i am getting worse due to raising activity level-

[bigmama2]

hey everyone-
long story short- i've had cfs many many years-

it was a gradual onset- getting worse each year- mild cfs- turned to moderate

then was very sick for a few years (sleeping/or lying in bed sick 15- 18 hrs a day), moderate/severe cfs

then in the last few years i have improved A LOT- back to mild cfs

because i was doing much better I thought i could handle more "activity" in my life. so the past few weeks i have been doing more things- some socializing (lunch with girlfriends,etc), taking a dance class once a week, getting out and about the town a bit -- things like that that are fun and enjoyable and should not make me sicker. well, i hate to report that it is affecting me, and i am feeling worse and worse. symptoms that were "under control" are returning- poor sleep, sore throat, that gross exhausted feeling (like a battery that is almost dead), body achey (not fibro ache- more of a cfs tired ache), the blisters on my fingers that mean my immune system is not working right, that overstimulation feeling where you cant stand noise like the tv and you need to be in a quiet dark room, etc.

this is classic PEM (post exertional malaise). and it sucks, as we all know. what a cruel illness that punishes you for just doing normal activities. i thought i was healthy enough for part time work, now i am reconsidering that.

just had to post this and vent a bit.

bigmama2

 

[leela]

Sorry bigmama. This whole thing is just one crappy shell game we always have to play with our energy.
Hope you bounce back quickly, and can still fit in some fun as your energy envelope grows

 

[Esther12]

You have my sympathies. I've had some improvements over the last couple of years, but it's really difficult to know how much I can do. It's confusing stuff, especially as we have so little understanding of 'CFS' as a condition.

 

[mellster]

Sorry PEM is a tricky beast. I found it helpful to exercise by myself and focus on 1-1 activities rather than big social groups to preserve 'nervous system' energy. Also after being on it for 1 month LDN has increased my PEM threshold a bit.

 

[RustyJ]

BM2. Hang in there. ME/CFS is a rollercoaster ride. Everytime I have gone down, I come back up. Keep trying things.

 

[bigmama2]

hi all- thanks for the replies.
the up and down nature of cfs is hard to deal with. but this is still way better that when i was really sick almost all the time.
thanks for the tip about 1 on 1 activities instead of in a group. it's so true (for me) that it takes much less energy to do something with one person than in a group. i dont think i can continue this dance class, even though i LOVE it. i can just do dancing in the living room and stop when it's too much. there are lots of good workout or dance instruction DVDs. just bought a few. long ago before cfs dance was a passion of mine- i still remember when i had to stop dancing due to cfs 18 years ago! glad i can do a bit now. wish it could be more.

just fyi- you can see any kind of dance that exists on youtube. lot of cool stuff to see.

take care
bigmama2

 

[Hope123]

Hi, sorry to hear that you're dealing with the PEM. Right before I got sick, I was taking a salsa class and noticed that right after each class, I was so tired I needed to take nap. At first, I thought it was just the heat and dehydration because it was late summer but it was quite odd from prior summers when I had been active and running despite the heat.

What I've found is that PEM can creep up and accumulate for me and then result in a crash. That is, I can increase my activity very slowly without crashes and even sustain it for a few weeks but then I start to get the sore throats, increased flu-like episodes, insomnia, etc. I keep trying to do something to keep from getting too deconditioned but it is tough.

Here's a great video of Indian Kathak dancing; did you know flamenco originated from Kathak?

http://www.youtube.com/watch?v=PM4o0GrheFI

 

[Esther12]

One other thing - remember to take time to appreciate being able to do a bit more. Sometimes it's easy to find the difficulties that come with not knowing how much more I can do distract me from being grateful for the slight expansion in energy levels that have come.

 

[heapsreal]

PEM, 'crashing' etc i find you have to treat like a hangover and try and sleep it off. its a bugger but just have to try and ride it out. a valium sandwich always helps.

cheers!!!

