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Chronic fatigue syndrome (CFS) and is it worth the physical toil of travelling for a week in the sun?

(14 Posts)
chicaguapa Mon 07-Mar-16 21:57:18

DD(14) is awaiting diagnosis for CFS/ME. I have found the previous support threads for CFS/ ME really helpful and have learnt so much reading the linked websites and speaking to AYME.

She's been ill for 8 weeks, missed loads of school and is currently trying to find her baseline. We're trying going into school for 2 periods a day this week to see if she can sustain this over 5 days. Last week she only managed 3 days in a row but that was because she had started off with 4 periods, reduced down to 2 for 2 days and then was off for a whole day. Boom and bust!

On the days she's not at school we have encouraged her to get up and dressed which she does. She couldn't do this 8 weeks ago which I think is improvement.

Our dilemma at the moment is that we have a week's holiday booked to the south of Spain over Easter (25/3). We can't decide whether to still go as we are not sure if the benefits of being in the sun and warmth will outweigh the physical toil of actually getting there.

She is presenting with the headache form of it, rather than muscular aches. The information I've read on the benefits of sun for CFS suffers seems to focus on alieviating muscular pain. She is also not the type of person who seems energised from being in the sun and tends to choose the darkest corner or closes the shutters during the day when on holiday.

AYME suggested that we requested assistance for DD at the airports to minimise the physical activity but there will of course be a lot of other stimulation which will be tiring for her. They have also said that travelling may set her back in her recovery. Obviously this is a concern and a good reason to cancel.

The other slight complication or consideration is that DS(11) has been looking forward to this holiday for a long time. He understands that we might have to cancel because DD is ill and we wouldn't jeopardise DD's health to keep DS happy. But it's hard to juggle both their needs.

I wondered if anyone had any advice please?

Quietlygoingmad67 Thu 10-Mar-16 02:36:09

GO! Take sunglasses for her to wear indoors and earmuffs(headphones) to wear to cancel out some of the noise! We have been battling this illness with our dd2 (14) for 18 months and she has totally withdrawn from any social contact and doesn't attend school! I wish you luck and hope your family have a fab holiday xx

Quietlygoingmad67 Thu 10-Mar-16 02:38:41

Try and keep her sleep pattern the same everyday you are there and I think if she is coping with the hustle and bustle of school at the moment she will cope with the airport and plane - keep her fluid levels high maybe worth taking hydration tablets to avoid any dehydration therefore headaches x

Quietlygoingmad67 Thu 10-Mar-16 02:52:25

Also depends where you are in the country but the children's CFS/ME clinics are few and far between in the south we have choose of Bath or London - so our apt is a 7hr trip just to see the consultant - I'd much rather be on a plane somewhere warm than stuck in traffic for a hospital appointment

Serioussteve Thu 10-Mar-16 03:55:38

Definitely go, take paracetamol and ibuprofen with you. How bad is her fatigue following exertion?

Serioussteve Thu 10-Mar-16 04:00:03

You should definitely be asking for a wheelchair at airports, you can then wheel her to the plane doors, and be collected with a wheelchair. Don't take any chances with the fatigue and try to alleviate her exerting herself as much as possible,

It's a horrid illness to have, I can fully empathise, the condition has systematically destroyed all facets of my former life. It may even be worth buying a cheap wheelchair to take with you - mine cost £70 from Amazon (Better Life @ Lloyds Pharmacy). thanksthanks

chicaguapa Thu 10-Mar-16 07:54:52

Thanks for the unexpected replies! In that they all say we should go.

We had decided that we'd see if we could cancel and claim on the travel insurance. Then reschedule for another time. But if we'd not get a refund, we decided we would have to try and go.

We have a doctor's appointment today so I'll discuss it with the GP.

It's a good point that if she's able to cope with 2 periods at school, she should be ok at the airport. And also that we would/ will travel to Bath to see the consultant (we're in Southampton).

Luckily her sleep pattern is ok as we spent the whole of last year attending sleep clinic with a child psychologist for delayed sleep phase disorder so that has been 'sorted'. (We now wonder if that was connected to CFS). It has slipped a bit as she's not falling asleep until after midnight but we are still keeping the routine of lights out and waking her at the same time each day. And she's not allowed to nap during the day.

Sorry to hear about your DD quietly. 18 months is a long time. I hoping that DD will be well enough to be back at school full time in September for y10, but I'm prepared if that's not the case. It's just a way of reconciling that the rest of y9 will be a write off but that it's ok.

