PACING - Any success??

I'm suspicious of anything that involves telling people how to live their lives on the basis of them having been diagnosed with CFS. There are a lot of incentives for people in medicine to act like they're better informed than they are, and this can make people's live more difficult. I've found that all these different regimented things just make my life worse.

"The way they were talking about it suggested that by taking scheduled breaks you can have a more active life, and return to a normal life (that's the dream!)."

If that's what they're implying then they should really have some evidence that this is true - I'm pretty sure that they don't. It could be that this sort of thing will be helpful for you, but I'd be pretty laid back about it and only stick with it if you are finding it really makes your life more enjoyable.

Yes pacing does work but you have to remember to do it !!! I find if I have a bit of energy I just go for it & try & finishe something I've started then I push myself over & can't do anything for days !!! The secret is stop at regular intervals & keep your pain / energy levels on a even keel !!!! 

Its easier to say than do but it does work good luck !!! Xx

 

That is a dream, if only, who are these people?

I have to rest for three hours every afternoon and go to bed early. I am of course not sleeping all that time, maybe 5 to 20 mins in an afternoon and then go to sleep at 10.30 at night.

If I have busy day one day I try not to go out the next day. The worst time is on holiday no rest, no pacing, so take days to get over it. Or weekends away a nightmare, so exhuasting. people do not understand this and how hard it is to just keep going. I wish you luck with your pacing.

I went to sessions about pacing, it was very badly run. They said just don't rest carry on as normal don't wear sunglasse in bright light etc. etc. I tried this for a year and completely crashed. Really some people just do not know what they are tallking about.

Hi Allison I'm not sure who you refere to when you said some people don't know what they are talking about ??? I know exactly what it feels like to live with & suffer from fibromyalgia & cfs for 14 yrs I've struggled with day to day living & at this very moment   I hurt like hell after resting most of today I now burn from head to toe every muscle screaming !!!!  I've spent time at chronic pain clinics & they can help at the very least it makes you feel your not alone that there are others that understand ! But the first thing they tell you is there is not a miracle pill that will make you better that you will have to learn to live with your illness !!! 

I enjoyed meeting people like me that truly understand 

I hope one day there will be a way to get better & stay better !!! More research is needed & more understanding take care x

Hi Ali sorry you won't be online for a while because I know us sufferes relie on our laptops for everything , shopping talking to friends & seeing the outside world !!!!!!!!

hope your up & running soon ! 

I wish you could also find some help in getting some relief in you awfull symptoms !

the only thing I can say is keep trying ! I was relieved when a dr told me years ago that I wouldn't die from my illness but now I realise what he was really telling me 

I will be in agony for the rest of my life !!!!!  

I wish you all the very best take care dawn xx

Hi Emma, I am currently seeing an NHS ME/CFS Occupational Thearopist on a one-to-one basis.  He tells me they are guided by the NICE guidelines.  Under those guidelines pacing is recommended for ME/CFS sufferers.  He is therefore following NHS thoughts of how to cope/feel better.  He doesn't say it can give me a better life but that I will achieve things and feel better than I do at the moment.  He advised me to rest 5mins per hour or 10mins per 2 hours.  Also take a 30min break during the day to (not sleeping).  He recommended mediation or listening to calming music.  Not to read or watch TV during the breaks as that will be using my brain energy.  I told him that I found it hard to rest. My brain always drifts onto other things - I can't empty my mind.  I explained that I end everyday without exception feeling yuck (I do have different levels of yuck though).  He said it was totally up to me but wouldn't it be worth giving it a go to see if the yuck levels could be decressed?  Do I want to carry on for the next number of years feeling just as yuck?

Admittedly I'm still not quite achieving the 5/10 mins.  However, I am trying to remember to take more breaks.  At the end of the day they are just trying to help me. My current way isn't working so maybe I should try another?

Hi all. I think like most things, pacing works for some and not others. Always try new ways as you may find even a small relief. And if not you have at least tried. I wish you all some kind of relief 😀

Hi Emma,

I wish you every luck with pacing. I have to say that I haven't had the best luck with it myself. I stuck with it for just over a year and ended up incredibly ill. Having said that I know several people who have said that it worked for them.

The only thing I can say is to try it, but don't be too disheartened if it doesn't work for you. Equally please don't push youself to do more than you feel you are capable of.

I wish you all the best and hope that you have found something that works for you.