Chronic Fatigue in teenage daughter. Experience anyone?

[twentyoneagain]

Dd2 was diagnosed with CFS earlier this year and had a bad six months. After a restful Summer she seemed so much better and started school in September full of enthusiasm and hope. I guess it's all been too much and she now seems to be falling by the wayside again.

I know the only answer is rest and there is no quick and easy way to deal with it. Just wondered if anyone else has any experience of this with teenagers and perhaps can give me some tips.

Dd2 is 13 and it is so hard for her having to miss out on such a lot of school, not to mention the social side of being a teenager and being with friends. It would probably help just to talk!

Hi Positive - just agreeing with Optimisticmama really - the baseline can seem very low at first, frustratingly so. The idea is that she should use all her red each day so she levels out. When my DD was at her worst, it sounds terrible, but she really wasnt able to shower - it took too much out of her. I think it was more important for her to spend a little bit of time doing red stuff she wanted to do, like the computer, rather than showering and not being able to manage anything else. It is quite possible to get by with a wash and we used to flannel down her hair every few days. Now she loves going in the shower because she appreciates it but it is not the most important thing imo. Hope you get some help from Bath, Dr Crawley's secretary seemed very helpful when we rang.

I'm so pleased you posted choc as I remembered your DD has been much worse than my DD and I'm sure Positive will appreciate advice from someone whose experience more closely ressembles hers iyswim!! I agree that it is crucial to do interesting 'red' stuff with the 'red' time. I can't emphasise how much I think it is vital that the DC do not slip into depression - it's so easily done imo.
How is your DD Choc? Is she still making progress?
Take care all.

Another observation I had was that my DD didn't really have any hobbies that weren't described as 'red' which I found quite shocking in a way, at the time! She ended up doing stacks of 'colouring' - those stained glass windows books!! The yellow time was more of a problem for us so I hope, Positive that your DD is a great 'craft'/sewing girl. The other activity that was suggested for yellow was playing games where you didn't care if you won!!!!! Well, that was a complete no-no in our family. In fact that is probably described as crimson!!

Hi,
You have made me smile!!!

I totally agree about the games! Just read out your post to DD who gave a disgusted look and commented "who bothers to play if you don't want to win!!" A definite NO NO I think!! Also the arguements that would ensue any game not played to the max would probably use up red time for the next week!!

We were also very shocked to find that all DD's hobbies were red activities, even those she had taken up over the past few months just to keep her occupied while she is unwell. Even the craft ones Dr Crawley told us were red too! Colouring books are the best bet, but I find it really hard to see her colouring in like she would have done 10 years ago and she is getting so frustrated.

So far we have been very fortunate for DD not to get depressed as we recognise this would be so easy to happen, and so understandable.

I got an email back from Dr Crawley secretary saying that she is unavailable this week and suggesting I cantact my GP. He's on holiday this week. Local consultant, who is fantastic, is also on holiday!! All go off at the same time! Great! Wait til Monday and will just have to do our best til then. I won't bother the back-up dr as last time was totally unsuccessful and it isn't urgent.

Thanks for all your posts and support. So pleased that you are positive, I am aware that I could quite easily become so negative about all this if I am not careful.

Try to live your life too, Positive! I felt really guilty if I went out but my DD found it made her feel so guilty and therefore worse if I dropped all the things I did too. Looking back over our worst time it was important to try to laugh, try to have as normal a life as possible...hard I know...
My DD saw a 'human givens' counsellor for a while which was very useful as she could say things to her she couldn't to me. It helped to keep her positive and happy rather than bury all her worries and fears. Some talking therapy is important I think. 21again has used CBT which has been great for her DD.
It sounds like you are having a better day emotionally. Don't worry about all the experts. Try looking on the AYME website for info on pacing that might help. Someone suggested my DD kept an online blog type diary. She wouldn't consider it but I thought it was a good idea. I found it useful to write down the detail of our days so I could see any progress, however small.

Hi Positive - We didn't ever get as far as seeing Dr Crawley so I can't really give you any advice on the cards. It does seeem that you haven't quite found DD's baseline, but once you get that right then you should be able to progress from there.

