living with OA

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stoddy
stoddy Member Posts: 6
edited 28. Nov 2023, 14:05 in Living with arthritis

Hi everyone, I'm diane, I got diagnosed with lupus over 10 years ago, gladly it's under control now and I'm on no medication for it, but over the past 5 years I've been living with OA, this was caused through the lupus, I've been referred to rheumotology 5 times now then keep getting discharged as they say they can't help me I have to go back to my gp. they won't put me on any medication to help with my pain and the swelling gets really bad where I can't even put any weight on it , I've asked why and they told me its because it's OA and not RA, I think this is terrible and they won't help me because of this, I've joined this group to try and support others with this terrible condition , and also try and get some helpful information back, as the swelling in my ankle gets really bad , it's affecting my everyday life so bad now, the simply everyday tasks I find hard, such as housework , gardening, dog walking ect, I've tried everything to get the swelling to go down and stay down, I've tried strapping it up, hot and cold compressor, gels, resting it , keeping it elevated , and nothing seems to help, it's gets me down so much sometimes , I am only 46 and I'm going to be a first time nana in Oct, I want to be able to play with my granddaughter, when she starts toddeling , so any help or tips on how to manage the swelling will be most appreciated. thank you

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  • Ellen
    Ellen Moderator Posts: 1,628
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    Hello @stoddy - Diane!

    Welcome to the Versus Arthritis online Community.

    It sounds as though you are having quite a tough time with Osteoarthritis in your ankle if I have understood you rightly. You have done a really good job trying all those options to help your ankle.

    Your GP has referred you to Rheumatology because of your Lupus diagnosis which is understandable, but as you say this is not a Rheumatic condition. I wonder whether you have ever been referred to an Orthopaedic surgeon for an opinion? I only say this because there are other options which might be available to you. Take a look at this:

    https://www.versusarthritis.org/about-arthritis/conditions/osteoarthritis-oa-of-the-foot-and-ankle/

    Your GP might also refer you to a Pain clinic for assessment and treatment.

    I will leave you to meet our members now and please do come along and join in wherever you feel comfortable.

    Best wishes

    Ellen

  • stoddy
    stoddy Member Posts: 6
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    Hi @Ellen thanks for the welcome, yes it's been really tough , and thank you its worth a mention to my gp about the pain clinic , all my gp has told me is to get some co-codamol from my pharmacy and try that , before he will give me something else for the pain, so that's what I'm going to do, the pain I can hopefully manage its just the swelling I'm at a loss on what to do, so if anyone has any suggestions it will be most appreciated.

  • stickywicket
    stickywicket Member Posts: 27,710
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    Hi Diane,

    I'm sorry to hear about your problems. I've had RA for going n 60 years and, like you with your lupus, it led to OA. My RA never went away though so I still see a rheumatologist and take DMARDS.

    Rheumatologists don't deal with OA. That's always been the province of my GP and my orthopaedic consultant (whenever joint replacements have been necessary).

    My ankles fused themselves years ago and are now virtually painfree but it was a long, painful process especially as my sons were young at the time. I had to prioritise essential tasks. Occasionally I'd wear a neoprene ankle support but not for long as supports encourage muscle laxity.

    There are no easy answers though Mod Ellen's info is extremely useful, especially the section on managing it and the Pain Clinic suggestion too might help. I can't emphasise enough how much exercises have kept me mobile over the years. Not necessarily 'exercise' as one normally thinks of it but 'exercises' ie the boring, regular, time-consuming stuff that actually helps more than we realise until we stop!

    One thing I can assure you of is that you will find ways to enjoy being with your granddaughter as I did with my sons and grandsons. Don't just assume the obvious ways are the only ones. Don't be sad over what you can't have. Think outside the box and be creative. Kids love it. My grandsons always loved riding in my wheelchair with me and, as they got bigger, pushing me. I have learnt to dread the enthusiastic words “Can I have a go with Grandma?” ???!!!

    I wish you lots of fun.

    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Mike1
    Mike1 Member Posts: 1,992
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    Hi, you need to ask your GP to refer you to your local Pain Clinic as soon as possible. They are used to OA and there are a whole plethora of meds and treatments that they can try to make you as pain free as possible. Pain cannot be totally negated but even if the edge is just taken off it makes a difference.

  • stoddy
    stoddy Member Posts: 6
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    Hi sickywicket , Mike

    thank you both for your lovely comments they are much appreciated, I'm definitely going to speak to my gp about the pain clinic , instead of letting OA get me down , I need to make adjustments so I can manage it, I've got my granddaughter look forward too , and I'm determined to make the most of having her in my life .

  • dreamdaisy
    dreamdaisy Member Posts: 31,520
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    I have an auto-immune arthritis (eventually diagnosed as psoriatic, PsA) which led in turn to OA, I now have around forty affected joints. My PsA inflammation never went down until I found the right combination of meds to control my immune system, now it is not an issue. Any OA inflammation is usually self-induced by my being stupid with doing too much and goes with rest. OA is in both ankles, both knees, both hips, both wrists and one shoulder. I first started using walking aids back in 2002, when I was 43, and they have enabled me to go further and do more without inflicting more un-necessary stress on my joints.

    Arthritis has changed how I live my life but it will never change what I get from life. There is more to me than my disease (which is an incredibly boring topic of conversation for people and me so is never socially discussed) and there always will be. When asked how I am I give my standard reply of 'I could be better, glad I'm not worse, now how are you?' which safely steers the conversation back to people's favourite topic (and I can be bored rather be boring).

    Over the years I have changed how I do things rather than stopped doing them. Sometimes it can take all day to change the bed but so what? I don't think it says in Mrs Beeton that a bed must be changed in under ten minutes. It is hard to keep looking up amd out but it is necessary to remind us that there is life beyond the disease. My rheumatologist ignores the OA, the GP likewise withnthe PsA. Both are doing what they can to moderate the effects of an incurable disease, the rest is up to me. DD

    Have you got the despatches? No, I always walk like this. Eddie Braben
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