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!

Thanks for the support. We have managed a short trip out to the garden centre for a yummy cake and coffee this afternoon, just to try and cheer us all up a bit. Lovely to get out again. Also stopped at a shop to buy some clothes for DD to wear when she does go back to school. Absolutely nothing fits from last year, so whole new wardrobe needed. She is a lot happier now, but tired.

I was trying to explain to a very good friend how I felt and I came up with the fact that when DD was first ill it was as if we were travelling on a downward escalator. When we went down a step we always believed that that would be the bottom, then another would lurk. This time I feel as if we know how far the staircase goes down and we are travelling down there again and all out of our control.

I think this is probably the first time that I have felt so rubbish about all this and it is so out of character for me. I don't like feeling like this about the situation, so am determined to sort myself out so that I can be the support that DD needs.

Thanks once again. sorry can't do my grin grin grin at the moment, but not so sad, sad, sad as yesterday either.

Positive - I do know how you feel and I think the way you describe it is absolutely spot on. Try not to think about the escalator too much, it may not go that far this time. Try to keep doing positive things about the CFS as being proactive does allay the feelings of helplessness.

Hope you feel better tomorrow.

I had ME for 2 years and nothing herbal or foody helped me.

I don't actually know what helped me to come out of it in the end, except that I had been put on mild antidepressants by my doctor and when I decided to come off them after about 6 months, the ME left me as the drugs left my system. A few weeks later, I was totally recovered. It was like a neurological switch had been flicked in my brain.

Now, I realise that it may be a bit contraversial, but please remember that there may be a neurological component to ME and that is what antideps target - they are not mind altering drugs, they are just drugs that target the nervous system. They are also used to treat neurological pain in people with diabetes, so they are not evil.

Might be worth asking your GP about?

Anyway, my other advice is to try to - on good days - encourage her to exercise if she can, and whatever you do, don't let her go into a wheelchair. She needs to keep moving her muscles, otherwise once the ME leaves her, she will still have no strength or energy as her muscles will have wasted.

I used to go to the swimming pool with my mom, and 1 length was a real achievement at first, but I think it really helped me to pull myself out of it.

I feel for you and your DD and really hope she get's better soon.

Positive - sorry things are so tough for you. I know how you feel, every time we have a bad few days, I get scared DD is going downhill. Unfortunately, it looks as if your DD has been booming and busting. I know this is so hard, all any of us want, as I know I've said before is for our children to have normal lives and do what other kids do. I don't know much about the Lightening Technique, other than that I dont understand it because it seems to go against everything else. However, I know that some of the DDs on this thread have done well through it and I have also read a couple of blogs from late teens who have recovered totally. I do think that you need to have agreement from your DD if you decide to go down this route - it doesnt seem to me (in my ignorance) that you can do this without her being totally on board.
Roomfor2 - many GPS are reluctant to prescribe antids for under 18s. Certainly neither our paed or GP would and DD is I think the eldest child on this thread.
Generally - DD is doing well on Perrins. We seem to have fallen into a pattern of 1 bad day and 1 not so good day following Perrins, followed by 4.5 pretty good days until the lady comes again. She is definitely doing more than she was before. Is trying to walk outside the house more, made it to the corner and then up the next road yesterday - probably the furthest she's walked outside for almost 2 years. Made some scones today. Good luck to all returning to school.

I'm 18, and have had ME/CFS for the best part of two years now. Its been incredably difficult - I was put in a physc. unit for six months because I was accused of lying, and then told it was all physcosematic. I was lucky to finally get a doctor who took me seriously.

If there is any way I can be of assistance to anyone's child, am more than happy to give out my email address. I was put in touch with a fellow ME sufferer through a mental health project I took part in, and found having someone who understood what I was going through on a daily basis incredably helpful; I didn't feel so lonely.

Best of wishes to you all. x

Thanks so much for posting, erika!
So sorry you've had such a hard time. Everyone on here knoiws how difficult CFS/ME is. I know our DC will appreciate your support. Have a read through of the posts. I know it's 25 pages long but there's some really useful stuff on here!
xx

Hello Erika - as Optimistic says, thanks for posting. My DD isnt really a child anymore, probably only slightly younger than you by the sound of things, she will be 18 since November. Her story is different to yours but it sounds as if you have had ME for a similar sort of time. She is exciting about being 18 and an "adult" but says she doesnt really know who she is and she still feels 15, because she's spent almost all the past 2 years at home with us which clearly isnt how it's supposed to be. Her school friends let her down and in some ways she's much older than her years and in others much younger. Would love to hear more of your story.
Hello All - hope you all have a good day. Hoping to have a little outing with DD later.

Chocaholic can totally sympathise there. I won a scholorship for sixth form after being at quite a rough state school, so lost any friends I had from there when college started - gotta love 16 year old logic - and then when I got ill I lost all but two of my friends from sixth form. Its such an isolating condition. That being said, I trully believe that everything happens for a reason. If I didn't have ME, I doubt that I would have met my DP, and so wouldn't be expecting my son - and although it gets me down at times, and scares the hell out of me wondering how I'm going to manage, especially with my ME and BPD, I wouldn't change it for the world.

