Is it possible to have a fatigue relapse?

Everyday living
1

Good morning you lovely lot, hope everyone’s as well as can be!

This last week I’ve been really struggling with fatigue. I only have to be up and about for a short time and I’m finding I’m running out of steam a lot quicker than normal. Now I’ve had days like this off and on for a few years but it’s never lasted more than a day or two and normally a good day of doing nothing seems to sort the problem out. This time, however, it’s just not going away. I thought I felt ok yesterday so changed the bedding - thats all I did - and it completely wiped me out again! My legs are feeling very heavy and a little weak although they’ve not given way.

I went to see my GP over the weekend and he’s signed me off work for a couple of weeks but I’ve not been in touch with my MS nurse. I don’t tend to get in touch with them unless I know it’s something a bit more substantial but am beginning to wonder if maybe I should ring or email them.

I’ve never had a fatigue relapse and wasn’t even sure if you could have one so if anyone’s got any experience of them or any advice that’d be great xx

2

Hello there,

I am having exactly the same issues at the moment. I was off work for 3 weeks with fatigue and hated it. Felt like such a fraud telling boss and colleagues that I was so tired I couldn’t even work from home. (Thankfully boss is brilliant and understood it all even better than I did)

I am back at work now but starting later, finishing earlier and going to bed as soon as I go home. MS nurse and GP both agree this could be classed as a relapse.

Hope you feel better soon.

Rosie

3

I have had fatigue relapses. Sometimes they are a precursor for other things starting, but sometimes it’s just(!) fatigue.

I don’t know if neuros or MS nurses count it as a relapse, but they should if they don’t!

No one knows for sure what causes MS fatigue, but one thing is sure: it is due to demyelination somewhere - either because the brain is using way more energy than usual because it’s having to work around a new lesion(s) that is “clinically silent” and so not causing observable symptoms (common in MS) or because there has been new damage to the circuits in the brain that monitor and manage fatigue.

As far as advice goes, sorry, but I’ve never found anything other than rest and patience to work. Thankfully mine have always gone into remission - leaving me with the normal level of fatigue that modafinil thankfully helps really well.

I hope yours does the same, soon.

Karen x

4

I was diagnosed when my second child was just a baby.

My sisters response to my diagnosis was ’ you will be able to get a scooter and the kids can ride on your knee!!’ ‘you will manage fine!’

I was gob-smacked!

Teresa. x

5

Wrong thread - sorry!!! LOL!

Dont know whats happened!

Teresa.x

6

Morning guys.

Thanks for the advice. I’ve only just got up so bit hard to tell yet what today will bring. My early morning walk with the dogs (although it’s been considerably shorter lately) is usually a good indicator for how the rest of the day will go so fingers crossed!

I know that rest is really the only thing I can do, regardless of whether I speak to my nurse or not but I’m getting so frustrated at the moment. I can cope with an odd day like this as I know I can usually catch up with what I wanted to do later in the week but this is driving me nuts lol!

Thanks again for the kind words and advice xx

7

Absolutly agree with the fatigue, I had a bout that lasted a good 2 weeks.

but i guess a good 4 weeks in total from start to finish.

Rizzo your explantions really help me understand.

I find if i am bad, my day is get up, sit at the computer and check emails with a coffee and a ciggie (sorry i know smoking is bad), 10 minutes in that’s it, i’m done.

There were times i would soldier on, pottering in the kitchen, but the husband (husband to be back then) would tell me off, and tell me just to crash out on the sofa, which i really hated, but also wondered why if i didn’t do as suggested, why i was still so damn tired.

I’ve given up fighting the fatiuge now, once it starts i get the pile of books out and the remote control, Jeremy Kyle on in the background which always sends me off to sleep. So when the fatigue hits, i hit the sofa, husband knows this is best for me to recover quickly, but he also knows we can’t rush my recovery out of it, we have to wait.

People think i have a great life, lieing on the sofa for days, I hate it, as there is nothing i can do, which frustraits me, i want to be normal and do normal things, but we can’t can we, fatugue wins every time,

If i notince the fatigue coming back its sofa time, the sooner i start that, then i hope the sooner it goes away.

so for us that get the dreaded fatigue, always have a stack of books, a comfy duvet, dvd’s, fresh batteries ready for the remotes, it’s almost like my first aid kit for my fatigue weeks.

8

Fatigue relapses? Of course!

Provided they last more than 24 hours, of course (that being one of the criteria for any relapse).

They are the only form of relapse that I get, but when they come then nothing gets done. Stay in bed - yes. Nod off in a reclining chair - yes. Don’t want to do anything - yes. Usually, they don’t last long (3-5 days on average) so I created my own Relapse Rating Scale:

If it only lasts for a day - day and a half, that is trivial.
If it lasts for two+ days, but is remitting by the fourth/fifth day, that is minor.
If it is really bad (like totally fatigued out, and more than five days) that is serious.
A serious relapse means that I am on the phone to the MS Nurse looking for steroids.

In the year that has gone by since I started Copaxone, I have only had two minor ones. (But there were three in the six months before that)

So, paparika, who cares what other people think? Any relapse is still a relapse. We each cope in our own way - and nuts to those who do not have a clue about MS.

Geoff

9

I know that fatigue is my most debilitating symptom but at one point I doubted myself (started to worry it was all in my head) after I was told that fatigue was not a symptom on MS. I go through months of not being able to do anything other than the bare minimum. The trip to school leaves me wanting to sleep, by the time I am half way around the supermarket I am hanging on to the trolley for dear life. Yesterday after over booking myself, a trip to see a good friend for lunch to talk about my wedding, and then the hairdressers after school I was so fatigued I was shaking. Its so unpredictable but it doesn’t seem to be lifting at the minute. In the last 10 months I’ve probably only had about 2 that I’ve felt relatively ok. I’m sure its compounded by a 15 month old that only sleeps through about 3 times a week, a husband to be that is away at work for days on end, wedding planning and a house sale going on. Added to this a disciplinary at work for capability issues and its no wonder I feel like death warmed up. I’m constantly feeling guilty about what I can’t do with my children, they get there own breakfast, pack their own sandwiches wash up after dinner, today I asked my oldest to bring in the washing that my OH had put out before he disappeared off to work for 4 days. I’m dreading tomorrow when I have to go and collect my step daughter an hour away and drive back with 4 over excited children in the car. I’m going to crack I know it.