DD doesn't want to try lightning yet, and she certainly is doing very well atm. We have made an appt with her therapist next week as he thinks it would do her good to talk again. She hasn't seen him since the beginning of Feb and has come so far on her own but could probably just do with a bit of help right now. Whatever was wrong with her on Thursday last week very quickly disappeared, the difficult thing is knowing what it was - either a bit of a bug that was going around or possibly stress getting to her a bit. Maybe if it happened this time last year it would have resulted in a "crash" whereas now she can deal with it, or is it a sign that she just needs to slow down a bit? Who knows, we are keeping a close eye on her though.

Glad to hear everyone else's DCs are doing well. Take heart Positive, your DD will get better but we all know the frustration and the worry that you are going through. Keep posting.

yes, yellow activities is a nightmare - my DD has always hated colouring, so that really didn't help. All the things she wanted to do were red too.
Hi Optimistic - DD is OK but sort of stuck at the moment. She manages pretty well round the house but we haven't managed to crack going out at all. She can manage about 10 minutes or so either in the car or wheelchair, without suffering afterwards, which means she can't do anything much. We have investigated the Perrin Technique which is a based on osteopathy and she is keen to do that, so we will see how things go there. Really pleased your DD is doing so well.

Hi everyone
There is a booklet you can download on the website www.afme.org.uk but it does not mention the colour coded activities. We have not done pacing either but I was v interested in your posts. I think my dd's activities are all red too - does reading 'More' count as mindless
What are other yellow activities? I wonder if my dd does too much red when she is feeling okay - would that lead to the ensuing lows?
My dd has had a worse couple of weeks but in great scheme of things, not too bad. She was a bit low but has cheered up and today, got her to read LP website. She was interested.This is progress as before she has not had much interest. DD has just done 1 hr maths tuition and could do it so lots to be pleased about.
Someone else has told me about Perrin technique and I was chatting to friend who works for CAMHS who was talking about ostepathy to stimulate brain changes as some neural pathways can shut down for various reasons apparently.Is that a link to LP, 21again?
Am off to lie down in darkened room! oh - asked my dd if she felt better cos her sleep was better or if she was sleeping better cos she felt better. Unsurprisingly she did not know but I do know that once we were in routine of out of bed by 8am - even if just transferring to sofa, she did seem to slowly start sleeping better - with aid of Enya on ipod. Is listening to music red, yellow or green?
Keep smiling everyone and keep posting. How are you, Nickschick?

Dwardle - you made me laugh!! Who cares what comes first! Am interested in what you say about Perrin as it sounds similar to LP. LP does use NLP, coaching, hypnotherapy and osteopathy to alter neural pathways so that the para sympathetic nervous system can operate. LP believes that in CFS patients the Sympathetic nervous system ( fight/flight) is working inappropriately - sometimes too high (sleeplessness) sometimes too low (fatigue). It trains you to spot when this is happening and use techniques above to change this. It quickly becomes second nature and that's why it has quick results particularly with young people. On the website there is a lady in her fifties who describes lighning as being given a key. That is the best description of what it does. If your DD ever wants to speak to my DD I'm sure there is a way of emailing on mumsnet but I'm not very good at this so I would havew to ask a techy!!

21again - lovely to hear from you. Sounds like your DD is managing it her own way and well. If she has recovered quickly then that is very good news as it shows she believes she is well as has not let her CFS take over again. I wouldn't overanalyse it if I were you.
Have a nice weekend all...

Hi all. Dwardle - yes doing too much red when she is feeling good, would definitely lead to the downs. Music is green (providing they only listen and aren't dancing round the room I suppose!). Optimistic - interesting about what you say about the similarities between LP and Perrins - my DD won't entertain the LP as she thinks they think it's all in the mind (I am more open minded but suspect that their air of secretness doesnt help). DD has a very scientific factual mind and she doesnt like things to be vague. Anyway it's up to her what she wants to do.
Hope you all have a good weekend

Hiya,Im ok ta im finding all this color thing quite confusing but it seems to work with all your dc - sam hasnt been as well this week it seems that as soon as someone said this is what you have hes been on a mission to prove otherwise this culminated on Tuesday with a massive row that almost came to blows with his older brother.

I quickly ran him a bath (that seems to seetle him) and was gutted to find him bent over in the bathroom unable to take his socks off he was crying,so i found myself bathing a teenager (the water dripping on his back hurt him he was that on edge) and he slept for quite a long time hes not really improved but hes managed not to get to 'breaking point' iyswim.

