I don’t do this kind of thing much but I just thought I’d start up a thread about tiredness. You see, I feel ok in the morning usually but then I’m absolutely exhausted in the afternoon (even if I had an early night) but find it almost impossible to get a rest because of work etc. Then my legs get a bit wobbly and I get that ol’ ‘brain fog’ feeling which effects my memory and even how I interpret what’s being said to me. Really, its a bit scary and I’m just wondering if anyone else understands this kind of thing and might have a tip or two that might help me. thanks, Ro
Yep i was told to take afnoon naps as for the brain fog and forgetting i blame this on my age as my wife is always are you listening to me or remember i did tell you
I hit a wall about 2pm, I can go past it but I end up popping extra pills (stemitol and paracetamol) to see me through the headaches and vertigo that is twice as bad when I am tired. I try to have a half hour lie down after lunch but I am always terrified I will sleep through the school run time, so I sleep lightly, even though I also set an alarm. Don’t know how you could do this with work though. No tips but I totally get where you are coming from. I am all over the place with the brain fog too.
Modafinil, if you can get it?? Works a treat don’t take to late in day, will disturb the night sleep you need.
Hi Ro, I get the same on some days. I’ve been off work with a bad relapse since March so I am lucky as it when it hits I can sleep for a couple of hours. I literally can’t keep my eyes open and it takes some doing to wake up fully. I don’t really know others ways to manage it sorry. Work are providing me with a laptop so I can work from home on days and they are allowing flexible hours I hope. It’s not every day. I do notice it happens when I’ve been doing ‘more’ and I haven’t really sussed managing activities/energy yet (only dx in dec) so I hope that is something that can also be learnt? Hope you find ways of managing it somehow L x
My consultant was emphatic that I must get between 7.5 and 8 hours sleep every night. It also has to be uninterrupted to give full benefits. I do feel much better on days when I have managed to get this amount.
Are you sleeping enough? That’s probably the first thing to look at.
Have a think about the jobs you have to do that are tiring, and see if there’s ways they can be made easier. As an example, when I cook I’ll chop the veg first then have a rest or do something else, as chopping & cooking in one go knackers me. And I always cook a few portions, then have the leftovers for the next day or two, or freeze them to have as an easy meal when I’m too tired to cook. And on the subject of food, it could be worth seeng if certain foods leave you more tired. Like anything made with white flour (like pasta or bread) always leave me lethargic, so I only have wholmeal stuff, and often gluten free too.
I went on a fatigue management course at my hospital and I found some of the things in it really helpful to deal with general fatigue. Most of it was common sense, such as pacing yourself, getting enough sleep at night, recognising when you’re doing too much so you stop before you exahust yourself and using relaxation techniques for 5-10 mins just to recharge but, to use them BEFORE you need them.
So (for example) sit quietly, close you eyes and in your mind, walk through a peaceful meadow noticing the flowers and butterfies, all the time breathing deeply in through the nose and out through the mouth. Use what ever scenario you like the most (mountains, beach, meadow, forest etc). I’m not too good with the whole imagine you’re in a field thing so, I find just tensing and relaxing from my toes to my head works for me (tense toes, count to 5 while breathing in, relax and breath out to the count of 5, tense the calves to the count of 5 etc. etc.) After 5 or 10 mins, take a few minutes just for gather your thoughts and breath normally then, carry on with your day.
If however, you suffer from ‘MS fatigue’ these methods won’t help and it’s time to speak to your neuro to discuss possible medication.
Yes I think we got that sue, lol
I too suffer from fatigue and whilst at work it can be a nightmare. Fortunatley I have a great Neuro and GP who are happy for me to use Modafinil even though its been withdrawn for MS use. There are still some Neuro’s out there that will prescribe it if its warrented so it may be worth speaking to yours.
It may be worth noting that your employer must make reasonable adjustments under the Equality Law (previously the DDA). whether thats just simply allowing you to start earlier in the day or take more breaks its a good idea to talk to your HR. I start at 7 and then using the boost of Modafinil I dont usually hit the wall until late afternoon when I am usually at home.
Beleive it or not exercise is another remedy that can help with fatigue. Doing easy exercises like swimming a few days a week have helped me with more energy.
Hope this helps
Yup my wife blames my age not my MS…
I work from 8.30 to 3pm and I find the last hour a bit difficult (almost impossible on the worst days). I go home and have an hour’s nap before I think about preparing the evening meal. I don’t think I could work until 5pm now so I’m limited in my choice of jobs now. My job at school doesn’t pay very well any more (thanks to a 3 year pay freeze and a rubbish 1% rise last year and an offer of 1% this year which has been rejected so far) but I can’t really look at any other jobs with the same hours and a week off every six weeks when my fatigue hits an all time low.
As Andy says, it is worth asking for a rest break to be worked into your day as a reasonable adjustment. It would be in your employer’s benefit because if you are fatigued and have the ‘cog fog’ then they’re not really getting the best work out of you. A half hour power nap would be good for you and work. You have nothing to lose by asking. There is a good booklet on this website about Work and MS which has some useful tips about how to go about asking for reasonable adjustments and how to do it in such a way that they don’t feel that you are getting something for nothing.
