Hello!

Wendy52
Wendy52 Member Posts: 15
edited 28. Nov 2023, 14:09 in Living with arthritis

I have joined the group in the hope of finding help and support from others who have been experiencing and coping with the mental and physical effects of polyarthritis.

I am two weeks into hydroxychloroquine and tapering steroids which seem to be having effects on how a feel….good days and not so good days. I have spoken to a rheumatology nurse who has explained that this is normal and that it can take up to 12 weeks to feel the beneficial effects.

I would welcome any advice on how to keep positive and survive the not so good days!

Thank you!

Comments

  • Tom
    Tom Member Posts: 522

    Thank you for your post, @wendy52. I see that you are dealing with polyarthritis and are looking to find support dealing with the emotional and physical aspects of your condition.

     

    https://www.versusarthritis.org/about-arthritis/managing-symptoms/managing-your-pain/


     

    https://www.versusarthritis.org/about-arthritis/conditions/polyarthritis/


    Other members report that if they allow themselves to focus too much on their fears or negative predictions about a future dealing with the arthritis that I suffered more, both pain wise and sadness-wise. It is a known fact that your emotional state and how you think about your pain can either increase or decrease your suffering from it. When you have thoughts about the pain never going away or getting worse over time, tell yourself "The pain may get worse but my ability to cope with it is getting better every day."

    I hope that the Methotrexate soon gives you some relief. It worked for me. Please post again and let us know how you get on.

  • Wendy52
    Wendy52 Member Posts: 15

    Thank you for replying.

    I am finding the mental effects of arthritis as difficult to deal with as the physical but reading about the experiences of others is helpful and has made me feel ‘not on my own’!

    It is definitely an up and down experience….six months ago I was fine and then overnight the pains started. Steroids helped and I became pain free but five weeks ago the pains started again so back on steroids and two weeks ago began hydroxychloroquine and reducing the steroids.

    Mornings are the worst but I am sensing slight improvements but some days I feel so down and tearful that I can’t do anything but I try to make myself. Waking at 3 am is annoying….my brain is so active at that time and my aches/pains begin. Loss of appetite ia another concern but apparently normal.

    I am so sorry to be such an old moaner but I have always been very independent and I am finding difficulty in not being able to do what I need to be doing.

    Thank you for the opportunity to off load!

  • Woofy
    Woofy Member Posts: 360
    https://community.versusarthritis.org/discussion/comment/702231#Comment_702231

    Hi Wendy52.

    I was diagnosed this year with RA, and I have to say it’s been a really difficult few months.

    I feel sometimes that I am existing rather than living.

    sleepless nights, and not being able to do the things that were easy before all this happened.

    I try everyday to be positive, but I know it’s ok not to be ok sometimes.

    I had Hydroxychloraquine to start with, but could continue with it as it gave me some side effects. I am now on Sulphsalazine which I seem to be tolerating better. I am still in pain, but it’s not as bad as when it all started. Mornings are harder, and getting off to sleep. I also had steroids, which were amazing, and really helped me. I get upset sometimes too, think it’s only natural.

    good luck with your journey.

  • Wendy52
    Wendy52 Member Posts: 15

    Thank you for taking the time to respond!

    Mornings are an absolute pain…literally….which is particularly frustrating as I like(d) to be up early to get things done!

    Sleeping has improved, thank goodness, but it is the early hours awakening/thinking that I wish would go away.

    I am wondering whether I need a different tablet taking regime but am worried about mucking about with them.

    I sound so selfish and don’t want to but I am concerned about the effects of my situation is having on the family….especially the one who has to listen to me when I am really down.

    Thanks again!

  • Woofy
    Woofy Member Posts: 360
    https://community.versusarthritis.org/discussion/comment/702247#Comment_702247

    Hi Wendy52. Please don’t be hard on yourself.

    mornings for me are the same. Can’t remember what it was like to get out of bed pain free. I am also restless in the night, sometimes getting up at silly o’clock. I sometimes make a hot drink and bring it back to bed. ( letting my dog out for a wee along the way) my husband try’s to be supportive, but it’s not an easy thing to explain. it’s not just the physical it’s the emotional too.

    you are not selfish, you are just trying to cope in your own way. I have my grown up kids here for Christmas. I have already decided to cut corners. I am buying a pre cooked ham, and pre prepared veg. And I will be asking for help if I need it!! Something I wouldn’t normally do.

    i M sitting up in bed now with a hot water bottle on my shoulders, hoping tonight will be a good sleep. You never know lol.

  • Wendy52
    Wendy52 Member Posts: 15

    I hope that you have had a good sleep….so much a requirement of trying to feel positive the next day!

    Getting out of bed is so painful but then I have to rationalise the situation that it isn’t quite as bad as it was…..only one crutch needed for the hobble! Having to do things in stages is new to me and multitasking has been thrown out of the window!

    Good that you have decided to go down the pre-prepped route for Food at Christmas. My granddaughters have already said that they will be coming to do prepping on the two days before Christmas and son and his wife will be cooking on the day!

    Thanks for your support.

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