Advice please 🙏

TashD
TashD Member Posts: 1
edited 17. Feb 2025, 09:24 in Chat to our Helpline Team

I have been diagnosed with Spondylitis 3 months ago. I also have arthritis in both knees. I was offered a back operation last year but because I have ptsd from that particular hospital I changed to the Royal Orgepeadic Hospital. Now they’re saying I have spondylitis and they can’t operate.
what should I do? Ask for a second opinion or just let it go and live the rest of my life in agony?
thanks in advance

Comments

  • helpline_team
    helpline_team Posts: 3,855

    Hi @TashD,

    Thank you for sharing here and letting us know what's been going on for you. Sorry to hear about your experience with the hospital. You are within your right to ask for a second opinion and we'd agree for you to approach your GP or healthcare professional to discuss this. This could help with exploring further options that. You can also ask your GP to be referred to a pain clinic for this too. At a pain clinic, practitioners can explore medication, physical therapies, psychological therapies and complementary and alternative therapies and treatments.

    You can read more here:

    https://www.versusarthritis.org/about-arthritis/conditions/back-pain/
    https://www.nhs.uk/live-well/pain/how-to-get-nhs-help-for-your-pain/

    If you'd like to talk about this further, please don't hesitate to get in touch with our helpline to speak to an advisor.

    https://www.versusarthritis.org/get-help/

    Thanks,

    Helpline Advisor 😊

  • cheryll
    cheryll Member Posts: 4

    I have osteoarthritis in both knees, but particularly my right knee. Sometimes it ok, but other times it's extremely painful. Now and again is completely collapses, today it's so painful, I can't straighten it. I was out walking and it just gave in, it's so difficult, I can't put my weight on it. I've hobbled along grabbing my husband and limping on my tip toe. I'm now sitting in the car on my way home.

    I have an appointment soon with physio assessment team, I've been previously but everything seemed OK and I'm sure they think I'm making it up

    I just dread going out these days

  • Fredd1e
    Fredd1e Member Posts: 18

    Your are not alone, I have exactly the same thing, but my left knee is the worst, I can't put weight on mine even to climb the stairs. Thank goodness I have a stairlift. I wish they could come up with something soon to stop the pain, have it in my wrists, foot and neck, it is extremely painful, unless you have this awful arthritis you don't know!!

  • cheryll
    cheryll Member Posts: 4

    Oh how i wish there was something out there to help us.

  • Eeyore
    Eeyore Member Posts: 41
    https://community.versusarthritis.org/discussion/comment/731276#Comment_731276

    And so say all of us!

  • Fran54
    Fran54 Member Posts: 286

    @cheryll

    I am sorry to hear that you are in so much pain and I understand how you feel. How soon is your appointment with the physio team? Perhaps you could ring them and ask to speak to the person you saw before and explain that you are at your wits end and see if the appointment can be moved forward. Also, make a list of all your symptoms and when they happen and the pain level ( scale of 1 to 10 ). When you do get to see someone make sure that your husband goes with you and get him to give his opinion on how it affects you both ( I know it does affect your nearest and dearest as well) also he will be there for much needed support.

    I hope this helps. Take care🙂

  • cheryll
    cheryll Member Posts: 4

    My husband is such an angel, I would be lost without him.

    End of February for my appointment, he will be eith me, great idea, thank you for making notes on pain and such like. Will definitely do that.

    Thank you so much for your help.

    It's very strange though, that someday all seems normalise, then, BAM off it goes again.

    I have painful right shoulder too, that is getting worse, using that arm is becoming.ing very difficult. Bursitis on both hips and inflammatory arthritis in both hands, which i take medication for .

    Because the physio is for individual "bits" I can't talk to anyone, if i mention my shoulder, they say oooo , this is knees only. I feel stupid going to physio for each bit that's painful

  • Naomi33
    Naomi33 Moderator Posts: 517

    Morning @cheryll

    I had physio appointment 13 months of waiting.

    I got there thinking for my elbows and was told for my neck.

    I explained that it was in my elbow now but still insisted on treating me just for neck !!!

    She put a request in for elbows but I know have to start wait again.

    Good luck and keep moving as much as you can and when you can (works for me)

    Best wishes @Naomi33

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


  • cheryll
    cheryll Member Posts: 4

    Oh that's such a nuisance isn't it. I hope you don't have to wait too long for your appointments.

