Forum

Fatigue

Hi all,

I just wanted to hear people’s experience with fatigue. I was dx in 2013, been on Copaxone and then started Tecfidera at the end of Dec 2014. I’ve cut my work hours to part time (3x full days) but for a good month now my fatigue is terrible. I struggle to get up most mornings and almost ache with tiredness. In the past month I’ve pretty much done zero exercise as a result of this. My MS Nurse has previously said there is no treatment, something about the one medication they could prescribe was not making the medication for some reason??

I am just getting fed up of working and then pretty much doing nothing else except sleep! My job is tough (Probation Officer) so it takes quite a bit from me on them 3 days (brain power/emotional/need to be on the ball) but don’t want to further reduce hours plus I couldn’t afford to.

Does anyone have any top tips??

Thanks x

hi star

fatigue is a bitch!

in my opinion it is the most disabling part of it all.

ok i can still walk (with a wobble) but haven’t got the energy to do anything.

the medication that your ms nurse mentioned was probably modafinil but i don’t think it is available any more.

so unless you find a drug dealer it looks like you’re stuck with it.

sorry that last bit was tasteless.

the general consensus is to rest often, break the day into managable chunks, accept all help that is offered.

i really hope that someone comes along to offer you the ANSWER because i’ll be watching this thread.

good luck

carole x

Thanks Carole. My OH was even looking at anything you can buy online but that’s a dodgy road to go down. Just hoping someone might use some natural energy boosters or something…anything! I know exercise can help, it’s just summing up that initial energy to do it. My gym is right on my door step and I know it’s gives me that natural high…just need to shift my arse into gear somehow x

melatonin has a lot to do with the circadian rhythm and sleep patterns.

it might help with fatigue, logically it should.

good luck

carole x

I agree with Carole regarding melatioin, my fatigue has reduced since going to bed at 9.30pm each night. It was hard at first as I used to go to bed gone 11pm but I feel much better for going to bed early each night. The body apparently produces more melatonin when the bedroom is as dark as it can be. Black out or dark curtains, switch off standby electrical items off at the socket. The MS Trust produced a helpful booklet on fatigue. Here’s the link, it’s free to read online, also PDF option to read.

I reduced my fifty two weeks to term time to help me with fatigue, it just made me dread going back and I was just as tired as soon as I returned. Perhaps half days instead of full days. If you are in a work pension scheme be aware it may affect your final pension.

Jan x

Hi, If I have Gluton I have terrible fatigue, I still get fatigue but it only last for a short time, might be worth removing gluton from your diet.

Sue

A vitamin B12 deficiency can be the cause of fatigue/memory/brain alertness etc. l take a high dose daily of methylcobalamin B12 - dissolves in the mouth - so easily and quickly absorbed. You can not overdose as you just ‘pee’ out any extra. This weekend the front headlines of my newspaper said that B12 could be the answer - along with diet to prevent dementia. For many years it has been proved to be essential for us with MS to take it. Just google ‘Could it be B12 - an epidemic of misdiagnosis.’

Along with B12 - l take a high dose of Vit d3 - and 5HTP. And for some years l have been taking LDN - this really dose help with fatigue as it boosts endorphins - gives you a feel good feeling.

l have started taking D-Phenylalanine - GABA and Serrapeptase. ln the hopes of improving my lot. Prescribed drugs from the GP - just make me feel lifeless. Over the last 32 yrs of PPMS - l must have tried them all. Cant see the point of taking something that makes you feel worse.

l read a lot, at night, as l rarely sleep. And even during the day if l am watching ‘telly’ - l sit on the wooden bench in my kitchen and keep doing ‘stand up and sit downs’ try to do a hundred a day. Then squats - just a few minutes at a time to keep me moving. Try not to sit down for more then a few minutes -l get up - do a few more then sit down. Even though l now cannot walk unaided - does not prevent me from getting up and doing something. l even stand at the lap-top - doing a few Pilates moves. Everyone keeps asking me to sit down - because l do stagger about - and it does un-nerve them. But the voice inside my head keeps telling me ‘Get up - Get on with it’ . So l do. l have had a replacement hip and knee - because l have abnormal wear and tear of what was my good leg. This is caused by over compensating -lifting and taking all the strain off the MS leg.The knee op has not been successful and is worse now then before the op - and will probably have to done again. ln all these years, l did not think l would end up being disabled by my good leg and not the MS. My MS leg - just hangs there - have no movement in foot/ankle/knee. This has been like that right from the start. With PPMS - you do not get remissions - its there all the time.

But since taking LDN - my MS has improved. OK - many of you will poo-poo that. l can only speak from my personal experience.

1 Like

Also - l am much better without gluten!

Ah thanks everyone. Interesting re: the gluten. I’ll give it a try. Will also look into the supplements. I’m determined to get down the gym tomorrow :slight_smile:

sorry to hear of someone else who feels the fatigue is getting you down,im def better with no gluten. I read somewhere there is a connection with leaky gut syndrome. certain foods pass through a poorly gut wall and the body goes in to attack mode, as these proteins should not be there. see if a bit of diet experiments helps you.

I agree with the gluten threads. I definitely feel better when I cut this out, in fact, weirdly, before I was diagnosed I thought that was the sole problem!

i am at a blank with the fatigue, it’s a shocker. I spend my days off too tired to do anything and some nights I just sleep on the sofa as I can’t find the energy to get up the stairs!

X