my daughter has fibro help!!!!!

Hi all ,my daughter has fibro and is so down .She is 18 and has been admitted to hospital twice in 2 months once when she had a lumber puncture. I did explain she had this but the headaches were so severe they thought it was a bleed on the brain.She has given up becoming a nursery teacher because she couldn't stand been round the children to becoming a hairdresser against my wishes ( only because i knew the constant standing would bother her more ) but at 18 its hard to advise even with fibro. At my whits end having a painful disabilty myself i do understand but she is so depressed and insists she will not become a young person relying on medication for the rest of her life what am i suppose to do HELP ANYONE PLEASE !!!!!!

15 Replies

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  • Welcome to the forum and i hope you can get your daughter on here too

    This is a hard blow for anyone so young , we do have quite a few young fibro suffers on here and their mums so you are not alone..... The hardest part about fibro is acceptance and grieving for the person she used to be. firstly if you can convince her to go to her GP the standard first med for fibro is an antidepressant there are lots of them about so its finding one that suits.. Once she has the right one it should work two ways one beating the depression and 2 scrambling the pain signals to the brain making the pain easier, if your daughter could just get these to start with once her depression has lifted a little she will find her life has changed yes, but it can still be good ... If you can get her that far she may be then willing to try pain meds if she needs them and her quality of life may well improve even more... It's not unheard of with the right meds and gentle exercise to actually go into remission as such I did for 7 years with just a few painkillers needed on bad days, but lots of people don't so please don't pin too much hope on that. on a positive note I met my OH after my fibro diagnosis and got married and have a son, yes my life was and is different to what I had planned but its still good and I love my life

    If you visit our website

    fibroaction.org

    There is lots of information

    Sorry you have to be here but glad you found us and hope to see you and possibly your daughter on here soon,,,

    VG x

  • Hi VG thanks for information but my daughter at the moment is on a fast track of destruction and i cant help her ,\she has had antidepressants but now refuses piont blank to take them she relies on paracetamol and thats it i feel for her so much i no all about pain and try to help and shes pushing me away she puts her heels on at a weekend and of she goes tryin to be normal as possible please someone help xx

  • hi dotty

    i am very sorry to hear the above :( i was diagnosed at 24 only 25 i am v depressed and really struggle but i am doing online learning when i can some days tiredness takes over other days mentally strained and i cant manage. i am becoming a counsellor prehaps an option for her i am the same as your daughter in the sense i am fighting back but sh needs to see bless her if the medications can ease her pain help her cope in anyway. if you or she wants to ever chat i check posts daily etc you can both pm me no problems xxxxx

    if u try cbt therapy v good. does she speak to a cousellor? x

    Kez x

  • hi kez no she doesnt have a Councillor shes against everthing i suggest these days she fighting me and the fibro but just hurting herself i wish i could even get her on here but she refuses dont no what to do anymore .x

  • Hi dottyboro,

    It's very difficult for the young - they automatically rebel against whatever their parents suggest - but this is normal.

    You are a mother watching her child suffering, and I can understand your need to do something quickly, but it will only happen when your daughter is ready. She is still in denial, and needs to work her way through that, but the one good thing about fibro is that it doesn't kill you while you're waiting.

    While she is fighting, and spending nights out in high heels, she won't do herself any damage - but the unnecessary pain might persuade her to take action sooner than later.

    Given the fickleness of youth I wouldn't think it will take too long for reason to click in.

    Stop trying to persuade her, gather all the knowledge you can find, try to locate a good rheumatologist and be well-prepared for the day when she turns to you ready to accept your help - and she will, believe me!

    In the meantime just be there for her, keep a cheerful face even if you cry alone, and look after yourself as well. She'll be OK in the end, so for now be calm and try not to get too upset.

    I'm sure that when she does get onto some treatment, she will improve quite quickly, so for now just try to accept her as the feisty and courageous girl she obviously is. She's bound to do well with her strong spirit, and such a caring mum.

    Take care

    Love Moffy x

  • thank you Moffy such a caring person as alot of people on here that's good advice although as her mother yes instinctively i just want to do what i can as quick as i can but your right she will only do it when she is ready thankyou regards dotty x

  • Hi Dottyboro

    Would your daughter try complementary help Bowen treatment is very helful for Fibro about six of my members have it and it works there are no meds perhaps she would go this route

    have you a group in your area were you could go she may find other girls her age attend it would help you a great deal

    Mischief

  • Hi mischief i don't no what this Bowen treatment is but will find out and ask her but get no sense out of her at this moment in time and after reading some of these comments i have just got to wait till she is ready to accept what she has but thank you for the advice i will look into it for when she is ready . kind regards dotty

  • Hi Dottyboro

    Would your daughter try complementary help Bowen treatment is very helful for Fibro about six of my members have it and it works there are no meds perhaps she would go this route

    have you a group in your area were you could go she may find other girls her age attend it would help you a great deal

    Mischief

  • Hi Dottyboro

    Would your daughter try complementary help Bowen treatment is very helful for Fibro about six of my members have it and it works there are no meds perhaps she would go this route

    have you a group in your area were you could go she may find other girls her age attend it would help you a great deal

    Mischief

  • Hi Dottyboro

    I am so sorry for both you and your daughter. I am 18 with Fibro, not the only one of this age on the forum. It seems to be becoming more common. I wish there was something new I could suggest but I don't have any immediate answers other than to try whatever naturl treatment there is available, such as Hydotherapy, a couple of people mentioned Bowen treatment, massage, acupressure, acupuncture, to try and get your daughter in the best physical state as possible. Just because she has Fibro - doesn't mean she will necessarily be taken hold of by the condition forever, but you may have to work at it for a while, find out what's best. There is no shame in taking medication, even just to get her through the more severe patches, she may not need to continue taking it for the rest of her life. I suggest you talk to her and find a compromise, but this may require patience. It may help her emotionally to join this forum, as there are a good few understanding 18 year olds who will welcome her with sensitivity and understanding. But fundamentally, her health must come first.

