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25, fused joints and muscle wastage

Hey, I'm new to this and don't really know how to start this discussion but at the age of 15 I was diagnosed with polyarticular JIA, at the age of 20 I had a metal plate screwed to hold my left wrist together. I have a partially fused right wrist, and a fully fused right elbow that is stuck at a 45 degree angle. I cannot stand up for too long, nor can I wear flat shoes if i do I'm basically a write off for 2 days. I'm now 25, I have to have 4 lots of surgery by the age of 30, 2 wrist replacements, and elbow replacement and jaw replacement surgery. Im allergic to most drugs for arthritis and twice a year have to have a drug that if not monitored closely sends me into anaphylaxis. I'm at the end of my tether. I try to pretend I don't have it. But I'm in constant pain. I work 42.5 hour weeks on a computer all day. My consultant has advised I go part time but I cannot afford to, he suggested applying for DLA. But they refused my application and basically said I'm not disable enough. She pretty much said that I 'looked well'. I'm tired. I'm honestly so so tired. It's an invisible illness I get that but I need support. Has anyone else got fused joints at a young age. It's shallow but I feel like a freak, the simplest of things is so hard.

Comments

  • Sharon_KSharon_K Posts: 161 admin
    edited 16. Apr 2020, 15:30

    Hi Zoe

    welcome to the forums, so sorry that you have been having such an awful time of it and I am amazed at your endurace to be able to continue to work such a lot of hours.

    Firstly no you are not a freak at all my elbows started fusing when I was in my early 20's and my wrists fused next now I also have a fused neck. I am of course much older now of course. Firstly it may well be worth contesting your DLA/PIP application because they are often passed on appeal, maybe try to get hold of your local Citizens Advice, they have a huge amount of information here

    Have you spoken to your employer about reasonable adjustment to get support to make your working situation work best for you? There is a section of our website here

    Lastly don't be too hard on yourself, it is very difficult to manage when things are bad so try to take one thing at a time. It's hard but if you can ask for help from friends and family they are probably keen to help but don't want to stop you being independant. If you want to talk some things through you can phone our Helpline on 0800 5200 520, they are open Monday to Friday 9am-8pm.

    I am sure our amazing members will also be able to give you some guidance from their wealth of experience

    Best Wishes

    Sharon

  • YvonneHYvonneH Posts: 321 admin

    Hi @Zoe1994

    How wonderful of you to share your story with us in the online community. Thank you for doing that. You have an aggressive inflammatory arthritis and you are feeling lost and alone and maybe out of control.

    Well, it is an overwhelming story and one that is devastating to me and I felt inadequate to post a comment. However that is all the more reason to post. I understand what you are saying Zoe, I know pain that doesn't go away and joints that don't behave any more and I've listened and I'm here to share the load and walk alongside for a while.

    You are a brave lady and you are doing a more than full time job and paying your way in the world. I wonder if this is the time to take the next step which is to share your situation. You have shared it on here which is a brilliant start. It has given you some words to use in other sharing you do.

    I'm not sure where you work, but could you have a meeting (maybe with an advocate, a family member or friend or a union rep) and explain what your condition is and how it affects you in doing your job. There may be different types of working, maybe dictating, differeent keyboard etc that would help. Your chair could be altered to one designed for you. Your employer can claim some money back for those.

    Then do as Sharon suggested, get help to complete the PIP forms. Citizens Advice are really good look them up online and they have information on free help from a support agency

    I hope that helps

    Take care

    Yvonne x

  • YvonneHYvonneH Posts: 321 admin

    Hi @Zoe1994

    I wonder if you know about Arthur's Place? https://arthursplace.co.uk/ . this is a brilliant digital magazine which offers potential for peer support through their closed social media groups.

    It's for young people like yourselves - I think you might find understanding, support and advice there too

    Take care

    Yvonne x

  • czkdczkd Posts: 18
    Hi Zoe. I'm a newbie on here and am full of admiration for you having read your story. Thank you for sharing it, I'm sure it will help numerous others.
    I have arthritis in my spine but nothing to the extent you have and mine feels bad enough.
    I don't feel I'm anyone to offer advice but what I will say is I'm a good listener and an here should you ever want to let off steam.
    I look forward to talking to you over the weeks to come. Thinking of you. Take care of yourself.
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