Rheumatoid Arthritis

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VelVet
VelVet Member Posts: 3
edited 28. Nov 2023, 14:09 in Living with arthritis

Greetings, . I’ve recently been diagnosed with RA and I’m afraid I’m struggling to come to terms with it. It just appeared overnight , every thing was going great until 4 months ago, my doctors wouldn’t see me face to face and everything was done over the phone, ( they still seem to think we’re still in lockdown) I paid to go privately as the pain was unbearable, where they did blood tests and confirmed the condition, as it’s a chronic condition, I’m now on a waiting list of 33 weeks with my local hospital , when apparently I should have been seen by now ! My consultant has prescribed Prednisolone in the interim. But as you are probably aware by now I’m feeling very low , I don’t know what to do next , so any help or advice would be very welcome. I suffer with depression internally as it is but try hard to stay positive but not knowing what comes next is worrying me. Please help and send positive suggestions. Thank you so much.

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  • Ellen
    Ellen Moderator Posts: 1,633
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    Greetings to you too@VelVet a very warm welcome to the online Community from me.

    I can see from your post that you have recently been diagnosed with Rheumatoid Arthritis and are struggling with your diagnosis.

    This is so understandable and most of our members have been through this too so will relate to your post. I am going to attach some links for you to read while you wait for someone to come along with their experience to share with you.

    This story is quite similar to yours:

    https://www.versusarthritis.org/news/2022/january/a-big-part-of-any-arthritis-diagnosis-is-dealing-with-what-it-means/

    this is for people newly diagnosed:

    https://www.versusarthritis.org/about-arthritis/newly-diagnosed/

    and this one is about Arthritis and depression:

    https://www.versusarthritis.org/news/2021/september/arthritis-and-depression-what-you-can-do-about-it/

    I am sending my very best wishes

    Ellen.

  • frogmorton
    frogmorton Member Posts: 29,457
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    Hi @VelVet

    Nice to meet you I am so sorry about your fresh new diagnosis.

    Mine also appeared to happen overnight - woke up one morning literally 'stuck' in position. What a nightmare that was. (looking back there were clues though).

    Luckily for me this was not during COVID so i was able to push for an urgent appointment with my GP who referred me on to rheumatology ASAP.

    It takes some getting used to I was talking to someone else on here not so long ago about how it was for me. I was in shock, tearful, angry, terrified, ashamed and more!

    I thought I would ruin my husband's life (he likes to travel) and embarrass my kids at the school gate. I thought I would be a wheelchair user within months and refused to plan anything in case I couldn't manage it. I was an Arthritis bore. I did nothing but talk about it to friends and family who were worried enough as it was themselves.

    No-one else was allowed a 'bad hair day'

    Then I came here. I talked to people who are not upset or worried for me, who understand pain and have some ideas to help. I read up - reliable information here, NHS and NRAS. I ignored Dr Google!

    Now I am here many years later and not a lot pf my fears did come true I am still on my feet more or less and life as been good not what I planned originally, but good.

    take care and keep talking huge ((()))

    Toni x

  • Sonjaellen
    Sonjaellen Member Posts: 3
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    Hi yeah it’s not good to have this, took three year for me to get answers but I am positive and take every day as it comes, it is helpful to chat tho as most people don’t understand, keep positive thank you . Sonja x

  • VelVet
    VelVet Member Posts: 3
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    Thank you for all your kind comments, I’m going to read the information that’s on here and not Dr Google. I think as I don’t know a lot about it I’ve been overwhelmed with the negativity on dr Google . So here’s to positive thoughts.

  • SarahP68
    SarahP68 Member Posts: 7
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    Hi VelVet, you are NOT alone! I was mis-diagnosed for a very long time (about 5 years) continually fobbed off with anti-inflammatory's by my GP, this despite (what I now know to be warning signs), isn't hindsight a wonderful thing!?! On the positive side, I have been on medication for many years and although my consultant tells me that the damage that is done cannot be undone, they are working hard for me to prevent any further deterioration. I have recently started a biologic therapy so fingers crossed that goes well but it's early days. My advice to you would be to stand up for yourself, speak to a pharmacist for advice (they are hugely knowledgeable) and don't be afraid. Life throws us curve balls from time to time, the important thing is to concentrate on the positive where you can. You may not feel very positive at times, but when I am having a bad day I try to remind myself that my condition is at times life limiting but it is not life threatening. Know your capabilities and try to stick to them. On a good day you may feel you can climb a mountain, but coming back down again may not be so easy - I hope you get my analogy. It will definitely take time to get used to your diagnosis, I cried like a baby at the thought of "what might be" when I got mine. But with the right action plan and the right people supporting you, it won't be so bad. Best wishes to you, sending positive thoughts your way ......

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