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ellierose
ellierose Member Posts: 12
edited 11. Aug 2010, 18:18 in Say Hello Archive
Hi

Wow, what a great support network you have going here. I have looked at it often since I was diagnosed with RA in 2007 but thought it was time to bite the bullet and join!

Apologies in advance if this turns out to be a long post :)

I am 28 and still finding it quite difficult to come to terms with having RA - and the impact that it has on even the smallest of things. I also find it difficult to talk to my family about my RA, partly because my Mum has MS and is a real trooper with it, and partly because I still see the disease as a 'weakness' - something that makes me less of a person (if that makes sense). Also, today is the first day that I have had off work for about 6 months and I feel guilty!

My RA is atypical in that it does not affect joints symmetrically - so I have a normal right knee and a swollen left knee, swollen right hand and ankle, but left hand and ankle fine! I have been on a variety of medications - some of which I could not get on with eg MTX - as I found it made me feel very foggy in the head. Is this something other people have experienced?

Aside from the general pain and stiffness, I also feel tired nearly ALL the time. I can sleep for 8 hours and wake up feeling just the same - sometimes worse - than before. It is very frustrating!

I am very lucky to have the support of my partner, but I have been very tearful of late and I don't want to invest in any more tissues! So, it would be great to hear from people who are having similar experiences and to learn how you cope on a daily basis.

Thanks

E

Comments

  • barbara12
    barbara12 Member Posts: 21,276
    edited 30. Nov -1, 00:00
    Hi Ellie
    You have come to the right place, the people on here are so friendly and very supportive of one another.
    I am really sorry you are feeling so down, its good that your other half is supportive, put a post on LWA more people go on there to view the post, and we dont mind you moaning one bit , that is what we are here for.
    Hope to see you posting more very soon.
    Sorry forgot to say welcome :)
    Love
    Barbara xx
  • valval
    valval Member Posts: 14,911
    edited 30. Nov -1, 00:00
    hi ellie welcome it gets to us all from time to time that when we help each other moan when you need to we all do and just get stuff off our chests helps when no one else understands we do val
  • trisher
    trisher Member Posts: 9,263
    edited 30. Nov -1, 00:00
    Hi Ellie

    A warm welcome from me.

    We all try to support one another whether it be a rant at how we are feeling or offer advice and tips.

    I hope you will be as happy as I have been since joing here.

    Well hope to see you posting soon

    love Trish xx
  • ellierose
    ellierose Member Posts: 12
    edited 30. Nov -1, 00:00
    Thanks so much for your positive comments and I will definitely get on the LWA forum!
  • tillytop
    tillytop Member Posts: 3,460
    edited 30. Nov -1, 00:00
    Hi EllieRose (lovely name!) and welcome from me too.

    So glad you have decided to join the forum - I had never joined a forum before and I am so glad I did because everyone is a great support and I have "met" some lovely people on here.

    Being diagnosed with RA is a big thing and coming to terms with it does take time so don't be too hard on yourself. Gradually you will adapt and learn to live with it but I do think that being able to share with others outside your immediate family and friends is a big help, so please do keep posting. We're here to listen and support you as much as we can. And we all understand!

    Love Tilly x
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hi ellierose, I know exactly what you mean about the atypical thing. I have PA (psoriatic arthritis, like RA but with the added extra of psoriasis) and mine didn't start 'properly'. The usual pattern is the skin problem, followed by the small joints of the body - toes and fingers - being affected by arthritis. I have no history of psoriasis, my left knee began to swell in 1997, my right knee joined in in 2003, THEN I had some P in 2006 and PA was diagnosed as a result of that. Since then many more joints have joined the party. The meds for RA and PA are identical as the two conditions are very similar in their systemic root.

    It's good to have you posting - I know EXACTLY what you mean about the tiredness, but that must be so much harder for a young'un like you. I'm fat and over 50, so at least it's expected! Keep in touch with us all, we know stuff, we always try to be helpful and we're quite good fun! DD
  • whitey44
    whitey44 Member Posts: 36
    edited 30. Nov -1, 00:00
    ellierose wrote:
    Hi

    Wow, what a great support network you have going here. I have looked at it often since I was diagnosed with RA in 2007 but thought it was time to bite the bullet and join!

    Apologies in advance if this turns out to be a long post :)

    I am 28 and still finding it quite difficult to come to terms with having RA - and the impact that it has on even the smallest of things. I also find it difficult to talk to my family about my RA, partly because my Mum has MS and is a real trooper with it, and partly because I still see the disease as a 'weakness' - something that makes me less of a person (if that makes sense). Also, today is the first day that I have had off work for about 6 months and I feel guilty!

    My RA is atypical in that it does not affect joints symmetrically - so I have a normal right knee and a swollen left knee, swollen right hand and ankle, but left hand and ankle fine! I have been on a variety of medications - some of which I could not get on with eg MTX - as I found it made me feel very foggy in the head. Is this something other people have experienced?

    Aside from the general pain and stiffness, I also feel tired nearly ALL the time. I can sleep for 8 hours and wake up feeling just the same - sometimes worse - than before. It is very frustrating!

    I am very lucky to have the support of my partner, but I have been very tearful of late and I don't want to invest in any more tissues! So, it would be great to hear from people who are having similar experiences and to learn how you cope on a daily basis.

    Thanks

    E
    Hello Ellierose

    Welcome - so pleased you're here!

    As Tillytop and Dreamdaisy said, you have come to the right place. I've only recently taken the plunge and have found the forums are overflowing with warmth, knowledge, experience, understanding and wisdom!!! Give yourself time to get use to Arthur who is simply an inconvenience. Take care of yourself. :D Whitey X

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