Hello

alwayssewing
alwayssewing Member Posts: 4
edited 28. Nov 2023, 14:10 in Living with arthritis

I have very advanced osteoarthritis in both knees and advanced in both hips as well as it being in my hands and collarbone. I have had this for decades but was told I was too young in my twenties so just self managed for a long time, I'm now 67. Saw a doctor three times for pain over the years but not much help. It all came to a head last April after months of little sleep, the doctor said he would not bother examining but sent me straight for ex-rays, 6 in all. He called two days later to say there was basically no cushioning in knees or hip joints. I was given Naproxen smallest dose because I get terrible headaches with over the counter anti- inflammatory tablets. Fortunately Naproxen does not cause this problem. I recently asked to increase the dose due to pain getting worse.

I have been having private physiotherapy for the last 14 weeks to strengthen my leg muscles and also had massage and cold laser therapy in the same appointments as well as home exercises. There is a little progress but it will take many more months yet. All my muscles had gone into full protection mode (physio's words), the muscles were the tightest he had ever seen and it caused posture, gait and mobility problems. My right hip had been pulled out of alignment by the muscles but three sessions sorted that out.

I am still in denial of how bad things really are. I part filled a blue badge form in but feel guilty, I walk very slowly but my biggest problem is getting out of the car as I need the door wide open and often find people park too close.

I also need help with a few things, I use a shoe horn but it doesn't work for sandals, so far we have bought a handrail for the bathroom, steps to get in the bath to have a shower and an electric bath seat so I can soak in a hot bath with Magnesium salt . I can't get right down into the bath without help anymore or get safely up again.

I am desperate to keep my independence as long as possible and have been told I should claim Attendance Allowance to buy anything else I need to help me but that also makes me feel guilty, I always feel there are others worse off. We both just get state pension and the house is paid off so we manage but cost of living is making it harder.

Comments

  • noddingtonpete
    noddingtonpete Moderator Posts: 826

    Hello @alwayssewing and welcome to the Community. We are a friendly and supportive group and I hope that will be your experience as well.

    I understand that you have osteoarthritis in many joints and feeling a bit guilty about claiming benefits. Please don't be - they are in place to help those who could benefit. I've put some info below which I hope might be of help.

    and also

    Please keep posting and let us know how you are getting on, and I am sure that others will connect with you to share their support as well.

    With very best wishes,

    Peter (moderator)

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

  • frogmorton
    frogmorton Member Posts: 29,016

    Hello @alwayssewing

    Gosh you are a positive person! and clearly very independent determined to do everything under your own steam.

    Everything you have done so far is great and I would definitely encourage you to keep it up. It will be helping

    A couple of questions though

    1. have you been referred for an opinion about possible surgery? (the physio you were doing will really stand you in good stead for this.
    2. Would you encourage a friend in your position to apply for benefits she is entitled to/a blue badge if both would help her and she is entitled?

    I promise they won't give you anything you're not entitled to.

    Keep posting you might have some tips to share with us lot.

    Take care

    Toni x

  • Hi Toni. I haven't been referred yet as the doctor said the waiting lists are long and I know many operations keep getting cancelled including much more serious ones like heart operations, we had a friend die after having his put off several times.

    The physio has said that no surgeon will do any replacement op until my muscles are stronger but quite honestly I am not sure I want it done. Most of my pain now is muscular because of the work the physio has done . I don't even want injections in the joints as I know they are not pain free and I don't think I would cope. I was needle phobic till I had my first child and managed somehow to deal with it because of all the blood tests.

    I would tell those who need it to apply for any benefit to do it if they needed it. My middle child works for dwp in a different department and has said to apply . I have been through the form for AA but it all seems so complicated, I hate form filling and practically had a panic attack when I had to start filling in tax credit forms years ago. It is much easier over the phone.

    Always sewing