Relapse pattern.

Everyday living
1

My relapses always start with me feeling really ill for a day,then it calms down for 3 or 4 days and i feel almost well,and then on day 5 wham bam it really starts, usually for 12 weeks these days,just wondering if anyone has similar,my relapses only used to last 6 weeks,but ive never recovered fully from them even from the start 23 years ago.

i dont know if i am secondary progressive with relapses or progressive relapsing ms,all i know is i am very ill these days.

i also wonder if why they last longer now is due to me being older,and as we know the older we get the longer it takes us to recover from anything.

J x

2

I don’t think the length of time a relapse takes to recover has anything to do with age. Right from my first ever relapse at the age of 30, my relapses have taken months to (even partially) remit. A relapse that only lasted 6 weeks, or even 12 weeks would be wonderful. People ask me whether I have good days and bad days. For me it’s generally been good months and bad months. And right now it’s tending to be bad months and worse months!

Maybe the way your relapses begin Mrs J, is related to infections / antibodies thinking there’s a foreign invader, thus leading to disease activity. Obviously, I know exactly zero about science, so it’s a pure guess!! Mine don’t start like that at all, they just start with either new, or worsening existing symptoms. Then they get worse. Then they hang about for what seems like forever, until one day months later I suddenly realise that my left leg (or vertigo, or whatever) seems a bit better.

This is the reason why I started a health diary about 4 years. It’s just to keep track of what’s happening on a daily basis.

Sue

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Same here. Sometimes people who don’t have MS and have just found out that I do will inform me in confident tones that ‘I must have good days and bad days, then…’.

What am I supposed to say to that? Ask WTF they mean? Launch into explaining that yes, of course I have good days and bad days like everyone else but that they are the very least of my worries? Or just nod vaguely and change the subject (which is, of course, what I usually do.) :slight_smile:

Alison

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4

Plus, I’ve been having a post Tecfidera relapse. I took a course of steroids that finished on about Monday. So now people keep asking me if I feel better. Oh yes, of course I do, I took a 5 day course of drugs so now the relapse is over. Miraculously I can suddenly walk again. My legs hurt less, my extremities feel less numb and burnt all at the same time. And as for fatigue, well, that’s a thing of the past!!! AS IF!!!

About the only thing that feels a bit better is the fact that I’m not biting people like a badly trained Rottweiler! Much!

Sue

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5

Ah,

Can only sigh with recognition at all of this.

Even my MS nurse has come out with something like: “Yes, but on a good day?” before.

What are these “good and bad days” I’m supposed to have?

It is fairly stable - stably crap.

Tomorrow will be approximately as crap as today. It’s not up and down like a yo-yo.

Yes, I have had occasions - not many - where things changed dramatically for the worse overnight (i.e. a relapse).

But in general, tomorrow, and tomorrow, and tomorrow, creeps in this petty pace from day to day.

I’m not going to wake up suddenly feeling as if I didn’t have MS. On the evidence of the past five years, I’m probably not going to wake up suddenly and find anything major has stopped working - although I shall always retain that delightful possibility, no matter how many years have passed without it happening.

I haven’t relapsed often, but when I have, it hasn’t been a bad day, or a bad few days, but a bad bloody year. And I wasn’t “completely fine” afterwards, but ever so slightly more crap than the baseline level of crap (which, for all practical purposes, has ALWAYS been there).

Baseline crapness IS increasing, but not in the form of obvious relapses, and probably not fast enough to be SPMS, either. Just very, very, stealthily. I said to my neuro it’s like ageing, but too fast, and he said that’s actually not a bad analogy, as it has some features in common with that.

Tina

x

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6

Baseline crapness is an excellent phrase and one which I shall adopt (if you don’t mind).

Essentially, what I answer to most people who ask how I am is “fairly crap, but generally only the usual crap, not much more crappy than normal” unless I’m trying to be polite when “crap” is replaced by “rubbish”. But then I don’t speak to many people who might be offended by the word.

Sue

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7

You’re very welcome to it.

The proper word is probably “crappiness”, but that sounds far too much like “happiness”, so is almost funny in how misleading it is.

Even my mum is not offended anymore, when I talk about “crap” in relation to MS. I don’t appreciate it when people can’t express themselves without punctuating every line with swear words, but those words do have a use, and if you can’t use them about MS, when can you? It’s not a nice thing - I don’t see why we should sugar-coat it, and only use nice words.

If I hit myself with a hammer, I’d let out a few choice words. MS is much worse than hitting yourself with a hammer, because it’s every damn day, for the rest of your life. So yes, I’m going to have a few unladylike things to say about it. Which even my 76-year-old mother accepts as not disproportionate to the circumstances.

Tina

x

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I’m the same SP, no relapses just the crappy normality of everyday. No good days I get up in the morning with legs like concrete and my left side getting ever weaker despite doing exercises. I honestly can’t remember what it was like to feel really well, this is as good as it gets.

My daughter told her friend that I’m doing fine, just has some mobility problems. WTF and the rest. But on Christmas Day I’ll put on some makeup and plaster a smile on my face and pretend everything is fine. What I would like to do is keep my pjs on and eat chocolate but I wouldn’t see my grandkids. So I will give myself a hoof up the bum and get on with it.

If nothing else getting it out on here has helped a bit.

Merry Christmas, everyone

Mags xx

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9

yes, baseline crapness captures it exactly… CPC - creeping baseline crapness

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I was only diagnosed out of the blue in June, and this is the first time I have heard the beast described perfectly.

People ask me how I am and the answer is always “fine, very well thanks” when really I want to say crap. Baseline crappiness gets it spot on. It’s just that occasional days are just baseline crap and the rest are crappier on an upwards sliding scale.

Presently baseline crappiness with extra crap on top of crap with my first experience of the hug which is hurting like a big pile of steaming crap !!!

Thanks all, I love this thread

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11

Also people think when you have RRMS when you are in remission you are well, that is so not the case, for some maybe,i have never felt well in all the years i have had MS, when i have a relapse i cant function very much at all,when it calms down i can function a little better but not that much better.

I did pick up more in the early years of my ms,but i could never walk more than a few yards after my first big relapse.

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