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Hi, my name is rukhsanainam!

rukhsanainamrukhsanainam Member Posts: 6 Listener
edited March 9 in Disabled people
I am suffering Rehumotid+ ostreo. With fixed bent joints (fingers, elbows, wrists).flared up for now.. 

Replies

  • janer1967janer1967 Member Posts: 11,120 Disability Gamechanger
    Hi and welcome to the community glad you have joined 

    Feel free to join in or ask any questions 
  • Ross_ScopeRoss_Scope Posts: 4,114

    Scope community team

    Hello @rukhsanainam

    Welcome to the community, sorry to read you are struggling at the minute. Have you discussed things with your GP? I hope you have treatment in place for when you are going through a rough patch.
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  • rukhsanainamrukhsanainam Member Posts: 6 Listener
    Hi thanks for responding.i am having treatment but isn’t helping much. To be honest GP nevr been a helping hand to me. Only providing Prescription and rest is just a story for them..
  • Caz_AlumniCaz_Alumni Scope alumni Posts: 626 Pioneering
    edited April 1
    Hi @ruksnainam

    I just wanted to add my welcome to the community and drop by to say hi :) 

    Sorry to hear that you're experiencing a flare and that you don't feel like you are getting the support that you need from your GP. I have arthritis as well and I know that it can sometimes be difficult to explain to others how a flare-up makes me feel.

    I wonder - do you have any strategies or self-care tips that help you to cope with living with your arthritis? 

    Keep talking to us about this. Hopefully, there might also be other members of the community who you can chat to about your experiences as well.

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  • rukhsanainamrukhsanainam Member Posts: 6 Listener
    Caz thanks. No tips as hv no time to apply them🤪 kids always need me nd i keep dragging myself. I am hoping to get some help from Adult social care on daily basis like cooking, cleaning which i guess wud ease my pain nd stifness once my body ll hv some rest. 
    If someoen has any idea how to get this sorted bit quicker please advice
  • Tori_ScopeTori_Scope Posts: 4,983

    Scope community team

    You can refer yourself for a needs assessment from your local authority's social care department here @rukhsanainam :)
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  • vikingqueenvikingqueen Member Posts: 451 Pioneering
         Hello @rukhsanainam, it sounds like your rheumatoid arthritis isn't under control, you need to ring your rheumy team and let them know, also your GP should know how painful it is, you need to keep ringing them as well to possibly get some pain relief. Don't let them fob you off. I have RA and my rheumy team are brilliant, they usually get back to me the same day if I have a problem.
  • rukhsanainamrukhsanainam Member Posts: 6 Listener
    hi thanks .hospital is gud thy do respond but my nurse who i been seeing for years retired so new one not that much concerned yet..but GP !!! I asked for physio nd stuff but thy say its ur hospital responcibilty.. 
    i do blv its not always possible for human to fix some thngs r in ur fate nd you hv to face nd live wth it..i guess thats the issue right now there isnt much availabe to treat the disese nd so as nothng enough to help me in daily basis..because i am nof fullt crippled yet to get the system’s sympthy or family’s pitty
  • vikingqueenvikingqueen Member Posts: 451 Pioneering
           @rukhsanainam what medication are you on for your RA as no consultant/specialist nurse should leave you in pain. There are plenty of drugs that are tried for RA, it took my team 3 dmards then a biological to get me somewhere near normal, ring your team.
  • rukhsanainamrukhsanainam Member Posts: 6 Listener
    I just been put on Cimzia 6 weeks back.. tried few others but no luck  like Tocilizimab etc.
    i also take hydroxochloroqine wth cocodomol. 
    I have too much bent in my joints which makes day to day thngs hard to perform..
  • vikingqueenvikingqueen Member Posts: 451 Pioneering
         Are you not on mtx, seems bizarre to be on a biological and not mtx, 
  • rukhsanainamrukhsanainam Member Posts: 6 Listener
    No it was too much for me after a while so thy stopped. I had for years but then the side affects were worse. 
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