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Really struggling with RA and its treatments...

Posted , 14 users are following.

Rainy64
Rainy64

Hello im new to this but really struggling, iv always worked hard and people use to say slow down and my answer was 'im working hard now because one day il have Grandma duties and that's when I slow dow' On my 50th birthday in August I started with pains in my right hand through t h e months and endless doctor visits and hospital appointments by December I was unable to dress myself without pain or walk with support, they started me on Methotrexate tablets, which caused nausea so was changed to injections weekly, thus caused high liver readings so I was then changed to Leflunomide tablets and after a few weeks seemed to be picking up but then I had continual breathlessness and blistering to my face so again this treatment didnt suit. Iv now been on Hydroxyquin 4 weeks and symptoms seem to be getting worse, its so painful to shower, dress just the basic things we do daily. Im now 53 and have 2 gorgeous grandchildren, with the eldest being 9 months who I try to help with ....like I always said when Grandma duties come along il stop, unfortunately I cant get going, it breaks my heart to not be able enjoy the time with him, I still try to work a little but once home I head to my room and just dont want to see anyone, its so hard to think positive when your in such pain 24/7

I know through reading other stories im not the only one dealing with this but hope to find some light on how to get through it and enjoy making fun memories with my Grandchildren

Xxx

1 like, 79 replies

79 Replies

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  • carol303055
    carol303055 Rainy64

    Posted

    I do agree with Mary.  It seems unusual but unfair to leave you in pain like this. How are you coping with work? Are they sympathetic? Do you have a long time to work? 
    • Rainy64
      Rainy64 carol303055

      Posted

      Hello Carol, works not too bad but they forget sometimes, I work at a well known Holiday Resort in Skegness iv been here 19 years, I was a Restaurant Manager for 15 of those, then an Assistant Manager in their dining rooms, that's when it all started 4 years ago, when it took hold of me I reduced my hours and moved to an office job, iv been doing that for cuming up to 2 years and only 24hours over 4 days but its been a struggle whilst iv gone through these last couple of months. Its hard isnt it when people dont see any marks on you they dont think anythings wrong. I sold my house last year and we bought a lodge which is so much easier, thank goodness we wasnt in the house now it would have been a big struggle and really would have got me down either being stuck upstairs or downstairs. At 54 I feel its still too early to pack in work, we still need to pay our bills xx

    • carol303055
      carol303055 Rainy64

      Posted

      It is very difficult. People don’t understand the intense pain you can get in your hands and elsewhere which can be all consuming. The number of times I’ve heard ‘yes, I have arthritis in my hands’. And the tiredness.  I suppose I am lucky I was a bit older when I started so I’ve stopped working but I’ve still 3 years to go before I get my pension (I’m 63) and yes our income has suffered. Good youve moved to something more manageable though.  You live in a lovely part of the world. I’m on the other side, sunny Bolton he he.  Thinking of you. I’m still sure things will get better. It just seems never ending at the time.  Carol xx 
  • Rainy64
    Rainy64

    Posted

    Gloria xxxx

    its been hard and still takes hold but im so much better than I was when I first started writing on here....thanks to you ladys iv found it easier day by day, when its got tough I read back the encouragement youv given, I do thank you so much.

    I will try the cold creams as you suggested. if I can just get my hands back I know I could fight it much better.

    Sending Luv to you all xx

    • Gloria814
      Gloria814 Rainy64

      Posted

      I sometimes just use an ice pack to the painful areas for 15 to 20 min to relieve the pain.I have heard some mention heat alt. with cold but I have not done that. I also have hand splints that I use at night or tight gloves for pain relief

      Happy to hear you are doing much better than when you first started writing on here. xoxo

  • Rainy64
    Rainy64

    Posted

    Hello after seeing the Consultant two weeks ago he decided the treatment he was going to change me to would be to aggressive so decided to try me on predisnolone for two weeks which will finish on Tuesday, well immediately I felt an improvement, iv had no pain and my energy levels have gone out t h e roof, I cant believe the instant change....you all kept telling me to get them to prescribe this I so wish id listened to you and insisted!

    They only issue I am having is that my arms keep coming up with blood wheels and bruising, has anyone else experienced thus? Im not sure what will happen after Tuesday when iv finished this course, im waiting for a phone call to see what they say next.....

    Thinking of you all xxxx

  • Rainy64
    Rainy64

    Posted

    Hello just wanted to Wish you all a Merry Christmas, hope you all had a comfortable one and enjoyed the magic.I wish you all lots of love, HEALTH and Happiness in 2019! This year was so challenging for me and I thank you all for supporting me through some dark days xxxx

    rainy64

    Gloria and Carol Thank you xxx ❤️

  • Rainy64
    Rainy64

    Posted

    Hello, Iv not been on for a while, following on after such a challenging year last year I feel theyv got me on track and so much more comfortable. I'm on Hydroxychloroquine, Gaberpentin and Biologics, it's been a tough road getting them in my system but definitely not how I was last year.

    Were currently out in Spain on holiday our first for a while and normally I'm such a sun worshiper but this time just walking to in the complex I feel so burnt even though Iv got a high fa tor on has anyone else experienced this?

    Anyway I think about you all most days and hope your all feeling the best you can do xx

    Grandkids are all growing so quickly xxxx

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