Hi all my names Rose — Scope | Disability forum

Hi all my names Rose

MyPain22
MyPain22 Member Posts: 11 Connected
Hi all my name is Rose 
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  • chiarieds
    chiarieds Community Co-Production Group Posts: 11,013 Disability Gamechanger
    Hi @MyPain22 - Welcome to this great community, Rose. Thank you for joining us all. Do you have any queries? If so, please say as there's usually someone here who can help or advise. I hope you enjoy being part of this community. :)
  • Ami2301
    Ami2301 Community Co-Production Group Posts: 7,946 Disability Gamechanger
    Welcome to the community @MyPain22 :)
    Disability Gamechanger - 2019
  • janer1967
    janer1967 Member Posts: 12,785 Disability Gamechanger
    @MyPain22 Hello and welcome to the community Rose, its nice to see new members here, I am a community champion here at scope. Have a good look round the site and feel free to join in any discussions. Is thwere anything you want any help with ?. Do you want to share with us a little bit about yourself
    I have professional experience in HR within public,  private, and charity sectors.  If I can help I will 
  • MyPain22
    MyPain22 Member Posts: 11 Connected
    Thank you all for the lovely welcome! Hope your all well x 


    and of course my name is rose I’m 29 years old a mother to 1, I live in Wales, 
    I have mental health for 13+ years and still no closer to a diagnosis I Have this year become deaf in both ears in a space of 3 months also have just been diagnosed with fibromyalgia and slight Raynaud’s disease I’m wondering if anyone else have had the same problems with fibromyalgia and the secondary condition raynauds? Many thanks xx
  • Ami2301
    Ami2301 Community Co-Production Group Posts: 7,946 Disability Gamechanger
    I have hearing loss in both ears, and I also have Raynaud's - is there anything in particular you would like to know about them? :)
    Disability Gamechanger - 2019
  • MyPain22
    MyPain22 Member Posts: 11 Connected
    Hi ami thanks for replying, I would appreciate your help, I would like to know with hearing aids is there any help with adaptions? Or things to be able to hear at home as even with my aids in I cannot hear the door and without them I cannot hear my child which makes me panic and very stressed when either they are outside or out of my hearing range, also i have been given gabapentin, 3 times a day but it’s not really knocking the edge off especially when I can’t move as my back and arms feel like they are in a back and neck brace, my life feels like it’s very limited, is there anything else I could try my drs have limited information on it, and also my hand has been turning very blue is this normal? It also gets to a point where I can use it, I have uploaded a photo of my hand, sorry for all the quotations it’s all new to me and I couldn’t find anything on it past pictures online thanks again x
  • MyPain22
    MyPain22 Member Posts: 11 Connected
  • MyPain22
    MyPain22 Member Posts: 11 Connected
  • poppy123456
    poppy123456 Member Posts: 24,684 Disability Gamechanger
    HI and welcome,

    As we are not medical professionals then we won't be able to give you any medical advice regarding medication or what that could be with your hand. I'd advise you to make an appointment to see your GP for both of those and hopefully they will be able to help you.

    I can't answer your questions about hearing aids and adaptions but hopefully someone else with more knowledge will be able to help you further.
  • MyPain22
    MyPain22 Member Posts: 11 Connected
    thanks for your reply, i wasn’t looking for medication help or anything just wanted advice on is it normal for other people who have it, and is it normal for people to feel depressed about their limited movement, And how they cope.
    many thanks x
  • Ami2301
    Ami2301 Community Co-Production Group Posts: 7,946 Disability Gamechanger
    Hi @MyPain22 my apologies, I should have originally stated clearly that I can only share from my own experience. Are you seeing a rheumatologist?

    Regarding hearing aids, I've had hearing loss for 3 years now and hearing aids do not work for me unfortunately. I will tag in @Andy_Assistive and @Ryan_Assistive to see if they can advise you with extra features for your hearing aids or even handy gadgets that will help you in this area.

