My mum has fibro: I’m 20 and a daughter... - Fibromyalgia Acti...

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My mum has fibro

Beth367 profile image
18 Replies

I’m 20 and a daughter to a mum with fibro, and i’m so stuck, she’s about a week into a flare up now, so a week in being purely bed bound, i’m finding it so difficult just wanting a hug from my mummy but not being able to even touch her, and finding it so difficult walking into her room and seeing her practically knocked out by painkillers, and when she does eventually come round complaining that the pains still there I feel so useless because the fibro has totally taken her whole life away and pretty much part of her soul, and I can’t talk to her about this or get upset to her about this because I know as soon as I do it makes her think ring her fibro is ruining her kids or it makes her less of a mother, obviously I’ve told her day in day out this is not the case but it’s just not enough I want my old mum back but she’s gone

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Beth367 profile image
Beth367
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18 Replies
M0AL61 profile image
M0AL61ModeratorVolunteer

Hi Beth,

What a caring daughter your mum has.

It's hard to watch someone who we love and cherish suffering with pain, and not even being able to get out of bed. Tell your mum that you are there for her (I'm sure she knows that anyway). Instead of a hug, give you mum a very light butterfly kiss on her cheek or forehead. That will show that you love her, and to her will be as good as a hug.

Let your mum know that you will listen if she wants to talk. I'm sure your mum is like most of us mum's who have fibro, and will try to hide her pain as much as she can from you.

It might be an idea for you to see if there are any Fibro support groups in your area, as they can be a support for someone living with a fibro sufferer as well as for the actual sufferer.

I'm sure others here will have loads of advice for you.

xx

Beth367 profile image
Beth367 in reply to M0AL61

I often wonder if it’s just my mum that has it particularly bad? With the vast amount of painkillers she takes that don’t have much effect, I’ve also seen on here FM sufferers exercising regularly seems to help?

DanielleGemma profile image
DanielleGemma

What an amazing and honest post. You should be so proud of yourself for helping your mum through this! I know my mum finds it really hard to deal when I’m in a flare but maybe you could find something you can both watch on TV together or maybe make her a photo album? She probably really wants to talk to you about it but doesn’t know how. I know that your support will mean so much to her ♥️🦋

Beth367 profile image
Beth367 in reply to DanielleGemma

I’d love it if she spoke to me more, I just get the idea that there’s not much for her to talk about apart from the pain she’s in she takes so many meds’ for it and they do nothing apart from make her foggy and tired

DanielleGemma profile image
DanielleGemma in reply to Beth367

What did she talk about with you before? Xxx

Beth367 profile image
Beth367 in reply to DanielleGemma

Well as a family there’s 8 of us all together through step family, and even though most of my siblings have moved out she tells me how she ‘knows’ this has such a big effect on all the kids, I’ve told her it’s not the case fibro or no fibro, mainly my brother who’s the youngest who’s six, she feels a failure of a mother when she can’t take him to the park or take him to school etc. Just this current flare she’s just so done with spending days in bed she keeps saying how she wishes the pain would go and she had more energy x

DanielleGemma profile image
DanielleGemma in reply to Beth367

Do you think she would join this forum with you? I think she will be surprised how much it can help. Has she spoken to the GP about how her medication makes her feel? How do you feel in all this?

Beth367 profile image
Beth367 in reply to DanielleGemma

I’m definitely going to, she’s been on a few on Facebook but none were as vocal and supportive as all the lovely people on here, as far as I’m aware she’s been given the painkillers and that’s it, she’s on tramadol, amitriptyline, gabapentin the lot, just nothing seems to help, it’s painful to watch because this horrible fibro has changed my mum I feel like I’m gonna start suggesting this stuff and she’ll pass it off thinking her body won’t manage it all xx

Matrix profile image
Matrix in reply to Beth367

Do you think she could be depressed maybe she could talk to the drs , many of us have times when we get depressed , it's a lot to cope with so she could be and that won't help the pain levels xx😇😇

abracad profile image
abracad in reply to DanielleGemma

That is a fabulous question.

You should be proud of yourself for being such a lovely caring daughter an I'm sure your mum is proud of you.glad you found us get support on here it will help you thru this.you think your not doing much but I'm sure you are by just being around an being a loving daughter, I'd be so glad too have a daughter like you x

phlebo123 profile image
phlebo123

Hi Beth and welcome!

Firstly, may I say what an amazing and caring daughter you are. Your mum must be so proud of you!! My youngest daughter is the same age as you, so I can understand how you must be feeling.

Perhaps you could begin by showing your mum the replies you have received to this post, letting her know she is not alone with this condition. Maybe you could encourage her to post some questions of her own.