 

[RustyJ]

A faceful of cold and flu tabs helps me ride it out. Only they don't have PSEUDOEPHEDRINE any more so aren't as good.

 

[sandralee]

A faceful of cold and flu tabs helps me ride it out. Only they don't have PSEUDOEPHEDRINE any more so aren't as good.

Hi Rusty,

Unless things have changed in the past couple of months, you can still get Sudafed containing pseudoephedrine in Australia. It is kept under the counter and you have to ask specifically for it.

They do keep records on how often you buy it however, to control any misuse of the drug.

Kind regards,

Sandra

 

[RustyJ]

Hi Rusty,

Unless things have changed in the past couple of months, you can still get Sudafed containing pseudoephedrine in Australia. It is kept under the counter and you have to ask specifically for it.

They do keep records on how often you buy it however, to control any misuse of the drug.

Kind regards,

Sandra

Hi Sandra, how interesting!!! Would it work the same way as the cold and flu tabs on crashes? I mean, do you use it?

 

[heapsreal]

careful with psuedoephedrine as its a stimulant and can wreck sleep plus trash your adrenals and give that false energy, might help for occassional use when u need to do something important. But in the end its whipping a dead horse and could make u crash hard.

cheers!!!

 

[RustyJ]

careful with psuedoephedrine as its a stimulant and can wreck sleep plus trash your adrenals and give that false energy, might help for occassional use when u need to do something important. But in the end its whipping a dead horse and could make u crash hard.

cheers!!!

Hi Heaps, I understand what you are saying, but oddly enough I took them frequently with my sleeping tabs (still do, post pe, if I have sinus) and I got off to sleep very easily. Even during the day, when I took them without sleeping tabs, they put me off to sleep. I always figured this was more to do with reducing inflammation.

 

[heapsreal]

may have had an antihistamine with it if it was a cold and flu formula, which could make u drowsy. If people have pots/OI or other low blood pressure problems it could help with that sort of problems, thats just psuedoephedrine though.

cheers!!!

 

[justy]

Hi Bigmama2, so sorry to hear you are going through this right now. I have been in a very similar place to you and am constantly on an up and down rollercoaster. Still i keep telling myself that at least its better than when i was sick all the time and it never fluctuated.
I keep getting the most awful PEM from raising my day to day activities. If im on an up i can sustain more activity for about 2 weeks before crashing again, this then normally takes one week of very ill, one week of recovering back to where i was and then 1-2 more weeks of feeling a bit better.
I find it so frustrating though when my feeling better means i can do a bit more housework or maybe go for a car ride twice in a week.
My M.E doctor told me off for doing this and said i need to get more control and rest more all the time, but its so hard, especially as i have kids and a husband who all want me to get better and be able to do more. Plus i get so fed up and bored stuck on the sofa at home all day.

Sorry i meant to post to offer you support but have gone on a rant of my own.

Take care, Justyx

 

[sandralee]

Hi Sandra, how interesting!!! Would it work the same way as the cold and flu tabs on crashes? I mean, do you use it?

Hi Rusty,

I dont use it as a cold and flu tablet, but only occasionally to keep me vertical. It improves my cognitive function dramatically as well.

Im housebound and often bedbound, and find it amazing if I only use it sparingly. Im aware that taking pseudoephedrine is like continuing to walk on a broken leg, but sometimes its the only thing that will get me to necessary appointments.

All the best,

Sandra

 

[RustyJ]

Thanks Sandra. I'm off to the chemist.

 

[sandralee]

careful with psuedoephedrine as its a stimulant and can wreck sleep plus trash your adrenals and give that false energy, might help for occassional use when u need to do something important. But in the end its whipping a dead horse and could make u crash hard.

cheers!!!

Hi Heaps,

completely agree. That's why I would never recommend it as a treatment. Nevertheless, I find it invaluable when used judiciously.

All the best,

Sandra

 

[heapsreal]

we all need a boost sometimes, i need one to mow the lawn, mmm