Please help

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I’m just after some advice really. I’m 20 years old and was recently diagnosed with inflammatory arthritis as RA factor was negative in my bloods. Basically my diagnosis was sudden and came after extreme swelling and pain in my wrists/hands. I am 5 weeks into methotrexate however this pain and swelling seems to be spreading. I now have pain still in both wrists/ hands but now in my shoulder, knee, toes, neck and jaw which I can’t open properly. I am terrified this is going to be with me forever and my life is going to be full of this pain. I’m an active person who loves walking and the fact it wasn’t effecting my legs was all that kept me positive. Why is it getting worse so suddenly when I’m on medication? Will I be like this forever? Can’t really contact my Rhematology properly because of all that’s happening.

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  • Grace111
    Grace111 Member Posts: 30
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    Hi Liv

    so sorry you are having a rough time, methotrexate can take quite a while to kick in so hang in there, it took 3 months before I really saw any benefit tbh. It does sound like you are having a bad flare, I know it's hard right now but things never stay the same and things will change. It may take sometime to get the right combination of drugs that work for you so just keep talking to your rheumatology team if you can. I can't really answer your question as to why it's getting worse other than it's probably a flare and they do ease off over time. Look after yourself and be kind to yourself, try not to compare how you are now to how you were before it will just make you miserable. Try and focus on the things you can do. Sadly we have to be patient as it takes time. Keep the faith and chat on here when you need to

    Grace111

  • louisealice
    louisealice Member Posts: 25
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    Hi Liv,

    you wouldn't be human if you weren't scared with such a sudden change to your life at such a young age. I was 49 when diagnosed the same as yourself sero negative inflammatory arthritis, coming on suddenly over a few weeks to multiple joints. Don't give up on methotrexate. Some of the drugs I was given gave me a benefit in 2 weeks, some including my current treatment took almost the full 12 weeks before I saw a benefit.

    Do try and contact your rheumatology team, it sounds like you're having a flare up and as a recent sufferer they can at least give you advice and may give you steroids short term until the methotrexate kicks in. Meantime use this forum and any of the other leaflets and guidance about sleep, managing your activity etc. Its very hard to adjust and frustrating when people talk about "managing your condition" when what you want is a treatment that will take you back to your normal, but a lot of the advice and simple changes can help with your pain if applied consistently.

    Look after your mental health too. No matter how small try and do something whenever your pain allows as a treat - even just lying down and listening to Elvis!

  • OpheliaGB
    OpheliaGB Member Posts: 4
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    Hi Liv20,

    It may seem hopeless now but like people have said above you need to give the drugs some time before they start to work.

    I'm very positive you won't feel like this forever. I was diagnosed with RA in late 2017 and it was so bad I couldn't leave my bed without help or use the bathroom without help. Things got better and I did a Tough Mudder last year in May! I'm certainly not 100% yet and have extreme jaw pain, but you learn what you can and can't do and build up your strength again. You have good days and bad days, and during the good days make the most of it. I still go on cycles around the south downs and have recently started running. So it will get better! Hang in there!