My fatigue levels have been slowly getting worse over past few months and out of all my symptoms it’s the one I have most problems getting my head around. I mean why? I know I have MS and that fatigue is a listed symptom but not sure what causes it? Why does all the energy run out so quickly, specially when you haven’t done anything particularly energetic. I am finding it so frustrating. I used to be the one doing gardening, decorating and DIY etc but I just can’t anymore. I can understand that legs and arms etc don’t work like they should but fatigue is invisible. I used to go for eight hour marathon shopping expeditions and now I can only manage upto two hours…I was dedicated! Lol I would love to hear from anyone who can explain it…and what drives you most potty about fatigue! Mish x
Hi Mish having recently been diagnosed. Fatigue is an absolute pain. Like you said it just appears. Like someone just unplugs you and thats it all energy goes. my occupational therapists said two types of fatigue. Something to do with calcium…to be truthful I was too fatigued so cant remember exactly what she said. But totally understand. take care Ann x
Hi I dont have MS although for a while it was suspected. I have radiation damage to the spinal cord from treatment I had over 20 years ago. First symptoms were fatigue in 2000 then numbness in 2005 then weak legs in 2010, Spasticity in 2011. I reakon the body has the body has to try so hard to get nerve messages around - exhaustion. I dont think it has anything to do with the immune system in MS.
Hi there, i know how you feel. I wish I could explain it. Would make life a lot easier. It’s a total nightmare. I go to bed early, i sleep for 12 hours, i still wake up feeling like i haven’t slept! Just doing normal daily stuff leaves me exhausted. It doesn’t seem to matter what i do, i’m always exhausted. love Bex xxx
Hi, I think it’s to do with the immune system.
Our immune systems see the damage caused by MS as a foreign body and go into attack mode. Of course they can’t kill it off because it isn’t a foreign body… so our own immune systems are constantly attacking us. That’s a very simplistic explanation of why MS is called an autoimmune condition.
Think back to when you’ve had flu. One of the first symptoms is fatigue. All you want to do is go to bed. It’s because your immune system is working hard to kill off the flu virus.
So basically we feel a bit like having flu a lot of the time… or for some of us all of the time.
Hope that helps… it’s not a very scientific explanation but I hope it helps to understand what’s going on.
I’m in exactly same position I hate the fatigue and no matter what I do I can’t seem to shake it - I wish there was something I could take as I just feel like my batteries are done. I used to be quite active and doing things round the house but now anything seems to exhaust me which is so frustrating
Oh thank you all for your replies. I thought it could possibly be to do with energy used going round damaged nerves but I like Pats explanation, that makes a lot of sense too. I am sooo trying to understand why I feel like I do. I just feel like a fraud sometimes sitting round not doing much. I have just been through occ. health and had my hours changed to four mornings but by afternoon I feel like I have used up my tank of petrol and am running on fumes just to sit and do nothing! Grrr so frustrating! I like the unplugged description that is exactly how I feel too. I push and push myself until all I can do is lie down. My occ. therapist says I just need to manage my ms by making changes but I do hate giving in to fatigue! Ah folk song I hate that feeling to when you get a good nights sleep (or not) and get up feeling just as tired. Yes batteries I just wish we had the re chargable type eh? Lol Thanks all Mish
I have an open plan lounge, dining room and kitchen and had to flake out when I’d only vacuumed half of it the other weekend which was really frustrating. I had tears in my eyes because I felt so useless and I had really tried to do the whole room but needed half an hour collapsed on the sofa before I could complete the job. The next day I had a migraine and I’m sure it’s because I pushed myself to the point of exhaustion the day before.
Nobody else understands. My previous line manager used to say ‘We’re all tired’, and my personal favourite of hers ‘I often think how I’d love to have a little nap every afternoon but I simply don’t have the time’. I’m still not sure how I didn’t punch her for that one, grrrr!!!
Know the feeling Mish!!!
Im on 2 x modafinil pills per day and still permanently yawning and wanting to sleep, fatigue is a huge nightmare!!!
I think i get most frustrated with the fact i sleep for 10/12 hours a night and after doing the school run am soo sleepy!! Even the school run can be a struggle!!!
What would i be like without the modafinil??? Dread to think!!!
Wish i had some magical way of getting rid of fatigue for everyone!!!
