Chronic fatigue syndrome

DanE2010

Has she had or could have glandular fever?

JR4

Thanks bookworm unfortunately at the moment it does just seem to be bad days and everyday seems to be worse than the last she is also trying to fight it which I think makes it worse I just feel so useless I don't know how to help just giving her plenty of cuddles when she needs them. Hope you don't feel to bad it is a nasty illness that not may people understand. X

JR4

She has not had glandular fever and it was one of the first things the doctor looked for I did think that it could be that when she first became ill.

Torry_Quine

JR4 wrote: »

Thanks bookworm unfortunately at the moment it does just seem to be bad days and everyday seems to be worse than the last she is also trying to fight it which I think makes it worse I just feel so useless I don't know how to help just giving her plenty of cuddles when she needs them. Hope you don't feel to bad it is a nasty illness that not may people understand. X

She must try not to fight i which I know can be harder to do than say.

As you say it's a horrible illness but by supporting her and giving her cuddles that is doing something. :A

claire16c

My friend had around a year or so off work suffering from it. She now has a baby & is fine but I'd say it took about 2 or so years out of her life in terms of disrupting things.

The dr was very clear about not rushing progress as it could have set her back further.

Mojisola

geri1965 wrote: »

Hopefully they will refer you to a specialist who can advise on the appropriate treatment. I was diagnosed with it in my mid 20s (recovered now) but things have probably moved on a lot since then.

There are very few ME specialists in the NHS and a goodly proportion of them still think it's a psychological problem so be wary of who you get referred to.

jakes-mum

I was diagnosed with M.E 4 years ago at the age of 30 after going home from work with what I thought was flu, haven't been back since. I've actually supposedly had it since I was 18. I am actually the 5th member of my family to be diagnosed and it is suspected my nana and great nan were also sufferers.

Can only agree with the other poster, it's all about management of your energy. The way I describe it too people is that 'normal' people are rechargeable batteries, the go to bed and recharge all their energy over night, M.E suffers batteries don't work properly so we don't recharge our energy over night and can wake up in the morning feeling like we haven't slept at all and have no more energy than when we went to bed.

We have say 20 blocks of energy a day (compared to the 1000 blocks non M.E poeple have) and everything we do costs us. Brushing our teeth costs 1 block, brushing our hair is 1 block, emptying the dishwasher is 5 blocks, walking round the block is another 5 blocks etc. obviously each case is different and each M.E sufferer has to find their own level and work their life around what they can do. I personally am disabled as I can only walk 30 - 40 mtrs on a good day, other sufferers can hold down a part time job. Only she knows how each task makes her feel and she may have to let her body build up some reserve before she starts trying to include other activities in her life. One thing I did find was that concentration was as exhausting as trying to do physical activities, reading/crosswords/crafting/form filling all take a lot of energy and can leave you feeling very ill afterwards.

geri1965_2

Mojisola wrote: »

There are very few ME specialists in the NHS and a goodly proportion of them still think it's a psychological problem so be wary of who you get referred to.

Mine was excellent, I've forgotten his name now as it was so long ago, but he really helped in getting the symptoms under control and was very understanding.

OP, I wonder if it would be worth getting Evening Primrose capsules for your daughter as they are an immune system booster. I had huge quantities on prescription although I think you would have to pay for them OTC now.

JR4

Thank you all for your help I will give evening primrose a go thanks jakes-mum it is nice to have the view of a sufferer ( not nice that you have it ) I think school wears her out because she has to concentrate which she has trouble doing I just worry as she is going into yr10 in September and that is when she starts with her GCSE work and I don't think stress helps I do try to tell her you have to take it hour by hour and don't try to fight it but at 13 she wants to conquer the world but I'm not sure she can ( just yet ).

Thank you, you have all been a great help x

Mojisola

JR4 wrote: »

Thank you all for your help I will give evening primrose a go thanks jakes-mum it is nice to have the view of a sufferer ( not nice that you have it ) I think school wears her out because she has to concentrate which she has trouble doing I just worry as she is going into yr10 in September and that is when she starts with her GCSE work and I don't think stress helps

I do try to tell her you have to take it hour by hour and don't try to fight it but at 13 she wants to conquer the world but I'm not sure she can ( just yet ).

You're on the right lines. It will be hard for her to accept but pushing herself now will slow down her recovery. She needs to give her body every chance to mend itself and it can't do that if she constantly overdoes things or keeps getting stressed.

As someone who has been a teacher and a school governor, I'm still going to say that school isn't the be-all and end-all of things. Health is more important! Education can always be picked up later on in life.

I've got two children who went down with ME aged 10/11. One had a very patchy secondary education; the other didn't attend school at all after 10. Both made good use of all the free resources available on the web - as and when they felt well enough - and are very articulate, well-rounded people. I think they are better educated than most of their peers who went through the school system.

Recovery is very varied and it's impossible to predict. One of mine is now doing a PhD. The other is still too ill to live independently.