Chronic fatigue syndrome

dp1

JR4 wrote: »

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.

Hi My daughter is 14 and also about to start year 10 in September. She was diagnosed with CFE about 6 weeks ago, after being ill since last November. From then on she never had a full week at school; she could manage a few days and then would be exhausted. From February onwards she was missing so much school that I went to meet with her year head; DD was put on a reduced timetable - she tried to go in for the more important subjects and missed those such as PE and art. From Easter onwards, she didn't manage to even keep to this timetable, then, after seeing a consultant in May, I was allowed to educate her at home and school sent work home for her, usually by email.
She has good days and bad days, but is trying to manage it....she describes it as feeling completely exhausted, and, as someone else said, her brain feels fuzzy and she can't concentrate. I'm hoping she will be able to go back to school in September; they are going to start her back on a reduced timetable. We have been very lucky as her school has been very understanding, as they have had prior experience of the illness.
Hope you daughter's school is helpful.

Mojisola

dp1 wrote: »

I'm hoping she will be able to go back to school in September; they are going to start her back on a reduced timetable.

In case she isn't well enough, enquire about home tuition - https://www.he-special.org.uk/articles/mehomeed.php

The children in our ME group found that they achieved a great deal more at home with their tutors than when they tried to go into school. The effort taken to get to school, cope with the bustle and noise, moving from class to class and having a range of teachers who didn't all understand their health problems reduced the amount they were able to learn.

Ask the school about using a Trust Card - https://www.tymestrust.org/pdfs/trustcardinfo.pdf - if you do have sick children attending school.

JR4

Thanks dp1 my daughters school have been good at the moment not sure how they will be in September as she was expected to do really well in her exams and I am not sure how she will cope the trouble I am having is with teachers and friends thinking she is just lazy ( not all but about 50% ) still early days but can see it being an uphill struggle.

Thanks Mojisola for the information she really does struggle just moving round school and they are having building work for the next couple of years and she is really sensitive to noise so tutor is something I am going to look into.

Mojisola

Your LEA's Tuition Service has a responsibility to provide at least six hours a week tuition after a child has been unable to access school for fifteen working days. It's a bit of a grey area where the school is sending work home - unless that is working very well, it's often better to go down the tuition route.

JR4

Mojisola does it make a difference if the school she goes to is an academy ( as hers is ) they have sent work home but that is not working as they are sending work that she has not done ( and I am not much help school was never my strong point )

KxMx

I would check out AYME (association of Young People with ME) https://www.ayme.org.uk

Mojisola

JR4 wrote: »

Mojisola does it make a difference if the school she goes to is an academy ( as hers is ) they have sent work home but that is not working as they are sending work that she has not done ( and I am not much help school was never my strong point )

I don't know. Speak to someone at your LEA's tuition service.

Also contact Jane Colby at Tymes Trust if there are problems with the school. She's very supportive.

eskimo26

A few pearls of wisdom that have come from experience but bear in mind everyones cfs is different so its a case of trial and error:

1. Find a multi disciplinary CFS team and get a referral via the nhs. They will help manage the condition by teaching you pacing and grading, relaxation and CBT techniques. The service is over subscribed but they work almost exclusively with CFS and C.O.P.E. patients.

2. Changing my diet helped and i am now eating a lot of low carb vegetables with no stimulants such as sugar and caffeine. This is for another condition but it has helped my cfs.

3. Some CFS patients are hyper sensitive to pharmaceutical drugs [just like they are sensitive to stimulus such as sound etc.] Personally one of my worst years was when they put me on anti-depressants BUT some patients have been helped by this to so again trial and error. Same principle applies to stimulants such as caffeine and sugar, it will put you in a boom and bust cycle that will cause relapses because you may be very sensitive to any stimulants.

4. REDUCE STRESS! I always describe my CFS as an allergy to stress. In a stressful situation i can go from ok to flu intensity muscle pain, fatigue, brain fog, etc. in a matter of minutes. There are supplements i am taking that help with this but again it is subjective.

5. CFS patients suffer from something called post exertional malaise which means they don't recover well after activity so it is important not to overdo it. On the flipside it is also important not to have excessive bed rest because it causes muscle wastage from lack of use which also makes you weaker. A full day with even energy distribution with rest breaks for relaxation is ideal but can be built up to.

I can wholeheartedly recommend this CD made by CFS patients which can be ordered bottom right:

http://www.epsom-sthelier.nhs.uk/our-services/a-to-z-of-services/clinical-services/pathology/immunology/chronic-fatigue-syndrome/

Shout back if there's anything else.

Oh also some people swear by yoga, i did light stretches for a while and while i had 2 weeks of pain as a result it eventually reduced my symptoms by a good 70% or so when i persevered. Do not overdo it and listen to your body! People with CFS are constantly relapsing so they develop a fear of physical exercise, do not push them or you will worsen there stress.

http://fionaagombar.co.uk/

http://www.amazon.co.uk/Beat-Fatigue-Yoga-Step---step/dp/1901447456/ref=sr_1_1?s=books&ie=UTF8&qid=1373765226&sr=1-1

I have also tried the Perrin technique just go to Amazon and look at the book reviews and if your interested i can tell you more.

geri1965_2

Another thing that helped me was an aromatherapy massage - really, really relaxing. I also used oils in the bath.

scooby088

My OH was diagnosed with ME but she changed gp's and went through all the tests and it came back as lupus, plus she has fibromyalgia too.

Best thing OP is to keep pushing your GP to refer to a consultant. we can't give medical advice or diagnosis on these forums.