How do you stay positive?

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Hi I have inflammatory arthritis at 20 years old. I’m only 7 months in and 6 weeks in taking methotrexate and feeling dreadful. I have pain in nearly all joints and struggling to walk. The steroids have made my face balloon, spotty and burning red. Before this is was an active happy person with a lovely partner but now my life’s changed and I’m scared I’ll be like this forever! I can’t help but feel sorry for my partner as he now has to deal with someone who can’t do anything anymore like go for a long walk like we used to and I look like a swollen mess. I’m just feeling very deflated. Any advice?

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  • Ziggy123
    Ziggy123 Member Posts: 17
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    Hi liv I'm so sorry your struggling. I really feel for you as I have been your position. I know exactly how you are feeling, you feel like your life has been wripped apart by this awful thing that makes you want to scream sometimes. I was 34 and had twin boys of 6 when this hit me. And like you it hit me hard I could hardly get up and downstairs, couldn't hold a kettle to make tea without dropping it. I loved my life as well...was really happy, loved the whole being a family man. Then this RA kicks me so hard and turns my life upside down. Methotrexate is awful theres no good thing I can personally say about it. I couldn't eat. The smell of food even made me nauseous. I was on it a year and couldnt take no more I told them I was stopping it as I couldn't take much more. Liv i know it's hard, but if you can try and exercise, like taking short walks. I actually got myself a wee dog who was a brilliant wee thing.. it pushed me to take her out for short walks and also helped my wellbeing as I love dogs anyway. I also took in some relaxation and meditation listening on utube when I got very stressed out..I would recommend this if you haven't tried.
    Sometimes just talking and knowing people are going or have went through it can help to. Liv keep pushing your rheumatology team and get as much information as you can. I'm sorry theres no quick fix but I promise they will get you onto something that will work. Rheumatoid Arthritis is a hard thing to go through but your not on your own keep asking questions. Even let off steam if you have to. Helps here liv
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
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    Oh dear, my heart goes out to you, what a wrong turn in life this is, yes? I occasionally get very down about my situation but I don't wallow in misery because it does me no good and doesn't help the people around me either.

    I have two huge advantages over you: I was very ill as a child and am forty years older. My miserable childhood proved to be a good grounding for my adult life with arthritis, I now know that with my genetic inheritance it was always on the cards but it can also start out of the blue. I became very fed up after osteoarthritis was diagnosed fifteen years after the psoriatic arthritis began but I did as I always have, just got on with it. The disease has affected my body but it has not changed the essential me and itnhas not changed what I get out of lifs. Yes, there are days when I stay in bed, flattened by pain (Monday was one of those) but I don't beat myself up about it. Things are as they are, they cannot be changed and I know that in my case they are not going to improve. I've done the hard yards with trying different meds etc and I know from what I have seen the sooner one is diagnosed and begins the meds, the better the outcome can be. It takes time, this is not something that can be shaken off like a cold or tummy bug. It is life-changing and nobody is ever ready for that. DD

    Have you got the despatches? No, I always walk like this. Eddie Braben
  • HelenP
    HelenP Member Posts: 22
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    dream daisy you are an inspiration and I love your positive attitude - thank you so much for continually lifting my and lot of other folks spirits. I don't know how to thank you enough. Helen.

  • Airwave!
    Airwave! Member Posts: 2,466
    edited 17. Apr 2020, 11:26
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    How to keep positive? Your story touched off my own feelings. I was 25 with a four week old son and a new mortgage and a new job when first diagnosed and I certainly didn’t tell anyone else! I suppose the ignorance of youth saw me through the early years, life was full on, by the time I was in my thirties I realised Life would have to change and now in my 60’s, acceptance helps and I have done so many things with my life that I could live the rest of my life on past memories, good ones!

    The Pain clinic has helped me, I haven’t (Stubborn?) taken painkillers for over five years now, I keep a box of Tramadol in the house (like a lifeboat?) . The answer seems to be living the the life you want within the boundaries of arther?

    its a grin, honest!

  • Liv20
    Liv20 Member Posts: 11
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    Thanks for all the amazing and kind responses I’m so happy I came across this online community at a time where I felt so alone! I’m feeling miles better today compared to the beginning of the week! I went to see my rheumatologist who drained my knees and injected them with steroids which has been a huge help as well as up my dose and put me on a new tablet as Well! I’ve also, in the past 4 days, been taking turmeric supplements and I can honestly say for me they’ve made me feel so refreshed! Placebo effect or not I am amazed so I would recommend them to anyone out there! Thanks again for all the kind words I suppose it’s just managing isn’t it with the ups and downs! It’s all new for me so I suppose I’ll learn... ❤️
  • Ziggy123
    Ziggy123 Member Posts: 17
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    So glad your feeling better livy. Stay positive and your right it is ups and downs. Good luck