    I'll get back to you if I can think of anything else. I'm in a bit of a state today. (No one would even guess, I am suffering in silence, had to go back to bed for half the day because I was sleepy and dizzy, and I still feel sick... anyway, sorry, so I will get back to you when I'm ready, I want nothing more than to help)

    xxxx

  • I'm sorry about my last comment. It really didn't come across how I wanted it to. I hope you can understand my heart goes out to you. And I hope so badly that you and your daughter find something to help. xxxx

  • Hi I know it's been a while but I said I'd help and I meant it. I know it never came across that way because I was sort of, saying the first thing that came into my head I suppose. It still feels like yesturday when I, 2 years ago, aged 16 was diagnosed with Fibro, in hindsight the diagnosis wasn't the bad bit (of course it was nothing to celebrate, the idea of chronic ill health, howbeit, I WAS a much needed diagnosis) but it was before that the was the worst. Because I wanted to be like all my friends celebrating the end of their GCSE's at parties and things and I couldn't be like that and NO ONE new why. And then I did appallingly when I went back to the school in September and went into a deep depression. I say this by illustration that I CAN understand the frustration your daughter is going through. And by no means, is she alone, other than me I can count.. 5 other 18 year olds on this site and I've already helped a few - so I guess I want to say if she ever wants to talk, then I am here, as another 18 year old approaching A level finals and thinking the world is crashing down around me. I also want her to be reassured that as a young person, she would have more control - even though it's cruel to get this condition at this sort of age. I got a years remission and manage to forget all about it between the ages 17 and 18, and I hope to do so again (I've had a lot of stress recently which accounts for the bad patch) so it's certainly not the end for her. Yes, it may mean taking something but it's up to her to negiotate just what and find something suitable, there will be some things that work and some that don't, if there's something she's unhappy about, there's no shame in trying something else. It doesn't mean she takes them forever. I have Fibro and have managed not to take meds for over a year now - although I also want to point out, that to my reluctance I must take meds again and I see the doctor on Thurs to work something out.

    I'm not an expert to say but there is plently of information out there and research being done - so it looks like, even though there are difficult times now, your daughter will probably come out of this a stronger, more positive person than she already is. We can hope that she will live a normal, happy, and fufilling life. I have Fibro, and I am suffering right now but these are my intentions.

    Hope you're both coping ok at the moment.

    Gentle Hugs

    Fay :) xxxx

  • Hi fay I am at an age now 50 lol and its hard to work out how to do this that and the other on the lap top hence I've just read your messages thank you for your kind words and support Jayne is suffering at this moment in time but she try's so hard then all of a sudden bang the shutters come down and it to her bed she goes Jayne is trying so hard to get on with her life but she did drop out of collage I was distraught she went into hairdressing which is harder and after her getting 13 GCSE s you can imagine. She has 1 more year she should go into a salon but who is going to take her on with fibro how ever I am going to try and get her some sort of benefit to help with getting her around so she can continue with what she's doing but this site has helped massively. I no im getting on but I do understand about pain as I suffer with spondylothesis and nipping nerves I cant walk far so I do understand but Jayne really needs some one who understands her look after yourself fay hope to speak soon,

  • Hi sorry I have only just seen this myself, by chance. That's ok I'm sorry she was suffering so much at the time you wrote this. It can be so challenging just trying to live normally, day to day with Fibro because it's relentless in trying to take over and there comes a point where, you have no choice but to give in it. That loss of freewill is probably one of the hardest things to do with Fibro, it just...well for me anyway...feels degrading and undermining. It's hard enough for young women as it is with all the competition regarding careers and education, let alone with Fibro on top of that as well! Your daughter sounds like a strong, courageous women, and I reckon, with the right support she will eventually find a way through and manage to do what she wants to do. Granted, it can be a lengthy learning process but it's not impossible. I appreciate how difficult it must be for you as a mother too, I remember when I flared up about a year ago - I didn't seem to be getting better and everyone else was too scared to support me and helplessness on both sides turned into anger and tension. I realise now it's because it got to the point where my mum didn't know what else to do. She's about the same age as you are now and is lucky not have to deal with too many health problems but she does get quite bad headaches and has to take antidepressants sometimes. I'm sorry about your own health problems and their debilitating nature.

    As a family, we needed extra help but we just didn't seem to be making much progress with the doctors. Speaking of which I will be going there tomorrow to try again. By some miracle I got into university but because of Fibro it's a real struggle, and I really think I need DSA (disabled student allowance), but my medical evidence wasn't accepted, so we're hoping we can get the doctor to write a more detailed letter about it. (Might mention it in the questions section actually to see what advice members of this site can give).

    Gentle (((hugs))) and hoping things are going better than they were 5 months ago.

    Fay :) xxxx

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