I am confused about what actually causes ms fatigue. Is it the actual lesions on the spine and brain which makes the fatigue appear? I haven’t as yet experienced the shattering fatigue as others on here have described although I do find myself having to take more short "rest breaks " than I used to after some physical activities like housework, walking etc. Does it mean that if I get more lesions then I will get fatigue or will old lesions produce scarring which will cause fatigue? Does fatigue only occur when someone is having a relapse or is it just part of the progression of ms ? At the moment I guess I only have sensory symptoms, tremors, spasms and dizziness/nausea but fatigue hasn’t occured yet. Has anyone on here experienced fatigue at the early stages of ms? Does anyone think that DMD usage has slowed down fatigue or stopped it altogether? Sorry about all the questions. Thanks
Simple answer: nobody knows! Although it’s one of the most commonly-reported symptoms, and many people report it as their worst, the exact mechanism is not really understood.
I am fatigued all the time, and not only during a relapse. Following relapses, most other symptoms got better, but fatigue never did. In fact, I would say it has got worse over time, even in the absence of relapses.
I’m not on DMDs, but as they’re not designed to address symptoms, I can’t really see them making a big difference to fatigue (a possible exception might be Tysabri, as some people do seem to report actually feeling better on that one, although I still don’t believe it can actually be promoted as having that effect, due to lack of scientific evidence…)
As DMDs’ ONLY job is to stop or reduce relapses, and I haven’t had any for ages anyway (touch wood), I don’t realistically believe they’d be an effective treatment for fatigue - in my case, at least. I suppose if someone’s fatigue was compounded by frequent relapses, then they might notice a difference, but how would it work for anyone who isn’t relapsing? I can’t see that it would, at all, and nobody should embark on DMDs with the sole aim of relieving symptoms. It’s a recipe for disappointment.
DMD’s don’t relieve symptoms that is true.
But their purpose is to reduce disability progression and some have been shown to do this in cinical trials (eg. tysabri, gilenya, lemtrada, bg12).
It used to be thought that MS was silent when you weren’t relapsing but this is not true, it is an ongoing process that is often not symptomatic.
In this video - The Future of Multiple Sclerosis Treatment - YouTube - they show that people with MS have to use more of their brain to do things (eg move their hands) after they have had a relapse that effects that function.
I think that might be one reason for the fatigue - we just have to work much harder to do the things that other people can do
I also have fatigue whether or not I’m having a relapse. Some days it’s worse than others but it’s always there to a certain extent and the key is to rest especially after any exertion.
I did have fatigue at the very start of MS, in fact my fatigue was there before any other recognisable symptoms. I was just under 44 and I kept nodding off in the afternoons if I sat down with a cup of tea. I would suddenly wake up and realise I had lost an hour of my day. My son (then 15) thought it was funny but I remember thinking I was much too young for afternoon naps so I thought it would be clever to keep moving and not sit down. Result - within a few months I had what I now know to be my first relapse and had my first hospital admission. Not so clever after all!!
Tracey I get exactly where your coming from I’ve had MS 18+ years and I’ve had some horrendous relapses in that time but nothing has ever beaten me as much as fatigue which I’ve only been suffering for the last 6 months and boy oh boy is it horrible, only got to make the bed these days before I want to get back into it Sue x
i’ve had fatigue since 6 months before my diagnosis.
i’d been really pushing myself, working long hours and then decorating the whole house by myself (madness, i know)
i’d like to try modafinal but cant even spell it so not much hope for me being able to remember it or pronounce it when i see the doctor
@sue - you make the bed? i dont seem able to do that any more
Fatigue is definitely one that has really made me rethink my daily routine. I have early mornings due to having a 2, 3 and 9 year old nd a school run. I have to set a time limit as to what jobs need doing by what time, then have to put my feet up whilst the youngest has a nap. This enables me to do the school pick up, evening meal and kiddie bedtime. I don’t usually last much longer after they have gone to bed. Incidentally, I read something on here yesterday about heat making someone’s fatigue worse. It’s difficult getting a balance in the house when it’s so cold outside, but I have noticed that by having the heating going off earlier and getting windows open I have a little more life than I normally would at this time. This in mind, I am going to tidy up downstairs whilst I am able, and hubby can cook tonight! Sam x
When I make my bed, I usually collapse into it for a little nap! I have a sleep every afternoon after work (I finish work at 3.00pm, in bed by 3.30 and up by 5.00 to cook dinner). During a relapse, I sleep a lot more than normal especially if I have had to walk anywhere
Sounds like a good idea! It’s amazing how much making a bed can tire you at times! xx