Help and advice please

My daughter who is 15 years old has been diagnosed with fibromyalgia, it took years before we got the diagnosis and Sophie has missed so much school due to illness, she has been receiving home schooling which is going very well, the doctors seem to think Sophie will be ok to go back to school but we are horrified at the thought, I know we have the right to home school ourselves but I suffer with MS and my husband works long hours, money is also a issue for us and I was thinking of asking for DLA for Sophie to help us with private tutors, if anyone can advise us we would be so grateful

Thank you

Jacquie & Sophie xx

8 Replies

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  • Sorry as I cannot advise on this but surely if your daughter is disabled you should be able to claim some sort of benefit. I would suggest contacting your local CAB office or the benefits advisor on FMAUK xx

  • I am so sorry to hear about Sophie. My daughter was diagnosed 18 months ago. She is now 18. It is awful to have this so young and I really feel for you both. Are you under paediatric or pain management? I would really push for pain management. What meds have they tried? Abby has not had any success with anything other than tramadol and this knocks her out and loses effect if taken regularly so she just uses it when she is really bad or goes into spasm. But others find medication does help more.

    What parts of her are affected and does she get flare ups? Abby's is constant. Does she have any other symptoms as well as pain?

    Abby finds that heat helps. We have bought electric heat pads which she uses. We buy Linnex which is a heat stick that you can rub on, it's a bit like a deodorant stick and is only available on the internet. It is expensive but you only need a tiny amount so,lasts ages and it does really help her. The web site is Linnex.co.uk. I have had it checked out by her consultant and it is safe.

    I also give her a massage every evening which helps her to sleep and keeps her going for a couple of hours the next day. She attends college for about 2 - 3 hours a day and has a much reduced timetable. It.might be worth sophie reducing the number of subjects she is doing and attending part time? Abby is doing her a levels over 3 years. Are her school supportive?

    Has she tried physio or hydrotherapy?

    Did the symptoms start after the Ovarian cancer jab? There have been reports of this causing FM symptoms. I don't think it was in Abby's case though.

    I really hope you find something that gives her relief.

  • Hello Jacquie and Sophie and welcome to our site. We are a friendly bunch who offer support and advice with a bit of a giggle too.

    I am sorry that your illness has taken so long to diagnose Sophie, it must have been a very frustrating time for all the family.

    I don't know whether you know much about Fibromyalgia but our mother site is brilliant for information and can be found at fmauk.org

    FMA UK have a dedicated benefit helpline, you can ring Janet, or email her for help, advice and assistance:

    FMA UK Welfare Benefits Helpline

    Phone: 0844 887 2450

    Fax: 0844 826 9033

    Link To webpage:

    You can send an email from this page: fmauk.org/contactsmenu/help

    If you need any further help, please contact anyone in Admin who will be more than happy to help you.

    I would also advise you to find out more about home schooling from your local education authority to see if they would pay part or all tuition.

    The Citizens Advice Bureau is also very helpful and discreet, and there may be a local Disability Advocate in your area who could help you.

    I would suggest that you lock your post. This is because your post can be seen by anyone on the internet who googles your username. Your private and personal information you write about family or friends can be seen and is insecure. It also means that any replies you receive are also unlocked and that puts off members who would have contacted you.

    If you go to the Pinned posts on the right hand side in blue and scroll down, (you may need to scroll down view more) you will see more posts on how to lock for future reference.

    If you go back to your posting box and scroll down you will see a little v. Click on this, then click on Edit. Click on this and then "Only followers in my Community" (Hidden Posts) option.

    This will lock it and lock any replies you have been sent.

    You will see many members posts have a little padlock alongside the title which means it is locked. Unfortunately you cannot tell from the Home Page which posts are locked until you go in them.

    We do take personal security very seriously on this forum and that enables people to seek advice or support safely.

    Many apologies for the long post, hope to see you around the forum.

    Xx

  • That was very kind bluebell

  • Hi Jacquiefripp

    Welcome to the forum and it is wonderful to make your acquaintance. I am so genuinely sorry to read that your daughter has Fibro at such a tender age, and I am so sorry that you suffer with MS, as does my dear lady wife.

    The GOV.UK website has a cache on home schooling, so I have pasted you a link to this below:

    gov.uk/home-education

    I have also pasted you a link for a post code finder to get information from your local authority as well:

    Home education: get information from your council: gov.uk/home-schooling-infor...

    I want to sincerely wish you all the best of luck, and pleas take care of yourself.

    All my hopes and dreams for you

    Ken

  • Hello and welcome to you. I really cannot add any further information than already said, but I do feel for you and your daughter and of course your hubby and hope that we shall hear from you again....xx

  • Hi, it might be possible to apply for an Education, Health and Care Plan. This is for children with health problems or learning disability that require extra support to access their education. I believe you can make the application yourself but you would need to google to find all the information and whether it would be possible. Just wondered if it might provide extra help for home schooling or support to get your daughter back in to mainstream. Not sure if she would qualify but might be worth looking in to.

    Hope this helps, gentle hugs, Steph

  • Hi there

    I can see that you have received some great replies so I just wanted to say that DLA has now been switched to PIP Personal Independence Payments.

    I have locked your post for you so that it stays within the confines of our forum.

    I will pop back and give you a link so that you know how to lock posts for future reference.

    Wishing you the very best of luck. It cannot be easy for you coping with all this whilst suffering yourself from MS.

    Lu x

    Admin

    ** Here is the link I promised you:

    healthunlocked.com/fibromya...

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