The colour thing you describe is making more sense as sam loves to play on the x box although it tires him out i see now that as he uses the live facility he is playing to win and therefore that activity becomes red instead of green.

Thankyou for asking about me - this is the only sense of support i get outside of the home as i think other people see me as kind of a 'victim' and feel awkward which is the last thing i want.

Hi Nickschick,

So sorry to hear about your DS, but you are not alone! It is so hard to be doing "Personal" caring like bathing or showering a child that is at the age of becoming far more independant. That is what I am doing too. I hate it. She hates it! What 14 year old wants mum in the bathroom at any time!

My DD is also finding it very difficult to come to terms with this illness. She sets herself totally unrealistic goals and is so set on them, only to be repeatedly disappointed and frustrated. A terrible, viscious circle of emotions .

I am just trying to hold on to the fact that DD WILL get better and will live life again. It will take time and life seems so unfair, but if that is what we have to deal with I will try my best. This is so hard though!!

I feel for you and your family. Don't give up! Life will get better. Have a good weekend.

Nickschick I am so sorry that Sam is having a tough time. He is so strong and determined but maybe he just needs to stop fighting it the way he is. Will he consider any kind of therapy yet? DD found it so beneficial after a really bad spell of six solid weeks off school. I think that like Sam she wanted to fight cfs but hated therapy. Because of that she was so determined not to have to go back after a couple of sessions that she really concentrated on doing what was best for her.

I know that everyone is different and what works for one doesn't necessarily work for another, but he is capable of doing so well and maybe needs a little outside help. I am sure others will come along with some wise words for you and maybe he could be gently persuaded. As Optimistic wisely said "there is a lot of emotional fallout from having an illness like this" and perhaps you could try that line with him. Having someone to talk to definitely helped DD and she still sees a homeopath regularly and values the time spent talking to her. DD is going back to her CB therapist next week for one session just to keep her on track.

Please also try to take care of yourself, like most mums you are probably putting everyone else's needs first, but if you can manage a little time out just for you then make sure you do it.

Take care and keep posting everyone.

Hi Everyone,
OM - you must think I am mad! When I read my post back, I laughed too! Thanks for all the onfo on LP and the chat offer - will speak to dd about that.
Nickschick - my ds who is 12 changes personality when on his ps3 for too long and it also varies depending on what game he is playing. This make me think that XCbox would be very red, iyswim, and if he is doing this and trying school, that's a lot. My dd is quite stubborn and when her consultant or counsellor has been clear about the path to take, that has been very helpful in reinforcing messages - is that an option for you? My heart went out to you re your last comment - send big cyber hug- and to you all.
This is a nasty thing -my dd is nowhere near as low as some of your dcs but is still not getting to school much. Today, she was all set to go to school then got a really bad headache. I was on a course and she rang me in a state. Felt so sorry for her.
Pos attitude - how are things this week? Did the info on pacing help? Thanks also for info, Chocaholic re this.
Agree wholeheartedly with advice from 21again, esp looking after yourself. This has been said to me over and over and when I finally listened, it did help us all.

Hi all - DD saw CBtherapist yesterday and came back so upbeat and positive. It really has helped her and she is much happier about seeing him than she was originally. He has suggested full time school after half term and she is really happy with that, as far as she is concerned she is well now so we will go with that.

How is everyone doing? Keep posting...

Hi all,

So pleased to hear about your DD, 21again. It is so encouraging to hear of someone improving with this and returning to a good quality of life.

Nickschick, I hope your DS has had a better week.

Seriously considering changing my name as I don?t feel positive at all any more! We don?t seem to be able to pick ourselves up. We were so determined to do anything and everything to overcome this, but getting very disheartened. DD is so frustrated with trying so hard to do nothing, but with no real step forward. Boredom is driving her crazy and causing even more frustration, then she gets angry, uses up red energy, downhill spiral again!!! Basically extremely fed up!!!

Positive - I'm not familiar with the card system so am not sure what constitutes a red activity, but we found that our DD was happy to watch videos etc in bed. We borrowed lots of old classics from a friend (as we no longer had many of them) such as Disney favourites which are easy to watch and don't require a great deal of concentration. She liked to get into our bed which had a softer mattress than hers - when she ached a lot she was very uncomfortable in her bed.

