CFS in teenager, can anyone with experience suggest a routine?

[overthemill]

Dd 14 recently diagnosed with CFS and waiting to see specialist cfs paediatrician out of our area as there is no one in our area. We know from reading that she needs a routine. She is really severely affected at present and is almost bed bound though by using bottom to come down and hands and knees to get up she is managing to come downstairs each day. But what routine should she have? I try to get her up around 10 but it takes about an hour ( more on days when I insist she showers) to get her out of bed and dressed. Most days I have to dress he and clean her teeth. She gets down, eats breakfast and stays on sofa until bed at 8. I try to encourage and stimulate her but it is very hard. Mainly we watch tv and chat a bit. Tbh she doesn't watch tv it's background for her. She can't bear bright lights or noise so lots of day we sit with curtains closed. She can't read or concentrate and a conversation is hard as she forgets words. Last week I got her outside (about 15 steps for me) to see her rabbit. Eating is hard as she struggles with smells and tastes and has to est same plain food every day. No variety at all. She tolerates eating but wouldn't do so unless I basically forced her! When she gets up to go to loo I have to help her up and provide balance for her as she is so dizzy and she faints frequently. I am scared to leave her alone. I get up to her several times in night and during evening when she is in bed.

So, what an earth can I have as a routine? What should she be doing? Today a maths tutor from medical needs team is coming but she expects to come say hello DNS leave. They font think she's well enough for tutoring. After Xmas we are hoping for a physio to assess her and an ot who can suggest ways she can be more independent as she hates me having yo provide intimate care for her.

Any ideas from you people with CFS experience? Am happyish to wait for specialist input but feel I may be making her worse!

[overthemill]

bump? anyone?

[CFSKate]

page 21, Energy Budget/Bank (EBB)

Energy Budget/Bank (EBB)
Pacing is not a cure but it is essential as it enables patients to make the best use of their limited energy. Similar to a household budget, the more limited the patient’s energy, the more important it is to prioritize energy needs and budget its use. Ideally patients should work towards having four energy accounts.

EBB Accounts


ADL
First priority is to conserve energy for the essential activities of daily living.

Emergency
Conserve some energy for unexpected events that require additional energy.

Sharing
Budget some time to share with others, whether by phone, email or in person. Talking and listening can be exhausting so these periods should be kept very short, with rest periods before and after. Prioritizing is essential.

Energy Savings Investment
Ideally, work towards saving a little energy every day in order to get stronger and invest in their future health.

Problem:
Typically patients consistently overestimate what they can do and are not aware that they have overexerted themselves until after they are in a ‘crash mode’.

Objective:
Optimize daily functionality and activity endurance without aggravating symptoms



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drug trial

25% group for severely affected

This is Dr David S Bell's severity scale

100: No symptoms with exercise. Normal overall activity. Able to work or do house/home work full time with no difficulty.

90: No symptoms at rest. Mild symptoms with physical activity. Normal overall activity level. Able to work full time without difficulty.

80: Mild symptoms at rest. Symptoms worsened by exertion. Minimal activity restriction needed for activities requiring exertion only. Able to work full time with difficulty in jobs requiring exertion.

70: Mild symptoms at rest. Some daily activity limitation clearly noted. Overall functioning close to 90% of expected except for activities requiring exertion. Able to work/do housework full time with difficulty. Needs to rest in day.

60: Mild to moderate symptoms at rest. Daily activity limitation clearly noted. Overall functioning 70% to 90%. Unable to work full time in jobs requiring physical labour (including just standing), but able to work full time in light activity (sitting) if hours are flexible.

50: Moderate symptoms at rest. Moderate to severe symptoms with exercise or activity; overall activity level reduced to 70% of expected. Unable to perform strenuous duties, but able to perform light duty or deskwork 4 - 5 hours a day, but requires rest periods. Has to rest/sleep 1-2 hours daily.

40: Moderate symptoms at rest. Moderate to severe symptoms with exercise or activity. Overall activity level reduced to 50-70% of expected. Able to go out once or twice a week. Unable to perform strenuous duties. Able to work sitting down at home 3-4 hours a day, but requires rest periods.

30: Moderate to severe symptoms at rest. Severe symptoms with any exercise. Overall activity level reduced to 50% of expected. Usually confined to house. Unable to perform any strenuous tasks. Able to perform deskwork 2-3 hours a day, but requires rest periods.

20: Moderate to severe symptoms at rest. Unable to perform strenuous activity. Overall activity 30-50% of expected. Unable to leave house except rarely. Confined to bed most of day. Unable to concentrate for more than 1 hour a day.

