Sero negative ra working in the garden

Hi i only just got diagnosed at easter and having problems . I used to beable to do hours in the garden but yesterday only did an hour and my hands are really painful and today my hips and knees are as well not much swelling but very stiff was feeling fine before no problem for awhile. Any advice do i stop? I need to do it ? How much activity can i do to stop this? Any help please

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  • Hi I recognise this. It feels so annoying when the mind is willing but the body isn't.

    Look up spoon theory ...it describes a different way of thinking so you don't do everything in one day then spend the next ds y in pain .which was pretty much what I used to do.

    Now I pace myself . I do 15 mins for example then stop and rest. Then do a bit more. Enough to exercise but not enough to fatigue

    Ra does change things but when its more controlled you get less sore and fatigued, so mention it to your Rheumy on your next visit.

    Good luck. The achievement feels great....buy not at the expense of pain .

    I find ice better than hot pads or baths after any gardeny type of work. I don't ever do hard manual now tho lol ! X

  • Thanks just feels frustrating x

  • Omg Yes!! ! I have just been to a ska night....normally I would be up.all night . This time. Sweaty I'll person!

  • It sure is frustrating and hard to come to terms with not being able to do everything as we have for years and I find it even harder to ask for help in completing the tasks whatever they may be not sure if it is due to imbarassment of not being able to do it or pride but I guess I am going to have to learn.

  • Hi Allanah had never heard of the spoon theory just looked it up and it looks interesting you should inform others of this as I have only been diagnosed for just over 4 years but still think that I can do anything till the pain hits you.

    Billy

  • Hi ye I think it's been mentioned here before but it just makes u think about how much you can do. But when your ra is more stable it will get easier. Till then listen to your body it's working hard causing inflammation so you need to give it time to rest!

  • Agree but my brain works back to front when I should rest I go at hammer and tongs

  • You sound so like me ....but then you do pay for it as I flare or get costochondritis Lol! Slow and sure ( can't remembet the rest of it lol is it wins the race? )

  • Yep,I use biofreeze - it's basically the equivalent of deep heat,and is like having an invisible ice pack on ..... absolutely fantastic for anyone who reacts better to cold than heat like we do allanah. I was first given this gel by a Physio for my back many years ago after my first op,but since then I've made sure I've always got a bottle handy indoors,as I'd be lost without it..... plus,it's a bonus on these hot sticky nights too.... sometimes it's the only way I feel like I can cool down 😝

    Nicki x

  • It's still very early days for you. Are you even stabilised on the meds yet? I think you had a steroid injection a month or so ago, but that might well be wearing off now.

    When I was first diagnosed I could hardly pull up a weed. But now I can do a reasonably full day's activity in the garden. As Allanah says, you learn your limits. So keep going, but not to the point of outright pain. And don't do the same movement for too long, so 15 minutes weeding, then change to something else. Then a short break, and then change to something else again. Irritating, but you get used to it!

  • I am back to hospital in june and they said will start me on mtx .steroids defo not working anymore i just don't know my limits at min and dont know how far to push it frustrating thanks for advice.

  • Hi Louis. It's frustrating not knowing what to do for the best. We are all different and you will learn your bodies messages in time and with practice. Unless I am having a bad period I alternate my activities to spread the activities across my joints. Sometimes the brain rebels but try to stop before they get too sore to save them for another time so you can finish the job.

    I am 4yrs post diagnosis for sero-negative RA.

    Good luck.

  • Good to know it can work thank you for replying. Can i ask do you get a lot of swelling when you have a bad day? I don't seam to get much not sure they are right about me? Just get a lot of stiffness pain and tiredness?

  • Hi Louis. Levels of swelling really varies but tends to be more joint pain than large amounts of swelling. I don't get the levels of tiredness that I have read that some people have to deal with but you do learn how to pace yourself (and delegate !!😉)

  • Thanks for your reply i know everyone is difficult but it still helps to know what others are going through.

  • A bit at a time but this is really hard to do and easy to just do a bit more but then suffer afterwards. I had a fence behind the garden and would only do between one set of posts at a time and even if I felt ok stop.. Also have to bear in mind what else you want to do that day. Hopefully once meds are more settled it will ease but you will probably always need to think about what you do and how you do it. May be worth asking for a referral to OT to see if any supports or splints may be useful for your hands. You will have to experiment whether hot or cold helps - my knees liked cold but shoulders warm. Farm

  • I use a kitchen timer to make sure that I don't spend too much time in one position. But it does vary from day to day how much I can do. It IS VERY FRUSTRATING!

  • When I was first diagnosed over 10 years ago, early 30's, it took awhile for the docs to find the right meds that worked for me. It was very much trial and error, especially with the anti inflammatories, so the early months post diagnosis were a struggle. Not knowing your limits, and learning to listen to your body, it got much better once meds were settled and controlling my symptoms. Push for a referral to OT if you can, I got splints for my wrists as have always been worse in my upper body. Only swelling I have ever noticed is across my knuckles which get swollen and red and indicate my hands are incredible painful. I do feel for you, I would never want to go back to those early months, it is no fun trying to get meds that work and learning your limits. My only advice would be to play safe and do minimal amounts so as not to aggravate the condition.

  • Do as much as you feel able to. Don't forget to pace yourself and feel proud you managed the hour, celebrate the positive rather than comparing what you used to do. I hope you get the right treatment soon xx

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