Are there any Mums with teen CFS sufferers who can help please

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Hi (I am new, please forgive my ignorance's)

My 15 yr old dd2 has been diagnosed with CFS (nov 2012). It was only mild, at about 80% functional ability, until last Wed. Now she can do very little, she is in pain, v tired, v emotional etc. I don't know what to do! I work 3 days, Her sister can look after her for 2 of those, what do I say to my boss? School so far are being understanding, but her GCSE's are looming and she has so many plans for a farming life, with a conditional college placement, so she has to pass. I am probably panicking a bit, but feel a bit helpless. Any info will be gratefully received :)

Is it possible that she's picked up a virus?? hence why she has suddenly deteriorated, once diagnosed its easy to pin everything on CFS, but you still do get other illness, often more so as it seems to affect immunity, so it could be a flu virus that will run its course if she rests properly & treats the symptoms. Or maybe as in my case now, an actual infection - I made the mistake of blaming it on the usual, but now realise I need antibiotics for a sinus infection - I find infections up my pain & exhaustion levels a lot.

As she's 15 if you organise properly can she not look after herself for those 2 days? Making sure she has plenty of drinks & snacks by her bed, is there neighbours who could pop in etc. - she might even prefer the peace & calm of being alone & not having to talk etc

There's quite a bit that can be done to help too, Epsom salts gets magnesium into your system & helps the body cope with stress & pain more efficiently & sleep better too, 2 cups in a hot bath & soak for 20 min or so, if she can't handle a bath, a foot bath will do - aromatherapy helps - add lavender & chamomile to bath or even pillow to help relaxation & sleep, clary sage can help ease pain & lift her mood, though this is not an oil for regular, or over use as it can have side effects, it is still well worth trying if things are bad - taking Spirulina is great for helping energy & immunity, it contains a LOT of good stuff, more iron than liver for example, but easily digested & B12 & much more - I can't take it anymore due to high pottassium, but I really do notice the difference - it got my DD back to School when she couldn't cope too. Also if she can cope with getting out at all, I found that sauna, or manual lymphatic drainage massage can help a lot - you might even be able to find a visiting therapist

I'm being a bit vague over my our diagnosis, I was originally diagnosed with Fibromyalgia & CFS, DD was thought to have Juvenile CFS too, but a few years down the line my DD has just been diagnosed with Joint Hypermobility Syndrome, & they now think that's my true diagnosis too - symptoms are the same as FM, CfS etc but treatment is a bit different, though pacing etc us the same.

So I've been dealing with CFS for 10 years, learnt that the trick above help us, though now finding its actually a different diagnosis, IYSWIM

photo - hope your dd is feeling a bit better now. Any idea if its just a normal poorliness thing on top of everything else? My dd (7) has suspected CFS, but mild - if it is that at all, still waiting for an actual diagnosis.

rockin - I will try the epsom salts thing, my youngest is having bad growing pains at the moment (& is hypermobile) so will try it for both. Can you just buy it in the chemist?

Hi pink, yes, but make sure you ask for the bath grade one, it comes in big tubs 5kilo i think, or bags, - I've usually found it in the smaller old fashioned independent chemist, rather than the big chains like Boots, they just have the small tubs for stomach upset.

If your DD is hypermobile, then that is very likely the cause of her symptoms, not CFS, look up the NHS web page for Joint Hypermobility Syndrome, - I was reading something today that suggested a lot of CFS diagnosis is actually JHMS/ EDS, but Doctors don't know about it, so misdiagnose - our own GP had no idea it can be a recognised medical condition, often with debilitating symptoms, including CFS & bad growing pains & she is hypermobile too - sorry I can't link ATM

rockin - should have said it's my eldest with suspected cfs, she isn't hypermobile as far as I am aware, the youngest has growing pains. I have read about JHMS and wondered about that, she has been seen by 2 Paeds & both said its just growing pains but to be honest one seemed completely clueless!

@Pink I found the same problem with both Paed & our GP - I had to diagnose myself & then argue for a rheumatology referral - it was a friend who has JHMS sending me an awareness link that finally joined the dots on my DDs health problems - including "growing pains" & IBS - the very eminent paed rheumatologist diagnosed her instantly with high Beighton score & a lot of affected joints -

DDs physio explained recently that the level of symptoms isn't linked to how hypermobile they are, some are very very bendy & have few symptoms, some not very bendy & have a lot of problems - my own DD scored highly on the Beighton score, yet I didn't think she was that bendy either - but I'm realising now that's a lot to do with it being normal for me, turns out I was hypermobile too, but didn't realise, as I'm no contortionist, but I would have scored highly too - if you've not seen it, look up Beighton Score Test & see how it fits your DD