10: Severe symptoms at rest. Bed ridden the majority of the time. No travel outside of the house. Marked cognitive symptoms preventing concentration.

0: Severe symptoms on a continuous basis. Bed ridden constantly, unable to care for self.

[CFSKate]

She doesn't sound well enough for tutoring, she doesn't sound well enough to be able to learn anything.

[CFSKate]

ME facebook

film about severe ME

[CFSKate]

voicesfromtheshadowsfilm.co.uk/2013/treatment-called-graded-exercise-therapy-get-may-not-help-mecfs-but-actually-can-make-it-worse/

[IShallWearMidnight]

I know you say she has a CFS diagosis, but has anyone considered POTS which has a similar presentation, but there's a lot more can be done to help? Apologies if that's already been ruled out, but it's a very commonly underdiagnosed condition, and ME/CFS tends to be the misdiagnosis of it when fatigue is the initial presenting symptom.

PM if you want more info (so as not to derail the thread and CFSKate's very detailed advice).

[GardeningLass]

Hi Overthemill

So sorry to hear your DD has CFS. It is a horrible illness. My 19 yr old DD has suffered with this for several years. My DD does not sound as bad as your DD so I am not an expert on the actions you need to take but I did not want your post to go unanswered.
I have found the AYME website very helpful for all sorts of advice so may be that is a good place for you to start. The staff there are very nice and approachable - they understand CFS!
The treatment of CFS needs to be tailored to the individual, however one of the main principles of CFS treatment seems to be pacing and avoiding the boom and bust cycle. The best way to explain this is to think of DD as a rechargeable battery. She has a set amount of energy available but does not recharge very quickly so she should only use about 75% of her energy and the reserve of 25% will keep her going until she can recharge. If she uses all her energy then she will be exhausted and have nothing left until she recharges and then may take several days to recover - this is the boom and bust cycle.
I think in your position you need to start with very little activity with rest periods in between and very very slowly build this up. For instance could you break up the getting up process. eg
sit DD up in bed - rest
breakfast in bed
DD rests while you take dishes away
Wash then rest
Get dressed then rest
Go downstairs - longer rest

Then during the day have very short levels of activity with rest in between. This may be just a short walk around the room twice a day. Then when this routine is established perhaps a little longer walk twice a day then three time a day etc etc. The secret is do not rush it - very small increases in activity over a several days/weeks.
It is important to remember everything you do takes energy - even talking to mum/friend or watching TV so may have to limit these activities. Could your DD try meditiation/relaxation. My DD was initially sceptical but they have helped her to rest/go to sleep. There are some relaxation CD's available for teenagers/CFS sufferers.
Other things to remember

• don't worry about school work. She can catch up later. If she does too much now it will make her worse.
• look after yourself - you are no good to DD if you get ill as well.
• things will improve - but don't try to rush it.

Will end there but will keep an eye on this thread and return if I can help.

[overthemill]

cfskate I think she's a 10 on that scale. She cannot do anything. If she talks for more than couple minutes she cannot finish sentences or find words. Today so far: after I cleaned her teeth and helped her dress and she bumped downstairs (taking 5 mins) she ate breakfast really slowly and is now almost asleep on sofa. I have TV on for company really.

Don't know if I could get her to walk even to kitchen today. And we live in very small house! Tutor has to see her in kitchen though.

I have given up job to care for her since beginning September . Have been advised to get wheelchair so I can get her to hospital appointments but honestly I can hardly even get her out of front door let alone in car. Meant to see dietician on Friday but will have to postpone until she is mobile.

gardeninglass I knew activities were things like eating and talking but hadn't thought to rest in between washing and breakfast. Maybe that will help. Hoping physio will have ideas for physical activity but since a 2 week stay in hospital when they forced her to bed rest she has been immobile.

Would love time to myself but feels impossible. Have no family locally and friends all work as does DH who has very full on job. He helps out at weekends but can't do the personal care for her. Last weekend I went out shipping for an hour ( first trip out since august) and was do stressed the whole time. Would really live night out with DH. But how?

[Totesamazeballs]

Hi!
I am sorry you have to go through this. CFS is such a brute. I can't be as helpful as the posters above and you probably already know all this stuff but I wills hare my experience in case something helps.

I had it in my late teens but not as badly as your DD. When I was first struck down I went for some controversial intensive vitamin therapy and also followed a vitamin pill popping regime, as well as a very pure and healthy diet. I struggled with eating mainly because everything, mind and matter, just slows right down, enthusiasm seeps away and you are left in this grey, heavy, dull place. I was told to focus on protein rather than sugar and carbs for slower, more steady energy. I also had to drink lots of filtered water.