    Thank you for your reply I shall keep moving, 🙏 x

  • Fran54
    Fran54 Member Posts: 286

    @cheryll

    will keep fingers crossed for you🤞

    Please let us know how you get on with your appointment.🙂

  • helpline_team
    helpline_team Posts: 3,855

    Hi @cheryll

    Thank you for posting on the Helpline Online Community. Sorry to hear about the trouble you're having with osteoarthritis in your knees.

    It's common to have good days and bad days and the pain varies. You mention that your right knee collapses and then you can't straighten it. Osteoarthritis of the knee can cause the muscles in the thighs to weaken or waste, so your leg may look thinner. This weakness can make the joint feel unstable and could cause the knee to give way when you put weight on it, and sometimes the joint can lock, or may feel restricted due to stiffness.

    It's a positive step that you have managed to get a physiotherapy appointment soon. Do try to keep your joints moving in the meantime as @Naomi33 suggests. We have exercises on our website which you may find helpful whilst you're waiting to see the physiotherapist. The physiotherapist can then help you to tailor and target the muscle strengthening movements for you individually.

    If you're having problems with other joints, it probably does make more sense to be dealt with more holistically as a whole person at the one physiotherapy appointment. However, they usually have limited time and limited scope to deviate from the appointment purpose, so don't feel stupid about going back again for a different focus each time, that's often how they work. Don't worry about being believed if hopefully your symptoms have improved as you get closer to the appointment, they are trained in MSK conditions and so know that the condition isn't static. As @Fran54 suggests, keeping a log of symptoms can help to get across the bigger picture for you and make sure you don't forget to mention anything, and having your husband there with you for support will help too.

    In the meantime, until your muscle strength is regained to support your joint more effectively, you could use a walking aid if this gives you a bit more confidence to continue going out and avoid feeling isolated. An Occupational Therapist (OT) can help with guidance on aids and adaptations, but you could also ask the physiotherapist about use of a stick and possible occasional use of a knee support, although these are often discouraged as they take away some of the work of the muscles which doesn't help long-term with regaining strength.

    I'm sharing with you some information on osteoarthritis of the knee and therapies, including OT and physio. You might also want to take a look at our information about shoulder pain and bursitis. Also, check in with your Rheumatology Team about your medication if you experience a flare up of your inflammatory arthritis condition.

    I hope the following online resources are helpful to you, but do also contact us on the Helpline on 0800 5200 520 if you would like to talk things through as well.

    https://www.versusarthritis.org/about-arthritis/conditions/osteoarthritis-of-the-knee/

    https://www.versusarthritis.org/about-arthritis/treatments/therapies/

    I hope this helps.

    Best wishes,
    Helen, Helpline Advisor

  • helpline_team
    helpline_team Posts: 3,855

    Hi @Fredd1e,

    Thank you for also posting on the Helpline Online Community and sorry to hear you share some of the same issues as @cheryll. You also may benefit from physiotherapy and gentle muscle strengthening movements. We have a series of chair-based exercises if you would find these more manageable, although we know it can be painful to get started, gentle movement can ease pain and stiffness. You may also benefit from seeing an Occupational Therapist (OT) who can advise on ways of doing your daily activities, advise on navigating stairs outside of the home safely and moving about more generally without straining your other joints. You can request an OT assessment via your local council Adult Social Care department, so they can explore your particular circumstances and make suggestions on aids and adaptations that may be of benefit to you.

    Our webpages on managing symptoms can be really useful to refer to and consider different approaches to managing pain. Also, talk to your doctor about getting a referral to a pain clinic which brings together a wide range of different healthcare professionals to help you find a pain management approach that works best for you. We are working hard on researching arthritis and other MSK conditions and chronic pain, and continue to invest in this vital research to help people living arthritis - you can read about the advances we've made in our Pain Centre Impact Report.

    I hope the following online resources are helpful. You might also want to check out our webpages on hand and wrist pain, foot pain and neck pain too. However, please also contact us on the Helpline on 0800 5200 520 if you would like to talk things through as well.

    https://www.versusarthritis.org/about-arthritis/conditions/osteoarthritis/

    https://www.versusarthritis.org/about-arthritis/managing-symptoms/managing-your-pain/

    Best wishes,

    Helen, Helpline Advisor

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