Hi everyone. I have not been on here for quite a while now so a bit of background info about myself. I was diagnosed with the onset of MS back in June 2012, up till now i have only had the initial attack so therefore i am not on any medication. i went back to work full time last january 2013 but i get so tired even at the weekends when i am relaxing. i have got a supportive husband and kids but i am just so fed up feeling energy less all the time. before my attack i was into keeping fit going running with my husband 3 times a week but all that has stopped now. do any of you suffer from excessive tiredness? is this something i have to live with now or is there something i can do to help my energy levels? any advice would be greatly appreciated :). Sharon.xxx
Hi Sharon. I’m feeling pretty much the same. Fed up of spending my evenings and weekends recovering from work just so I can go back and do it all over again! My neuro is reluctant to consider medication for fatigue at the minute shike I’m getting settled with copaxone so I’m trying other things. I’ve joined a ladies gym and after a rocky start when I was obviously pushing it too hard I’ve found my level. I go straight after work and do think it gives me a bit more energy in the evening after I’ve been. I’m also doing an 8 week mindfulness course. No benefits obvious yet but the psych reckons it’s proven to help with fatigue. I’m also trying to cut out carbs at lunchtime and this does seem to help me keep going longer in the afternoons. I’ll try to remember to keep you posted on whether any of this helps!!
Hi Sharon I’m tired all the time and my gp has put me on amatadine , can’t tell you how much better I feel been on it a month now and feel like the old me. That’s the only medication I’m on at present. Amanda
Hi Sharon
Unfortunately, fatigue is a recognised symptom of MS. The MS Society produces a very good book about managing ones fatigue. Personally, I found most of it to be ‘common sense’, but nevertheless, worth a read!
There’s a very good article on the MS website about fatigue and exercise. Unfortunately, I can’t hyperlink it, but copy this link to your browser. http://www.mssociety.org.uk/ms-news/2014/01/exercise-can-help-beat-ms-fatigue-ms-society-reveals.
Personally, I find exercise very beneficial, as far as my fatigue levels are concerned. It’s tough sometimes; when I’d rather curl up in a ball and sleep, I have to force myself out of the door to go for a run. That said, I always feel better for it!
Thankfully, I can still run. After a major relapse in June 2013. I’m now back up to a 8.30 min/mile and completed my first half marathon since, earlier this month. So, it can be done.
My whole life revolves around my endurance events and running, so I’m not prepared to give it up easily.
Good luck and best wishes
Tracyann xx
I use to have chronic fatigue was popping Modafinil 3 times a day when working then my body had enough of it and it stopped working so I was taking Amantadine once a day as one was enough.
But also I noticed with my fatigue I would meet the gang at the gym feel like crap and after 20 mins of being there the fatigue bubble popped and I had some energy and was awake again this would happen 7 times out of 10 times roughly.
Anyway not sure why but my fatigue has almost vanished I get this thick mode and serious drain qbout 30 mins a day now. Not sure why its gone but another guy I think posted here or on Facebook that his just suddenly vanished.
MS is very weired condition though alot of the symptoms are common they not always permanent with everyone, maybe thats down to the DMD their on, the foods people eat or gym and forcing yourself to stay active, will power and denial who knows.
Hi everyone, thanks so much for all of your replies!. i will speak to my GP about Amantadine, also i am going to get back into my fitness by going running again. I used to run 6 miles before my attack but will have to start all over again, but if it gives me more energy it will be worth it. Thanks again for all your advice . Sharon xx .
Hi everyone, thanks so much for all of your replies. I will speak to my GP about Amantadine, also i am going to get back into my fitness by starting up running again. I used to run 6 miles before my attack and having put a few pounds i will be glad to lose it and get back to my original weight but more importantly if it gives me more energy fantastic. Thanks again, Sharon. xx. PS sorry if this message posts twice, computer is playing up!.
Hi again, Sharon.
Pleased to hear that you’re going to get back into your running. I’m working harder than ever now to keep ‘the wolves from the door’. Just remember to take things steady and build up your mileage slowly; don’t push yourself.
