Hi

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Glamnanjan
Glamnanjan Member Posts: 3
edited 28. Nov 2023, 14:08 in Living with arthritis

I’m new to this site although I am on another site for Reactive Arthritis which is not listed on here but is one of the forms of arthritis I suffer from. I first got ReA 14 years ago after strep throat which crippled me for 18 months and damaged my hips. I hung on far too long to have my hips replaced and ended up in disabling pain and often in a wheelchair. I had my first hip replaced Nov 2019 and second Jan 2021, both ops were brilliant had minimal pain, they couldn’t believe I didn’t need any pain relief from the plumbed in line I had straight after the op but the pain from the op was so much less than the pain I had been suffering for years. I didn’t like having to sleep on my back for six weeks and I couldn’t get my operated leg up into bed for a couple of weeks but I was given what looked like a ridged dog lead to hook round my foot to lift it up which was brilliant. I did go through a couple of nights of nerve pain first time for which I was given gabapentin which really helped. i did actually ask the surgeon to keep the piece of bone that was removed as I was interested to see how bad it was, it was no wonder I had problems and that it used to lock in place! Second replacement went well too although two weeks before it one of my knees had become really painful. At the time it was blamed on walking differently and I hoped that after the op it would settle down. No such luck ever since then I have been going through a major flare with multiple joints being hugely swollen and inflamed and me being totally incapacitated, my husband has had to do all of the cooking since then! I was put on hydroxychloriquine and steroids as that was what worked before, unfortunately it hasn’t worked and the four different lots of steroids although helping with the inflammation messed up my blood sugars especially as I am a diabetic in remission. I then had methotrexate added into the equation which I have now been on for six months and I think is starting to help a bit but also sadly makes me immuno compromised which isn’t good with Covid around. Some joints have improved, ankles, fingers, wrists and elbows but shoulders and especially the knees are still really bad but they tell me I have severe osteoarthritis in them and need them both replacing which I’m not keen on as I know it’s harder getting over that than hip replacements. Hopefully one day I’ll be able to get off the drugs as I’m also on prescription cocodamol and opioid pain patches and of course the inevitable Laxido and be able to walk up the stairs and of course my husband would like me to take over the cooking again! That’s my story as short as I can make it. I truly sympathise with anyone going through this mostly invisible disease and hope to chat with some of you soon.

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  • Anna
    Anna Moderator Posts: 1,008
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    Hi @Glamnanjan and welcome to the online community,

    Thank you for sharing your story with us - it sounds like you have lived with ReA and Osteoarthritis for a large part of your life and dealt with all the challenges that you have faced. It's great that you want to be part of this community - made up of people who have all experienced arthritis in their lives and who no doubt will be pleased that you have joined!

    Do have a browse round the forums and join in wherever you feel comfortable. There are forums for discussing how we can live well with arthritis; others for sharing general chat and news or posting recipes, and others that talk about work and finance. I've linked to the general news and chat page below for you to have a look at:

    You've probably done a good deal of research on your conditions, but if you want to find out more information, the Versus Arthritis website is a great place - very informative and current. You might find the page on reactive arthritis useful - it gives you some suggestions for managing your symptoms that you might not have tried:

    I look forward to reading more of your posts.

    Anna (Mod)

    Need more help? - call our Helpline on 0800 5200 520 Monday to Friday 9am to 6pm


  • stickywicket
    stickywicket Member Posts: 27,726
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    You've come to the right place. @Glamnanjan . Quite a few of us have 'done the double' usually with RA leading to OA but other options are available😊

    I've heard people say before that knee replacements are harder to get over than hips but that's not been my experience. (Two hips and three knees, all successful, over many years.) So, if you're offered knees, just go for it.

    Of course, it's true that, on meth (otrexate) and/or other DMARDS we have to be careful around covid. I feel for anyone living alone. But, with care, we can avoid it and still have a good life.

    Have you tried any of the exercises on here? I dread to think where I'd be without them. I reckon exercises and distraction are the key ways of dealing with pain. I'm too much of a control freak to take too many so-called painkillers though, obviously, I do when necessary.

    Have you had a look at Versus Arthritis's page on gadgets, aids and adaptions. It''s very comprehensive.

    https://www.versusarthritis.org/about-arthritis/living-with-arthritis/your-home/

    If at first you don't succeed, then skydiving definitely isn't for you.
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