Hello everyone, For the last few days, around 3:30pm I suddenly feel like my body is about to collapse in a heap on the floor, I also feel quite tearful for no apparent reason, fortunately my employer is very understanding and let’s me go home - although that’s easy said than done because I can barely walk let alone drive, so I tend to rest for a while until it passes just enough for me to drive home safely. I don’t know what to do because I still want to work, but its becoming a real struggle. I’m interesting to know, how does fatigue affect you and how do you manage it? Thanks Taz
Hi Taz, I find fatigue very difficult to cope with.I gave up my job last week because I had not worked for a yr. In the afternoon I am always nodding off on the sofa, when I have had a morning where I have pottered around, not rushed just took things slowly, I find I just want to close my eyes.
I try and do small tasks and rest in between.
Jan x
I struggle with Fatigue too. Around 2pm most days my body feels like its ready to shut down and I have to rest. Luckily I am self employed and only work until 1:30.
This is awful but I was so glad to read this. I have the same experiences in work, just completely overwhelmed in how tired I feel, also feel like my legs will collapse from underneath me and then the tears come. I thought I was over reacting! One thing I have learnt is that short naps are better for me to function than a long sleep. Steph
Fatigue is the absolute pits of this disease 44 and feel 64 cleaned my bathroom this morning & had to go lie down for an hour ended up falling asleep & woke up 2 hours later. Spend more asleep than I do awake or that’s how it feels this last 2 years 
Hi
Its there when i go to bed and when i get up, basicly all the time i feel like its taking my life away from me.
Like you its worse in the afternoon like im being dragged to the floor on one occasion at work when i over did it i ended up on the floor had sympathy for a short while then more work thrown at me.
my legs want to give way i carn’t think and i start sluring i worry incase customers think i am drunk
I take 400mg of madafanil but it just takes the edge off
best wishes Wendy
Fatigue has always been my worst symptom
When I was working, I would go to the medical room and have a sleep after lunch. These days, I rarely have to sleep during the day because of modafinil (works brilliantly for me, but not for everyone), but before this I found that it’s best to sleep only for a short time so that sleeping at night isn’t affected. For me, 30-45 minutes was ideal. Absolute max of 1 hour. Longer than this and I might not have a good night’s sleep, which of course just adds to the fatigue the next day - and so the cycle continues
The MSS and the MS Trust both do booklets on fatigue that might give you some tips about how to deal with it.
Don’t forget that you can ask for reasonable adjustments at work to help. Maybe a longer lunch break so you can rest? Or starting and finishing earlier? Or different hours? Your employer is legally obliged to do what is reasonable.
Karen x
I guess that I am really one of the lucky ones (so far) that I haven’t really been affected by the fatigue. I do suffer from neuromuscular fatigue which can make it difficult to walk even short distances and I have to use a wheelchair when I go out. I have just started palying wheelchair basketball and I have been able to wean myself off Pregabalin as I used to take this for neuropathic pain I had in my left arm as well as neuromuscular fatigue in the same arm. Since I started playing thses problems have completely disappeared Go figure!!
Andy
fatigue is such a bummer this is the reason i feel i have to stop working as come 1.30 im usless
Hi,
I get fatigue if I try to do too much. I had the family over for lunch yesterday. Wife and I cooked a roast and did a pudding. At the end of the meal I found myself nodding off at the table.
The problem is that you don’t know you have done to much until you have. I guess this isn’t fatigue in the way you describe it, just a running down of my batteries. I havealso noticed that the quality of my cooking has gone down hill if the meal calls for a lot of effort. I’m not so good at standing, makes me very tired.
I have neuromusclar disease, cannot walk more than 150 meters with a stick, legs very stiff and got footdrop. To get around I use a mobility scooter. Very interested to hear about Andy and wheelchair basket ball. Might have a go at swimming.
Patrick
Thank you for all your replies - some very useful tips & interesting personal stories
Thank you for all your replies - some very useful tips & interesting personal stories
Thank you for all your replies - some very useful tips & interesting personal stories
Thank you for all your replies - some very useful tips & interesting personal stories Steph - although you may think it sounds awful, that it was good to read my post, this forum has kept me sane, knowing that there are others who can relate to my symptoms or problems associated with my MS. Wendy - I too get slurred speech & can’t pronounce certain words because I can’t put my lips together to form the words - this is usually the first sign that I’m over tired. This is probably the most frustrating of all my symptoms because I have others trying to finish my sentences or second guess what I’m trying to say. Karen/Wendy- I’ve never heard of modafinil, is this something that the doctor can prescribe? Can you take this with Tysabri? Karen - thanks for the advice about making reasonable adjustments at work. For the first time since being diagnosed, I did something sensible, I listened to my body and the advice of others and reduced my working hours (have the agreement to work 4 hours a day on a flexible basis) feels quite liberating. Andy & Patrick - what’s neuromuscular disease / fatigue. Andy, what did your Neurologist make of the disappearing symptoms, since you started playing wheelchair basketball? Patrick - I can completely relate in what you say, my husband will tell me to slow down, but I feel fine so carry on and then the fatigue hits me. It used to be the same at the gym, thinking I could keep up with the other runners and cyclists, like I used but then could barely walk out of the gym. No one has ever mentioned neuromuscular fatigue before, do you know if physio would help? May be we should both join Andy’s basketball team… Taz x
Hello,
Neuromuscular fatigue - its when a limb will not do anyting but the rest of your body is fine. So for me its walking, my left leg becomes a liability, I cannot control it, walking gets to be a bit problematic
Fatigue is the whole body wants to rest and becomes useless.
I’m also intrigued by what Andy was saying - what did the consultant say, what do you make of it?
Take a peek at my website http://aid4disabled.com - there are some interesting articles.
Thanks,
Patrick
www.aid4disabled
this forum is an absolute Godsend to know that i’m not imagining this…
fatigue is by far my biggest struggle. from the minute i waken i can hardly lift myself out of bed and getting a shower kills me… then by about 930/10am im generally ok muddling along and when afternoon comes i could tell you what time it is just because of how i feel. it feels like my body just goes to sleep and doesnt wanna wake up around 3/3.30pm. then again later in the evening i could be mid conversation with friends and then my face turns grey and i have no ‘go’ in me even to talk. NOONE understands how it feels , which is so frustrating because people think i just need to go to bed earlier cos i ‘can’t be tired all the time’…
i’m getting married in 6 weeks and i honestly don’t know how on earth i’m going to last all day on the go… i’m hoping adrenaline and excitement override anything else going on in my body…
it is reassuring knowing im not the only one but then again i wouldn’t wish it on anyone at all xo
this forum is an absolute Godsend to know that i’m not imagining this…
fatigue is by far my biggest struggle. from the minute i waken i can hardly lift myself out of bed and getting a shower kills me… then by about 930/10am im generally ok muddling along and when afternoon comes i could tell you what time it is just because of how i feel. it feels like my body just goes to sleep and doesnt wanna wake up around 3/3.30pm. then again later in the evening i could be mid conversation with friends and then my face turns grey and i have no ‘go’ in me even to talk. NOONE understands how it feels , which is so frustrating because people think i just need to go to bed earlier cos i ‘can’t be tired all the time’…
i’m getting married in 6 weeks and i honestly don’t know how on earth i’m going to last all day on the go… i’m hoping adrenaline and excitement override anything else going on in my body…
it is reassuring knowing im not the only one but then again i wouldn’t wish it on anyone at all xo