@beccygreeneyes

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beccygreeneyes

FATIGUE HELL! PLEASE HELP?

Hey so im a newbie here but was wonderin if u guys have any thoughts. I got my second relapse in May which resulted in my diagnosis. I had optic neuritis. My vision is coming back slowly and is now 20/30 but colour vision is still nowhere to be seen. My fatigue has been awful. Anytime i exert myself it hits me. I have been told i am no longer in a relapse but am in remission however my fatigue seems to be worse now! I just drove 20 mins to collect some work and had to lie down for an hour. Does fatigue get better and if so WHEN? ps i am on a drug called LDN. Have been on it 6 weeks and not noticed a huge difference yet. Would appreciate your replies xx

markms

@markms

hi sorry to here how you are i have ppms so im crap most of the time some one will reply to you soon on here.

beccygreeneyes

@beccygreeneyes

Thanks so much for your responses. Well my neurologist said its cos im in remission so my body is trying to heal itself....but lets see shall we! He promised my fatigue would not be like this forever so i will take his word for it. I have heard that LDN can help my fatigue but im not on a high enough dose yet! Watch this space! You guys seem very upbeat its great!

markms

@markms

dont let it beat you or get you down fight all the way. like i said i have ppms (should re name that to crap ms another story) i have a full time job as well and go the gym all i can say is pace your self find out what works for you no ms is the same. it will take time hope it helps

lloyd

@lloyd

I also have ppms and the fatigue is my worst enemy I here some people say it goes away after a while nut at my age and ms type all I have is hope. As others have said I have learnd to handle it all I can do is 15 or 20 minutes of work and then an hour of rest. Feel better Beccy.

atoney07

@atoney07

I too have been struggling with fatigue. I have also been having a hard time concentrating. My MS doctor prescribed me amphetamine salts which has helped tremendously with both.

StallionicChampionic

@StallionicChampionic

Hiya, Sorry to hear you're feeling the fatigue. As people have said it's trying to learn to manage it. Trying to manage it nd sticking to it are difficult things to grasp. If like me you were previously v active it's hard to stop at the right time. I've done far too much today and i'm feeling it big time. Plus it's warm and humid....killer!! You'll learn in time to rest when you need to. Like heather said, 'don't push it'

beccygreeneyes

@beccygreeneyes

yea ive learnt that! my neurologist was like dont try and fight fatigue it wont work lol. Yea the heat makes it sooo much harder! I was determined to finish some work today and spent 2 hrs on it and towards the end i could feel my eyelids stinging!! Im learning to pace myself. Does anyone take vitamin B12 supplements? picked some up today and it said its meant to help with tiredness and fatigue! gotta be worth a shot? x

lloyd

@lloyd

I had heard that B12 is very good for ms but I have not tried it yet myself but I will soon after I move.

beccygreeneyes

@beccygreeneyes

Oh really? ok am def getting on it! I am on a ridiculous amount of supplements im rattling around London!! Whats one more supplement? :) Let me know if B12 does anything for u!! x

tiltawhirl

@tiltawhirl

Hi Beccy, SPMS here and fatigue was absolutely crushing for me. Sometimes I would sleep two days in a row, only getting up to use the toilet and drink some water. Psychologically for me it was tough because I am a late nighter and previous to MS would sleep as little as possible. I just hate wasting time sleeping! But the advice that others have given in regards to not fighting it is invaluable and should be embraced immediately. Trying to push harder when your body is fighting internally just makes it worse. So get rest when your body is saying so, and don't beat yourself up over it. :) tilt

beccygreeneyes

@beccygreeneyes

Tptally overwhelmed by your replies!! tHANKS SO MUCH! :) Yea am learning that at the mo...especially as i am in remission to be a bit nicer to myself :) I give myself so much stress about it as i was such an active girl!!!!but my neurologist told me it would not be this bad forever lol...What does he know? ;) nah il take his word for it! Vitamin b12 will be started today!!! x

maryklou

@maryklou

Fatigue is the worst for me, obviously the more active i am the worse it is but i do try and rest whenever i feel it getting bad. I like the rechargeable battery concept cause that's exactly how it feels lol!i wouldn't say the fatigue gets better but you do learn to manage it better which helps you in the end. Hope your feeling well and everyone's having a good weekend :)

DjBlack

@DjBlack

Hey beccy .... not sure if I'll bring anything new to the conversation without going through and reading them all so I'll just write what I've experienced haha. Mine ebs and flows. I can have awesome 7-8 hours sleep and still feel dog tired next morning. For me ... coffee is a god send but I am wary of drinking to much (even though it is delicious) I don't want to become that attached. I guess as everyone probably said it affects everyone differently and you'll slowly (but surely) work out what suits you best. It is a b*tch of a thing but sadly we all have to deal with it. I was even considering having coffee beans in milk as my breakfast at one point haha ... not sure how that would go. Either way I'm always here as is everyone else to help out. Dave.