I do often wish that I could have had a "normal" time, but then again, the things I have done and acheieved in the past two years are probably more meaningful because of when they were acheieved. I intend to go to uni, when I'm well enough, and now when my son is old enough. An education can be gained at any time.

In a lot of ways I was rather lucky. I have to use a walking stick at all times, and for longer journeys a wheelchair, although I do avoid it - I should use it more than I do! There was only a little while when I was so ill I couldn't get out of bed. And as much as the reaction I gained from the medical profession at first WAS terrible, if I hadn't have had the motivation of "I need to prove them wrong", I think I would have wollowed in what I was going through. The first doctor I saw at the hospital kept me in until a physcatrist, physcologist and social worker could see me - as soon as she herd the words "anti-depressents" I was instantly classified as a head case, if you will. She forced me to "walk" without my stick in a room full of people. I've never been more humiliated; I remember that day very clearly.

It actually took at physcatrist in the physc. unit who had had ME to pull me to one side and say he believed me. My GP wouldn't do the referal to see the ME specialist because I was under a physc. team - that's a whole 'nother story, don't get me started! - so I was so relieved when this guy said he would. Being told, time and time again, that I was imagining it or lying about how I was feeling had made me begin to doubt myself, and for a while I trully thought I was loosing my mind. I still do wonder occassionally; the nagging doubts slip in when people ask what is wrong with me / why I have a stick, and they just give you that look that clearly states "You should be locked up somewhere..". Attitudes are terrible, and I really want to change them.

Anyway - rant over!

I hope your DD enjoys her outing

Hi Erika, So sorry to hear all your problems with the medical staff. That must have been so very dificult for you.
CAn I ask you a question? What was the best thing your mum could/did do for you? I feel so helpless just sat here watching DD struggle and I always think I am doing the wrong thing. Teenage years are so hard anyway that this all seems to just make everything harder in some ways. DD really swings from being calm and receptive to being totally frustrated and taking everything out on me. I do really try to stay calm with her as I understand that she is so frustrated with it all.

DD seems more lively again today and has just popped out to see a friend just for a short while. She is very aware that she has to pace herself again and she does seem to accept the limitations better than i thought she would.

Thanks for all the support ove rthe past few crap days. I am feeling stronger now and more able to cope again. Mrs Evil is back!!!!

Choc - the Psychiatrist at CAMHS was willing to prescribe mild anti deps for dd but after evaluation decided she didn't need them but made it v clear that if dd or I felt situation changed,then we should go straight back.Re LP, nearest link I can make is with CBT - which IS a fully recognised treatment for cfs.
So glad to hear yr dd is having many more good days.
Good to hear from you Erika and Roomfor2, as well as from everyone else. Your story sounds shocking, Erika - glad you found someone who believed you. Roomfor2 - my dd's docs really encouraged the exercise - even going in a jacuzzi was nice for her - so really see your point. Now, she is doing more exercise!
As you say, I don't think the cfs/me experience is all bad - you certainly learn what and who are important and my dd has matured so much and learned strategies to cope with stuff.I have learned to step back and be slightly less controlling!
Positive - it may seem at the moment that your experience and your dd's is all bad - but just think - you met us! Are you all having a better day?

Dwardle, I was feeling better, til I read your post. Were you supposed to be depressing me or cheering me????? only kidding. I am very glad I have met you all!

Positive - look how your DD is recovering much more quickly . She will have to be careful but this is so much better than before thank goodness. It is such a relief for you all especially when you think back to how bad she was. Glad you are feeling more like your old self .

Erica and Roomfor2 - thanks for posting about your experiences, every little bit of information is a help. Roomfor2 have you ever had any symptoms since or have they cleared completely? Erica what a horrendous time you have had, but I am glad things are looking up for you now. Good luck with the baby and let us know how you are.

Hi to everyone else how are you all?

twentyoneagain - no, no more symptoms since! I suppose I do get a bit more tired than most when I exert myself or when I'm stressed/busy, and I need plenty of sleep, but it's just a normal tired, not ME type of tired, and I'm just careful not to over do it. I've run Race for Life and can swin as many lengths as I have time for, so definitely no lasting evidence of ME at all.

As I say, I'm not sure exactly what it was that helped me, but after 2 years of sleeping 16-22 hours a day and being a virtual zombie during any waking hours, I felt suddenly and completely better after stopping the tablets.

Maybe I was lucky, maybe it was the treatment, I don't know. I do hope all the sufferers here recover too, and hope in the meantime, you can all keep your lives going so that you can get back on track again once you are better.

Just checking in.

Great to hear everyone is feeling much better!

