My daughter has CFS (ME).

[Rhiannan]

Hello,
I only found mumsnet this morning joined and here we are I am writing a thread.

I feel a pretty desperate mum at the moment. I have many years of parenting behind me but at the moment I am at a loss. I have two daughters both over 18 and my youngest has now been told she has CFS. She had glandular fever last year and this year and after stayed ill. The GP has after many chats - we pushed for her to see a specialist. All the GP kept saying is rest take paracetamol, all very well and good but she is young has a job and wants to get better. She was not given any advice or support really at all.

Since then we have trawled the internet for information, a date for her referred specialist clinic is early March. When you are in a situation like this you feel that you need to do positive things now. We have also looked at other options and she has a few acupuncture appointments which I hope will help with relaxation and rest when she does manage to sleep.

I really do not know what to do next to help and support her, it brings me to tears sometimes seeing a young woman, my daughter struggling like this. She has returned to work part-time three mornings a week with the aim to increase her hours over the weeks. Her employer is supportive and understanding so far! Not sure how long this will carry on if there is not a reasonable sign of improvement. Yesterday she said that she felt she had stepped back to 4 weeks ago, where she was at a stage of not even wanting to shower or wash etc. This for a young woman who was always so keen on looking presentable and looked after her appearance. Yes she is depressed due to the situation not surprising really. It is difficult to measure where things are moving forward or backward.

I wondered if there was anyone who has had experience with CFS that could give me some advice or encouragement. I have always been the backbone of the family and at the moment I am floundering. I do not know what to do, what to say to help her.

Hi there I have CFS also known as Post Viral Fatigue Syndrome and ME. I was actually searching Mumsnet for someone with a young person with this as on a forum that has greatly helped me there is a mum with a young boy who has CFS too and I wanted to see if she had tried Mumsnet and if anyone on here had someone young with CFS. In my search I found you. Its a very variable condition about which not much seems to be known. (Mine started with Pneumonia) I am not young...by the way :) I have returned to work on 4 hours a day it is hard. I and many others understand what is like. Fatigue does not do it justice. I don't manage to put make up on to go to work its just one step too far! Having a supportive employer is very important and a lovely supportive mum like you. Anything that removes any stressors or anxiety will help. I too have had improvement and then relapse which is very disheartening and then improvement again. I will say to you and her what others have said to me and that is that she will get better, it is very slow progress but she will. As long as all other things have been ruled out as this is a diagnosis of well.. ruling out everythng else. She has youth on her side - young people are more likely to make a fuller recovery apparently. Sorry to ramble on but try this link listen to what the consultant says particularly about young people if you havent already. www.nhs.uk/Conditions/Chronic-fatigue-syndrome/Pages/Introduction.aspx

The forum I mentioned is below. There is also a facebook group if she is able. If not you could post maybe. There is a lot more advice that people on these forums can give than I can.

www.postviralfatigue.me.uk/forum/forum3-introduce-yourself.aspx

She needs plenty of rest - hopefully sleeping at night if she can. Very healthy eating. Dark choc 85% cocoa (I know sounds weird) has been mentioned before not after 4 though as you won't sleep! When she has better days very small amounts of gentle exercises but not to over do this as it can make you feel worse. Time and patience lots of patience. Great you are trying the accupuncture. I like manual lympatic drainage too very very gentle kind of massage. Others have found meditation helps. There are lot of varying physical symptoms with this condition too fatigue being the biggest for me followed by digestive problems and nausea. Others have muscle weakness body aches and pains and headaches.

Hope you get some help. Tell her it does get better you do get some control over it.

I am on a not so good day today so I hope I am making sense!