Also, do you know if there is a local support group? Are you in the UK? If you look on the mother website for this forum, fmauk.org there is a section that lists contacts for support group s. If there is one local to you, maybe when she is feeling a little bit better, you could suggest that you both go along and meet others. You could also look at all the other information on the website.

You mentioned about exercise.... Yes gentle exercise is very beneficial, but it is very important to make sure that she paces herself. Maybe on a day when she is feeling better suggest that you take your young brother to the park (is it close enough to walk to?) And she can sit and rest while he plays. Hopefully there will be one more nice day before the winter arrives!!! Some fresh air will do her good!

Perhaps she could ask her doctor about hydrotherapy classes, the warm water is very soothing, I myself go to a beginner's yoga class . You could suggest you go along together and make the instructor aware of her condition and she can just join in with what she is comfortable with.

Please, keep asking questions, you and your mum are not alone! Take care xxx

Beth367 profile image
Beth367 in reply to phlebo123

Spoke to her about hydrotherapy and she’s never heard of it! She’s definitely going to look into it when she can do thankyou so much❤️

Paula5 profile image
Paula5

Hi, I understand why your mum is uncomfortable talking to you about it, pride and feeling helpless around your children, but its not healthy, maybe if you approach the subject and explain that there are people who now how she feels, that she can talk to,and that she can do it from home. I know that emotionally it is hard but having someone to talk and share your pain and happy times helps, and that's without endless amounts of information, that it self helps, good luck, and hopefully your mum will feel better soon, it is refreshing to here how its effects thoughs around you, thank you for sharing it must have been so hard, take care

Matrix profile image
Matrix

Sweetheart , first of all you're not responsible for how you're mum is feeling second I love you for the fact that you care so much . You can gently kiss her on her face .

How long has she had it , if it's early days she e just coming to terms with it just give her a little little time . You must live you're life too , I have had it for over 50 years and it's been bad but I have never spoke to my children about it they know I'm not well but we don't speak of it .

So you are doing a wonderful thing loving you're mum as you do and please come back and we'can support you too. Once she is up and about she needs to start trying to have a life that isn't all about pain because the plain fact is it's not going away and life can't all be about pain, please understand I have and have great pain but I make myself have a life . She needs to get out and about and sweetheart remember it's not you're responsibility to sort everything for her , yes you love and support her but she will have to make some changes like getting out and doing some things . Take care sweetie xx😇

Beth367 profile image
Beth367 in reply to Matrix

The last paragraph was so special, I’ve been reading a few of these replies to her and she’s extremely touched by what I’m doing, how old are your children? If they’re still living at home they might be in the same position as I was initially of knowing mums got fibro but not knowing the intensity of it, once they realise they’d want nothing more than to help you and be there for you because we find it difficult to outright ask what’s going on. But to be able to look at the pain side of fibro in that light of not letting it dictate your life is a really special thing to have in this xxxx

Matrix profile image
Matrix in reply to Beth367

I have had it since I was 11/12 and by the time they arrived I was well into it . They are all grown married with babies who I love to bits just been cuddling with the newest baby 7 weeks old . I have had it all their lives and when I first had children 19 I was very bad with pain but I'm strong most of the time and I'm not saying you're mum isn't because will all travel this fibro journey differently and I will tell you in my late twenties I wanted to die I looked down the years and thought I can't do this . I'm a Christian and I asked God to heal me and although he did not in the physical he healed my mind to cope and I do .

I'm not sleeping if I get an hour I'm blessed but sometimes I don't get that and if I let myself go there I want to give up and I can't afford it , so I know how you're mum feels as do all the others on here . It's great you're reading out to her , encourage her to join us because we can help her in a way someone without it can't , because we know how awful it is .

I can honestly say my children were not in you're position because I had it all their lives it was what they were used to it and if I had days when they were at school and I was in bed my friend would pick them up and I would be in the kitchen when they got in. I'm not saying that I was better than anyone else because I have struggled so bad with pain and other illnesses . You're doing such a lovely job with you're mum and you can tell her from me that she has a special daughter in you so that proves what a lovely mum she is . Take care sweetie enjoy the rest of you're weekend xxx😇ps here if you need me x

Ramjets profile image
Ramjets

What a lovely, caring daughter you are Beth, your mum is lucky to have you. I agree with what Matrix has said and if your mum has only recently been diagnosed, then it can take time to come to terms with how the condition affects you and consequently your family. I think the key to managing this condition is information and knowledge so if you can encourage your mum to have a wee look at this forum then I am positive she will find it helpful. Maybe when she's not in so much pain you could show her the website and she may be receptive to what other sufferers have to say. Keep doing what you are doing hun as it makes a world of difference when those closest to you are so supportive and kind. Make sure you look after yourself too and we are always here to offer support to you and your mum. Take are my lovely. xxx

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