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Hi all my names Rose

MyPain22MyPain22 Member Posts: 11 Connected
Hi all my name is Rose 

Replies

  • chiariedschiarieds Community champion Posts: 6,897 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. :)
  • Ami2301Ami2301 Community champion Posts: 7,162 Disability Gamechanger
    Welcome to the community @MyPain22 :)
    Community Champion
    Disability Gamechanger - 2019
  • janer1967janer1967 Community champion Posts: 7,450 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
  • MyPain22MyPain22 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
  • Ami2301Ami2301 Community champion Posts: 7,162 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? :)
    Community Champion
    Disability Gamechanger - 2019
  • MyPain22MyPain22 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
  • MyPain22MyPain22 Member Posts: 11 Connected
  • MyPain22MyPain22 Member Posts: 11 Connected
  • poppy123456poppy123456 Member Posts: 22,218 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.
    Community champion and proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice i have given to members here on the community.
  • MyPain22MyPain22 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
  • Ami2301Ami2301 Community champion Posts: 7,162 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 :)
    Community Champion
    Disability Gamechanger - 2019
  • MyPain22MyPain22 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.
  • Ami2301Ami2301 Community champion Posts: 7,162 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 :)
    Community Champion
    Disability Gamechanger - 2019
  • MyPain22MyPain22 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! 😁
  • Ami2301Ami2301 Community champion Posts: 7,162 Disability Gamechanger
    You're most welcome! Let us know how you get on :)
    Community Champion
    Disability Gamechanger - 2019
  • chiariedschiarieds Community champion Posts: 6,897 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_ScopeChloe_Scope Scope Posts: 10,662 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. :)
    Community Partner
    Scope

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  • MyPain22MyPain22 Member Posts: 11 Connected
  • Chloe_ScopeChloe_Scope Scope Posts: 10,662 Disability Gamechanger
    No problem at all @MyPain22
    Community Partner
    Scope

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  • emmarenshawemmarenshaw Community champion Posts: 704 Pioneering
    Hello @MyPain22 , I’m Emma, one of the Community Champions. Welcome to the community. Happy to help should you need anything.
  • AilsAils Community champion Posts: 2,268 Disability Gamechanger
    Hi @MyPain22 and welcome also to the Community.  It is nice to meet you.  I am sorry to hear of your health struggles.  It looks like you have been given excellent advice and information above and I hope you manage to get some further support for your health.  You sound like a very spirited and determined lady and I am sure you will be just fine and take one day at a time.  We are all here to support you on the Community also as we are a friendly bunch of people so please feel free to talk to us anytime as there will always be someone on here to listen.  If you need any help/support at all then please just ask.  I hope you enjoy your time with us and look forward to seeing you on here.  All the best.  :smile:
    Winner of the Scope New Volunteer Award 2019.   :)
  • MyPain22MyPain22 Member Posts: 11 Connected
    Thank you all ladies, you have all been a brilliant help, x

  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    edited February 2020
    Hello @MyPain22   Pleased to meet you.

    Sorry to hear that your suffering.

    Please if I can add I am one of the team of Community Champions.

    We advise, help and support members.

    Please can I suggest with your mental health consider looking at mental health charities.

    Two reason one for your mental health 

    Second many mental health charities do accept clientele with additional disabilities and associated conditions as well mental health.

    Often referring them to in house advisors on health and well being or speaking or signposting you to relevant support.

    All offer floating support, guidance and advice with benefits.

    Might not be in all areas.  You can self refer or speak to your GP.

    https://www.richmondfellowship.org.uk.

    https://www.mind.org.uk.

    https://www.rethink.org.uk.

    Enclose organisation links for Fibromyalgia  

    https://www.fmauk.org.

    Helpline 0300 999 3333

    Raynaud's speak to your local Community Health Unit has a wellbeing unit.

    Often useful diet advice and nutrition beneficial.

    Do know often with a circulation disorder need to be looking at diet, nutrition .

    Raynaud's organisation  

    https://www.sruk.co.uk.

    Helpline 0800 311 2756

    Please hope that helps please any questions happy to help answer

    Please take care.

    @thespiceman


    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
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  • MyPain22MyPain22 Member Posts: 11 Connected
    Thank you x il get onto looking into these sites you have sent me thanks again Take care 
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