My teenager has just been diagnosed. Please help me!

Hello All!

I am a newbie, 43 year old mother of 3, please be gentle :o)

My beautiful and once very healthy teenager has spent the last year with weight loss, hair loss, severe muscle pain, Reynauds disease, exhaustion, eratic and havy menstrual cycle, back pain and nausea. After hundreds of blood tests she was finally referred to a rheumatologist, who matter of factly diagnosed Fibro. I still dont really know what "it" is, how I can help her (they said she needs 50,000 units of vit D for 8 weeks and hydrotherapy). However, she is still having to take time off of school and is having to re-sit a year to do her A levels. As you can imagine, this is becoming dpressing for her as she has days where she has to miss seeing her friends and has to give up tickets for events because she is so ill.

In the meantime I have deferred uni halfway through my degree and had to give up my job to look after her.

Firstly, and most importantly, can anyone tell me if they know of a teenager with this? It always seems to be older people. Can you tell me how they coped?

Secondly, what do you do to stop it? Especially the exhaustion and pain...she is going through pain killers like smarties :o(

Thirdly, is there any governmental financial assistance I can claim for her? the extra petrol on its own is costing me a small fortune, not to mention giving up my job.

I feel very isolated with this and could do with any help you can offer. Thanks xx

13 Replies

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  • Im so sorry this has happened to your daughter, you must be heartbroken,but there is help out there if you know where to look, so first things first

    1 apply for dla

    2 phone you local authority for an OT assessment

    3 phone, social services for an assessment

    4 try to get in touch with your local carers

    5 find out as much as you can about fibro, this site is excellent

    6 find a gp who ll help, try different meds

    7 has your daughters school got pasteral care, they re a great help

    I was diagnosed a few months ago, the rhuemmy thought Ive probably had it for over 30yrs, so Id have been in my early 20s, in that time Ive had 6 children, lead an active life, yes Ive an the pains and the fatigue but Ive managed some how,I know sweetheart how you feel isolated my family felt the same in the last 3 yrs when I started to get worse

    If theres any way I can help pm me

    Pauline

  • Thank you so much. I am also ashamed (although I dont know why) to say i have Bi-Polar disorder and am wondering if the stress of her worrying about me has caused this in her?

    I am so upset today I feel suicidal. I feel like it is all my fault.

    I have no idea how to apply for DLA or get OT help. The school dont understand Fibro and are therefore not very supportive at all. The doctors surgery are all fibro sceptics it seems, but her consultant said she has classic symptoms and there is no doubt whatsoever?

    She has had 2 days off of work experience and gone back today because she feels guilty but is telling me that she is in so much pain. Im distraught.

  • don't let yourself think like this, you are obviously loving and supportive and she would be struggling a lot more if it wasn't for you. medical professionals can be a pain, try and research and suggest treatments yourself, maybe try to get a referral to guys hospital London where they have a fibro clinic, if you don't live too far away. it is not your fault, stay positive and strong x x x

  • oh sweetheart Ill try to help, have a look at your local council website there youll find your adult or maybe child social services ask for an assessment, then ask for a carers assessment for you,dla phone number is 08457123456, you might need to change gps to one that understands, dont blame yourself , love, these things happen if I can help in any way I will

  • Information on Benefits:

    direct.gov.uk/en/MoneyTaxAn...

    Further information, including organisations that specialise in benefits support:

    fibroaction.org/Pages/Benef...

    I would suggest you contact The Carers Trust, which exists to help unpaid carers like yourself:

    carers.org/

    Some of your daughter's symptoms (weight loss, hair loss) do not fit in with Fibro. They may be linked to the severe vitamin D deficiency, though weight gain would be more typical with that. These need checking up on and following up on. If all the sensible blood tests are currently normal, her doctors may well need to wait until the vitamin D deficiency is corrected before exploring these symptoms further if they are still there.

    Fibro can be managed, but accurate & comprehensive diagnosis is critical - if you don't know exactly what is causing which symptom, you cannot target treatments. Many people with Fibro have other conditions as well as Fibro, and even if they are typical with Fibro (e.g. hypermobility, IBS, myofascial pain, etc) they may well need different treatment.

