Chronic fatigue syndrome

JR4

Hi don't know if anyone can help.

I posted on her a few weeks back that the doctors thought my daughter had labyrinthitis ( got loads of help thank you ) she has been seen by the ENT clinic and it is not that. We are back at the hospital on the 23rd July not sure what they are going to say but it has been suggested it might be CFS ( chronic fatigue syndrome ) I would just like other people's experiences.


A bit of background info symtoms started on the 7th may


Dizziness
Headaches
Sensitive to noise
Tired ( all the time )
Aching
Trouble sleeping
Loss of appetite


My daughter is 13 ( nearly 14) and has not manage more than a couple of afternoons at school since this started.


Thank you for taking the time to read this and any help is greatly appreciated.

geoffky

You will not many answers because of the good rules on medical advice that operate here.

geri1965_2

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.

JR4

I don't want medical advise as I have said we are seeing the doctor soon just people's experiences and any advise on how I can help my daughter cope.

Torry_Quine

Here is a link that may be of help.

http://www.actionforme.org.uk/children-and-young-people

lindsaygalaxy

I developed it when I was 16/17, at a time when no one really believed in it and it took forever to get a diagnosed it. I only started started improving when I fell pregnant with my DD. I still don't feel completely 'normal'12 years later, but I just try to hide it to pretend its all fully better.

JR4

What a great website Torry Quine thank you that is very helpful for both me and my daughter thanks again. X

JR4

My daughter always tries to say she is ok but you can tell she is not some days she just cries ( I think the why me is kicking in ) I never knew this could be so devestating she has gone from a child who loved school going out with friends and just being a teenager to a child who can just about shower in the morning.

daisiegg

lindsaygalaxy wrote: »

I developed it when I was 16/17, at a time when no one really believed in it and it took forever to get a diagnosed it.

I'm afraid a lot of people still don't... my sister is a medical student and they are taught very little about it but when they are, it is pretty much dismissed as being psychological.

bookworm_nat123

Hey,
I have got ME (CFS) and have had it for almost 4 years now :O. Unfortunately it is a horrible condition and there are no other ways around that but somethings I have learnt and that are useful to know in advance (although so much harder to put in practice!).Try not to overdo it on a good day as the bad days will be so much worse. When I was learning, it was one of the biggest learning curves as somedays I would wake up and feel alright so would do all the things I wanted in one go but then the payback was so much more worse. and the other thing is making sure your daughter knows it okay to completely flake - so making sure she knows its okay if she cant manage a shower that day or if all she wants to do is sleep. PM if you want anyother advice. Hope things feel better for your daughter xx

Mojisola

Dr Myhill has her book free as a download -

https://www.drmyhill.co.uk/wiki/CFS_-_CFS_Book_published_by_Dr_Sarah_Myhill