beccygreeneyes

@beccygreeneyes

thanks so much guys. well as an almost nutritionist i know how bad coffee is for u lol so i would steer well clear lol :) ahh i dont like hearing it doesnt get better. i WAS told by my neuro it does get better and its only bad now cos im in remission so my body is trying to heal?? xx

DjBlack

@DjBlack

steer clear of coffee :O ... how would I face work every morning! :P ... not my fault MS made me drink it haha. It does get better :) just can't tell you when or how much better. Well if you're on the way back up from being in remission from your relapse then it surely should get better. Worst comes to worst ... consult your nutritionist books for advice :P ... you might find a bit where coffee is good! haha

beccygreeneyes

@beccygreeneyes

haha u on supplements babe? dont blame ur ms on ur bad dietary habits lol. Yea i had optic neuritis in MAY. my vision is still not back in my left eye yet :( taking bloody ages. Yea im def in remission now so gotta take it easy still unfortunately. :(

maryklou

@maryklou

Its only cause iv been suffering from fatigue really bad for the past couple of months that I'm soo pessimistic about the issue. With the right advice and meds and depending on the person I'm sure it can get better. I hope your fatigue does get better for u

DjBlack

@DjBlack

I'm on medication ... Tysabri. Supplements ah just a multi vitamin. The fatigue doesn't get me down that bad ... Manageable :). Bad dietary habits :o I'm a machine! Well was hahah just lazy now I guess. That's no fun ... Haven't had the fortunately but sounds horrible ... I have poor vision in one eye but that's a whole other medical story haha ... I do have a few other than MS ones. Ah you'll get there :) we all do :)

beccygreeneyes

@beccygreeneyes

Yea fatigue is a right pain in the backside. Yea my optic neuritis was pretty bad so im sure thats why my fatigue is worse now im in remission. my eye was 20/200 which ive been told is legally blind! it is now 20/30 and my colour vision hasnt come back unfortunaltey. I had a brain scan 4 months ago and i had 3 new lesions 1 of which was sooo huge i couldnt bear to look! it was about 6 inches long and 4 inches wide! again another reason im sure my fatigue is bad :( oh wow ive heard things about tysabri! thats pretty strong isnt it. Im on this LDN drug. i hope it starts doin somethin soon :)

DjBlack

@DjBlack

Sounds like you better get into coffee ;) ... and espresso martinis!!! hahah delicious. That was the first thing I got checked (my optic nerve) when I'd found out about maybe having MS. THankfully mine was fine. Oh wow ... that's a big one. But you can take it on the bright side that the amount of lesions you have isn't directly corellated to the symptoms. So hopefully you'll be back in fine form soon :) Yeah I was on Rebif for 12 months or so ... changed over to Tysabri ... I think it is amazing! It isn't without its risks ... like literally haha but I think it is worth it.

beccygreeneyes

@beccygreeneyes

ahh thats interesting. I have had loads of other tests and it is down to my MS unfortunately. my neuro doesnt like giving fatigue drugs unless its really bad cos they have horrendous side effects. Plus im on LDN so i cant take alot of things otherwise they clash. Well it got worse with this relapse so now im remission im hoping my body repairs itself as much as possible and i can feel better in a few months!

beccygreeneyes

@beccygreeneyes

Ahh thanks so much i appreciate it. I know ive heard it can take months to work......i am on such a stupidly low dose its embarassing lol. im on 1.25 mg but am gna raise it a bit today. Yea my diet has changed alot and like i mentioned in a previous post i am on soooo many supplements!!! i really hope my fatigue gets lost soon! i just changed my bed sheets and now im lying down eurgh!!!!!

Chubbster

@Chubbster

Hey I guess that I am one of the really lucky ones as fatigue hasn't really hit me YET, although I won't be surprised if it does at some point in the future. I have recently comploeted an access to health course and I had to do a 5000 word independent project on MS fatigue. It may be worth approaching your local OT services and see if they can help. There are fatigue management courses out there and these could really help as I have seen how an MS'er friend who has completed one. It has taught her to manage her time and movement, so, that with careful planning, she is still leading a full and active life. Admittedly she does have to plan hours, days, weeks and months in advance. In her words "fatigue management has given me my life back".

beccygreeneyes

@beccygreeneyes

Hmm that is worth trying! I mean im hoping this is just a phase as im in remission. I do hope in a while it gets easier.....will keep praying. xx

Pulpculture

@Pulpculture

Hi Beccy. I had fatigue in the early days and it became my "companion" for a while. I am pleased to say it only affects me if I over work myself (i.e. go for a long walk etc.) Key factors to help are your diet (the right nutrients) and avoiding certain substances that might be upsetting your body (for some people it's dairy products etc.) "Good" fats are useful as your body needs these for the repairing etc. That said i can't start the day without black fresh coffee :)