PS I am waiting for an appointment too.

big hug

Jx

i was diagnosed with me when i was 12 - i spent a few years servearly ill to the point of not being able to move or talk - dont panick - im now 25 and was well enough to work and now have a 4 month old.

i tried many things - you need to accept there is no magic cure but there are things that can ease symptoms (example i couldnt stand light so my mum put a very low wattage red lightbulb in my room - the sort you use for a fire glow) so at least i still had the option of seeing something - also accept you will never understand unless you have it, the best thing my mum ever did was be there for me. and when i had a good day she would always let me do whatever i wanted - i used to really look forward to whatever it was and have very fond memories - i think the worst thing you can do is keep nagging her to rest or asking how she is - be positive and concentrate on the good times and have fun. dont dwell on what symptoms she has or hasent got - look forward to the 'good' days and make them special - even if its only something like having a picnic in your back garden!

i think shes doing brilliantly for going to work - you have to be a fighter, its the only way ull make it, good luck, and remember she WILL get better, even though she will never be 100% she will beable to live a normal life just like me xx

Hi - my 18yr old daughter was diagnosed with ME a few months ago, after a long time with us all puzzling over how she could sleep so long! It was explained as a condition where her cells should be recycling energy 2 or 3 times, but in fact only use it once. The body kicks in with adrenalin to keep going, which is why she then can't sleep at night because her brain is awash with stimulating chemicals. Apparently ME sufferers don't get deep sleep either, so are not refreshed by however many hours they sleep. So, she gets what they call the 'boom/bust' scenario where she slowly builds up strength and has a couple of relatively normal days, and then crashes completely for another few days. We had to wait 8 months for an appointment with a specialist occupational therapist. The advice so far is to 'pace' ie rest for 10 minutes every hour, with no stimulus at all for that time. My daughter has gentle music on her mp3 to listen to so she can just switch off. The idea is that the adrenalin won't then be needed so much, and the cells will be kick-started to working properly.

We're all still new to this, but understanding the mechanics of it has helped a bit.

I know exactly how you feel though. I just want to be able to wave a magic wand and make it all better, and it's difficult not being able to see the light at the end of the tunnel - if it was a broken bone you'd know it would mend eventually. The best thing I can say is to not be hard on yourself - you can't be superwoman and your daughter will know you're doing your best. I think we're both at a hard stage at the moment because everything is new and unpredictable. Be kind to yourself, and resist the urge to feel responsible for everything - yeah I know it's easily said than done, but we'll get there in the end! Take care. Looking forward to hearing how your daughter gets on.

I had Glandular Fever aged 20 while at Uni, I struggled through going in for a couple of days and then sleeping for 15 hours a day for the following few days. Had no support from GP at all. I started doing small walks about a year after my Glandular Fever, building up my time and eventually went to the gym which helped building up from a 10 min cycle to a longer workout over a year. I still found I needed a lot more sleep/rest (lying down in a quiet room for half an hour helped when exhausted). 10 years later it has affected my working life as I still get ill a lot with viruses and get very tired, but I manage myself better and know when to stop. The thing that helped me regain my strength after the initial work at the gym was Hatha yoga and chi gung as they are both about breathing and slow movement, they also open the meridians that acupuncture works on to help lymphatic drainage.

I worked on a daily temporary basis for a while so that I could choose not go in on a day when I feel really awful and although I wouldn't get paid at least it isn't a problem with the employer. I also found funnily enough that getting pregnant with my DD helped it was almost as if all the human growth hormone stimulated my body into doing more of what it should be doing. Obviously the lack of sleep does have an impact, but 10 years ago I couldn't have dreamed that it would ever be possible for me to have a family as my cycle got all messed up too. It will get easier to manage and she will with time get better, just take it slow.

Hi, I had glandular fever at 15 and I struggled until I was 20, 21.

I think looking back I had a form of ME but it was never diagnosed.

I struggled day to day with exhaustion. I had constant relapses of virus, swollen glands etc. A cold would put me in bed for 3 weeks.

By the time I was 21 I got my life back and became an addict of the gym and fitness. I think this was due to appreciating my new found energy.