Th s was twenty years ago now so I suspect advice has changed but I remember diet and vitamins being key to helping recovery. I was also told to listen to my body more which, simple though it might sound, was great advice. I seem to remember not being able to read or even really watch TV. Mum used to read to me which was lovely or put on audio books too so I could shut my eyes.

When I was well enough she would drive me to TK Maxx as we could park righ outside and buy me something as a cheer up. Those trips stood out in my mind as important and highlights in what was otherwise a pretty switched off existence. I know this is too much for your DD now but one day it will happen.

Sorry if this isn't helpful. I wish you luck with everything.

[GardeningLass]

Hi Overthemill

Is your DD sleeping a lot during the day?
If so this will be one of the things the CFS specialist will look at. They try to get them sleeping a reasonable amount at the right times so restrict sleep during day and have set wake up times. I can't help with the details of this - you need an expert - but before you go to your appointment with the specialist it may be worth keeping an activity diary for a couple of weeks so they get an accurate picture of what DD is able to do. Divide a piece of paper into hours of day down one side and days along top - then just note down when DD wakes, how long she sleeps, and activities done (include talking to family/friends, eating, dressing etc) This may save time in the long run.

[GardeningLass]

Hi Overthemill

Don't postpone the dieticians appointment just yet. Why don't you ring them, explain DD is housebound and ask if you could go to the appointment alone or request a telephone consultation. You have nothing to lose and could gain valuable advice re diet.
When my DS had to see a dietician she had all the medical info from the doctor. She just weighed and measured him but beyond that she just talked to me and follow up advice was via phone.
Worth a try?

[overthemill]

gardeninglass I try to stop her from sleeping in day, hospital told me not to let her but she does sometimes nod off. I am trying to keep log on the app from bath hospital but it's hard. Paper may be easier. She will sleep 24 hours a day if allowed to. At night she sleeps from 8 and wakes a few times when I soothe, cuddle help to loo etc and then wakes around 10 naturally for loo etc. am very clear about sleep being a night time activity but if I let her 'rest' she will sleep. That's why I need help with routine. She can't concentrate even on audio books or music

[CFSKate]

I think as she is so ill you should contact the 25% group

I'm not sure it's a good idea to stop her sleeping in the daytime. If she's sleeping at night, and needs to sleep in the day too, maybe she needs to.

Some people go to see CFS specialists, and the advice they get makes things worse. So be cautious.

//www.prohealth.com/library/showarticle.cfm?libid=18382

that chart I posted, you said she was at 10. I think I read somewhere you should not try to exercise unless you are at 70 or above.

[overthemill]

cfskate when it says in the chart % of activity does that mean what would be normal if not I'll or % of what she has been able to manage since ill? Basically she can do nothing compared to what she used to be able to do. Before being ill she was a normal active teenager, swimming , biking, walking dog, just totally normal. But since beg September all she has done is sleep, barely able to walk and unable to join in anything. She has missed out on so many planned activities that she had really looked forward to. She cannot manage to do anything shed normaly do. That includes school work, texting, Facebook, music, playing guitar. Nothing. She is essentially housebound and would be bed ridden if I let her

[CFSKate]

when it says in the chart % of activity does that mean what would be normal if not I'll or % of what she has been able to manage since ill?

I think it means normal if not ill. I'm not sure.

Most people with ME say "I wish I had rested more when I first got ill, then maybe I wouldn't have made things worse by pushing myself." So any routine should not be one that pushes her too hard.

Your description of your daughter, 20 years ago that could have been me. There was no treatment for ME then. Now it's 20 years later and there's still no treatment. Because in the last 20 years there has been no proper research.

In the long term IMO the best thing for anyone concerned about ME to do is raise whatever funds they can for research like this or this]

In the short term, I suggest contacting people like the 25% group or Invest in ME and learn what you can there.

www.tymestrust.org/

Patients with ME are often not well treated or given the right advice, even by so called CFS specialists. Don't assume that everything the doctor suggests is going to be good for her.

Are you anywhere near Bristol?

[CFSKate]

I am not saying she won't experience any improvement, sometimes people, more likely if young, do get a lot better, even if they have been severely ill. There are other people around on mumsnet like Totesamazeballs who can tell you that from their own experience. I just want you to be aware of what can happen, of what can go wrong.