Erika - good luck with the baby. I am absolutely certain that in dealing with CFS/ME our children will have learned important life skills and be much more mature in many ways than their peers.
You certainly sound that way.

hello - been reading posts, but not managed to write. Sorry positive that you've had a rough week - hope things are looking up again. dd made it to 1 hr of school today. She was v. worried about starting her new school, and looked terrible this morning, and was very poorly. We decided to still go, and she enjoyed her time but came out looking grey, not talking and shaking. Straight home to bed and soon had temp of 39.5. She's better tonight in that her fever has gone, so I'm hoping that's why she was so unwell, and that it wasn't that school knocked her for six. Definitely feeling a bit anxious mum, but a lovely friend turned up at 6pm with meals for us and stayed for 2 hrs to help get 3 to bed, and is returning tomorrow afternoon after work so that I can take my oldest out to her ballet lesson without having to bring dd2 out too. Sometimes people really are lovely aren't they ... Hope the week ends well for everyone.

Positive Hmm... That's a tricky one I tend to act like you DD in all honesty - sometimes I'm incredably difficult to live with, and do feel sorry for my family! I think just being there when I do want to talk and not pressuring me when I don't is the most important thing. Making me feel "normal", especially when I'm out in my wheelchair and getting stared at. Just genreally being my mum. She doesn't make me feel bad for not managing stuff one day when I can do it on others. Reminding me I need to pace myself when I don't want to!!! Constantly reminding me its not the end of the world As much as sometimes I want to murder my parents - show me a teenager who doesn't - I wouldn't be as "okay" as I am now. In all seriousness, without their support, dealing with my ME, my BPD, and now my pregnancy, I really don't know if I'd be here. For what its worth, it sounds like you're doing a fab job I can't imagine how distressing it must be to watch your child struggle on a daily basis. I admire you all.

Re Exercise - my specialist recommended a Wii Fit Its been FAB. Because it clocks the minutes you do as well, you can keep track of what you can manage before you're tired, but also, having the yoga is brilliant. The balance exercises have helped no end as well Have also found aqua aerobics incredably helpful, if that's of any use to anyone. The water takes the weight off everything (a God-send in pregnancy!!) and eases the pain because movements are so much smoother.

Katsh hope your DD is OK now, how was she yesterday did she go in again? Your friend is great and what a relief for you to have someone like thatto help .

ErikaMaye thanks for posting, it really is good to get your perspective, and you have come such a long way. Good luck with the pregnance.

Didn't check my post above at time of writing and it shows!!

Optimistic - we went to London yesterday with DH who had a meeting. We finally found Abercrombie!! DD2 was in her element, DD1 very bemused, DH stood it for about 5 mins and had to walk out, I'm still giggling to myself about it today . Loved the Mums who were waiting patiently outside for DCs but went in for a photo with the topless male just inside the front door, all in all quite an experience .

Hi to everyone, hope all is well. Back to school Monday although DD2 is in tonight for a bbq with other 6th formers, lots of new ones in that year.

No!! That should read DD1 at the bbq. I am really not concentrating today.

21again - glad you enjoyed Abercrombie . Hope DD has a very successful week next week. My DD has had 2 successful days at school and has had a busy weekend so fingers crossed.

Dwardle - hope you and your DD have had a good start.

Positive - here's hoping for a better week next week.

Everyone else on the thread - have a lovely weekend and a positive week next week.

Hi All - hope your weekend is going well. DD is starting her online maths A level this week and is looking forward to it. Is just coming out of her bad post treatment day, with hopefully a good few days ahead.
Erica - thanks for sharing your story. I agree totally that you will be able to make up what you havent had a chance to do education wise. I think we mums can all get a bit fixated on the importance of education. The truth is, I think, that the most important form of education is life. When is baby due and how are you finding pregnancy with ME?
21- I must be showing my age - what is abercrombie?
Katsh - hope your DD is OK and has picked up after her first day at school.
Positive - hope school is going OK

I must be old too, Choc. What is Abercrombie?

Hope the schooling is going ok.
I have a meeting tomorrow morning at 10 to discuss what is going to happen this year. DD is realy excited about going back. She says she does not want to faff around with the one hour a day. She wants to be going in full time by next Monday. She is very much an all or nothing person, and it is not easy to get her to see that this may not be best for her.
She will be going to the specialist unit and it is nice to be having a meeting where i know I wont have to be fighting for her, or against people who are totally unreasonable. I get on well with the head and really trust her, which is a very new situation for me to be in. It's quite nice!!

Hope you are all having a good weekend.

Choc and Positive google Abercrombie and Fitch for the website. There is one shop in the UK, Optimistic and I were discussing it at our meet up, my DD was keen to go and Optimistic knew all about it .

Positive - I am so glad you have that weight off your shoulders now, and as you say, the staff at the unit are totally on your side and will want to do what is best for DD. She will quickly realise what she is capable of doing and who knows, her positive outlook may well help her over this. Good luck this week, and to everyone else for the new term.

has seh been in contact with any oungsters with slapped cheek syndrome( human parvo virus)

Thanks for the abercrombie info. I had actually been really nosey and typed it into google, but was confused by the clothes site, which didnot seem to mention anything about topless men!! It was the topless male I was interested in!!!