Forum

Supposed to be in remission

I’m in remission, but i’m still not ever feeling 100% well. I always feel so tired, depressed and sick.

I’m starting the injections next week. All I know is that they slow the disability progress down. Will they also make me feel more well in myself genuinely?

Thers a lot of misunderstanding, regarding rrms,being in remission doesnt mean that you feel well,i was diagnosed rrms 21 years ago,and i have never felt well,even when in long remissions

there was always that tired,washed out feeling,like i had flu all the time,and in my 'remissions’i never went back to feeling well again,some are lucky with their rrms,and feel perfectly well in remission,you might be one of the ones that do.

Hi Oceanblue.

Sorry, but it’s a common misconception that remission means you should feel completely better.

That may be true for some - especially in the relatively early stages of the disease - but is not the reality for many.

I often describe it as if I’ve always got flu’, and watching some of the MS Soc. videos about fatigue the other day, I saw another lady who described it exactly the same way. “Jetlag” and “hangover” are other popular descriptions I relate to.

I’m not on DMDs myself, but I do know they only set out to reduce frequency and severity of relapses, not treat symptoms. So unless your feeling groggy all the time is due to relapsing a lot, I don’t think you can expect to feel much better in yourself. You seem to think you’re not relapsing at the moment, so it’s unlikely DMDs would help with existing symptoms. You might ask whether there’s any other treatment that would, though.

Quite a few people are on drugs for fatigue, though I’ve never been offered any, despite spending every afternoon asleep.

Tina

x

Thanks Jaki and Anitra for your replies. x

Some (good) doctors will prescribe Modafinil for excessive sleepiness. I’ve met a couple of MSers who have found this to be a big help but it’s only meant to be given for sleepiness, not tiredness.

I am on Fampyra, which I pay for myself (£180 per month) and it has made a huge difference to my excessive sleeping and to my general tiredness. You can get this on the NHS if you live in Dudley (and possibly in some other places but not in the West Midlands). It is actually licensed as a walking drug but affects all parts of the body. I don’t know whether any doctors will prescribe it off-license for tiredness.

I was diagnosed with RRMS in September 2006 but cant say I’ve ever had full remisson from when I was diagnosed till August 2008 I was relapsing every 4 to 5 weeks I was on Avonex for over a year but that done nothing to ease the relapses I got slightly better between relapses till I took another 1 and ended up worse than the one before. I started Tysabri in August 2008 I’ve never had a relapse since I suppose I’m in remission but nowhere near 100% but I’ve this is as good as it gets I’ll be happy I can live with it ok