    I was 20 when I had the car crash that triggered my Fibro, so a little older. I had a tough time getting diagnosed and it then took me years more to access effective treatment. However, my Fibro is now effectively in remission (I'm now 31).

    Feel free to contact me via email (info@fibroaction.org) so we can go into what has happened in more detail offline if that would help.

  • Hello. I am 20 and have suffered for the last 9 years. It is difficult but your daughter can still achieve things if she learns to pace and listen to her body. my social life isn't amazing, I spend time with friends while resting etc but i am at university studying chemistry and just passed my second year with a first. your daughter like me is lucky to have a caring mother. feel free to message me or for your daughter to message me to ask any more questions, I know a fair deal about benefits etc as well as things relating to disbaility and young people

  • Thank you all so much. I am overwhelmed at how supportive and kind you all are.

    Ok, so after having SEVERAL blood tests, the consultant endocrinologist said that her thyroid was over active hence the hair and weight loss. That has now recovered, but there were still vit D deficiencies and she was referred to the consultant rheumatologist who went through pages and pages of symptoms, bloods etc etc, then gave her a lengthy physical, asked loads of questions and then casually said she had Fibro and gave her a leaflet with old people on it. Then another blood test and then the prescription for vit d and a suggestion of hydrotherapy.

    There is an American doctor on YouTube that talks about Fibro and AutoImmune diseases and many of these symptoms resonate with me about her.

    On another side note, my own bi-polar has hit an all time low for the past month and I have just returned from the doctors. It is like I am her carer and she is mine. I am sure that stress triggers Fibro off and is making her worse.

    I am going to try some of the numbers you suggested, thanks so much..

    In the meantime - have you found certain foods work? Or make things worse. Since her thyroid has rectified she has certainly put on weight.

  • Just wanted to give my support. My Fibro did not start until my early 30s.

    Keep on asking for help, if refused ask if they know anyone else who can help.

    With regard to certain foods making it worse your daughter should keep a food diary. She should also learn not to spend all her energy in one go, pacing does help.

    Hot water bottles can be very effected against pain.

    Yes stress makes the pain worst, try reading funny stories, watching funny films or listening to funny radio shows. Also learn relaxation techniques.

    I have been feeling much better since I increased my Vit D intake. Two years ago I used my life saving to go abroad (Malta) for a month in the winter, the gentle sunshine I felt wonderful would love to make it permanent.

    Eating more protein and less carbs also helps me, however my thyroid is underactive.

    I believe there is a group for young people with ME which many people think is connected to Fibro, just a matter of degree.

    Finally look after yourself as well your daughter needs you to be as well as you can.

  • Hey Jack

    This is such a positive message, thank you so much.

    I am wishing all of you that have responded so quickly and carefully a great day. i will be back to let you know how I get on.

    xxx

  • I am also a teenager suffering from raynauds and fibro, its hard :/ There isnt much you can do however I have just been told by my specialist to stop akimg pain killers and cut out caffine as i use to have tablets like they were sweets too. Everything I have tried to help me hasnt worked going to be honest with you. Have good days and bad days :/ all you can do is understand my parents and boyfriend are very understanding and that is the only thig that helps, i im having a flare up they know to be gentle and help when they can. I am also just starting on anti depressants this week as with me being depressed because of fibro and feeling as though im missing out on life and being stuck in the house, apparantly feeling sad makes the pain worse so hopefully when yhese anti depressants kick in i will feel a little better. Good luck to your teenager and see he doctor about the anti depressant given to teenagers with fobro. Xxx

  • Feel free for you or your daughter to email me on kayshasmith1@live.co.uk or on here if you have any questions or would just like someone who understands to talk to :) i know what it feels like and it isnt nice xx

  • Sorry about the spelling im on my phone lol x

  • What a wonderful young lady you are. Thank you, thank you, thank you!!! Can you tell me if you are having any other treatment? Or meds? What about pain relief, what works for you?

    Wishing you well xxxx

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