M.E/Chronic Fatigue Syndrome

[Ezzie.]

Hey guys, does anyone else here have m.e/chronic fatigue syndrome?
Have you found anything that has helped you even just a slight bit?
I've had m.e for nearly four years now, and didn't really know if anyone else has it?
I'm on an m.e charity website/forum also for those with m.e who did not know about it:
www.ayme.org.uk (http://www.ayme.org.uk)
For those wanting to know what m.e/cfs is:


M.E/CFS means a varied amount of things:
The main part of m.e/cfs though is utter exhaustion 24/7: ie: Fatigue
Other parts include:
Cognitive impairment: low concentration, "brain fog": ie, unable to think clearly.
Pain: anywhere in the body, but particularily headaches/joint pains.

[Kalk]

Hey guys, does anyone else here have m.e/chronic fatigue syndrome?
Have you found anything that has helped you even just a slight bit?
I've had m.e for nearly four years now, and didn't really know if anyone else has it?
I'm on an m.e charity website/forum also for those with m.e who did not know about it:
www.ayme.org.uk (http://www.ayme.org.uk)
For those wanting to know what m.e/cfs is:



M.E/CFS means a varied amount of things:
The main part of m.e/cfs though is utter exhaustion 24/7: ie: Fatigue
Other parts include:
Cognitive impairment: low concentration, "brain fog": ie, unable to think clearly.
Pain: anywhere in the body, but particularily headaches/joint pains.

Well, I know somebody who has that. He's my maths teacher. Been off since September. His is really serious. He can't get out of bed without being in pain. So we've had substitutes most of the time. -.-

[Ezzie.]

yeah..it's a really sucky illness =/

not many replies :o

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[5,5]

Never heard of it til just now, sounds like it sucks huge balls though

[le harry]

I've met people through school who have it - like talked about it at assembly & stuff. Sounds proper nasty :(

[Kotu]

Hi Ezzie :)

I've had CFS for several years now. I can trace it back to about six years ago, but I wasn't diagnosed properly until July 2006 - the process of getting a diagnosis was very frustrating for me. I was constantly dismissed and told nothing was wrong or that I should try eating well and resting more... as if I wasn't resting enough already? lol. And the shocker - being told to exercise more! As much as I used to love sports before getting ill, and as much as I'd love to play tennis, swim and do gymnastics again, there is no way I'd survive now without having to sleep solid for the next month. :P

Sometimes just the diagnosis and gaining a better understanding of the condition is enough to make you feel more at ease with the reality of having to live with it.

I don't really have any advice for you. Six years on I'm still struggling and finding the best way to deal with this. It seems sometimes when you find something that works for you, something else comes along and bites you in the behind and erases all the work you've done to get as far as you did. Sometimes it doesn't even seem worth trying anything again. I'm sure you understand that feeling.

But, you need to know you aren't alone in this. There are thousands of people like us and the majority do get better eventually and I've met a few.

A teacher of mine once told me when you have more bad days than good, it's worth making the most of the good days when they come around because you never know when they'll be over. I try to live by that little piece of advice now. Make the most of the good days (they do exist!) and use the bad ones to take care of yourself, rest and be a little more indulgent.

Hope you're feeling well at the moment. Take care!

Edit - www.foggyfriends.org is another useful website and forum to check out.

If you use Habbo there's also a group owned by Nonsense? about M.E CFS: http://www.habbo.co.uk/groups/12161/id

[Ezzie.]

Hey kotu, ah six years is quite alot! =[ I'm nearing my fourth year "anniversary" in a few months ¬_¬ but ah well..

and yeah about the whole things knocking you back, i was 95% throughout the summer.. best i've felt in 4 years.. it was fantastic, then i had to have an operation on my nose because it was bodging up my breathing, and the doctor's think the anasthetic caused me to relapse.. epic suckyness =/

oo and i'm also on foggyfriends, my name's ezzie on there and i don't really go on habbo anymore.. haven't for about 5 years! :p

[Kotu]

I'm pretty well at the moment. I think somewhere between 70-80% probably. :D

My spring and summer was a nightmare, so I think it's only fair I get a bit of a break lol. I managed to go to lunch a few weeks ago and get out of the house for a whole day. Hopefully this streak of healthiness lasts because I'm going to the Spice Girls reunion on Saturday... I'll probably set myself back and end up cooped up in bed til next year, but it'll be worth it lol. ;)

I hope you feel a little better soon.

[lew!]

My mum has it. Shes going sick next year because its getting so bad.
She needs to take these reallllllllly strong paracetimols that are like tranquilizers to most people that she takes just go get rid of her headache, then shes really tired and once she comes back from work [hairdresser] she just goes to bed and gets up at 7 and goes to bed at 10 again..