Hi,
Feeling terrible at the moment, just cant get any energy. Sleep and rest not helping just so so exhausted all the time even talking is too much.
Anyone else affected by fatigue like this and what if anything helps.
Thanks Christine
Yes! Sadly I think there are quite a few of us who suffer extreme fatigue and even more sadly there seems little that can be done about it.
Theres Amantadine and Modafinal but neither worked for me. Amantadine did nothing and Modafinal made me so hyper I was like motor mouth which of course eventually made me even worse but they do suit some peopleā¦id say certainly worth a try!
Hope tomorrow is a little bit better for you,
Nina x
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Yes Christine, fatigue can be unbearable, sometimes I donāt even have the energy to talk, itās just too much tiring.
Itās always these times that I find trying to sleep the hardest, even though it feels that I need to, so frustrating.
Never tried any meds for it, as I really donāt want to take any more than I already do. My only advice is, if you can, rest as much as possible, be kind to yourself and donāt push it.
Take care
Pam x
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Hi Christine, as the others have said, thereās nothing that helpsā¦or nothing that Iāve found anyway. Eating regularly does help a bit and if itās really bad a banana or even bowl of cereal can help a tiny bitā¦but really the only thing to do is rest, rest, and then get some more rest.
The best advice I can give is to make your bedroom into a little haven. Have a TV, DVD player, radio and music player all at hand. Books, bedside lamp, ipad or laptop. Also a large bottle of spring water and glass and flask of hot tea. Make it so the you have everything in armās reach and only need to get up to go to loo!
Accepting the fatigue is far from easy but at least if your bedroom is set up for it you can relax and not keep having to drag yourself up to fetch things.
Donāt fight it. It makes it much worse.
Pat xx
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Thanks Nina, yes i hope for a better day also. Im so drained. Iv not tried any meds for fatigue, only got diagnosed a couple of weeks ago and waiting to see ms nurse.
Thanks Pam,
When it comes to night i fall asleep and then im awake again and this seems to go on most of the night. Its horrible not having the energy to do simple things. I will try to be kind to myself but get frustrated of what i cant do.
Thanks Pat, I will remember that dont fight it. I think im still at the stage where im thinking i should beable to do that.
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Hello Christine, Ive been hit by a bout of fatigue, Iām completely drained. Its weird i feel that my whole body is fizzing and very weak, its a strange feeling, ivāe done a lot recently and iām paying for it.
I hope you feel better soon.
Michelle and Frazer xx
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Hi Michelle - you hit the nail on the head with your description!
Whenever I try to do anything more active than just the very basic essentials of every day life its like my whole body starts āfizzingā and feels weak and wobbly all over 
Ive been trying to explain it to other people and to my neurologist, but its hard to describe accurately. My warning signs when Ive āoverdone itā is when the Tinnitus gets louder, left foot goes totally numb, limbs feel trembly and weak, but most of all this weird, unnerving fizzing and vibrating sensation which goes through my whole body. Once it got so bad it turned into a kind of seizure and I was admitted to hospital for a week of steroids and rest. Take care Christine and everyone x
Carmel
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I also get the fizzing and vibrating sensationsā¦have it most of time in legs but when Iām very tired it spreads all over body and sometimes feels as if it pulsing along with my pulse if that makes sense.
Itās impossible to describe to anyone whoās never had it. Most peculiar sensation!
Carmelā¦I also have tinnitus which gets louder when Iām tired! My neuro told me heās fairly sure MS has caused the tinnitus because it goes up and down in volume according to how bad my MS symptoms are.
Such fun!!!
Pat xx
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Hi Pat,
Im sorry to hear about your Tinnitus, but also relieved its not just me! I kept wondering if I was imagining it or not, but the volume in my left ear gets louder and louder depending on how bad my symptoms are and how tired/hot/stressed I am. it only started last year after I had my first bad āattackā of vertigo, nausea and numbness.
I found the heat and humidity in NZ to be unbearable during summer after moving back here from Europe and the fizzing and tinnitus just go crazy when I get hot but reside when I cool down and rest. weird!
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Heat and MS do not go well together for most of us.
You probably get Uthoffās Syndromeā¦itās when you get hot all your symptoms get much worse. I often get it in bed and 100% cotton sheets have helped a bit. I also get very hot with any activity at all. I spend most of my life opening windows then closing them, stripping off my clothes & then an hour later putting on warm dressing gown.
Itās such a problem with most MSers that it used to be used as a test for MS before such things as MRI and lumbar puncture. They would give the patient a hot bath to see if symptoms got worse.
I couldnāt bear going to a hot country nowā¦my roaming days are truly over!
Pat xx
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l take lots of supplements - no meds for PPMS - l am on a high dose of VitD3 - Magnesium VitK2 and all the B Vits - B12 l take in liquid form 5000mcg daily - B Complex and B7 Biotin - l am following the facebook group Biotin for Progressive MS. This l have found gives me lots of energy - l hardly sit down all day - but then l do not sleep much at night - only 3 or 4 hrs - This shows how different this disease is from one to another - No wonder they have never found out the cause of it. Whilst most pwms suffer with constipation - l am the other way.
But l am a firm believer in taking these supplements - as all the prescription meds l have tried have so many adverse reactions.
Just google Vitamin B12 deficency MS - and Vitamin D3 deficiency MS.
I find I can talk and then have to leave the room and sit quietly maybe sleep but l just need to get away I cannot keep up or join in sensibly. I get confused easily.
Don
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You have to learn when your battery is fully charged. Mine is when I wake up even after a bad night. So i do all the things i have to do first thing even getting up as early as 7am to do it.
Then i rest from 11am until 1am, and do a little more, have my dinner main meal at 1.30/2am, then i rest again until 4pm. I am in bad by 6pm, but i do manage to get a lot of little things done. I have the privilidge of having direct payment care worker so it does help, and with my DLA money i have a cleaner twice a week.
I dont think i would cope otherwise.
It is a case of pacing.
Also i drink Almond or coconut milk and this is full of Vit D, and essentials for us. I gut back on gluten as this is draining too.
You just have to learn to go with the flow. Its part of MS, and something we have to live with sadly. The heat well that just wipes me out so i prayer for the winter lol. x
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Oh wow yes thats how i describe it, fizzing and vibrating, mostly in my legs but when its bad it can be from waist down even under my private area. I am also cursed with tinnitus which is so much worse if i have overdone it. UGH at least we are book ends ha ha. x
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Hi Christine,
Quite a while ago my GP prescribed Vitamin B Compound Strong Tablets for me. I read later read that Vit. B aids the system to release energy stored in the body.
I have to vary the dose of both because, like spacejacket, I sometimes create more energy than I can use. This makes me twitchy.
Regards,
Anthony
Thanks everyone,
Im slowly returning to the land of the living. For the past two days iv only managed to eat and stay awake for a few hours. I know where iv gone wrong and need to start saying no more often.
Thanks Christine
I occasionally use Modafinil for social occasions in the evening. If I take half a tablet mid afternoon, I wonāt face plant in to the dessert! However, I find it very strong, one tablet really makes me buz. It does zero for physical energy. I was really struggling with fatigue until I started taking MitoQ. After a week, my energy levels were transformed. I wouldnāt be without it now, very expensive & worth every penny.
Nb I also take Biotin, vit d, 7 & 12, evening primrose oil and flaxseed oil washed down with a cinnamon pill.