This is not me anymore

Have struggled with RA for a year, tried all the DMards till the decision was made to move onto biologics, and now that appears to be failing me......so much pain and scared to move in because it is so painful. For the first time in my life I find myself wanting to scream through my tears " this is not fair!"

I battle through every day, week and month , doing as much as I can, maintaining normality and have done everything I have been told to do and now all I can does sit here and cry, even my darn hands are beginning it to be painful again

So so tired of all of this.....wondering if the pain meds make me less able to cope with all of it, yet I cannot stop taking them now. Last month we actually thought I was going into remission

Thanks for listening and being there

35 Replies

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  • Just going through this myself today . They think my Humira has failed and I am sore again. The Rheumy is gonna call me back with promises of steroid injection at the end of th week and a change in biologicals coming up ...again.

    I can only sympathise and hope we both get sorted soon. Xx

  • Hi A, Sorry to hear you are having a bad time also, Hugs & xxxx Matt

  • Thanks me and poppy and yourself r going through it again but at least we r in it together xx

  • Laughing- took me a few hours to work out what you were saying there...funny lady Thank you x

  • Thanks Matt - am so hoping this is glitch and that some little miracle will come along x

  • I hope so Allanah- maybe we should have a Pity Party all to ourselves x

  • I will bring the Gin xx

  • Sorry to hear this Allanah let's hope you get the steroid , I've just had one it's like a mini holiday :) and I hope they found a biologic thats suits you very soon x

  • Just called them doc hasn't seen the notes yet, drat, morphine tonight I guess x

  • Poppylady, I feel for you but please don't despair to much, you mention what your going through but you don't mention anyone else you need to keep at your GP and your Rheumy team tell them everything and hopefully after consultations there will be some sort of treatment for your pain at least. Good Luck. Mattt

  • I know Matt, I just feel I am bothering them and so many are worse than me. So I am due to see rheum. Nurse in a few weeks

    X

  • Hello Don't give up you've only had it one year more drugs to try ! Also they are coming up with new stuff all the time :)X

  • Thanks Kittykat x

  • Don't give up poppy lady they will get there with your drugs in the end.xxx

  • Yon are right Sylvi.....just the thought of starting all over again when I had placd so much hope and faith in this one

    X

  • Just don't give in.xxx

  • Hi Sylvi how are you getting on with Cimzia ? I've just had my first doses and thought of you :) ..do hope it's working for you x

  • I got taken off it due to chest infections and cuts after a fall.xxx

  • Oh no poor you how frustrating ...hope you heal up quickly and they can start you back on it again soon :) xx

  • Hi Scouser, I am have just having a pity party for myself today and of course the pain in my hip seems rotate over everything...another dose of morphine me thinks and life will be fine again. Just got myself all into a dither cos I was so sore and could not do anything this morning and with no end in sight suddenly it was too much this morning

    Think you for being there

    Xx

  • You do sound like many of us have, at one time or another, it is exasperating to know others have meds that help to be closer to normal. But, it is early on, please contact your GP, or Rheumy and let them know just what you have told us. They will help you. OK? Please? Hang in there, don't give up the ship just yet..go yell at the GP!

  • Thank you Lorann....much appreciated . Just overwhelmed this morning by the possibility that this treatment is not working and need to go back to the beginning....should have a yelling room..sound proofed so no one can hear

    Be back on the ship tomorrow

    Xx

  • Hello poppylady

    We all know how you feel I have suffered pain now for thirty years, DAMARDS do not work orally, so now they are going to inject Methotrexate,

    When I lost my specialist who I had had for about twenty eight years it was a great loss, so I was given a new one, then another new one and then another one. All three wanted to do at least something, not like my old Specialist

    Now I have moved changed my doctor and now a new specialist again, although they are now arranging to give me further medications that were proven to be no good, they attacked my immune system and it tokk nearly five years to give it a boost.

    Why is it that they must do something, why not nothing, as nothing sometimes can be something positive.

    Now I am 63 and getting to old to try things that may ruin my health. When now heading for my OAP.

