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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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  • Rainy64
    Rainy64

    Posted

    Hello everyone, iv not been on here fir a while, thought id give you all a break from my moaning.

    So how am I doing....?

    Better than I was when I first wrote on here but still not pain free. I had another break from work as it was such a struggle and I really wasn't coping, it does seem to be more around my neck, shoulders and arms, I do still struggle with walking but each day is different. Im just wanting to get to that appointment on the 20th.

    The last few days iv had a feeling in my throat like a tablets stuck I know its not but the feeling is like that, has anyone else ever felt that? X

  • elspeth97587
    elspeth97587 Rainy64

    Posted

    Hello Rainy.

    I am only just catching up with posts but glad to see you have made a small improvement. I am, however, a little concerned about the long wait till your appt. Can your Rheum specialist nurses not step in to get you seen as an emergency? I thank God every day that I moved back to Reading so my disease is managed as soon as I let them know things are not good.

    Ice packs, especially in this hot weather, help me immensely.

    Sending hugs,

    Elspeth  xxx

     

  • elspeth97587
    elspeth97587 Rainy64

    Posted

    Sorry I also meant to say not to worry about posting. You are just telling it like it is so it's not moaning. We all have our own experience of this disease so any one of us could suggest something that may help you. It's why I find this forum so useful. Take whatever you can get from us - at some stage your experience will be helping someone else xxx

    • Rainy64
      Rainy64 elspeth97587

      Posted

      Hello elspeth xx

      Iv spoke with my Rhumy numerous times and they insist there no point bringing the appointment forward as it takes so long for the treatment to get in my system, she did however suggest ice packs and cocodamol from over the counter which I was a little suprise knowing how much pain relief I was already on and how down I was.

      I will have my say when I go on the 20th my husband and daughter are going with me as my support and will also express their upset of seeing me the last few weeks. I need to think more positively as even though im not still my best im not like I was over the last few weeks. I still fear night time and how the next day will be as its such a roller coaster. I mentioned before it all started on my 50th and im 54 next week, I really dont know where those years have gone but iv had numerous hospital appointments, medication changes but this time it really took hold of me I wouldn't want to go through that pain again I know I couldn't cope. I look at myself when showering and wonder who's body I'm in, I've no muscle I just see wrinkled skin in a slow moving body, a person I really dislike and dont want to be.

      Xx

  • beautiful1
    beautiful1 Rainy64

    Posted

    My grands suffered with some of the same symptoms. You might want to try Hemp oil qnd even Black Seed oil.

    www.hempworx com/Bcourageous1

  • Rainy64
    Rainy64

    Posted

    Hello me again :-)

    It was my Birthday yesterday 54, 4 years ago to the day when this all started.

    Tuesday and Wednesday I felt so different like Id turned a corner, then all of a sudden Wednesday night I felt so tired and struggled to get myself to bed then Thursday seemed a struggle again and pain knocked me at night time, hoping id wake ok this morning as it eas my Grandma day, but no not me I feel iv gone back again my hands just dont want to work and they feel like theyv been stamped on I just cant do anything and now the tears start and the feeling of not wanting to be here I dont want this body this life, how do you get through it? Iv had a week off work and just dont want to go back Monday, is ot stress thats causing the pain?

  • JudyH
    JudyH Rainy64

    Posted

    I was diagnosed July 3rd after waking up with a frozen painful shoulder. I am really into natural solutions, but finally broke down and got a steroid shot in the shoulder. What a great relief. What I do understand is that you can't heal where huge inflammation exits. Aside from making sure we change our diets to help with this process, I highly recommend Turmeric with a high content of curcumin to help with the process. For those of you who "add it to their cooking", that will not be enough to help you. Ask your Doc how much to take. Is anyone having success in any way with other natural products?

  • Rainy64
    Rainy64

    Posted

    Had a massage last Saturday arpund my neck, shoulders and arms and she said there was a lot of inflammation on my left side especially up my neck, I felt so much better after she'd finish so more relaxed, and could really do with it right now. Iv cut out dairy as someone mentioned quite early on and dont have sugar in my coffee which O only have two a day now, I drink mainly water now and plenty of it x

  • JudyH
    JudyH Rainy64

    Posted

    Are you taking anything for the inflammation?
  • Rainy64
    Rainy64

    Posted

    Morning everyone, I hope your all doing well and not into much pain.

    Well my day is finally here!! Im off to see my consultant fingers crossed I come away feeling more positive and in control of this situation.im ready for a fight im.not coming out his office unless I feel hes listened me!

    This morning I feel better, not great but so much better than I have been one of my concerns is this feeling of being punched in the throat its as though the tablets are dissolving there and not going down to my stomach. Anyway I have a list for him so he better be readu.il keep you posted xxxx

  • carol303055
    carol303055 Rainy64

    Posted

    Good luck today. Hope you get the answers you need. Carol x
    • Rainy64
      Rainy64 carol303055

      Posted

      Thank you Carol me too I'm feeling really anxious with it all but I know iv got you all behind me supporting me and giving me that confidence to go in there and tell them how I really feel xx its been a tough few weeks sad xx

    • carol303055
      carol303055 Rainy64

      Posted

      Aw, are you taking someone with you?  Write things down and put your paper on the desk and go through it.  You’ll be fine I’m sure. I’ve been referred to a respiratory centre because my lungs have been affected by my meds and I’ll write things down. My memory’s awful! 

      Xx

  • Gloria814
    Gloria814 Rainy64

    Posted

      my thoughts and prayers are with  you as you go to the appt today

    Glad you have a list of questions and do write down answers given as we tend to forget once we leave the office

    xoxo

  • Gloria814
    Gloria814 Rainy64

    Posted

       how was your appointment the other day?  hope it went well

    Gloria

    • Rainy64
      Rainy64 Gloria814

      Posted

      Hello I think it was ok, theyv increased my Gaberpentin to 6 per day plus the 2 Hydroxy. Im to wait for an appointment for my hands to be scanned then bloods - pre Biologics. They also assed me for another treatment administrated by injection.

      I was in there quite a while but I did feel they didnt believe what I was saying. I broke down crying twice as my Husband explained how the last 10 weeks have been. Iv been more comfortable duing the day however as soon as im home and relaxing from work it takes hold of me for the rest of the night. Each day .........

      xx

    • carol303055
      carol303055 Rainy64

      Posted

      I think you’re being really strong, even though you probably don’t think it. You’re coping with so much and still working.  I suspect they do believe you even though it didn’t feel like it. They just want to get it right? I hope so.  I’m glad your husband went with you.  Hope you don’t have long to wait for your scans. Carol x
    • Gloria814
      Gloria814 Rainy64

      Posted

         They increased your medication so hopefully that will help and ordered scans and bloods so I hope  that will be done soon and you will have more information about what is going on and maybe start on a biologic.     This disease is so hard to deal with!   hang in there

        

    • Rainy64
      Rainy64 Gloria814

      Posted

      Carol/Gloria, I thank you both for your kind words of support you really have helped me, everyone has xx

      I read back of how hard its been and it truly is a tough journey. I really do hope this will be of some help and my appointments arnt to far away.

      Today is Grandma day and each week does get a little easier, he is the best medicine I could have xx

      I hope your all having a good day xx

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