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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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  • susan51170
    susan51170 Rainy64

    Posted

    Have you tried cold therapy gels ? I found them few years ago and they has been really helping with my pain smile Biofreeze and Biofrost brands both are very good but biofrost feels colder and gives better pain relief, they also have good information about msm cold therapy gels https://biofrost.fi
  • Rainy64
    Rainy64

    Posted

    Hello Everyone, not been on here for a few days iv been really struggling. Im now on my 5th week and just can't think its going to kick in. I really do feel its getting worse I lay on the bed and its even painful to move my eyes in my head it just gets so unbearable.

    I really do Thank you all for your comments and support xxxx

  • diane77471
    diane77471 Rainy64

    Posted

    Hi Rainy, I can so feel your pain. Have they given you steroids to tide you over? I really recommend humira. It was a life changer for me. Took a little more than a month to kick in but it was magic. Never did I think I'd be pain free again. It's a miracle. And my energy came back stronger than ever. I think doctors hesitate to prescribe it due to cost but I think the company has programs to offset the cost. Godluck!

    • Rainy64
      Rainy64 diane77471

      Posted

      Hello Diane, no iv not had any steroids, I phoned the other day and told them it was really bad and I was struggling, im on 2 Hydroxychloroquine, 3 Gaberpentin, 8-10 paracetamol and occasionally a Tramadol to bed, they didnt seem to think anythink of it just recommended putting frozen peas on my hands and warm baths, I cant get myself to the toilet alone so warm baths just isnt on the agenda. Even taking all thus Im still uncomfortable and just not functioning I really feel like im on the edge.

      I will mention what you and everyone else have suggested at my appointment on 20th August whuch also seems so far away.

      Thank you so much again it does mean alot <3

    • carol303055
      carol303055 Rainy64

      Posted

      Hi Rainy, who is it that's not taking these symptoms seriously? Your  Rheumy?  Your GP? It's staggering. 20th August is ages off. Your GP can give you some steroids, go to a different one and take someone with you. I'm not suggesting for a second you aren't assertive but I sometimes think it's easier to be more assertive for someone else! We, on this forum, know what pain you are in which is why we keep encouraging you to keep going till you get some relief.  I agree with Gloria to see someone privately (if you can) and nothing else works. Very best wishes. Carol x

  • Gloria814
    Gloria814 Rainy64

    Posted

       I just feel so bad for you.   YOu are not getting the right treatments if you are in such terrible pain.  Can you see someone else even private help.   It takes time to find the proper medications but that next appointment is way too far awy.   

      Keeping you in my thoughts and prayers

     

  • Rainy64
    Rainy64

    Posted

    Hello Gloria and Carol, its my Rheaumy that im in contact with and Its my consultant I see on the 20th, if I go to my local doctor they just say to rest and if yiu can try not to take as many pain killers! When they see ive got the appointment in August their happy to leave it with that.

    Every morning I hope I get out of bed with not as much pain but its just the same, once I get sat up on the edge of my bed the pain comes down my neck and chest as though iv been tensed up all night, it feels so tight round my neck then to lift my arms its just torture, walking to the the bathroom.....it just dosnt get easier. I cry so much when I talk about it thats why I dont like seeing people. My husband goes with me so hes my Support.

    Im writing everything down for when I go next I just hope I get something that will help, im so exhausted with it all xx

    • carol303055
      carol303055 Rainy64

      Posted

      You’re a better person than I am, Rainy!  I think I might become the biggest nuscience they’ve come against.  Very best wishes. Carol x
  • Rainy64
    Rainy64

    Posted

    I decided Sunday night im not going in to work until I can get dressed with no pain, and all I have done is sleep, real heavy sleep, iv no energy at all, however the pain is more controllable, is this a turning point!?

    I dont feel in control of my body its as though im drugged up but I can deal with that and sleeping rather than the pain. Im hoping this is starting to get in my system and praying tonight or tomorrow wont do a u turn.

    Please please let this be my break xxxxx

  • Gloria814
    Gloria814 Rainy64

    Posted

    Rainy,  that does sound very positive that pain has subsided some.   maybe the new medicine you started about a month ago started to work at last.   Can't you get some sort of medical leave?   I am from the US so I don't quite understand the consultant in addition to the rheumy and you should have a nurse who works with the rheum. doc would can ans questions from what I have read others write on this forum.  

       I hope and pray this is the start of a turning point for you!   We all have ups and downs with these awful diseases and I just hope they can find med that works for you.   Often the new medicine has awful side effects but then your body adjusts to it. NOt saying that about every drug b/c I have had to stop 4 due to side effects

     I am quite thin and have never tolerated drugs very well. 

      But try and stay positive as best you can and know that you can always 'talk' to us here on the forum and understand what you are dealing wtih   xo

      Best wishes

    • Rainy64
      Rainy64 Gloria814

      Posted

      Hello Gloria, I cant believe how sleepy I am but I do hope its my body saying its had a rough ride and now needs to rest. I can take sick leave from work, iv cut my hours down to 24 hours anyway as I wanted to do my Grandma duties.

      I feel more positive today and praying its starting to get better.

      I can truly say if it wasnt for you all commenting I dint know what I would have done ive been in some real dark places with some awful thoughts and feelings I know youv all helped me through, I cant Thank you all enough, listening to me and giving me your experiences rather then someone looking through a text book. I truly Thank you with all my heart xx

      Hopefully tomorrow will be an even better day xx

    • Gloria814
      Gloria814 Rainy64

      Posted

      Sweet dreams,  especially of those beautiful grandbabies  : )

      Wishing you a better tomorrow

      Gloria

  • elspeth97587
    elspeth97587 Rainy64

    Posted

    I have only just read your post and can only agree with what everyone has said but it sounds to me you are depressed which is unfortunately something that occurs quite often when you are in constant pain. My Rheumatologist actually referred me to a psychiatrist and I started on anti depressants which helped. There is also a free course you can take called Self Management of Long term conditions. I used to be a volunteer tutor for them. The Company changed its name a few times but if you google the course it should come up. I found it a great help.

    I hope you improve soon. Sending you best wishes.

    Elspeth

    • Rainy64
      Rainy64 elspeth97587

      Posted

      Hello Elspeth,

      Thank tou yes im really down, I try to pick myself up but just cry all the time.

      I will look it up thank you x

      Iv said it before and il keep saying it this has been the best medicine having someone to talk to people that understand what im saying, I really Thank everyone xxx

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