    Over the years I have been on most drugs, ten months ago they were wanting to put me on BIOLOGICS my old Doctor, Specialist did not want to put me on them because I would have had to take methotrexate and both could have crashed my immune system again and the risks of cancer was to great. Why do the new want to make a point with your health, sorry to bitch on

    BOB

  • You are perfectly entitled to have a "bitch" Maybe I need to start doing that instead of keeping it all bottled up

    X

  • bitch away sometimes you feel better and alive

  • Oh dear, poor you. Sounds as though you are having a torrid time. The ability for flares to come out of nowhere is real trial.

    Have you spoken to your GP about how you feel? I had become depressed without realising it and it took a conversation with my GP to make me see what was happening.

  • Hi pb52, my GP has had little to do with my treatment, in the main been the hospital taking care of me. I actually wondered this morning in the middle of my pity party by myself if that was the next step...not had depression before so not sure of symptoms or signs.....not ready to even know that yet

    X

  • Hi Penny,

    I'm sorry that this is still so horrid for you:-(

    Are you on any steroids? If not I would ask for an injection, it will damp things down whilst they continue searching for a drug to work for you. If you have had an injection/ tablets of steroid then you may need more. I know that you're normally a cheerful and positive person, but this is no time for a stiff upper lip. Sometimes our tears and despair need to be seen for the Drs to appreciate just how rotten we're feeling. I went along for years saying "oh I'm fine" at my medical appts when I was anything but fine. With the RA I feel it was only when I told my rheumy that "I could lie down on the pavement and cry, but there would be no point - and I wouldn't be able to get up" ending with a hiccupy sob, that he was able to see how things really were for me on a day-to-day basis.

    Seems like a chat with your GP and an urgent rheumy appt are needed:-}

    And no, it's not fair - but I promise that you will reach a day when you can smile and enjoy yourself again and not have your life dominated by this disease:-} Your rheumy team have treated this aggressively so far so there's no reason to think that they won't continue to do so.

    Big hug,

    Cece x

  • Cece...thank you so very much- you did just describe how I felt this morning. And you are right they have treated aggressively and will continue to do so..... Yes I get IV steroids every 3-4 months depending in how good I am..last one was September so not sure they will consider quite yet .

    Think I am more scared of them changing my current biologic, even although it is not working properly, the fear is enough for me not to push too hard and I do then keep everything bottled up so they do not know how bad I really am. Then I get mad at myself cos so many are worse than me....goodness I read here of such strong people in chairs and using walking sticks and think I am such a wimp!

    Thank you for your support

    Xxxx

  • You're not a wimp - you're having a normal response to what are, until recently for you, abnormal circumstances! And it's not a competition, you're entitled to just as much care and attention from the medical profession as anybody else - you're not bothering them, it's their job and for most medics that's close to a vocation too.

    Hope Mr Morphine does the job and you get some decent rest tonight.

    C x

  • Thank you Cece, I hear everything you are saying and I know they always help me.....I just do not want to be ill and get so mad and frustrated with myself. Think I need to give myself a good kick up the backside if only my hip would allow me to...lol.

    Rheum team have organised hip x rays for me tomorrow, apparently have had an awful lot of steroids this year and might b something to do with that.....no I will not google and they are organising urgent physio too.. I love my rheum team.....but then I love everyone right now with no pain and morphine aided pain relief . Anybody want to party tonight?

    Hugs xx

  • There are plenty of things that they can do to help counteract the side effects of the steroids - so don't fret unnecessarily- wait til you know what you're dealing with:-) I've just watched the' Bake-Off' Final and I'm off to the kitchen to hunt for cake!

    C x

  • Send me some please.....stuck on the sofa x

  • Oh Poppy lady really sorry you are feeling so down today , it's really so up and down this disease ...I know how you feel and I have just been through a year like this have never felt so down , and with 2 young children it's so hard to put on a happy front :( as you know I have just started Cimzia so hopefully things will change for me and of course they will for you too. They will probably try you on another biologic ( there are plenty about ) and you will be able to look back on this painful episode , let's hope so ...sending hugs Claire x

  • Hi Poppy lady truly feel for you.Honest your rheumy team will find something that works for you don't ever give up hope. Think it would be a wise move to give your rheumy team a ring.xxx

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