    Regarding Raynaud's, in my experience, I've never had my hands or feet turn blue, only red and white. I did have a positive experience with Iloprost, sadly my new (now ex) rheumatologist didn't want me to have it anymore. If you are under a rheumatologist, please speak to them if you have any concerns.

    I suffer with Depression, mainly because I can't do a lot nowadays and because of my limit mobility. It has been hard adjusting and these things will take time to adapt to. 

    Hope this has helped in some way :)
    Disability Gamechanger - 2019
  • MyPain22
    MyPain22 Member Posts: 11 Connected
    Fab thank you so much! and that’s ok just wanted someone else’s experiences on things! Doesn’t feel so bad when you know your not on your own! I have never seen a rheumatologist as my drs have never advised me on anything apart from get on with it which is not very helpful! My depression has suffered more since not being able to do stuff as much as I used to I feel like a failure parent and partner wise and everyday in my own opinion, and also thanks for giving me people for hearing information, my hearing isn’t the best even with them in I have two settings 1 normal 2 traffic but I can’t seem to hear low voice frequency and feels like they are blocked with them and as for raynauds thanks for your help with it all hun means a lot sometimes it’s just nice to have someone who goes through things the same.
  • Ami2301
    Ami2301 Community Co-Production Group Posts: 7,946 Disability Gamechanger
    You're welcome :) I would strongly advise asking your GP to refer you to a rheumatologist as they know more about Raynaud's. How you're feeling now, is completely normal and understandable - what has helped me get through each day is this saying...

    Instead of focusing on what you can't do, focus on what you CAN do

    That has given me a new perspective and I've discovered new things that I am good at. Take one day at a time and you will learn to accept and adapt - theres no rush :)

    The members I tagged give advice on assistive technology - I want sure if hearing aids come under this category but it's worth asking!.

    And that's what we are here for, to share experience and help each other :)
    Disability Gamechanger - 2019
  • MyPain22
    MyPain22 Member Posts: 11 Connected
    Thanks hun! That’s one inspirational quote! I think we all focus and beat ourselves up about all we can’t do and we simply forget what we are good at or could be! Thank you, you have lifted my spirits I shall get on the phone and get an appointment with the gp this week, and yes you have been a great help take care and thanks again! 😁
  • Ami2301
    Ami2301 Community Co-Production Group Posts: 7,946 Disability Gamechanger
    You're most welcome! Let us know how you get on :)
    Disability Gamechanger - 2019
  • chiarieds
    chiarieds Community Co-Production Group Posts: 11,013 Disability Gamechanger
    I'm pleased to see Ami has helped you so much. I would be in complete agreement that seeing your GP to get a rheumatology referral may be the way forward for both your Raynaud's & also fibromyalgia.
    All I can add was I've been having a look online about aids to help around the home with your hearing problems. See: https://www.actiononhearingloss.org.uk/live-well/products-and-technology/products-and-technology-to-help-with-hearing-loss/using-alerting-devices/   some of which may be helpful. Also have a look around the website.
    Also, when you have a 'good' day, don't do too much all at once; you need to learn to 'pace' yourself, just doing a bit, then resting....don't overdo it. Pacing does work, but I was my own worst enemy not taking this onboard for quite some time, even tho I knew it should help! :)

  • Chloe_Scope
    Chloe_Scope Scope Posts: 10,565 Disability Gamechanger
    Hi @MyPain22 and a very warm welcome to the community! I too have raynards and have my feet have been known to go blue, although it is normally red/white.

    You most certainly are not alone. Physical health can have a such impact on our mental health.

    Please do feel free to have a look around and get involved. :)
    Scope

  • MyPain22
    MyPain22 Member Posts: 11 Connected
  • Chloe_Scope
    Chloe_Scope Scope Posts: 10,565 Disability Gamechanger
    No problem at all @MyPain22
    Scope

  • emmarenshaw
    emmarenshaw Member Posts: 711 Pioneering
    Hello @MyPain22 , I’m Emma, one of the Community Champions. Welcome to the community. Happy to help should you need anything.

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