Hi, my name is Steve. haemochromatosis pains in all my joints — Scope | Disability forum
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Hi, my name is Steve. haemochromatosis pains in all my joints

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Carol1958
Carol1958 Community member Posts: 1 Listener
edited December 2022 in Chronic pain and pain management
I suffer badly with haemochromatosis pains in all my joints and can only walk 20metres. I have tried numerous pain medications but they don’t work. I have chronic back pain and although I thought a nerve root block injection would help my walking it only lasted one month and I am now back to the chronic back pain. All my joints are seizing up and I hardly venture out of the house because of the pain and depression. This is a horrible disease to endure and it’s so hard to make your doctor understand what your going through.
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  • SueHeath
    SueHeath Community member Posts: 12,420 Disability Gamechanger
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    Good morning @Carol1958 welcome to our great group.
    Sorry to hear of the pain your in at the moment and this weather surey doesn't help, i hope your managing to keep yourself warm.
    When your ready have a look around the site, we have lots going on, a few of us hang out in the coffee lounge, a great place to get to know people, have general chats and perhaps play a few games.
    You can join in on any of the chats/threads or ask your own question, any problems just ask some one is bound to be on line to help out. Enjoy.  
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  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,978 Disability Gamechanger
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    Hi @Carol1958. Welcome to Scope's forum. It is great to see you have joined us.

    Thanks for already finding the courage to reach out to us. I appreciate how much courage it can take to reach out, especially when you are new and finding things difficult. 

    It sounds really difficult what you are going through with your health and trying to make your doctor understand what you are going through.

    In an ideal world, what would support look like for you at the moment? We are all here for you and listening to you if you would like to share more with us.

    Please don't hesitate to let us know if there's anything we can do to support you. Take care for now and we will look forward to, hopefully, hearing from you again soon  :)
    Community Volunteer Adviser with professional knowledge of education, special educational needs and disabilities and EHCP's. Pronouns: She/her. 

    Please note: if I use the online community outside of its hours of administration, I am doing so in a personal capacity only.
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  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,562 Disability Gamechanger
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    Hello @Carol1958 and welcome, I hope you're finding the community a supportive place to spend time. To help everyone share their thoughts, I've moved your post into our chronic pain and pain management category. 

    You are very welcome to vent, and as I'm sure you will come to see, plenty of our members can resonate with your experience.

    Does your GP know about the impact all this is having on your mental health, with the depression you're feeling? Have you spoken to loved ones about it?

    You might find it helpful to have a look at Mind's information on self care for depression, if you'd like.

    Let us know if you do need a hand with anything in the meantime :)
    Online Community Coordinator
    Scope

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