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Overwhelmed by information on RA but does not fit my pattern and feeling alone and lost.

Posted , 7 users are following.

janet02197
janet02197

I was diagnosed with RA last year, I had the worst experience of a rheumatologist, he was furious because I did not want to take methotrexate, this was thrown up with no real discussion about me and my symptoms which are not exactly text book at all. I lost my son to aplastic anaemia years ago, and some of the drugs prescribed affect the bone marrow in a similar manner, he treated me like I was a mental case. Thankfully I have a new consultant, I take hydroxychlorquine but I am so fearful of the DAMARDS, don't really want them because I don't want to feel ill. Despite odd flares I have been active, swimming and walking , helped so much, the RA despite affecting a few joints does not clearly manifest itself, feels muscular sometimes, I feel alone, lost, depressed, because I don't know what I am looking for at all. The doctor pushing for extra meds is making me ill because I need to assess what is happening and where. I am more ill with the mental stress than the actual RA and I feel completely alone.

2 likes, 22 replies

22 Replies

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  • gillian_46703
    gillian_46703 janet02197

    Posted

    My profound thanks to everyone who has taken the time to respond and share their experiences. My mum and I have talked so much about this and have stressed over the options. I found this forum today and I am so glad I did. As supportive as I am trying to be, I knew my mum needed to speak to people who really understand what this is like and to make her feel less alone with it. Thank you for giving your insights to us. It helps us to educate ourselves so that we can reach the best outcome for my mum.
    • linda23834
      linda23834 gillian_46703

      Posted

      Hi Gillian, glad we have all helped your mum. I felt so down and that no one understood how I felt, although everyone was very supportive. I did the same, I found the Forum and posted on it. 1 lady really helped me as I found the injections painful to do in my leg. She suggested trying to do it in my stomach, although I didn't fancy it, I did and to my amazement, didn't feel anything hardly! I was so grateful as I'd been suffering for 9 months. That's  just 1 thing. But the input and advice is priceless. Plus you can have a moan, lol. Your mum is lucky to have you, it isn't just the physical pain, but fatigue and feeling low. You have to learn to pace yourself.  I hope she finds the meds that help. It all takes time, trying different ones. You just have to be patient.  Take care. Linda.

    • carol303055
      carol303055 linda23834

      Posted

      It is good to get things off your chest. I also find it easy to inject into my tummy. 'Pinch an inch' I can pinch a bit more than that which helps! Lol x

       

  • irina78724
    irina78724 janet02197

    Posted

    Dear Janet, I know how you feel. I feel the same. I was diagnosed almost a year ago but I do not have much symptoms of classic RA and I have been searching and searching internet all over again and again trying to find similar symptoms but never found them. Doctors push on us all medications without even being sure what we have. This is medicine today. I do not know if you know site RA Warriers. It is very good one and lots of people share their experience. Pls read it and you will not feel so lonely. I hope. 
  • irina78724
    irina78724 janet02197

    Posted

    Dear Janet, I know how you feel. I feel the same. I was diagnosed almost a year ago but I do not have much symptoms of classic RA and I have been searching and searching internet all over again and again trying to find similar symptoms but never found them. Doctors push on us all medications without even being sure what we have. This is medicine today. I do not know if you know site RA Warriers. It is very good one and lots of people share their experience. Pls read it and you will not feel so lonely. I hope. 
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