Kate x x x
HUGS to you!!! I ‘get’ it, feeling really teary at the mo as i know i need to clean the bathroom but cant face it after hoovering
I thinkthe whole MS thing has just hit me too and really annoyed that i cant function like i did even 6 months ago!!! It’s a real downer isn’t it!!!
Kate x x
It certainly is, Kate. I can’t help but hark back to 5 years ago when I used to clean the house top to bottom in just a couple of hours and mow the grass. Then I’d be off to tend to my little patch of allotment and grow my own veg. Up until my son became a couch potato I also used to be outside in all weathers playing football with him - he even had his own goalpost. In warmer weather it was ‘extreme swingball’ as we nicknamed it. He once hit the damned thing so hard that half the pole took off complete with the ball and tether and went over the neighbours’ hedge. Luckily they were out and we crept round and retrieved it !!!
Now I have a gravel garden with a couple of shrubs and just trimming them back this year is what I think triggered the first relapse. I always said I wanted a quiet life but I didn’t mean that I wanted to spend all my non-working day in bed …
Thanks for the hugs, have one back - it’s to say thanks for understanding
This disease, it’s like it’s robbed us of our old selves, I’m like you girls, I used to never stop, always on the go, a very busy working mum. Now not anymore…I’ve been in the house today apart from school runs and as Tracey said, on days like today, I’d have cleaned the house from top to bottom …and the rest! The only house chores I’ve done today, have been washing a sink full of dishes and a wee hoover of the lounge rug with my hand held hoover. Then some PC time and sleep! We just have to get used to the new “us” I suppose and accept what we can do…a quiet life indeed! Jools X
I was always on the go too and I sometimes wonder if people are only allowed so much energy in a lifetime and if I used mine up too quickly?
Hugs all round.
Hugs all round I think! Tracy that was awful about your line manager. I know it is difficult to describe what it is like to someone who hasn’t experienced extreme fatigue but you don’t have to have flu to know it makes you feel ill, eh? Grrr I was dx in June 2012 and I still find it hard giving in to fatigue. I used to do all those things in a couple of hours too then pop out with a friend but not being able to is so frustrating. Kate does modafinil help with fatigue? I am on gabapentine (and copaxone) but didn’t know there were meds for fatigue. Ah, Jools it does feel like that at times doesn’t it. I treasure the moments now where I do have a good day and manage to do something fun like meeting a friend…I just drop the housework instead! : ) …well that’s my idea of managing fatigue at the moment! Mish x
Mish The modafinil does seem to help! Takes the edge off the fatigue, well it usually does. Not sure if Dr’s prescribe it or if its just the neurologist s. I did have to have an ecg before I was allowed it. Though dont think it actually helps much during a relapse, not me anyway. Im on gabapentin for my twitches and baclofen for the spasticity ot top of some others. Kate x x x
Hi there, Have a read at this “The Spoon Theory”, I’ve attached a link but if it doesn’t work just google it. I find this a very good analogy and have shared it with family and friends, to help them understand more. Jools X
oops…forgot the link, now can’t get this old laptop of mine working to attach the link…please just google it and if I get both mysel and this c**p lappy working, I’ll post it Jools X
Hello everyone, it’s like living on low batteries. Years ago when I drove old bangers , I had to nurse the battery to get the thing to turn over. If you know it’s going to gpo flat after a few turns you don’t keep trying it or it goes completely flat. I used to use a number of things to ensure the old beast fired up after a couple of turns. Now I’m doing the same for myself. I’ve had many years to get used to the couch potato consequence. I have many tools and devices to keep me useful. It’s a real bu**er having to accept it! All the best, Steve
Having done a 5000 word independent project in to fatigue for a course I did, it is reckoned, by the scientific bids that fatigue is caused when the brain tries to re-route neural pathways from damaged nerves and that this extra use if energy is what could be a possible cause of fatigue.
I had read about this theory and I thought it made sense but when we had a neurologist from the local hospital visit our local MSS branch and someone asked about fatigue I asked him what he thought of this theory. He dismissed it out of hand and said it was not understood what causes fatigue but there was ‘alot of stuff floating about in our spinal chord due to the MS’. I never rated his attitude when I was under the local hospital and I was quite relieved when I started DMDs and had to transfer to the nearest prescribing centre . I think he and I would have fallen out sooner or later!