the temperature air pressure or the colours of my socks that cause my fatigue? If I knew why one day I can do stuff and the next I can’t I would change but after twenty years I still don’t know. I just use painkillers to help the pain but that makes me sleepy, you can’t win. Tramadol is great for pain causes me constipation you have to balance things and adapt as you go along.
Min try resting by sitting and reading or just doing nothing for a few hours. There are methods out there to encourage the onset of sleep speak to your MS nurse.
Hi - thanks everyone for your replies Min xx
I know some will think I am making excuses but I have to say that I tried exercise…did it properly by going to the local gym on gp advice and was tested and tried out etc as per the rules.
An hour later I was in a blue light wagon and was in hospital a few days.
Then given physio instead of gym, physio took me to A & E again.
Physio ( this is at local hospital ) have banned me. Said I should only do sitting exersizes or try hydro pool.
Tried hydro pool but hospital can only give 6 sessions…got to number 5 and had a stroke so lost last session.
I do as much as I can in the way of household chores…and last week felt pretty good so helped in garden, just bagging some hedging cuttings…spent next day in bed could hardly speak with pain and fatigue.
I know we need to keep going but for some of us exercise is not appropriate per say.
One day of pushing self = at least a week of pain, fatigue and misery for me.
We are all different so this is just my situ.
Ell i so agree with you,if i try to excercise i am like you,and end up in bed really ill, i do pilates in bed on a morning or later in the day,but thats all i can manage, these days.people think you dont try hard enough but that is so not the case,we know our bodies and we know our limits,i kept ‘going’ for as long as i possibly could do,and i hate the fact that i cant do more excercise,as i was really into keep fit, i swam.did aerobics,walked everywhere and loved it too.
Since having a total knee and hip replacement - l know how important it is to keep exercising. l have kept on - a little but often during the day and night. l am determined to get some mobility back. The physio at the hospital - did point out how bad my 'arches ’ fell to one side and recommended seeing a podiatrist for orthotics. Not prepared to wait 18 weeks for an appointment [yes -thats what they said] - l did get to see someone privately the next day. She moulded the orthotics to fit my feet - and corrected the height as the hip op had made that leg longer. Then l saw a Pilates instructor for some one to one hour sessions. She has been marvellous - and her advice and the orthotics have made such a difference to me.
Last week l bought, via amazon, Better You B12 Boost spray - four squirts in the morning. After only 3 days - l found that in that one day l had stripped and remade two kingsized beds. Done 4 machine loads of washing and hung it out - and then finished off and put away. Vacuumed the bedrooms/stairs/landing - taken the dogs out over the fields on my scooter - planted my hanging baskets-
sorted out my ‘drawers’ putting winter woollies away and getting summer tops out [my fault it is now cold and raining] - spent time on my eliptical trainer and healthrider machines. Also, spent time on my Fit Ball rocking my pelvis back and forth and side to side for my hips - [whilst watching telly]. l do take MSSentials combined vits/minerals and extra vitd3 - but the Boost Spray has certainly boosted me. Just hope it keeps on boosting. When l asked my GP about B12 injections - she said l did not need them as l was not on dmd’s. [Secondary Progressive] - And l had read that this spray is as close to the injections as poss. You can’t over do B12 - as it just gets flushed away. Spraying into the mouth means it is absorbed into the bloodstream so does not get mixed up in the stomach and not absorbed.
Well, l thought this was worth sharing with you all - as l hope it helps.
Now what shall l do to-day.
I have got to say well done you…it is always great to hear when someone finds something that really helps them and long may it continue
When you finish doing all your own housework and garden could you pop over and give me a hand please.
I am on B12 injections for PA but never feel any real benefit from them
Oh crikey Ell and Mrs J, I thought I was either odd or lazy, as I have a problem with exercise too. I was always on the go before I became unwell, and it took me ages to realise that it was physical activity that put me in bed, as it would sometimes take a day for the fluey feeling to kick in. I avoid my OT now as she looks at me as if I don’t want to help myself…
Mags I do the same…but that is unfair we should not have to avoid peeps who should be helping because they make us feel guilty.
Shame the medical profession do not listen and realize that some of us truly are made worse by activity/exersize.
Ell, Could be you need the injections more often. The dose l am taking daily is probably the same as one injection - so might be worth you trying it.
Have you read the book ‘Could it be B12 - a epidemic of misdiagnosis’ - all about MS and ~PA - google it.
Hi spacejacket, thanks for your message, yes read the book.
Doctors refuse injections more frequently so I did have ot go private and now buy my B12 injectable from Dr Myhill.
Because I don,t have the intrinsic factor to absorb from oral dose of b12 it has to be injected. I have tried the spray but it did not seem to do anything for me.
I have never been checked for B12 levels since dx of PA as gp says it would always be in normal range due to injections.
My own thoughts are that maybe my ferritin levels are low, they have been in the past and I was going to hospital for infusions by IV 3 times a week for 16 weeks to get them normal again.