I think that our DD did accept doing nothing pretty well and therefore avoided the obvious frustration that goes with this. She missed out on so many things though, and it has been hard to watch so I am well aware of how you are feeling. I found it all very difficult to cope with at times and shed many tears.

Have you considered any alternative treatments yet? We found homeopathy to be very helpful and were lucky enough to have a therapist recommended by someone who had had treatment for a similar illness.

Obviously there is also lightning and I still feel that it is the way to go but the patient has to completely buy into it beforehand. Do look into it as they have some spectacularly good results.

Thinking of you and hope you start to see some results soon.

How is everyone else?

Hi all,
Hope you are enjoying the sunshine and week off school, work etc.
Have fun.
Hope things are okay with everyone.

Just in case anyone is interested there is a conference in London on July 11th held by the Royal Society of Medicine on CFS/ME open to anyone affected proffessional, patient or carer. Seems to be quite a bit on adolescent CFS. Looks good to me and well worth £10. Added bonus of a morning shopping in London! Anyone else intersted?

Hi Positive - interesting about the conference, are you planning to go? That date is not possible for me but I will certainly try to find out what they discuss.

How is your DD this week? Sometimes sitting outside in the sunshine is a bit of a tonic although said sun seems to have disappeared now!

DD is doing well and CBT therapist is really pleased. He wants her back to school full time after half term so fingers crossed for that one.

I do hope you start to see some improvement soon. It is so hard to deal with and sad to see our DCs feeling so bad. Take time to look after yourselves (if it is at all possible) and keep in touch...

Hi 21,
Yes I am booked up to attend. I think because I feel so helpless I am now trying to find out as much as possible. I can always post after and pass on info if anything new comes up. Really looking forward to it already!

Managed a sit in the sun for a while a few days ago, but still really not good. She seems to be having circulation problems too, which I can't find documented anywhere on the net, so I will have to contact consultant again. I am sure she must be fed up of me asking her questions!!

Personally I feel quite good at the moment. I had to give up work to care for DD, but they phoned yesterday asking me to work from home. They will supply laptop and all I need and they made me feel really good about ME ..... Not M.E.!!!!

Good luck with the plan for school next week. I'll be thinking of you. Please let me know how it goes.

Circulation problems - not sure if this is relevant but I remember DDs feet were icy cold to touch when she was ill. She said they didn't feel cold to her but if her feet touched you it really did feel like two blocks of ice. I suppose if someone is not moving around a lot then the circulation does become sluggish. I do recall someone else mentioning the same thing, not sure if it was this thread or someone in rl, will have to check.

How is the pacing going - any signs that you have got the baseline right yet?

It is great news that work have contacted you, it shows how they must value you and naturally is a boost for you. Are you going to try to do this, and good luck if you do. Look forward to hearing how that goes

Hi - It was me who mentioned circulation. My dd has/had problems with inner thermostat and this was a symptom for 2 other girls who had it - I spoke to their Mum.Not sure about what you do about it though! My dd's symptoms seem to come and go depending on ???
Am very interested in the conference - have you got a link?
Have just sent for LP book

Hi Dwardle,

Here's the link for the details on the conference. I am not sure if I have done it right as never done this before, but if not, go on the RSM website and type CFS/ME in the search and it will come up.
www.rsm.ac.uk/academ/x2g106.php

My DD certainly has thermastat symptons!! She was wrapped in a blanket and asked for the heating on when others were sunbathing this week or she requests open windows when we have been huddled with jumpers on! Totally bizarre bunch of symptoms. GP coming out tomorrow to test her blood flow as her feet turn really dark purple/black if they are not kept up. He said it was just because she is totally immobile, which makes sense.

Baseline still seems illusive no matter how low we go. We think we have it, only to go wobbly again. But will continue to try and not let it get us down. It is hard to be so strict this week with siblings all off school.

Dreading an education meeting next week!! Last one was horrendous and sent me in a spin for days!

Hi Nickschick, how are you? How are things going with Sam? Hope you are ok.

Enjoy the sun today!

Hi
Thanks for the link about the conference - looks interesting and will talk to dd about it when she returns from her sleepoverThe link worked perfectly.
V worried that you said you had an awful education meeting and are dreading the next one, Pos attitude. Who are you meeting and why are they being horrible? Have you got anyone going with you to support you? Am in education so if you need any advice, please ask.