[overthemill]

Since she first got ill she had rested. She had a virus and was really ill high temp vomiting the lot for 11 days then this. Kept in bed sleeping until told by hospital had to stop her sleeping 24 hours a day. But I have had her on sofa with duvet dozing really for last 4 months

[furlinedsheepskinjacket]

let her sleep its vital for her recovery.i have been ill for 10 years with this illness and what you described is pretty much my average day.i have been better I have been a lot worse.she will get better than this but it takes time.lots of time.ime you can't do anything to encourage recovery except rest.

[overthemill]

What I was hoping for was an idea of what kind of routine we should have? All medical people say it's important but do far not seen the experts who can give us the routine!

[CFSKate]

Whatever she thinks she can manage, only do 70% of that.

Don't do a lot one day, and then relapse for a week. Easier said than done, I know. The temptation is great to say, I will do this today, and I am willing to pay the price for the next week/month. Avoid boom and bust.

What is her quality of sleep like?

[overthemill]

cfskate no chance of that at moment, she cannot and doesn't want to, do anything. It's as much as I can do yo make her eat. Getting to the loo is a major effort. Today she did walk to kitchen. Tutor was surprised st how bad she was

[CFSKate]

How often do you insist she showers? Could she cut back on that at all?

www.rogerebert.com/far-flung-correspondents/a-howl-of-desperation-for-those-who-cannot-howl

[Yacka]

hello. I was diagnosed wen I was 11yrs old. that was 20 year ago so I admit many things have changed. but I know u are focusing on a routine and asking for advice. my main suggestions wud say focus on a point in the day and stick to it no matter how little it seems
ie a shower or bath at 2pm..... or a tv programme to sit up and watch at 4pm....I personally felt too many goals of time ect set me back as I got despondent when I could not complete them. it has took many years and sometimes the emotional scars have been the worst. but to givw your daughter hope I am now married with two kids and after spending 5 yrs working for the nhs I am now at uni studying for a degree.

[overthemill]

cfskate I insist she showers when she smells! Bath once a week so I can wash her very long hair (which she has begged me to cut off but I won't cos know when she is well she will regret) and on Saturday that took us two and a half hours to do start to finish. Shower probably twice a week. But we have shower over bath so she has to step up and in which is so hard. She then has to sit down because she cannot stand up for more than couple minutes. Showering is important as she has bad eczema which is flaring up at moment. She has very poor temperature control, so freezing cold hands and feet and sweaty body. Sweats seem to be big feature for her. We downloaded the ME association guide to parents and she has all the symptoms listed except 4. She is a total mess!

yacka thank you for giving us hope. Dd is so despondent. She has gone from straight a student with a lovely life to a clingy, frightened little girl who cannot even remember the name of her dog. Concentrating on tv prof is impossible.

Our routine is dreadful I feel but trying to do same every day for security. Same food at same times. Lots of rest. Some chats some tv. A good day is when she has the energy to stroke dog.

[chocaholic73]

First I am really sorry you are in this position. My DD has been severely ill with ME for nearly 7 years now and it is a huge learning curve at first. From what you say, the activities like showering/hair washing are way too exhausting for her at the moment .. with the severity of illness she has at the moment, two and a half hours is just too much. Really your best bet would be to get her hair cut shorter, she can grow it again. Although you say showering is important, it is just to much for her to cope with right now. My DD is not as badly affected as yours - we wash her hair about every 2 weeks - yes she would like to wash it far more often, but if she did she wouldn't be able to do something else she wants to, so sometimes she has to tolerate it not being at its best. Showering, again, is every couple of weeks. Make do with bed washes using some dermatological wash. This is all about compromise. The other thing is the TV ... even though it is only on for background, your daughter will be using a lot of mental energy just processing the bits of information that are coming out of it. It would be better for her to actually watch something she enjoys for 30 minutes or so and make this a focus for her day. When my daughter was first ill, like you she would come downstairs on her bottom and crawl up on her hands and knees. It was totally exhausting for her - eventually we moved her bed downstairs and she didn't go back up for another year - would this be an option for you?
There is a lot of information on the AYME website but also look at the ME Association and Tymes Trust. I'm afraid having a regular routine beyond mealtimes and hygiene, is going to be way too much for your daughter at the moment. It is a very difficult thing to accept this for both you and her. Esther Crawley is a paediatric consultant based in Bath but who travels nationwide to assess children if they are not well enough to travel. She visited us at home and we got lots of information on pacing from her. You can request a referral to her and use Choose and Book to do so. There is additional information on her hospital website here www.rnhrd.nhs.uk/page/85.
The other thing is don't forget to look after yourself - it is very tough for you to take care and do ask if you have any questions.