Struggling to bounce back from a severe relapse

All your fibromyalgia experiences, questions and answers.

Moderators: perseus, *Lisa*, FluppyPuffy

Struggling to bounce back from a severe relapse

Postby MichelleJ » Sat Jun 22, 2013 7:33 pm

As the title says, I went into a really bad relapse of both the fibro and m.e in early may following my sons birthday party. It was the worst one I've had. I came out of it slowly and certainly from the fibro point of view felt I was making decent progress having come out of my wheelchair indoors and managed to increase my swimming again from just getting in the water to now being back to 10 lengths which I've built over the past few weeks being guided by my body as to how much to do.

But my problem is I seem to be paying a really high price for everything I do, except my swimming which I tolerate. I seem to end up in bed for at least a day sometimes more for doing things. Last weekend I drove half hr to drop the hubby and lil man to the cinema and then I went my dads by it to rest while they watched their film. Then I drove home later. This resulted in 2 days stuck in bed. I have hand controls now to make It easier but still was in agony for 2 days following.

Then yesterday I went to see a friend who lives 10 mins away. We just sat and chatted while the kids played. Was there just over 2 hrs. She has the same as me. When I got home we had tea and I came straight to bed as was tired. But today my m.e has flared again. In pain but not as bad as some days but my throat hurts, my glands are swollen and I'm drained. Basically like i have bad flu. Have slept half the day but stuck in bed as no energy to do anything.

I'm trying to do it right, pacing, resting, introducing things gradually but the pay back is so high every time. I had built up to these activities not just done them. I just don't know what to do to get past this. It's so frustrating. I do feel like this is the Cfs/m.e causing issues not the fibro. Any ideas how I go forward from here?
Dx with fibromyalgia m.e/Cfs and asthma
MichelleJ
UKFM Member
 
Posts: 350
Joined: Sun Mar 27, 2011 4:27 pm

Re: Struggling to bounce back from a severe relapse

Postby FluppyPuffy » Sat Jun 22, 2013 9:42 pm

This was something I covered when during some sessions about CFS. If recovery after a flare/relapse takes longer/is harder to achieve than previous times, you may need to reassess your baseline and the rate at which you are introducing and increasing the amounts of things you do.

I'd been having a tough time with my :yikes: :yikes: :alien: :alien: teenager which took its inevitable toll on me, but when I tried to get back to where I was pre :yikes: :yikes: :alien: :alien: teenager~aggro it was taking more and more out of me, to the point where even sitting and breathing was sapping me of life force that I didn't have :facepalm: :facepalm: :facepalm:

So I went right back to basics again to see how long I could do various things before it became too uncomfortable in all ways for me to carry on. What I found was that the time I was able to do anything had reduced by about a third, yet when I tried to reintroduce and/or increase things that I was doing, I was still working at my old rate. By increasing the amount of time I was giving myself to reach the points I was wanting to get to by a similar amount of time that my baseline had altered by, it helped make things that touch more manageable and achievable.
As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.

If your dog doesn't like someone, then you probably shouldn't either
User avatar
FluppyPuffy
SITE ADMIN
 
Posts: 12719
Joined: Mon Jun 08, 2009 11:25 am
Location: Living Life On The Edge.......Of The Norty Step!!!

Re: Struggling to bounce back from a severe relapse

Postby MichelleJ » Mon Jun 24, 2013 3:00 pm

Thanks fluppy, I think back to basics is gonna be the answer. I think your prob right in that my baseline has altered. I swam today again and though it was difficult I managed 10 lengths. This is well below what it had been but it was my original starting point. So the fact I managed that while feeling very achy and sore and tired says that this should remain my starting level. My carer has advised me to stick with 10 lengths for the time being even on days I feel I could do more until I'm more stable. I tried to explain what u had said to her this morning and she seems to have got a grasp on it so wen she starts more hrs in 2 weeks time she's gonna help me work it all out and get a manageable routine going. Till then I'm gonna pace and try not to overdo it.
Dx with fibromyalgia m.e/Cfs and asthma
MichelleJ
UKFM Member
 
Posts: 350
Joined: Sun Mar 27, 2011 4:27 pm

Re: Struggling to bounce back from a severe relapse

Postby FluppyPuffy » Mon Jun 24, 2013 8:21 pm

:goodluck2: :goodluck2: :goodluck2: :goodluck2: :goodluck2: :goodluck2: Michelle. You may find it a little :( :( :( at first if things have changed again for you :grouphug: :grouphug: If you can turn your focus to working with this new level of things tho, you should find yourself getting back to feeling something like you were before this relapse :fingerscrossed: :fingerscrossed: :fingerscrossed: :fingerscrossed:
As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.

If your dog doesn't like someone, then you probably shouldn't either
User avatar
FluppyPuffy
SITE ADMIN
 
Posts: 12719
Joined: Mon Jun 08, 2009 11:25 am
Location: Living Life On The Edge.......Of The Norty Step!!!

Re: Struggling to bounce back from a severe relapse

Postby LouLou » Tue Jun 25, 2013 10:08 am

Hi Michelle

I don't have anything like ME or CFS ontop of my FM so I don't know how much that can affect someone aswell as the FM. I do know that when I have pushed myself too far - even just a tiny bit it can send me back a few steps, almost like i take 2 steps forward 4 steps back. I also find after a flare or a bad day or two my whole body feels really weak like I have nothing in me at all. I also find the fatigue goes up a few notches too.

It's taken me nearly 2 years to get to a routine that works for me which incorporates gentle exercise daily and some stretches and I've been able to go to work with only having the odd day off sick. But if I so much as deviate a tiny bit from this routine it can set me back sometimes so far that I have to rest for a whole week before I can start again.

It is hard though to find that happy medium and it can really make you feel quote low when you see what you can do, then have to take a few steps back after a flare.

Just build up really slowly Michelle, take your time in finding your way back. Also, even if I'm just sitting chatting with friends it can really zap me of energy too so you're not alone there.
What doesn't kill you will only make you stronger ;-)
User avatar
LouLou
UKFM Regular
 
Posts: 1009
Joined: Thu Oct 06, 2011 10:40 am


Return to Living with Fibromyalgia

Who is online

Users browsing this forum: Google Adsense [Bot] and 14 guests