11 yr granddaughter diagnosed with cfs

Hello I haven't got ifs myself ,but chronic pain. My daughter was diagnosed with Non Hodgkins Lymphoma when she was 28 yrs after that with Scrogens syndrome, then Fibromyalgia, and Cfs. She is now 39 yrs. She has two children the eldest being 11yrs whom has just been diagnosed also with Cfs. She is at the moment going to school for 1 hr maybe 2 hrs a day if possible,which isn't always. She gets very weak and dizzy and her legs hurt her a great deal. She gets very fed up with being at home but doesn't want to do much. This is very difficult for my daughter who finds it hard to cope with her own illnesses..Is their any help do you think she could get. Also do you you know if there is any website where my granddaughter could maybe find some friends to email ,who are in the same position as her just to talk about girly things in general . Thank you for listening Maureen

8 Replies

  • hi , there is a website called ME SPACE, I'm sure it's for younger people with ME, also there is a group called AYME, which give good support for young people with M.E.

  • Hello ladybabe, thank you for your reply. I will check both those groups out . Maureen

  • There is a website called ME SPACE which is suitable for young people with M.E, also a group AYME, which gives advice to young people with ME.

  • Hello Maureen :)

    I'm sure there must be some help available for both your daughter and granddaughter. I'm 35, and was diagnosed ten years ago. My husband is my sole carer, but having his own health issues it was becoming increasingly difficult for him to manage alone. We were put in touch with social services who, after an assessment, offered us the choice of having someone come in to help with my care, or someone to help with the domestic chores that my husband was not getting time for.

    I think with your daughter's situation being so much more desperate that she would be entitled to similar help.

    Hope things get a bit easier for her and the little one soon.


  • Hello Jazifox. Thank you for replying to my message. I have passed the information to my daughter. She gets disability benefit also mobile allowance low grade. Also she has someone cleaning half a day a week. I don't think she would get any more help in that department. Take care. Maureen

  • My daughter and I both have ME/CFS, my daughters started when she was 7 and got much worse when she was 11. Your description of your granddaughters problems match my daughters exactly. The dizziness is likely to be POTS and I suggest reading up about that. My daughter found gentle massage helped the leg pain, painkillers didn't work very well but low dose amiltriptyline did. My daughter didn't start this medication until she was 16 so I am not sure at what age doctors would prescribe it. My daughter stayed in main stream schooling by doing 1 lesson then going to sleep in the sick room for the next, then back for another lesson. It is so important to get the pacing right, 20 minutes was the maximum my daughter could do at any one time but if she kept to this, resting for an hour after the 20 minutes, she could get quite a few good 20 minutes in the day. Resting properly is the key. For my daughter it has to be lying down (maybe something to do with the POTS), listening to story tapes from the library helped, however it is important that your granddaughter sees rest periods as a positive thing otherwise they don't work, as lying there being fed up and unhappy doesn't recharge the batteries properly. mhttp://www.bbc.co.uk/radio4/science/casenotes_tr_20071106.shtml is a transscript of a radio program covering children with ME and pacing which I found particularly useful.

    There is an ME association for children tymestrust.org but I have to say my daughter didn't ever have much luck establishing links with other children through this. My daughter is now 21, studying at Cardiff University and sharing a house with friends. Nothing has been easy, she still only has 2 -3 hours energy a day but she is happy and living her life the best she can. Please feel free to contact me if I can help in any way .

  • HelloCalliepet .I'm so sorry to hear of you and yourdaughter,but glad she has been able to go university.You and also her must be very proud of what she has achieved.Well done. It was interesting to read about POTS and something to bear in mind. I'm a bit worried about the websites for children, as it sounds quite frightening reading such sad stories although I know it is fact. It could be worrying reading that it could get so much worse.Take care both of you.Thank you for your help. Maureen

  • We think my daughter got worse when her hormones kicked in (We both find our ME/CFS is worse at certain times of the month) since then she has only ever improved. If you can get the pacing right life gets an awful lot easier. I mentioned the POTS as a lot of people have had great success simply by wearing good quality compression tights. It is nice to have something you can address without medication. It is probably also my own guilt. My daughter used to get up from the settee, walk into the hall and then say "oh dizzy" and collapse on the floor - I thought she was messing about - I am not willing to admit to how many years this happened before I realised she was serious. It is not a symptom I ever had so I didn't understand that it was a common symptom for many ME/CFS sufferers.

    I was told that children do have a much better chance of recovery so fingers crossed your granddaughter may be able to get back to a normal life soon.

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