Cfs

Isis_Black

Yeah i don't seem to be having flair ups but just a constant pains in different places
When I go for a walk it's not long till my legs really hurt and I get the shakes all over
Both time I'm home I'm shattered.
It's awful as last year I felt ok and wa able to do the race for life, though I was in pain for the rest of the week.

I can't concentrate hence my thinking of leaving uni as right now I can't concentrate or remember enough to sit my exams in September, will have 8!!! 3 resits from January and 5 first sits that I didn't do last month!

I do get extra time in exams in a smaller room but it's no help when there's nothing in my head lol or I'm just in pain from the seat being so uncomfortable :-(

I just can't win right now lol

Well I go on holiday soon for a very much needed break with th family so I think I will get on with getting referrals done and such like as soon as we're back, will also give me a chance to see how I am while away

Torry_Quine

Anubis wrote: »

To be fair, apart from a pain clinic and a bit of physio thrown in, there is little they can do. I was referred to the pain clinic years ago, who gave up on me "nothing we can do, you are too limited in mobility for exercises" followed by the same attitude at physio.

Until they find out more about things, there is little that can be done which is why it is impirtant you pace yourself etc to do what you can, for you.

True, but as you say we are just left to our own devices.

Isis_Black

Torry_Quine wrote: »

True, but as you say we are just left to our own devices.

That's so true as I've had nothing about being referred to see anyone lee!

Only the possibility of being sent to the gym to attend specialist sessions, at a reduced cost to me though!! How the f*** am I going o use the gym when I can't even really cope to even walk long distance??!!!
Oh yeah and the possible idea of CBT!! Errrr why in the hell would that work?? The pains not in my head, a figment of my imagination. Though what's a betting many in the medical profession think that!!

over_flo

CBT does help you to cope - in no way is it offered because the symptoms are thought to be 'all in your head'.
I would urge you to give it a go if it's offered to you and keep an open mind about it.

Mojisola

over_flo wrote: »

CBT does help you to cope - in no way is it offered because the symptoms are thought to be 'all in your head'.
I would urge you to give it a go if it's offered to you and keep an open mind about it.

I would also suggest you go and see what it's like. It all depends on the person running it and their attitude to ME. We've had group members made a lot worse by going along with the therapist's suggestions so you have to be prepared to stand your ground, say if something won't work for you and be ready to be labelled an unco-operative patient!

Isis_Black

I'm really not sure how CBT would work, it's one thing we covered quite a bit in my studies
Its supposed to be all about changing how your mind work and feels towards something
But if your problems are physical I'm really not sure how it could work.

I'd be up for the gym if I felt I could hack it physically but not right now :-s

LadyMorticia

Isis_Black wrote: »

I'm really not sure how CBT would work, it's one thing we covered quite a bit in my studies
Its supposed to be all about changing how your mind work and feels towards something
But if your problems are physical I'm really not sure how it could work.

I'd be up for the gym if I felt I could hack it physically but not right now :-s

It's not just about that. It's about learning coping mechanisms too.

I've had CBT twice, albeit not for the M.E, and it was more than just changing how my mind works. It was about finding coping mechanisms more than anything.

bambammy

I found my pain and symptoms improved when I followed Dr.Myhills advice. Elimination diets, I have stopped eating bread and dairy also, and that helped me. Dr.Myhill also has information on a exercise workout on her website to. I found the vitamins, fish oils etc really helped.




If you understand what's happening in your body, it will be easier to give it the time out it needs - http://drmyhill.co.uk/wiki/CFS_-_The_Central_Cause:_Mitochondrial_Failure

You can also download Dr Myhill's book for free - http://drmyhill.co.uk/wiki/CFS_-_CFS_Book_published_by_Dr_Sarah_Myhill.

Yes, I know she calls it CFS and not ME but she is a very pragmatic person - if the NHS is giving people a diagnosis of CFS, that's what they'll search the web for. Her basic recommendations will help whether you have ME, CFS, sheep-dip flu, Lymes disease, glandular fever, etc.
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Mojisola

LadyMorticia wrote: »

It's not just about that. It's about learning coping mechanisms too.

From reports back to our group, where it has been of benefit it has helped people who were still fighting the illness and mourning the loss of their previous life. You need to accept that you are ill before you can start to manage the symptoms. This doesn't just apply to ME but any other chronic health problem.

It also caused serious relapses in some people whose therapists were working with the model that ME is down to behavioural and cognitive factors. They were told that their symptoms were down to "wrong thinking", that they weren't really physically ill and that their symptoms only persisted because they were frightened of getting well.

Torry_Quine

Mojisola wrote: »

From reports back to our group, where it has been of benefit it has helped people who were still fighting the illness and mourning the loss of their previous life. You need to accept that you are ill before you can start to manage the symptoms. This doesn't just apply to ME but any other chronic health problem.

It also caused serious relapses in some people whose therapists were working with the model that ME is down to behavioural and cognitive factors. They were told that their symptoms were down to "wrong thinking", that they weren't really physically ill and that their symptoms only persisted because they were frightened of getting well.

Interesting. Not sure what I think of it as have only had negative things about it but if offerred I think I would at least try it.

Totally agree that accepting you are ill and limited in what you can do is an important step. Having ME is like a bereavment and you go through the same steps as for any bereavement.