If your distance is six miles, take it back down to a mile or two (depending of course on your baseline fitness level).
My relapse in June left me with Secondary Dystonia affecting my left side (I still experience it now!). I started training again mid September. Whilst my cv fitness was still quite good, I physically could not run very far (or rather ‘jog’ at that stage!). I started back at the gym using the rowing machine and static bike and built up the distance over a few weeks. Then, I went out onto the moors, close to where I live and took it really steady. At least, if I was going to trip or fall over, it wouldn’t be so painful.
When my legs became stronger and I felt more stable, I went back out onto the roads.
If ever there was a good reason to keep yourself fit and flexible- this is it! I’m sure Hobs will agree with me.
Best wishes
Tracyann xx
Hi I was dx in June 2012 too and suffer from fatigue but recently I found I was feeling more and more tired. So I went to see my GP who did some blood tests. They came back showing I was very low on iron and vitamin D. So my GP prescribed both and my energy levels have improved since I have been taking them. When I felt tired in the past I had bloods tested and that came back with under active thyroid and once I started meds for that energy levels went back up. So best to check it is not something other than ms causing your tiredness. Have you had your bloods tested lately? Shame they doesn’t prescribe chocolate supplements really! Lol Hope energy levels return. Mish x
Hi again, thanks for your replies. Tracyann I will be taking it slowly at first with my running definitely! Hopefully be able to build myself up to run at least 4 miles eventually but happy just to jog around where I live at the moment… I will go to the doctors this week and see what they say. They may send me for blood tests which I will have to see if I am lacking in anything. I take vitamin b12 and d and omega 3 at the moment. I will post on here what the doctor says . Love sharon. X
Hi Sharon I know how you feel. I also had no medication… Went to my neuro appointment the other day, walked in the room and he said " gosh, you look tired" and promptly offered me Amantadine to see if that would help. I have only taken it today, but I will let you know how I get on. Perhaps a word with your GP or neuro might be in order xx
if i cook a roast dinner or make a curry, i’m usually starving but when its ready all i want to do is go to sleep.
Funny, Carole, that’s exactly what I said to my friend the other day! He asked if I cooked much, I said: “Well, not really - sometimes I do make the effort, but then feel too tired to eat it.”
I just cooked a big old brunch this morning, though. Very rare, as I don’t often cook OR eat breakfast. Big, grilled, high cholesterol binge.
Don’t feel too bad after it, considering. Even done the washing up too. Perhaps Spring is finally coming, and I’m shaking off some of this lethargy.
Tina
x
Hi everyone. Just an update, I went to my GP yesterday and he advised me to speak to my MS nurse first before he would prescribe me anything. So today I spoke to my nurse and she has referred me to my consultant, so I am now waiting for the appointment to come through. She did mention modafinil but will see what consultant says. I also have read on here that modafinil is to help excessive sleepiness, it’s weird my body feels tired not my eyes where I feel the need to sleep so I am wondering if I need another drug??. Will keep you all posted though. Hugs . Xx
Hi all. Another update, my appointment has come through for me to see my consultant, it’s on June 4th , 2 months away :-/. Blood tests came back all normal so at least I know nothing is going on there :-). Just wait for June and see what my consultant says, fingers crossed I can sort something out. Xxx
Hi all. Another update, my appointment has come through for me to see my consultant, it’s on June 4th , 2 months away :-/. Blood tests came back all normal so at least I know nothing is going on there :-). Just wait for June and see what my consultant says, fingers crossed I can sort something out. Xxx
do short periods of exercise followed by periods of resting in a horizontal position.
I find it’s not what I eat but the amount that I eat that’s important - a heavy meal leaves me completely knacked.
Modafinil can also help with fatigued muscles and alertness its not just a wake up pill if it does work for you.
If not as I think I said before you can always try Amantadine also.
Hi, I have been on Amantadine for 6 days now, they are working for me, i havent needed to sleep during the day since taking them. I am walking a little further and managing the housework more than I have done in the last 4months.
Pauline xx