Serioussteve overexertion exacerbates her symptoms and makes her feel dizzy. It also affects her mood as it makes her feel that she was getting better but has now regressed. But we are only in the early stages and are trying to find her baseline and manage her activities while we wait for a referral to the paediatrician. We are still just over a month off official diagnosis for a referral to Bath.

cestlavielife Sun 13-Mar-16 22:24:35

Has a chronic migraine disorder been ruled out ?

My dd now 15 had headaches nausea dizziness missed nearly two years regular school. .. after first few months unable to attend school she was nearly diagnosed cfs. But she was then diagnosed with migraine disorder and takes preventive meds which led to gradual change. Attendance now circa 90 per cent.

But yes I would take her on holiday and let her pace herself while ds and one parent goes off doing things.

chicaguapa Wed 16-Mar-16 07:47:16

Thanks cestlavie I'll bear that in mind.

Quietlygoingmad67 Mon 04-Apr-16 00:40:08

Just checking in - did you go? How was your DD? X

chicaguapa Mon 04-Apr-16 14:26:14

We did go, yes. The GP wouldn't sign DD off as not being able to go so we couldn't claim it back on the travel insurance. It wasn't the best holiday we've been on but it was nice to get some sun and we'd have lost the money if we didn't go anyway.

It went ok. We had special assistance at the airports which was variable but it did ease some of the travelling fatigue for DD as there was less waiting around in queues compared to usual. We hired a wheelchair out there and managed a few small trips out but she could only really manage an hour before going grey.

We made DD sit outside for 15 minutes each day (which she timed to the second hmm ) so I hope that it has done her some good. I would say at minimum it was a break from the monotony of being ill at home every day and at best it was some beneficial UV rays for serotonin and vitamin D production, even if she doesn't notice any difference in herself.

Caron2015 Thu 25-Aug-16 18:20:47

Hi, my daughter became ill at the age of 13 and was diagnosed with CFS/ME and attended a local CFS service for young people for almost 2 years. During this time she missed most of her education and we were encouraged to keep to a strict timetable, not let her nap in the day, encourage her to be up and about and to pace her activities etc etc. It was a rollercoaster with her seeming to get better and then relapsing (boom and bust), very few tests were done outside the standard blood tests and no-one seemed interested in finding out the root cause or if she likely to improve. We were just told that many teenagers 'grow out of it'.

Have your daughter's been assessed for POTS (postural tachycardia syndrome) or dysautonomia? There is apparently an overlap of POTS or orthostatic hypotension and CFS/ME but the CFS/ME specialists, certainly in our case, made no reference to it or suggested an assessment.

When our GP finally agreed to a referral to a POTS specialist, my daughter was tested with a Tilt Table Test and a diagnosis of POTS was confirmed. She was given lifestyle advice and told to increase her fluids and salt intake, but it was medication that was the game changer for us. She went from being largely housebound to being able to attend school, albeit still not full time, go out with friends, go to concerts etc. She still struggles with lots of activities, but at least now we know that being upright can cause her symptoms and if she wants to right an essay, being as horizontal as possible in bed will enable her to think most clearly.

I'm furious that my daughter lost two of her teenage years and education because CFS services don't automatically test for POTS. I would advise anyone diagnosed with CFS to request a POTS assessment.

Also, for parents of Teenage girls - my daughter developed her health problems after her HPV vaccination which was given in Year 8 at school. I have since discovered that POTS and autonomic nervous system problems following HPV vaccination has been reported in medical journals from doctors all over the world.

BugEyedBeans Sun 28-Aug-16 08:25:42

Good to hear you managed the holiday!

Sorry if I am hijacking this thread but I wanted to ask some advice as I am concerned for my son aged 14. He goes through periods of being very tired, feeling unwell, but with no specific symptoms. these phases can last up to a week, then he is back to his normal self. He has taken quite a lot of time off school in the last year and it is (sometimes) preventing him seeing friends, doing after-school activities.

As far as I know this doesn't seem like CFS as it is not continuous. The doctor has done various basic tests, but no obvious results. The doctor suggests a "lingering virus" which isn't very helpful.

Can anyone suggest good websites or sources of information? Should I start a symptoms diary for him? How can I help him get more energy?
Thank you...

CFSKate Sat 01-Oct-16 11:40:45

IDK if your son has CFS, but here are a few ME/CFS websites

www.openmedicinefoundation.org/2016/06/25/mecfs-in-children-by-dr-david-s-bell-2/

www.tymestrust.org/

investinme.org/

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