How To Get My Like Back Living With AS Arthritis

Hi. I was diagnosed with Anklosy spondylitis arthritis 10 years ago at the age of 30, It came out of nowhere after a car crash. Before this I was an International Nanny who loved traveling the world and running around looking after small children. I now have no job due to pain and mobility, live with my parents who have to care for me despite being elderly and I have no life at all. I'm depressed, miserable, frustrated and can't see a way out. I feel so utterly trapped in a body that is crippled by pain. Anklosy spondylitis arthritis has destroyed my life and I don't know what to do or where to go from here.

Any help or advice would be greatly appreciated.

Thank You

Becky 🌸🌀🌸


  • YvonneH
    YvonneH Member Posts: 1,076
    edited 8. Apr 2021, 11:34

    Hi @BeckySparkles81

    It's great to meet you, I'm glad you have found our Online Community. You will find lots of help and support here.

    I know you tried to leave a comment on the discussion by @Wthclaire - just click on the link below, have a read through the answers and add your comment to the box at the bottom.

    What a wonderful job you had, have you been managing for 10 years in pain? There are treatments available and a rheumatologist would be the person to do this. Referrals are done by your GP. Here is our information on anklyosing spondylitis

    Here also is our information on pain management, I do hope there are some ideas there that could give you some relief quite quickly

    Looking forward to reading your next post

    Yvonne x

  • Lilymary
    Lilymary Member Posts: 1,739
    edited 8. Apr 2021, 18:14

    Hi @BeckySparkles81 , I'm sorry to hear you're feeling so low. Your AS really has knocked your lifestyle into the rough hasn't it. If you haven't done so already, do chase up your GP for a referral both for rheumatologist as Yvonne suggests, and maybe the pain clinic. It's not good if the pain is so bad you're pretty much housebound, particularly at your age.

    The link on managing pain also has some really good tips. Over and above drug treatments, distraction can be really helpful, ie find something that you find yourself absorbed in, so it takes your focus away from your pain, and from your confined circumstances. Could be a spot of gardening, watching a good movie, crafting, chatting with friends, playing music, whatever floats your boat really. Gardening does it for me, even if I my hip plays up afterwards. It boosts my mood and gives my body a gentle all over work out.

    Mindfullness and meditation can also be helpful in controlling pain (it often works when I have flare ups with my wrecked hip), and is also helpful for managing depression - I've had several medics recommend it to me, and the physiological and psychological benefits are now increasingly well understood. I'm no good at reading books on this sort of thing, but I found "Teach yourself to meditate" by Erixc Harrison really easy to follow and doesn't need a spiritual aspect to it if you're not that way inclined. (Why are so many books designed to help depression so long and dull to read, when the condition they're trying to cure means you can't read anything long and dull?!)

    Also have a look at the exercises with "let's move with Leon" via this site. You can make them as gentle as they need to be, you can miss out the ones that don't work for you, and they're quite fun too. It may help to get the rest of your body moving a bit to get rid of the tension. I find if I feel knotted up all over, the pain is worse.

    It's totally understandable if you have a sense of bereavement for all you've had to let go, but it would help you to try to work through that. You may find counselling and/or CBT therapy helpful, in helping you change your focus. A good tip is that for everything you've had to let go, replace it with something new. I know that's hard with current restrictions, but things will start opening up again soon, with new opportunities. Just hang on in there a bit longer....

    Once you have the pain under better control, you may be able to review your options for working in the future. There are probably many ways of working with children that aren't so physically demanding, even if it's something as simple as reading to them at libraries. You never know where small beginings will take you,

    I know you're at the beginning of a road you really don't want to be on, it's ok to feel fed up about that. None of us would choose this condition. But there are many on this site who have been lifelong arthritis warriors who have lead happy and fulfilled lives, so while it's not the journey you anticipated, it may still be a rewarding one. Hang on in there.

    Meanwhile, if you want a moan, advice, support, or just a natter and a giggle, come on here. We all know how rubbish this feels. LM x

  • Hi BeckySparkles81,

    Thank you for posting on the helpline forum, I am so sorry to hear that your condition is impacting your life so much.

    As YvonneH has said your GP will be able to refer you to see a Rheumatologist consultant, who will help and support you with the right treatment to help you with your pain.

    It is right what Lilymary has advised, trying to distract yourself from the pain by doing things that you enjoy will lift your mood, also by not focusing on the things that you could and now cannot do and by trying new hobbies and distractions could also help you.

    The Exercising with Leon what Lilymary talked about, I have attached a link below, it is good, I have also tried this myself and got a lot of benefit and enjoyment out of doing the exercises.

    Talking can help too, so if you would like to call us at the Helpline in confidence please do so, you are not alone, and we are her to help and support you.

    Call us free on 0800 5200 520.

    I really hope that things improve for you Becky.

    Best wishes and take care


    Helpline Advisor