Im 34 now with a 3 yr old and 1 yr old. After having my 1 yr old I felt terrible with exhaustion and it reminded me of when I was younger.
It turned out to be an under active thyroid which has been easily treated with medicine.

I feel fine now. I just wanted to let you know I did struggle after GF but did get back to normal eventually.

I hope your DD will recover fully in time as many people do.

My sister had ME for several years as a teenager & later. She has thank goodness made a pretty full recovery. She'll probably never be 100% but she is able to work full time (at a very stressful job!) and have a social life. Like your daughter she became very ill after glandular fever.

It was terrifying at the time especially whilst we were still waiting for a diagnosis - she was tested for leukemia, brain tumour, all sorts of very scary things.

In the end the only thing that she could do was to decide what she could spend her very limited energy on. She decided that her priority would be to miss as little school as possible. She had to give up almost everything else, and on the days she made it in to school she often came home, lay on the sofa for an hour, ate dinner and went to bed. No time for sports, music, socialising etc. I had no idea at the time how hard it was for her (I had always been fairly reclusive, she was more the team captain type!). By marshalling her resources in this way she was able to stay caught up and she did extremely well in all her exams etc.

I think it also helped her to feel in control. She didn't have the energy to do everything she wanted but she was in charge of what she did do - if that makes sense?

If your daughter's priority is to remain in work then I think you should support her in this (even though it may mean she can do little else) similarly if she decides that her priority is to be able to see her friends a couple of times a week, support her in that choice. Everyone has a different part of their life that they need to maintain 'as normal'.

Let her push herself if she wants to. My sister found it incredibly frustrating when my parents tried to stop her doing things because they were worried about her relapsing. I think there is definitely something in the boom/bust theory that Katie talks about above - but she needs to be able to make her choices herself. She may decide for example that going out one evening might be worth the days in bed that might follow.

Resist the temptation to 'baby' her.

Don't pin your hopes on the clinic etc having a solution. There really isn't much in the way of treatment available. It is much more important to support your daughter in accepting that things have changed but not accepting that this means a) she is powerless or b) that it will always be this way. A lot of people with very severe ME make a good recovery, even those that do not recover entirely get better at managing their condition.

There is not a magic thing to do or say. But you sound like a bloody good mum to me. Listen to her, and if possible find some support for yourself. You will work it out as you go along.

yy you will work it out as you go along.there is pretty much nothing you can do for this illness but rest and pace yourself as best you can.so don't waste money on any private practioners/alternative remedies etc - i have been there, done that and know of many others who have too.they don't work - i understand that there is an overwhelming feeling to try and sort this out and beat it but it really doesn't work like that.unfortunately there are no shortage of people out there ready to take your money at this very vulnerable and sometimes desperate time.
young people do stand more of a chance of a recovery so be there for your daughter when she needs you.good luck.

Hi Rhiannan here is a thread for mums who are looking after DCs with CFS/ME

We are a very supportive group and are at various stages of the journey, but come and ask any questions, or just to say hi and we are here for you.

Here, 3 years ago DD3 was an energetic teenager, she swam for the county, training from 6am before school in the mornings, cycling regularly, always out with friends. She had a virus, which we later found out had been glandular fever, which then led to CFS/ME. She has been severely affected, but is now improving.
You are not alone.

Sorry, in a rush now, but will read through in the morning.

My cousin had ME very severely in her early 20s. She was bedridden for nearly a year, but 10 years on she is a successful writer and travels abroad a lot.

Things she found helpful:

Not fighting the condition. Accepting it, understanding that it is a long-term condition, but believing that it will be temporary and she will eventually recover.

Taking good multivitamin and mineral supplements. She took a cocktail of supplements (under the guidance of a good alternative nutritionist) because so often she was just unable to eat.

Treatment for depression. At the time she took Prozac. She now wishes that CBT had been available as well, as she has still had to have therapy to recover from the depression caused by her physical illness.

Following the 75% rule: only do 75% of what you think you can do, and stop before you are tired.