Thanks so very much to everybody who took the time to respond to my query about fatigue/tiredness. Some great tips and info that I will put into practice for sure i.e. nap, exercise, check out how diet can effect me and checking out the ‘Work and MS’ booklet too. I hope we all find ways that help us to adjust our timetables and get the energy we need to ‘keep on keeping on’! Take care everyone and thanks again, I really appreciate your posts. x ro
ha ha innel im glad im not the only 1
Most days I seem to wake up tired and my day goes down hill from there!
For the days where I have things to do I take Modafinil tabs. One in the morning and one about Lunch time.
This enables me to stay awake all day at least!
No real energy boost though!
Neurological tiredness is someting most of us have to deal with so in the end it’s up to the individual I guess!
I know exactly what you mean. Around mid afternoon - 2-3pm - my body & brain want to shut down and just stop working. I work full time so this is really affecting my work as I am making so many mistakes and getting really confused with things. Then the journey home is an absolute nightmare! People suggest having a nap but that is incredibly impractial (for me at least). I cannot sleep at my desk, I cannot sleep on the office sofa and there is no where else I can go and have a nap! So if you can’t get a nap at work my tips and tricks as follows:
I have found that drinking water (more than you usually would) helps slightly and I have an extra tea mid afternoon to get me through the rest of the day. Whilst caffeine probably isn’t the best of solutions, it is only an extra cup of day. Don’t overload on caffeine though as that will be very bad! I only drink 1 cup in the morning anyway so with my extra one in the afternoon, I am still only drinking 2. If you drink lots of caffeine that could be affecting you - too much caffeine and your body will just become dependant on it and will really struggle. Cutting down on caffeine is quite hard and I found reducing cups 1 by 1 and spacing them further apart helped me when I was cutting down.
Try to get to bed as early as possible and have as much sleep as possible - if like me you have RLS (Restless Leg Syndome)/spasms or other difficulties then it may take hours to go to sleep which makes everything worse and brings a mightmarish broken nights sleep, again not helping! Getting into a bedtime routine is really helpful - I tend to have dinner, watch a TV show, have a bath, another TV show and then go to bed. But I time it all so I do this at the same time each night. Whilst a bedtime routine may sound really boring, it helped my body get used to doing certain things at certain times, meaning it was easier to get to sleep. If I found I couldn’t get to sleep still, I would go and have a glass of water or warm milk, brush my teeth and get back in to bed - it’s like ‘re-setting’ your body so it knows that it is bedtime.
Ask your work if you can work from home or have amended hours so you work during the mornings and perhaps leave a couple of hours early and work from home? It might be worth just amended hours so you get in an hour early and leave an hour early? They should reasonable adjustments under the law so always worth asking.
Might not sound like what you want but if you work in an office, try going out of the office and just walking around for 10 minutes or so. Just to get you away from work and help recharge your brain so its not focused on work. You should take a break every now and then anyway but perhaps make the breaks 10 minutes rather than 5 minutes.
Exercise again might not sound like something you want to do but gentle stretches wake my body up for a good enough period of time that I only need to do them every hour. You could stretch whilst walking around or do mini stretches if you are at a desk. Swimming gently is also a great way of helping fatigue and tiredness. Even just 15 minutes to half hour of a few laps just gets everything moving and can help.
That’s all I can think of for now but if I do think of anything else I will let you know!
I have found myself, going to the “sick room” and taking a 15min nap in the afternoon to counteract tiredness and this really helps, I also pop a fizzy orange vitamin energy boost tablet, some days to give me a boost as well. It is a part of this MS journey that I have to cope with.
I am recovering from a nasty relapse where I lost the use of my right leg. Steroids have quickly put me back on track and I have now been off the steroids for 11 days and am able to walk fairly well. My issue is that whilst I can move around, doing anything tires me terribly. I put washing on the line today and had to sit down halfway through because all my energy fled. I just feel a bit pathetic for not being able to do much physically. Mentally my head is back to normal so I feel like me again but is there anything I can do about getting so tired? Am I expecting too much too soon?
Sounds just like me. I was diagnosed with breast cancer in July and on the 10th August I had my first ever relapse. I have had ms for 7 years. The ms nurse said originally psuedo lapse due to stress of cancer but this was over the phone and I have never met her. Following few days things got bad, lost power right leg, could not even wiggle toes, lost use of right hand and then on the Sunday bladder etc. On the Monday gp seen me and was aghast at how bad I was and called neuro when I was given 5 day steroids. Slowly but surely by the Friday things started to improve and have gradually resolved. Tiredness is massive though.I need to rest as radiotherapy starts in a fortnight and gp says need strength for that.All I can say is that the gp said steroids stay in system for 3 months so hopefully things will get back to some norm. Take good care. xxxx
Poor you! Double whammy to cope with! I guess I am expecting too much from my body. The steroids affect you for 3 months after taking them so I probably just need to be patient and rest more. It’s so frustrating though when your head says you are so much better but your body disagrees! Good luck with your treatment