I’m just wondering as I pass through another frustration phase, how many other MSers deal with fatigue in the same way I do.
Since the start and even a bit before the MS was diagnosed I have had an issue with fatigue, other symptoms of my MS have come and gone but the fatigue never leaves.
I have to sleep every afternoon for usually between 2-3 hours and then I still manage to sleep all night when I go to bed at night. I have tried to break the cycle but I then get what I feel is like sleep depravation ie irritable, confused, can’t think or speak properly and physically too tired to move.
My frustrations come when I feel like I’m missing out because of sleeping. My family and my other MS friends don’t understand and I feel my husband doesn’t either?? does anyone have the same problem as me?
I don’t have children but even if I had I doubt I could cope with them anyway because i’m easily tired… Thank Salamanda
Yes I to have to have a sleep every afternoon, if I don’t the myoclonic jerks become so violent I have no other choice than to go to sleep. Fatigue plays such a large part in MS and we all deal with it in different ways. You could try doing a bit, have a rest, doing a bit more, have a rest and so on. I do symphathise (spelt wrong, I think) with you. Maybe someone else on here can give you more tips.
I am lucky as my husband knows that I need to rest in fact he says isn’t it about time you had a rest as I start getting nasty when I don’t mean to.
Have you tried explaining it to him or shown him the brochues about MS, you never know it may help if he understands it better. I wish you luck and send you (((((((HUGS))))))
I sooooooooooo know what you mean! I used to resist napping to the point where I would have major arguments with my husband about it when he was telling me that I really had to go to bed - I put up with enough **** from my MS, why the hell should I let it take away some of my lifetime / my days?! (The number of times that I’ve fallen asleep on the couch, lol, even literally mid conversation - I once woke up actually finishing a sentence to be really confused that the room was empty!!!)
Looking back, I can’t remember when it changed. Perhaps when I realised that my awake time was better when I gave in and slept for a wee while in the afternoon? Losing an hour so that the rest of the day was better seemed like a fair trade. It’s also no fun at all being exhausted.
I’m very lucky in that modafinil has been a wonder drug for me and I don’t have to nap anywhere near as much since starting on it. However, if I need a nap, I don’t fight it any more. I do try to keep it to a maximum of an hour though as I’ve found that more than that can make me worse.
I guess, like most things that MS throws at us, we adjust and accept it eventually?
I was starting to feel alone on this…My husband is normally quite similar as in telling me to have my nap but his family are always on their hate/jealous drive about me as he was their favourite I had pinched from the nest. I would have expected better from my MS friends though and my own family. My dad just said to me last night a flippant comment on ‘well if you snooze you loose, you are just going to have to miss out’ However, upsetting it is I am aware that my dads brain lost contact with his mouth about the same time as he retired…
Do you ever feel like your missing out because of sleep? like your incapacitated because of it?
I have difficulty walking, problems with my bladder, tinnitus in both ears, double vision and trigeminal neuralgia but I would say that fatigue is my most debilitating symptom and the one that rules my life the most. I need to sleep in the afternoon or I am no better than a babbling idiot. It starts at about noon and I can feel my head swimming – there’s nothing for it but sleep. If I fight through it – because lets face it there are times when I simply have to – I collapse later in the day like a burst balloon. Don’t expect any sense out of me it’s so embarrassing.
Thank goodness the nights are lighter now as I feel that there is at least some day left when I wake up. In the winter it’s as though my day is collapsed into a few hours in the morning.
I’ve just completed a fatigue management course run by OT and the MS nurse and although there was lots of value in it I still have the afternoon nap syndrome. One of the suggestions was to take more exercise – but I’m such a couch potato I can’t comment on that!!! (To be honest “take more exercise” fills me with dread)
No I don’t feel as though I’m missing out on having to have a sleep but as Karen has stated I try to keep it to a hour or I feel the worse for it. After all once you have woken up you feel more like yourself again aches and pains and all. At least you are with it again. If someone doesn’t understand the need we have to sleep well that’s their problem, not ours. Show your dad or anyone else the brochue on fatigue and they may get an inkling of what it is to be so tired you can’t stand, or even walk or talk or think properly having a conversation.
After all what’s a hour during the day, nothing to many but a life saver for us.
I’m so grateful that you responded to my issue. Funnily enough I really feel it at about 3-4pm and I had to give up full time engineering/technician role because it was too physically draining due to MS Fatigue and ended up in part time admin before my role was given full time to someone else.
I have tried the Fatigue course and always prioritise personal work loads by fatigue. I do believe exercise, diet and sleep help but they can only take me so far… I even tried Amantadine in the past but it did nothing. Mornings are the best for me too and I hate it when people think it is a luxury…your right there. I’m sooo lucky not to feel the effect of my MS any other way but I feel incapacitated enough by the Fatigue.
Fatigue is one of the most frustrating parts of MS. I too have to sleep in the afternoons and feel like I’m missing out off life. Unfortunately, there isn’t a lot you can do about it. However, I try to make up for my lost time later during the day. That way I don’t feel like I’m missing out on too much. The main thing is getting your friends and family to understand, this is hard but there are some useful publications onf the ms website which I gave to my friends and family. They understand better now and we organize activities, get togethers around my naps. Hope this helps
Nobody understands fatigue compared to tiredness unless experienced by themselves. that’s where we start and then, I for one, get guilt feelings and, depending on your close-ones, these feelings can get really bad!
I don’t have the choice other than to work through it most days, I could happily sleep at 2pm every day - yet I can not. but when I get a day off, i literally can’t get up, or if i do, my family suffer. I don’t mean to, but I’m awful to be with. It takes days, weeks, to get through this if I’ve pushed it too far. I have learned from this and try to do as much as i can to help myself and family. I also accept that it is my own choice to get knackered in this way (!!! ho ho!!!), but also that if I let the tiredness overtake, daily, that it would be worse than a few days rest here and there. It all depends on personal circumstances and making routines for yourself that you can deal with. I think that’s the key - personal to you and how to manage it. Don’t let fatigue (and others’ worries about it, including on this fab forum) take you over!
