Advice needed about ME chronic fatigue syndrome

Hi I am new to this site. My daughter has cfs/ME. You didn't say how old yours is but mine is 14. Got diognoised August 2012 after a couple years of headaches. She had an injection in school for the hpv jab and after this seemed to get much worse for example falling asleep all the time, constant feeling sick and muscle pain there don't seem to be much help and people do not understand how hard it is to live with either and as it can't be seen apart from the fact that they are very pale and look tired. It is also connected to fibromyalgia. My daughter has hypo mobility syndrome which is also connected so our clinic tell us. I suggested to the hospital about this condition after lots of tests coming back normal and they preferred us to a clinic that deals with just this.

Hi I posted on here as a newbie also as desperate re my daughter . She is also 14 years has been ill since having the injection also . She has a small lipoma in the corpus collasum and at first all drs thought this could be causing all the symptoms she has . This has now been said the lipoma was a coincidental find and is not causing all her problems . Few weeks ago the paed said she was more then positive my daughter does have ME but untill we see a paed who specialise in this area we have to wait for a diagnosis. This is so frustrating as she has constant headache tired all the time unable to concentrate at school and feels to ill to go and her legs constantly hurt all this for 18 month so really hoping to get somewhere when we see dr in August x

It is a complete nightmare as a parent isn't it. I hope you find answers we just get a lot of the clinic saying even on a bad day we must attempt school no matter what, but sometimes I wonder how to actually get herthere. She don't sleep well at night now, which is more of a new thing since the clinic said we wasn't allowed to let her sleep daytime daytime anymore. Don't you find people's reaction to them makes it worse for them to feel accepted as well. I just found an nhs site that explains condition really well I'm going to print leaflets and put them about I'm so fed up with people thinking she just hates school. Do you find this as well? It is so nice to find somebody going through the same thing and I'm convinced the injection was to blame, she only had two instead of the three did.your daughter have.them all?. Take a break published a story of a girl same age as ours once had injections didn't get up.for 6 months. It all so worrying x

Have patience it could take time to diagnose ME. I'm an adult who was diagnose 21 years ago after many tests came back negative. They will get good days and bad. The hardest thing is to learn to live with your limitations compared to what you used to do. The main thing is dont over do things as it will make them worse. Good luck in getting diagnosed.

Hello ALL

I am rather cross it has taken me so long to find this discussion but none the less hope some of my contribution will help some of the young people. I am a mother who has experienced most of what you all have too and I am happy to share my experience. At its worst my daughter could not walk or talk.

i have no idea if it will work for you but ITS DEFINITELY WORTH PURSUEING FOR YOUR LOVED ONE. my daughter was off school for 7 months and even now she is only able to attend for a max of 2 hrs per day a significant ipmrovement from not being able to attend at all. she is 16 and has managed to sit 9 GCSEs this june. i found spending tme with her myseld and caring for her myself made a huge difference in the speed of recovery. She has gotten much better.

The spark is back as well as the positivity. She has to pace herself but she is motivated to leave the house and enjoy life. We changed our diet. Do message me. I am happy to share my experience and hope your sons and daughter get well too. Most importantly NEVER GIVE UP! You must keep fighting and knocking on doors.

Thanks

Bigfutkenny

Emis Moderator comment: I have removed the email address as we do not publish personal contact details. If users wish to contact each other out of the forums please use the private messaging service.

I can't emphasise enough that ME/CFS takes time to diagnose. Now, in my late 60's, I had to stop work aged 50 and I had been doing my job badly for many years before. I was only diagnosed when EVERYTHING else had been tested and only then was CFS considered. It is a syndrome - a wide collection of associated symptoms with no one cause or cure. Some people get worse, some get better. Some, like me, just keep on going. It is difficult to describe what it is like. You can talk about the pain, the mental confusion, to light headedness and above all the permanent, total exhaustion which drains all motivation from body and mind. I control mine to some extent but I am not going to write an essay describing my symptoms and my inadequate responses because they would probably not be appropriate. Every one has their own collection of symptoms and their own responses.

If you are dealing with someone else, I can give you some general advice. They need your help, support,understanding and above all your patience. Don't tell them they need to get up and do things - they already know that. You are just making the situation worse. They are tired, miserable, ratty and impatient. When they snap at you, it's really irritation with themselves so try to understand and don't react. They need you to be calm and strong. To do this you need to remain calm, slightly distanced and above all don't you start getting flustered, stressed, angry and tired. That way, there will be two patients. Give your self distance, get on with your own life, take time off, away from the patient, find someone you can talk to, breathe deeply and laugh.

