Newly diagnosed, feeling stuck

Hi I hope you’re well. I was diagnosed last month and have started steroids and DMARDs, the steroids are now a low dose and most of my symptoms prior to starting have returned and the DMARDs haven’t made a difference yet.

In March I contracted coronavirus and this triggered a big flare, I’ve been pretty much housebound since then. As a result my muscles are weak on top of the pain and fatigue, I’m struggling with how to move forward.

My rheumatology team hasn’t been great and I feel a bit left in the dark, I’m planning to phone up my GP and ask to be referred for physio. I’m debating a wheelchair just to get out the house. I was wondering if anyone else could relate or share their experiences? I’m new to this online community :) thanks for reading!


  • Ellen
    Ellen Moderator Posts: 1,607

    Hi @amelia2002 I am well thank you for asking.

    You have been diagnosed at a very tricky time with the COVID pandemic going actually seeing Rheumatology is really difficult at the moment. I hope your team turn out to be a lot better than you fear when things return to 'normal'.

    I am going to attach this link about exercise because weakened muscles is not what you need at all:

    I think your idea of contacting your GP to see a physiotherapist is an excellent one. Keeping mobile is essential and a physio can help with mobility aids and advice.

    If the only way you can get out is with the aid of a wheelchair why not? Our mental health is important too and staying in isolated isn't good for any of us.

    For a first time poster you have done really well 🙂 Now have a look around and join in wherever you want to you will be made very welcome.

    Best wishes


  • Lilymary
    Lilymary Member Posts: 1,740

    Hi Amelia, Having endured 3 years of CFS before it receded to be replaced almost instantly with OA, I can understand your issues of feeling weak. I agree that seeing a physio to get a graduated exercise regime would be a really good place to start, since the less you use your muscles, eg to rely on a chair, the weaker your muscles will continue to get, and it can become a slippery slope. This doesn’t mean pushing yourself suddenly through a 5k run and bench pressing weights, it’s helping your muscles get back to normal use a bit at a time, so it shouldn’t feel too overwhelming.

    It’s difficult to get the right balance when you’re juggling a newly diagnosed condition along with recovery from a very unpleasant virus, but only you know where the balance lies between managing the pain, accepting the limitations of fatigue, and trying to regain muscle strength, but a physio would be your best starting point. Just remember not to push through either the pain or the the fatigue too much, as it can set you back a long way with both. So build up gradually, and don’t worry if you have days when you feel you can’t manage quite as well as the previous day. That’s fine, just do what you can, when you can, it’s not a race. It will all help.

    One good way to kid your body into working a little harder is finding a gentle activity that will take your mind off the pain and fatigue (a bit of light gardening works for me), as you will be exercising without realising it, and boosting your mood and morale at the same time.

  • Thank you @Ellen @Lilymary, this was my first post and I was directed here from the versus arthritis helpline.

    Your words mean a lot and I will use the advice going forward with my recovery, I feel reassured that how I’m feeling isn’t wrong and that physio is the right next step. I have made a GP appointment so hopefully that gets the ball rolling. I can’t imagine how different things would’ve been if my diagnosis wasn’t mid pandemic, just crazy.

    I’ve been to physio before but with some negative experiences so I’m hoping with a diagnosis I can have more specific help. Thanks again, you’re both awesome! xxx

  • Lilymary
    Lilymary Member Posts: 1,740

    If you're self-referring, shop around for a physio before committing, ask friends, check out their websites etc. I've got on better with some than others. Everyone does these things a little differently, some have better "bedside manner", others you just will (or won't) click with. You're awesome too, you just don't know it!

  • @Lilymary this is so true! Thanks again xx

  • OP: I'm presuming you are dealing with RA. Correct.

    I hope along with your medications, which can also be very damaging, you are supplementing with some good immune system supports...Vit C, Vit D, Zinc and even Grape Seed Extract which I've been taking for decades.

    Many out there do a lot of alternatives along with any pharma drugs they are taking.

    Good to do your research: RA and alternative therapies.....

    Again, I'm thinking you are talking RA.