Advice and help needed ASAP

Discussion in 'Fibromyalgia Main Forum' started by favershamgirl, Sep 5, 2005.

  1. favershamgirl

    favershamgirl New Member

    MY daughter is showing all the classic signs of having CFS and I feel so ignorant as I don't much about this illness although I have FMS and I know that they are similar.

    She is nearly 16 years old.

    The deputy head at her school has been most helpful as she has a daughter with CFS and has advised me alot.

    However I am still ignorant (or feel it) as well as helpless!!!!

    My daughter gets so tired and drained of all energy that she nearly passes out....is this normal for this condition.....she gets so upset when this happens and I am at a loss at what to say or do....... it has happened today so i have just put her back to bed......

    Please help me can anyone tell me whether they have these types of turns and what else I should be looking out for where CFS is concerned.....she has hospital appointment in two weeks and am logging as much as I can and have got other things checked out...i.e. her eye sight is A1 so they can't say headaches are from eyestrain.......

    Any help, advise will be most welcome....please treal me like an idiot and tell me it all.

    Thanks very much

    Caroline
  2. smiffy79

    smiffy79 New Member

    at 16 i had fms/cfs and raynauds and all i was being treated for was the raynauds as thats whats visible.

    you have seen it and are dealing with it plus you have what sounds like a great and supportive headteacher which is gr3eat.

    FaMily magazine have just run a series on cfs and school managment which was really good to read and made me wish i had the same support.

    FaMily magazine is published by www.ukfibromyalgia.com if you are in the states for a 12 month subscribtion of the mag plus home delivery it will cost £31.50 when you have your subscribtion back issues are only £1.85

    the mail address is UKFIBROMYALGIA
    7 ASHBOURNE ROAD
    BOURNEMOUTH
    DORSET
    BH5 2JS
    10% of all revenue goes straight to fibromyalgia association uk the registered charity for fm/cfs sufferers.

    i hope this will be of some help. all you can do is to steer your daughter towards pacing herself,when she wants to go out w/her mates rest up in the afternoon when the homework is done.

    teach her not to spread herself too thin but she can still have a life and be a teenager.
    shes wanting to go out get drunk and try and stand up as if sober when she gets in play music loud and headbang (iron maiden run to the hills is good)

    do try not to worry. i was alone in my illness and had no support until i hit 22/23.
    your girl has everything to be happy for.
    shes still a teen with a wonderful caring mum and a supportive school.

    enjoy your time together by pacing and not letting fm/cfs control your lives.

    tc.smiffy
  3. Smiffy

    Smiffy Member

    As I understand it, rest in the early stages & a sympathetic doctor are the two things that research has proved prevent ME/CFS from becoming severe & life-long. The use of Graded Exercise Programmes has been found to make many sufferers worse.

    I used to have the turns you described when, as a single parent with a toddler, my GP refused to sign me off work from my teaching job because 'there's no such thing as ME (CFS)'. My condition became severe with fibro, & has remained so.

    There are many treatments listed & described on the Remedyfind site, with sufferers evaluations of their usefulness.

    with best wishes to you & your daughter.
  4. NyroFan

    NyroFan New Member

    Caroline:
    It sounds like you are giving her all the love and care in the world. Some parents would not be as understanding. Until she gets proper medical care: that love and understanding will be good medicine.
    NyroFan
  5. favershamgirl

    favershamgirl New Member

    Thank you all very much for all the support and advise you ahve all given. My daughter gest so tired and suffers headaches quite a bit and I feel so helpless.........
    I will be researching more as want to help her or find help for her as much as I can.

    Please keep the advise coming in and I can't have too muc of it.

    Thanks again

    Caroline
  6. karatelady52

    karatelady52 New Member

    I'm with Hangininthere. I've been sick since I was a teenager (am 53 now)and just this year was diagnosed with Lyme disease, Epstein-Barr (what use to be mono), CMV and Claumydia Pneumonia.

    Viruses were not on any doctor's list of things to check for in all the years and many doctors I went to.

    In my humble opinion, I believe there are reasons for us having FM/CFS. There are root causes whether it be chemical overload, toxins, viruses, bacteria, heavy metals, etc.

    It reminds me of the time I had a scope done on my stomach (actually had it done twice) and the doctor called it non-specific gastritis. He didn't know what caused it, he never even mentioned candida yeast so I went years and years with an upset stomach.

    That was one of many of the symptoms I had since my teens. I also went to many doctors for heart, allergy, sinus, tiredness, pain, stiffness, I can't even remember them all.

    You can save your daughter years of suffering by finding a doctor (the Fibromyalgia and Fatigue Centers are helping a lot of us on this board) who will test for these underlying problems.

    Sandy

  7. Pianowoman

    Pianowoman New Member

    You have had lots of excellent advice already. I would like to reinforce a few things. First, pacing and lots of rest is soooo important. There is research that shows that if you really pay attention to this in the early stages, you can avoid some of the problems that we 'long-termers' have. This will be hard for a teenager and it may take many months but it is crucial.

    As has been said, your Doctor needs to rule out a whole list of other possible causes. You, your daughter and the Doctor need to be partners.If you find that he/she is not sympathetic to what might be going on,keep looking!

    All the best.

    Kathy.

  8. meditationlotus

    meditationlotus New Member

    that she could have hypoglycemia, which is low blood sugar. Eating sugar will only make it worse. She would need a high protein diet. Hypoglycemia is aften seen accompaning CFS. bEST OF LUCK.
  9. favershamgirl

    favershamgirl New Member

    Your support is over whelming and most welcome...... My GP has ruled out the common things like diabetes, thyroid problems, low blood sugar, infections, leukemia, all blood tests have come back normal and they have repeated them a few times to ensure that there haven't missed anything.

    I am hoping that the hospital will be just as thorough but more in depth as don't want her "laballed" with something if it isn't that..... it is so frustrating for my daughter and me...it hasn't helped that my mother and sister have insinuated that she is a school phobic and that there is nothing really wrong with her....... they are both nurses too!!! But she has been ill during school holidays too so I know that they are wrong.

    It all seems to have started 2 years ago she had a stomach virus falled straight away with severe flu...no time to recover inbetween.......... she has struggled with lots of dufferent spouts of illness since then..... my previous doctor said she had "end-of-term-itis" or "beginning-of-term-itis"........ other words sciving !!

    I school believe with me that there is something wrong and they have taught students with CFS before.......

    I have fibro and know the frustration of not being believed, or suffering in silence, or being confused and worried....it was a relief when I finally got a diagnosis........ and I want this for my daughter a shalf the battle is knowing what is wrong......

    We will continue and I will keep you posted..

    Thank you for you continued support...

    Caroline
    [This Message was Edited on 09/07/2005]
  10. mars_xmu

    mars_xmu New Member

    To cure CFS you need to get the proper tests done to find out the cause. The UK is not very good for info, and the associations just perpetuate that it cannot be cured. Go to the Bant website at www.bant.org.uk and type in CFS in the search bar for your nearest registered nutritionalist,
    they can order all the proper tests.