Hello all I've had fibromyalgia for 14yrs and have gone through every stage of this illness and I think I've accepted the fact that this is my life and try to do the best and enjoy when I can !!! But this last few months things are different !! I'm worse I feel as if I'm drowning in this tiredness !! Along with all my normal pain !! I feel as if I can't cope !! When I read about CFCs/me that's me also !!! So do I have both ? Or is this a new stage of fibro ???? I don't think that's the case because it's been so long !! I really think I've something else as well as fibromyalgia ??? Is this possible ? I hope that's the case or Ive gone back years in my understanding of my illness ? Can anyone advise me on what to do next ? I think my drs are fed up of me !!? On dr told me once that he doesn't like seeing me because he couldn't fix me !!!!!!!

All the best ! Bye xx

You've obviously got a really sympathetic Dr. there. Knows a lot about patient psychology, doesn't he? I met one like that some years ago.

As to your other questions, I am not qualified to give a scientific answer. I have CFS. I don't know whether it's possible to have both but going from my own experiences, I wonder if it matters. The symptoms are very similar with a huge overlap. Some recover, some don't. As you have suffered for some time, it seems that you, like me are one of those who don't get better. Remember this is an unqualified opinion. I know that painkillers are an option. I use them, but carefully as there is the danger of addiction. Things do get worse from time to time. The bad sessions can last from a few hours to over a year - no way to know in advance - just live through it.

For me, the most important part of your post is your attitude. You have accepted your condition and you live life the best you can. Please keep this positive attitude because it is the most important treatment you can have. Just don't expect too much from yourself. If you haven't got someone to share with I suggest you look around for some type of self help support group. Social interaction is also vital.

I hope this helps. Good Luck.

I was told about the Amygdala re-training. Dr. Gupta. It did work for me. I am bad again now, because due to a lot of work towards my daughters wedding I was not able to pursue it,but hope to try it again soon. Google it and all the best.

I was told about the Amygdala re-training. Dr. Gupta. It did work for me. I am bad again now, because due to a lot of work towards my daughters wedding I was not able to pursue it,but hope to try it again soon. Google it and all the best.

Hi there, I would also like to point you in another direction for a possible cause. My husband was always really really tired and looked pale and unwell and was eventually diagnosed with Coeliac Disease. It's worth reading up about it in depth to make sure your daughter doesn't suffer from that! The Coeliac UK website has a wealth of information. My husband had to cut out all wheat (gluten), barley and malt from his diet and has much improved since! We have to be very strict about his diet, which can be hard, but at least we can keep his condition under control like that. I wish you all the very best! (Even if your daughter doesn't have Coeliac Disease, I think it would still be worth to try and cut out gluten from her diet for some time and see if that makes a difference as some people can develop a gluten intolerance). Good luck !!

I wish I knew the name of the marvellous capsules. The only thing is I can't mix fruit with anything or eat it cooked. It will give me severe pain

i think it is so important to assume a family member might have cfs/me because the condition gets

so much worse if you fight it, waitimg for possible diagnosis rather than rest up, you really have to

self diagnose reading as much

as possible on the subject, I had my tonsils removed at the age of 31 and feel as though I picked

up the virus in or after leaving hospital (40yrs ago) at that time nobody had a clue as to what this

condition was, I had to take a few months of work with no pay, I changed my job

from working on building sites heavy labour to a self employed computer /machine operator

which saved me financially,

the best way to describe this condition is you are like a battery, which when it goes flat takes

time to re-charge,

back home if I pushed myself to hard it would take three months to recover,as I re-ajusted lifestyle

I could recover in a few days, I am suprised over the yrs to find medical workers with this condition

some days you feel good and push yourself hard, and the fatigue comes back with a vengaence

so a VERY careful excercise plan to keep mentally sound, and I feel I am back to 80% of an average

lifestyle, the summer is much harder to cope with, and holidays taking our young children away

really takes it out of you, on getting to train stations airports I tipped people to carry luggage

yet on trying a winter break taking the kids on a ski holiday wrapped up in the very cold mountain air

made me feel a hundred times better, I do not know why as mountain air in the alps can be very

poluted with vehicle fumes, I am to old to do this now and find cycling several miles a day on flat

roads quite easy, also a steady build up on a cross-trainer the best exercise, please keep off

any running type of program

wishing you all a full recovery