Trouble with MS fatigue is that civilians think they understand what it is, when they don’t. The lack of understanding makes the debilitating effects even more of a struggle to deal with. Like Karen, I have found modafilil to be an enormous help.
I mentioned this to my MS nurse yesterday, how fatigue has always been a massive problem, but he reckoned being tired all the time is not a symptom of MS (we are just getting to know each other and I don’t find him that approachable). If I work then towards the end of the week it gets harder and harder to do. As the day goes on things get more difficult, I lose concentration, I struggle with words, I always sit and rest when my baby is napping. I’m terrible for not sleeping in the day because I am worried I might miss something with the children, or forget to pick them up from school, and if I do drop off someone usually wakes me up! I’m also really bad for if I feel good then I tend to bite off more than I can chew, so I’ll start something like a massive tidy up and then find I’ve run out fo steam before the job is finished (usually at that stage where everything looks worse than when I started) and then nearly kill myself trying to finish it.
I am sooooo relieved that these posts are here. I suffer from MS fatigue really badly (and of course all my other symptoms!) and being a single parent with two children (aged 12 and 13) coping with this is extremely difficult. Because I am by myself I don’t have anyone to ‘take over’ but I am learning not to beat myself up and to rest and not feel guilty. I too am finding that my two girls don’t really understand and my parents also. It has really perked me up to know that other MS suffers are going through exactly the same things.
Much the same here, only the levels of fatigue vary depending on how this wretched illness decides how to hit me day to day.
Problem is, I feel so so guilty having a nap, and try and do so when there’s no one else in.
I do wonder if others think I’m just bone idle.
If I here the front door opening I usually wake up with a start and dive out of my bed to pretend I’ve just been to the loo, and casually walk downstairs.
Hate it, absolutely hate it, but I suppose I’m lucky really, as it’s the only major symptom I’ve suffered from in 15 years. Still working, still hill walking and still going to the gym.
This disease varies so much - l never sleep during the day - and only sleep about 5hrs at night. l did use to have to sit down in the afternoons for a rest - but always worried about falling asleep because of picking my daughter up from school.
That was some years ago now. l find ldn helps me so much with weakness/fatigue and depression - l am quite a different person since starting it 3yrs ago. lts now 4pm - and l have not sat down all day. l have been out for a long ride on my horse - spent ages grooming out all the dead winter coat from him before going out and after coming back and unsaddling him-out with my dogs [on my scooter] - swept the decking and cleaned out the dogs paddling pool - things l would have found rather tiring to do. l know since being a ldn’er - l have not had the dreadful trigeminal neuralgia - something that plagued me for years. l also take a high dose vitamin d3 - which also helps with pain/depression. l do exercise - as l can not walk anywhere without holding on the furniture or a frame. So l use an eliptical trainer [watch tv - whilst striding away takes your mind off it] and a power-plate machine. This keeps muscles/ blood circulation in good order - and invigorates me. People cannot see your MS - so they do not understand it - you would get more understanding/sympathy if you had a large plaster cast on both legs. l’m a bit vain - and l have always got my lippy and eyeliner on - and my hair looking cared for. So you do get told ‘you look well’. l always smile and say thank you. This is one advantage we girls have on the men - well most men - we can ‘tart’ ourselves up and feel better for it.
My MS nurse runs an information day for newly diagnosed MSers and one of the speakers at the one I went to gave the following formal definition (useful for DLA applications etc I think):
" … A consensus definition of MS-related fatigue developed by MS researchers and clinicians is “a subjective lack of physical and/or mental energy that is perceived by the individual or caregiver to interfere with usual and desired activities.” …"
The way I describe it to people who ask me what I mean by fatigue is “Imagine having the worst hangover you have ever had and then having to run the marathon … in lead boots”
I must admit that I didn’t know how “fatigue” differed from “being a bit tired” until I experienced it myself. God, I know now though
Guess I’m lucky, don’t need an afternoon kip but I do get weary. If I’m on my feet for too long then I have sit dowm so that I can get the weight off of them. When I get weary I start to get double vision and although I can see things its impossible to describe what I’m seeing - I find it very strange. Also co-ordination and balance goes to pot when I get weary.
Paracetamol or Ibruprofen does make me feel better. LDN, started it in the New Year, certainly got better control over my bladder and now you mention it seem to have more stamina.
Its not easy to be more precise cos I stopped work in the New Year, no longer had the energy/strength/ to continue as a freelance computer consultant. Set up website and doing everything from home
I didnt think that I experienced fatigue too badly but think theres a large amount of denial in there…
I went to bed on Thu evening and woke up at 4pm on Fri! (I was awake for the loo at somepoint but straight back to sleep) I got washed/dressed and went to see Rhod Gilbert on Fri eveing. Woke at 10.30am yest (Sat and felt okish) Went to bed last night and didnt waken til 12.30pm today. I often sleep 1-3pm before the kids come home from school. I could sleep at anytime-despite having a ‘good nights sleep’.
I do have kids but fortunately I manage to sleep around what I need to do for/with them. If I cant (like Fri!) then they are great and just let me sleep-it makes them feel grown up (at 9 and 11) to get their own food and I have come to realise that its good that they can cope without me for short spells and has benefits for them and myself…
I have this too and though I don’t manage naps often cause I’ve got two small children (one of whom gets up at 5.30am argh, which doesn’t help!), one day at the weekend I usually have a nap and it makes me feel SO much better, I can stay up a bit later in the evening and feel like a “normal” person.