Hi Everyone

Elgnay
Elgnay Member Posts: 5
edited 24. Jul 2015, 11:39 in Say Hello Archive
Hi

I'm 28yr old female with Psoriatic Arthritis (diagnosed last Nov) & possibly Sjogrens (waiting to see Rheumy again to confirm but my GP says ticking all the symptom boxes :( )

I have PsA in 4 joints, it's been really hard adjusting to it all. I've always been fiercely independent and my coping mechanisms to date have been overdoing it and suffering. Slowly I'm learning to ask for help.

The worst thing for me is the fatigue, and the lack of anyone understanding what it is ('oh you're tired' - how I wish it was just feeling tired). And the loneliness of it, feeling very isolated.

I'm on Methotrexate & Naproxen but neither seem to be helping much yet & the MTX has made my liver inflammed in the last bloods. So waiting to see where I'm going with this all.

I still work, although that is becoming a struggle. And I live in London with my cat & husband (always in that order).

Comments

  • moderator
    moderator Moderator Posts: 4,082
    edited 30. Nov -1, 00:00
    Hello Elgnay

    Welcome to Arthritis Care Forums. As mods we are here to help with any problems you may have on the message boards.

    There are lots of lovely people here with a wide range of experiences with arthritis and the problems of living with the condition. Just join in wherever you like you will be made very welcome.

    I look forward to seeing you posting on the boards.

    All best wishes

    Moderator JK
  • dreamdaisy
    dreamdaisy Member Posts: 31,567
    edited 30. Nov -1, 00:00
    Hello, it's nice to meet you but I am sorry you have had to find us. I too have PsA (plus some other junk) and meth never cut it for me either: I've always been on at least two meds. I don't live in London, and don't have a cat, but my Husband has returned and is willing to finish his meal as I am struggling with a bug.

    I intend to reply more fully when I'm feeling better. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 26,023
    edited 30. Nov -1, 00:00
    Hi Elgnay and welcome from me too. A diagnosis of PsA is usually followed by a steep learning curve. I don't have it myself but I have RA and that, and the meds, and the fatigue are similar.

    You've not been dealing with this long so don't be too hard on yourself. It takes a lot of getting used to. I'm 50+ years in and I still overdo things at times. We all do.

    You're quite right about the loneliness. It's an isolating disease, especially when you're young, as you are unlikely to know anyone else of your own age who has it. One doesn't want to moan on about pain and fatigue all the time but trying to get the balance right between keeping people on board and clued up but not overloading them with stuff they can do nothing about …. that's difficult. Of course they don't understand. How can they?

    How long have you been on the methotrexate and what dose? It can take up to 12 weeks to work. Were you told to take naproxen with it? They are sometimes prescribed together but, initially at least, they tend to like to see how you're getting on with the meth without any anti-inflammatories.

    Husbands and cats. Cats and husbands. Hm. I see your point but, at the end of the day, in dire straits, husbands are much better at cooking, cleaning and making cuppas. Seriously, we say on here that arthritis affects everyone in the family. Partners can easily feel shut out and hurt by that. They can't intuit how things are for us on a day to day basis. I don't know about you but sometimes I don't even know myself. My husband has no chance.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • barbara12
    barbara12 Member Posts: 20,968
    edited 30. Nov -1, 00:00
    Hello Elgnay and a warm welcome from me
    Sorry I cant offer any advice , but you have come to the right place for support and answers...and I hope to see your name around the forum..
    Love
    Barbara
  • theresak
    theresak Member Posts: 1,998
    edited 30. Nov -1, 00:00
    Hello and welcome. I can't add much to what others have said, but just wanted to say hello. Hopefully we can all be of help to you as you get to grips with PsA.
  • Rebeccarockchick
    Rebeccarockchick Member Posts: 50
    edited 30. Nov -1, 00:00
    Hello and welcome to the forum. I am quite new here only having posted a couple of times myself. I do not have Psa,so I will not say I can know what you are going through but I do have Oa in 5+ joints. I have quite a few other medical conditions that cause fatigue. For years on end a deep tiredness that you cannot explain, it cannot be solved with sleep. I have always described it as feeling effortless, everything is an effort! other people would probably describe me as lazy. But it is the fatigue, I do understand and your not alone. I am only 34 and like your self and so many others have had to deal with many ailments, conditions, symptoms and pain from an early age. It is a lot to take in.

    You will find, like I have myself, that there is lots of advice on this website and lots of supportive people :)

    Rebeccarockchick
  • slomo
    slomo Member Posts: 180
    edited 30. Nov -1, 00:00
    Hi Elgnay,
    I'm recently diagnosed with RA and vasculitis and it was your mention of the fatigue that caught my eye. I know what you mean about people not understanding - they think you've just had a hard day at work or some such. I've been really wiped out by it at times and just feeling like collapsing in a heap where I am and having a good cry. (yes I know it's unproductive but so what!)
    Even though I'd said to my husband that rheumatic fatigue is a recognised symptom, he did not fully grasp it until I showed him the section about it on the Arthiritis research website. Maybe you should try that with people.
    The asking for help thing is something I'm coming to terms with too but it's not easy is it?
    take care
    slomo
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