Last reply 2 months ago
FATIGUE!!!

Hi everyone,

Can anyone describe to me what they feel like when the fatigue kicks in??

Being all new to this I’m trying to work out what these feelings and sensations are that I’m getting. My legs feel really heavy and they are buzzing. Mainly in my thighs and knees. My legs are also aching even when I’m sitting down! I’m getting these feelings in my arms too, I do feel quite tired. In fact my whole body feels tired!

It was very hot here yesterday and last night, and I did overheat a bit yesterday. I didn’t do anything too strenuous though! So I was wondering if that may have contributed to this feeling of fatigue today??

My head also feels a bit foggy, like I can’t think straight!! Trying to just relax but the old anxiety is kicking in grrrrrr!

Any tips on how to deal with feeling like this?

Thanks everyone! Xx

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vivien
2 months ago

When my fatigue is bad, it’s as though I’ve been given a general anaesthetic and I can hardly keep my eyes open, never mind do anything physical or concentrate. The only thing that seems to help is either going for a wee lie down or reclining in my chair and closing my eyes with the TV 📺 off and no other distractions. Switch my brain off and just drift, don’t think about anything for 30 minutes. Sometimes I doze off, sometimes I don’t, but it recharges my energy levels a bit. If I’m really bad, I can sleep for a couple of hours!
Everyone is different, so you need to work out what works for you 🤔. The MS fatigue is caused by your brain overworking as it tries to rewire itself around the lesions. The worst thing you can do is try to fight it.
The heat, stress / excitement and worry make it worse, as can being too cold ❄!
Your body needs rest to allow it to heal, so listen 👂 to what it’s telling you.
Chin up, it does get more manageable! NB, the side effects of a lot of the meds we’re given to treat symptoms can be drowsiness, too!


iris
2 months ago

hi jules sorry you are feeling bad. you are quite right in that the heat is no good for m s . and can give rise to all that you describe and for some more …or less. Wadeing through treacle with or a body feeling like a concrete block is how i would describe the fatigue which for me at least is worse in the heat. i know this for sure today because i feel like a new woman because surprise the temperature is 10 degrees cooler! i can do up to 30 but above… difficult sleep alot …..really!

Dealing with the heat for anybody is difficult for us we have to be well pro activ ie shut windows, draw curtains [have blackout if possible ] and fans on. basically the opposite to keeping warm in the winter apart from the windows that is….springtime option????? chill little pleasures forwwarned is forearmed and no doubt you know really but like a lot of things you have to experience it yourself. be happy


stumbler
2 months ago

@julesds1977 , gosh, where to start on this one? How about an official explanation :-

https://www.mstrust.org.uk/a-z/fatigue

And the following link may provide some answers and suggestion for you :-

https://support.mstrust.org.uk/file/Living-with-fatigue-2018.pdf


rotherhamdave
2 months ago

Sleep n sleep. Legs r lead n it’s just difficult trying to do things. So nap n recharge


julesds1977
2 months ago

@vivien thanks so much for that explaination. I never realised it was the Brain trying to rewire around the lesions! Makes sense though!! And makes more sense as I read that when we overheat the messages take longer to get to the brain anyway, so if they are having trouble finding the right path as well then no wonder I feel like this today. I absolutely need to stop the worrying. The anxiety makes me on high alert then my body will not let me rest or take a nap. I’m working on it, it will just take time. Xx

@iris Thankyou! I can’t wait till it’s Autumn 😊 I do feel the cold, but I cope much better in it!! I’m learning things all the time. I just need to chill out a bit, and I’ll get there xx

@stumbler thanks so much for the links! The second one looks really useful. I’m still waiting for my MS nurse appt, but when I get it I’ll be asking about fatigue management. That’s for sure!! Xx

@rotherhamdave thanks! Yes I just wish my body would let me nap when I need to during the day. I’m a single Mum and have always been on the go, so this is going to be a big change for me. Which will take a while!! Lol. I sleep ok at night though which is one good thing! Xx


souljackerfool
2 months ago

Hi Jules , We all seem to find different symptoms and effects of ms. I get seriously lead like legs after a days work and also brain fog in the evening . I use a muscle rub ( it has capsicum as one ingredient) on my limbs and I find a cold pack helps my brain fog .Hope you find a solution that helps.
Tom


lightning87
2 months ago

I didn’t realise that is what caused fatigue either, I presumed it was just a lesion somewhere. Very interesting!

Great post as I don’t know what the fatigue feels like…yet!

X


vixen
2 months ago

Hello @jules1977. When I was diagnosed last year, I thought the fatigue feeling was the new version of me and was permanent. Today, I don’t have it at all and I’d say that was achieved through a modified lifestyle. So, really healthy diet, not pushing yourself at all when affected, not taking too long with, or taking too hot showers or baths. Try to do gentle exercise to keep the muscles working. Set reminders and organisational prompts for yourself to avoid stress and help use time wisely. For example. When staggering home from work, I would get my stuff ready for the next day whilst waiting for the kettle to boil; bag repacked with medication and snacks, clothes and travel card ready. The brain fog will start to clear too; to help me focus, I would sit with a cup of tea and play word games on my tablet. Or sing along with song words. Or write emails. Or make lists! Hope you feel better soon, you are newly diagnosed, so give in to fatigue when it happens and learn to really listen and respond to your body. All the best x


julesds1977
2 months ago

@vixen Hello there! Thanks for your comment. It definitely give me hope when you say that you now don’t suffer with it at all. I will try all of your suggestions! When you say healthy diet, what did you change in yours to become more healthy? I’m already dairy/gluten/wheat free because I’m intolerant. Sometimes Lately I’ve been feeling so fatigued that my get up and go has gone and I can’t be bothered to spend ages cooking from scratch! I’m a single parent with very little support so have to get on with things on my own. I’m using a slow cooker as much as I can as I find in the mornings I have a bit more energy. The brain fog is the worst! I’ve been doing word searches and reading when I can to help. Would you say I’m feeling like this because I’m newly diagnosed and just trying to work everything out?? Xx


vixen
2 months ago

Hi there. Everyone is different of course, but I’d say me and body took a year to recover from onset relapse and diagnosis. The diet I chose was the Keto diet, I’ve written a few posts about it. Lots of people in previous posts have talked about understanding what their new normal looks like, it’s such a common theme. I’m sure in my case I will get bogged down with fatigue from time to time, but at the momentI am experiencing good health. I’d say that’s more about emotional acceptance and trying hard to find balance every day. Give yourself time, lots of sympathy, don’t be hard on yourself, and keep giving yourself little treats on a daily basis, it really helps especially if you feel you deserve it (which you do!) x

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