This week things have changed in that I am so tired, I’ve never had this before. Is fatigue something you just get or does it signal you’ve had a relapse before used to get tired between 4 and 7 pm then perked up again. Now I get to 10 am and just want to sleep. Are you best to just push through it. I find it hard explaining to my parents etc what in feeling? I know it’s hard for them looking after an 11 month old granddaughter all the time. X
I know that too well my 5 week old had us up at 6.45 nap when u can x
i am the same take kids to school come home and just feel shattered since i have a 30min nap than feel great again but do remember put alarm on or you could b sleeping a lot longer…x
My sons only 4 and at nursery a few days. I’m hoping it’s something hanging around me that makes me feel so tired.
Hello Em.
I was diagnosed in 2012 and have been feeling tired off and on since.
Much worse when the pins and needles keeps me awake through the night, maybe allowing 3 or 4 hours disturbed sleep.
Anyway, just recently I decided I wanted to lose a little bit of weight- ok a lot of weight! I went back to using Slimfast powder (as well as Vit B and D, which I have been using since talking with the Neuro team, after the diagnosis.) I don’t eat brekkie, as I have always hated getting up and eating. I can manage the shake.
My energy levels have shot right up through the roof, with just the powder shake when I get up (and the compulsory tea!). Not sure if any other makes of powder will have the same effect, found the Tesco version didn’t though. Don’t worry, I’m not a salesman on commision. I don’t find the ready made bottles have as much effect, although they do give a fair boost. And I love the coffee flavoured one.
For a couple of quid and a half pint of milk, it may be worth a go. I can see me using the powder even after I finish dieting, just for the energy boost I seem to get.
Hope you find something that works for you.
X
You could try a drug for this - people swear by Modafinil. Make sure you tell your neuro that you’re needing to sleep lots as it’s a drug to stop that, not just tiredness (I know there isn’t much difference between feeling tired and needing to sleep lots but neuros seem to struggle with that concept).
Hey Em, you will find that the oxygen treatment will help the tiredness. It made a huge difference to me and so did the LDN. Give me a phone if you want to have a bleather about it. G
Hi I’ve had terrible fatigue for years, drained of energy and sometimes unable to move or speak. I was taking Amantadine which worked at first but stopped having any effect after a few months. I started taking LDN two months ago and I am now awake all day and active. I was very sceptical when I first started on it but bought I had nothing to lose. To be honest I thought it might help with the pain and never expected it to have such a dramatic effect on my fatigue. I am even starting to socialise and get out on my own : )
Hi Em,
Fatigue has been one of my main symptoms for years, but I’ve been feeling much better recently since I’ve been doing fatigue management with my Occupational Therapist. I had to keep a diary for a week and rate my fatigue levels from 1 to 10 for each activity I did, to see if there were any patterns. At the time, I thought it seemed a pointless excercise, but went along with it to keep my OT happy! To be honest, when I looked through the diary I didn’t see any patterns, but when the OT looked at my diary, she was able to point things out to me. I have had to make changes and if I don’t have the energy to do something one day, then I don’t do it, whereas before I would have pushed myself, then felt wiped out and miserable.
Rather than pushing on when you’re feeling really fatigued, you need to rest, otherwise you will be completely exhausted. Prioritise things, so that you can conserve your energy for spending time with your children and the things you really need to do. If you need to nap at 10am, then do so if you can. Some days I find a power nap on the sofa helps and other days I go to bed and set 2 alarms, to make sure I’m awake to pick the children up from school! I have found going and sitting outside in the fresh air helps me too.
Hope this helps.
Fizzy xx
Thanks. Just with the baby being 11 months she doesn’t really sleep through the day apart from 20 mins when my sons at school next year it might help. Had o.t. In she has been good but isn’t much she can help with at the moment x
Hi Em. My biggest problem gas always been fatigue but it definitely seems worse when I think I’m in relapse. In fact during the relapse that led to dx I was sleeping about 16 hours a day. I couldn’t have pushed through if I tried. In hind sight I can look back and see that I have required to sleep far more than is normal for a long time now but it has definitely got worse over the last year and a half. Post relapse I was still sleeping about 12 hours a night sometimes which was putting a restriction on my day to day life and I couldn’t have imagined going out in the evening as I always needed to be in bed by nine. And that would be a good night!! I started taking Modafanil a couple of months ago and I have probably gained back 2 - 3 hours of my day. I find it do much easier to get out of bed in the morning and some nights I’m still up at half past ten. I’ve even managed a couple of nights out. Yay. I don’t know if this would be a solution for you but it is worth looking into. Ann Marie xxx