Power-resting: taking a total break after every activity, or every hour or so - even if all she had been doing was lying in bed. A complete change from the previous activity, and involving closed eyes and maximum physical relaxation. When she felt up to it, she took up yoga, and found it very helpful.

It's a difficult condition, but most people recover eventually. You both need self-belief and an open mind. My cousin said that recovery was like a very slow dance: 2steps forward, 1 back, and sometimes a surprising 1 to the side as well.

So good to see so many helpful messages on this forum - ME is a horrible illness and I was so very severe for so many years but, like many others here, I learned that where there is no anti-viral treatment to zap the bug, the body just has to heal itself, and looking after yourself carefully with plenty of rest - in a word, convalescence - is a safe way to handle it, unlike many so-called 'treatments' out there. There's lots of info about young people with ME at www.tymestrust.org which is all free, and which can help people to plan their lives. I do hope things go well for you and your daughter.

DS is 13 and has been ill with CFS officially since Sept 11 and was really ill with virus since MAy. He got better , managed 1 full week at start term and has barely attended school and thus not managed the p/t timetable.

I have got an education welfare officer coming to see me and I feel really worried and quite upset about this. What experience have other people had with a welfare officer . What am I to expect? Also my GP suggest him going to CAHMS and I have said no and she clearly was not happy with me. But he hasn't got a mental issue, he is desperate to have a normal life, go to school, play with friends etc etc - it is the fact he feels so ill that is the problem.
Has the same happened to you - what is you take on it. I really need advice urgently.
Many thanks

Anybody with a child with CFS/ME about to take gcse's?

Hello,

Just wanted to let you know, should you be interested, that Jane Colby of the Tymes (The Young ME Sufferers) Trust is having a Q&A on Twitter today, from 4pm, to mark their annual Young Hearts day. You can reach it here: twitter.com/JaneCColby

Hope it's of interest

I had it for several years and offer my sympathy as it can be very disheartening and difficult to live with. Eventually I had some food allergy testing done and found out I am intolerant to gluten and dairy, among other things. I changed my diet and am better now - it's worth looking into because I can now work full time and live a normal life.

Please allow CAMHS to help- things like CBT can give coping mechanisms, and they will support you with School and the EWO. X

Hello,
My son has been diagnosed with ME in December 2014 (triggred by a virus), he is 11 and the recovery is very slow. We have followed the usual advice (pacing activities, cognitive therapy) but very slow improvement. Has anyone found anything else since the last postings? My son is getting very upset about not being able to go to school and it is heart-breaking not be able to do more for him. We keep positive, we know it will get better but it doesn't make things better for him. Thanks for any new info.

Best wishes
Patience

Hi all, I am a complete newbie to this. So please forgive any mistakes I make!!!!
I am in a black hole, a constant maelstrom of worrying, feeling guilty and just plain sad. My daughter was diagnosed with ME in April this year. She made a steady decline from Sep.last year. She was a normal 13yr old, doing very well school, happy, lots of friends etc. She was always laughing. Well that has stopped now. She is constantly nauseous, in chronic pain, exhausted, unable to walk at times. I have to do her personnel care. When she was diagnosed the consultant told us about pacing, he sent us away after a 10 minute appointment saying that there is no help out there and do the best we can. Be positive. Yeah right. I am a Mum of 3 with experience but I am lost in this.
Well I ignored the consultant and started phoning around for help. We did get it, my daughter currently sees psych, OT and PT. My daughter has now got so bad that she is going into residential. It's all happening very fast.
I read some of your posts and felt inspired to post. You guys all sound amazing and its strangly comforting to know we are not alone.
I adore by beautiful daughter but she is fading before my eyes, it makes me feel distraught. I thought I was strong but it appears I'm not. My middle Son has complex special needs, I thought there was nothing else that could be thrown my way but hey no, sorry this is sounding like a poor me!!! I promise my girl always comes first. Anyway gonna finish my novel, sorry for going on. My girl is calling.