Forum

Relapse Advice?

Hello everyone,

For the last 9 years or so, I have experiences relapses which have begun about November time. However, I have onlt known that they have been relapses for the last 2-3 years, so I’m not good at controlling them.

I always know when I’m in a relapse but I am not aware of when things are improving, and when the relapse finishes. I do, however know that I’m better from Feb / March onwards. That makes me think that my relapses last 4-5 months.

I’ve just seen a neurologist who told me that a maximum relapse length is usually 4-6 weeks; so therefore after being in this relapse for a month already, I should almost be over it. Any comments on that? Does the remission (getting well again after the relapse) take a while to get over?

I’m sleeping every spare minute I have and hoping this will be enough to get over the relapse. I’m still managing to work my part time hours. The dr has advised I take 2 weeks (or more) off work, but I’m very reluctant to do that because I’ve had so much time off work, and I teach so I don’t want to let my kids down.

Any advice on getting over a relapse? Like I say, I definitely know what one is but then I don’t know how to deal with it. If my relapse has not gone in 2 weeks, I may be given IV steroids. The dr recommended tablet form initially, but I declined because they made me feel horrendous last time. Am I correct thinking that the IV has less severe side effects. The nurse + dr say they are similar, but I’m not so sure!

With thanks

Sue x

Your experience certainly rings some bells with me.

For the past three years before this one I have started a cascade of overlapping relapses in autumn and they have gone on until late winter/early spring. But they have come in waves - as problem 1 is starting to peak, problem 2 is ramping up, and as problem 1 fades, problem 2 is peaking and problem 3 is starting and so on. I have never known whether to class the whole thing as one relapse or 4 (or whatever.)

And it’s so hard to tell when a relapse has ‘finished’ as in ‘got better as much as it is going to,’ isn’t it? I must admit that 4 - 6 weeks sounds short to me - I’m sure I’ve had relapses that have continued to improve longer than that before levelling off with permanent residual symptoms or (rarely) disappearing completely.

I have had generally good experiences with IV steroids, but have probably tended to leave it a bit later than I should to start them. Apart from insomnia (which can be planned for by stocking up on sleeping tablets) there have been no obvious problems.

As for time off, well, if your doctor thinks you need to take some then I guess you need to be sure you know better before deciding not to take the advice! It is so hard when you don’t have time to be ill, but unfortunately MS does not always consult us first. Whether you take time off or soldier on, I hope things improve for you soon.

Alison

x

Hi Sue,

I’m like you: worse in Winter, and have deffo had relapses lasting months. The longest was a year - although, also like you, I can’t tell EXACTLY when they stop. I just notice the symptoms get less and less noticeable, until eventually, I conclude I’ve recovered as much as I’m going to.

I’m sorry, but I don’t think your neuro is correct. Is he an MS specialist? I think average (not max.) relapse length is a few weeks, and several months is definitely not a rarity.

It’s (sorry) ridiculous that he’s telling you you should be “almost over it”, because it takes as long as it takes. The relapse has got no idea your neuro says it should only last six weeks, and it will take its own sweet time!

“Remission” is the period when you’re not having any relapses, so no, remission does NOT need time to get over. If you’re still having symptoms of the relapse, then you’re still in the relapse, not in remission.

I would take the time off - though having said that, I never have, so far - but my relapses have NOT been disabling. Partly, I keep working through them because I’d be so bloody bored otherwise, and have nothing to think about but the relapse. But I certainly don’t think you should feel obliged to work, if your doc says you need time off. Working through a relapse is one thing, but blatantly disregarding the advice of your doctor is another. I’ve never actually been told I shouldn’t be working, so it’s slightly different.

Tina

Thank you to you both.

I did think my longest relapse was a year - guess I was right.

The MS nurse told me the same re 4-6 weeks. They did say tho that if it wasn’t better in 2 weeks that I could have IV steroids.

I’m thinking of continuing work because I get so low when I’m not working. If I take 2 weeks off now, I may still need more time off later on for possible IV steroids, so I’m thinking of working for the next 2 weeks and then stopping if I have the steroids.

However, I’ll speak to work about it tomorrow - I think they’ll tell me to take the drs advice. I think he’s a MS specialist - he was with the MS nurse and it was a MS clinic. I think he’s new though. Maybe the 4-6 weeks is a minimum, but I thought 24 hrs was minimum. Such confusing, contradictory info. If I take time off work it’s hard for me when I return.

But, I’ve slept all day and I’ve only just managed to put my washing on that’s been waiting a week! Got to hang that out soon and need food shopping too.

I’m sleeping all the time when I’m not working.

Think I may need the steroids in 2 weeks. From past experience my relapses at this time of year do not disappear quickly.

12 months / 16 months without steroids. Then 4 months with steroids. I’ve been on Betaferon for 6 months so hoping these along with steroids will be much shorter.

Apparently anyone with a relapse should rest and take time off work, because your if you don’t rest the healing process will take longer.

Easier said than done. I need something to focus on and keep me going. Work is that thing!

But, I’m not improving and that’s the most important thing. I seem to be sleeping more and more. I need to believe in my body again - that it can heal itself, but I’m not so sure.

Bye x

I start relapsing october/november and mine can last about 10 weeks if i have a bad one,

for the last few years i have had severe ones,that have knocked me off my feet and left me in bed for 10 weeks at a time, how i hate the winter,these days my relapses stop me functioniing very much at all,and i HAVE to be in bed,most of the time,

years ago i could work through them and carry on as normal,not nowdays though.

I start to pick up in march/april and i am normally ok through the summer months,as long as its not too humid,

if i were you i would take time off work, so you can rest properly,and as for the steroids, my ms nurse said to me that they would only suggest them to me IN the 1st 2 weeks of a relapse,

somtimes i dont know where they get there info from, these neuros.

Hope you feel better soon.

jaki xx

Don’t think it’s possible to put a time on relapses, prob different for each n every one of us, I am totally confused by relapse/remission borderlines and changeovers. Don’t think I’ve had one where there’s bin s clearcut line!! My relapses have been anything between six weeks and a whole year, I’ve not had very disabling symptoms, mainly sensory so haven’t been hospitalised or needed steroids or other meds. The only thing I know is that rest and pacing yourself through recovery without expecting a time limit is the best way to approach it. I think sometimes it’s not possible to tell the difference between relapse and remission as you cross the stages, especially as sometimes some symptoms stay with you a while longer or even permanently. Good luck anyway xx