Hello

Hi all

My name is Sandee I have PsA/ Fibro and have been on MTX well for the last three months, I started so well now I feel as if I am on a downward hill! I have an easy job I LOVE but I am exhausted by home time even if I do nothing taxing.

I am an upbeat person and try not to moan and gripe if I can help it but I'm running out of pixie dust! I am becoming a grouch at home and I hate it it is not me, my partner is so good he supports me and never complains when I am mean to him he just says your ill and I can't help it.

I have no worries about him leaving me but I hate being so low, I am on fluoxetine and have been for years because of my undiagnosed pain, I thought once I had a diagnosis I would get better but I seem to be worse.

since taking MTX I have developed floaters in my right eye, my right knee has locked and the pain of walking is unbearable at times, my lower back kills now, is this normal I KNOW everyone is different but will it lift? it is so not like me, I burst into tears at the drop of a hat sometimes over nothing.

I am hoping speaking to you all might make me feel less of a unicorn, and thank you for taking the time to read this I just want to be able to deal with this condition but I am losing at the moment

Comments

  • frogmorton
    frogmorton Member Posts: 29,924

    Hi @sandeelilly

    I am so sorry you are so low at the moment but not at all surprised with what you've said.

    I am by no means an expert but wonder whether your disease is actually under control yet rather than all the new symptoms being due to the MTX🤔 The new pains, the exhaustion all speak to me as though your meds might need a tweak.

    I hope you have an appt with rheumatology booked in soon because I'd say that is the way forwards.

    Your OH sounds lovely I am pleased you have that support and understanding at home.

    I promise you are not a unicorn if so this is unicorn central.

    I'm glad you've found us

    Take care

    Toni x

  • Ellen
    Ellen Moderator Posts: 1,812

    Hi @sandeelilly welcome to the online community.

    I see you have been on Methotrexate for 3 months for Psoriatic arthritis.

    You don't say what dose you are on perhaps @frogmorton is right and it may need to be looked at again.

    I am going to attach a link about PsA not because I think you need educating about it, but because there is a video attached with stories by 5 people who also have the condition.


    Just remember you are not alone now you have found other people who understand.

    Best wishes

    Ellen.

  • sandeelilly
    sandeelilly Member Posts: 77

    Thank you ladies, I found you all then lost you could not remember the web page(Have bookmarked it now ) I still feel the same I have been put up to 8 MTX a week and I still feel rubbish if anything it is getting worse I nearly finished my relationship last night because I feel so low

    I just feel I'm a horrible person all the time now, Im good at work I suppose as I have to be professional but even now as I type I feel like crying Am I going mad

  • Ellen
    Ellen Moderator Posts: 1,812

    @sandeelilly

    Lovely to see you again, but I am so sorry to see you are still struggling so much.

    Have you spoken to your GP about how you feel at all?

    You sound as though you are feeling quite desperate. You have a lovely partner who you really don't want to lose, a good job as you already said. Still you feel very low. This is not at all unusual when you have such a life changing diagnosis as well as multiple health conditions.

    Have you see this information?

    Arthritis and depression: what you can do about it (versusarthritis.org)

    You could consider ringing our helpline sandeelilly they are so experienced and helpful too?

     0800 5200 520 Monday to Friday 9am to 6pm

    Do keep posting it will help to see other people's posts and gain their support.

    Best wishes

    Ellen.

  • frogmorton
    frogmorton Member Posts: 29,924

    Hi @sandeelilly

    I am so sorry to hear your PsA is still not under control in spite of that increase. I suppose it hasn't had time to be 100% effective yet of course.

    Is it worth asking to see someone. Someone to talk to I mean more of the talking therapy kinds of thing I mean this is just a huge thing to be diagnosed with isn't it?

    I did ring the helplines here twice in the early days for me and they were lovely. The first time I just bawled and whoever it was just let me. Waited it out until I could speak.

    Just out of interest are/were you on oral steroids at all? I only ask because a lot of us do get prescribed them and when my youngest was on cancer treatment at 16 they added in a steroid and gosh it made her low.

    I'm glad you've bookmarked the site because it really is a fantastic resource full of supportive people.

    Take care and some ((()))

    Toni x

  • dontb65
    dontb65 Member Posts: 3

    well done for posting and seeking support, ive had PsA for longer than I can remember now, im ex forces and a man and therefore in the worst category for seeking support or help, so well done you, ive just joined VA today, and was lucky enough to come across youre post, plenty of us on the same journey, I let myself get into a bad place so seeking help like you have done early is defo the right thing to have done, well done again. I am also very gratefull to the person who posted up the video link - and there is me thinking it must just be me whos always tired. !!!!

    H4H was a big plus for me after many years of struggles, it can and will be ok.😎
    youre post is just what I was after at this moment in time, to know im not billy no mates and its not just me whos body is reacting to this thing this way.