Mum trying to understand what her daughter with fibro feels like

I am trying very hard to support my adult daughter who has fibro, I find many of your blogs very useful and my heart bleeds for you guys and what you deal with each day.

I am an Occupational Therapist by profession and work with children and in 30 years in the profession I have rarely seen a child with a pain disorder untill maybe 5 years ago but now more and more.

One of them gave me this link to watch, she said it helped her family undersand and maybe it would help me as her OT Little does she know I too have a daughter with the same condition.

I cried as I watched it

Hugs to all

13 Replies

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  • OMG I can relate to all of that dayjac. I was just sitting here ( I live on my own ) and watched that and feel so bad : ( Your daughter is so fortunate to have you understand her. I am waiting to be diagnosed but wonder what even the point of that is? When even the doctor looks at me as if I am mad and my family say " there is no such thing, it's all in your mind). Thank you for sharing that film xxxxxxxxxxxxxxxxxxxxxxxxxx

  • That video sums up exactly what my husband has gone through since he was diagnosed 15 years ago, and he had symptoms before diagnosis. He missed out on so much with the children, unable to run around with them, play a game of football, he was so active before this horrible thing struck him down. thank you for sharing this video xxx

  • So moving and so true, thanks for finding it

  • I think this is one of the best vids i have seen about Fibro, there are others but to me this one conveys it all so well, i have watched it many times and i cry every time, I hope your daughter isnt suffering to much atm. xx

  • God bless you for trying to understand this horrid condition I think unless it knocks on ones door and a person either has to either live with or witness a love one living with it then ghey eill remain ignorant to its devastating impact. If i'm honest untill I got it I neither knew nor cared about fibro now As well as living with it I try to educate others any one from family friends to professionals. Its an uphill battle but I peservere as I know its on the increase and knowledge and awareness is the key to ensuring those who live with it are offered a comprehensive holistic treatment package which includes pain relief, empathy, understanding and financial support. Your daughter is lucky to have a supportive family member as Im sure like me your sadden by reading the blogs of those whose have little or no support.

    Well done for showing love and compassion and my regards to your daughter hope shes having a calm period xx

    Dixie x

  • Oops swollen stiff fingers apologies for any typos :-)

  • Thankyou for sharing wish I could send a copy to all my family so they could see I dont make it up as I go along!!

    Gentle hugs

    Rainbowdancer x

  • Im thatkful to the young lady who showed me this, and glad to share if it definatly reflects how you guys feel from day to day and allows others to pass it on to their families so we can try and understand how your lives are from day to day.

    Im trying hard to understand my own daughters life and those young people I work with who suffer pain disorders. One young lady said to me my brain is misfiring and interpreting things in the wrong way, just like someone with epilepsy but why is it people try to understand epilepsy but just think Im making it up! so sad from someone aged 17.

    As all of you say in many respects these are hidden illnesses and as a professional working with sufferers and the mother of one too I am becoming acutley aware of how little pain disorders are understood by the medical profession and how little constructive help there is for you all.

    From what I read on this site getting any help seems to be a battle, be it medical, councelling or financial and if you dont have the energy to do day to day activities where are you supposed to find the energy to fight the system.

    My daughter is very low at the moment I fear for her well being each day, although never out of my mind she is an hours drive away so practically I am unable to help day to day.

    I will share this video with professional colleagues and family I guess if each of us spreads to those we know then better understanding may eventually come.

    Hugs to allXX

  • i can so empathise with you dayjac. i have a son who was diagnosed not long ago. am an ex nurse.now 70 with disabilities of my own.my daughter helps with keeping me and my home going. but she cant spread herself too thin as she too has a condition that wont go away. her help to me is not always available these days as her condition gets worse.my son lives in a first floor flat, about 5 miles away from either of us and none of us drive. I have to use taxis which have recently put their prices up making it impossible for me to go there too often. when i do i have to struggle up the stairs to get to his flat and make sure im not there too long as i cant get up of his loo and he cant help me.am thinking he needs to get social services involved as he cannot keep his flat going housework wise. i dread to think what will happen to him when ive gone. my daughter thinks i do too much looking up on here about it and if i mention anything ive read about it she hits the roof with me. i think she cant cope with any of us being like we are.so doesnt want to know as she does it if i go on bout my ailments too. so another worry on top of the rest.i help my son with extra food.money for extra heating and i do his washing.i gave him a dishwasher/ g0t it plumbed in for him which is helping him a lot. he has now acquired a washing machine but if he has that plumbed in he cant use his dishwasher without we get a hole put in his worktop for the dishwasher pipe to go through which his HA landlord wont allow.i am trying to get things so he has a fighting chance of keeping up with his place but hitting stumbling blocks at every turn. i try to be understanding with him but sometimes feel hes not trying. i will give him some ideas on how to remember things like using his mobile phone reminders but he says he forgets to put things on. hes easily distracted/always was even as a child.worse now with this.

    its hard being the mother of someone with this condition. harder still for those who have to cope with it.

    xxx

  • heyy,....im 22 and been suffering since i was 16. i spent a lot of the time trying to get people understanding what it is like. and i have amazing support. it is horrible, the depression, anxiety and pain. letting friends down and struggling with the smallest day to day things. be sure to let her know you are there for her and will always listen. i found i kept things to myself and i got very depressed. let her know its best to talk about even the smallest things. just knowing people are there to support you makes a massive difference. xx

  • I could have sworn I had answered this once, I am slowly losing the plot lol. I can relate to that. At present I am watching my daughter, but very discreetly, as she is showing signs and I will be devastated if I am right. Her health is blighted now without FM on top of it xxxxx

  • Hey, please have a look at this link also, this might help you understand xx

    wikihow.com/Help-People

  • OMG. Thank you so much for your video, I still have tears in my eyes...

    Take care

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