Widespread osteoarthritis

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Jennyrose
Jennyrose Member Posts: 4
edited 28. Nov 2023, 14:09 in Living with arthritis

Hello, I am new here. I have been suffering with osteoarthritis for many years. I now have it in my hands, feet , knees , neck and lower spine. I have tried all medication including morphine but the pain in my lower spine, when I am standing up or walking for any length of time is unbearable. I have recently started, with my GP's approval, CBD gummies. Sadly they are not working (daily dose 50mg) so far. I have tried physiotherapy but although it helped with my knees and neck, it didn't help with my lower spine. 6 of the vertebrae in my lower spine are affected and I have been told that surgery is not an option for me. I also take Naproxen and Co codamol (30mg codeine/500mg paea

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  • anneb82
    anneb82 Member Posts: 317
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    Hello @Jennyrose

    Welcome to the online community and thank you for joining us! I hope that you find this a friendly space where you can continue to share your story with us all.

    So you have been living with osteoarthritis for many years now to the point that it is in many of your joints including your lower spine. You have tried many different medications for the pain including morphine but the pain is unbearable when you are standing or walking for any length of time. You have recently started CBD gummies but they have not worked either. You also take Naproxen and Co-codamol and have been told that surgery is not an option for you.

    It sounds that you are really being put through it and I'm sorry to hear that the latest thing you have tried has not started to help. How long have you been taking the CBD gummies? Have you been referred to a pain clinic by your GP because after everything you have shared, I think that would be most appropriate for you. I'm sure once the other members have seen your post they will share there ideas and what has worked for them.

    In the meantime I have attached some information below that I hope will be of some to use to you.

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

    Please do let us know how you are getting on and do keep getting involved in the community. We are a friendly group always looking to make new friends.

    Take care

    Anne (Moderator)

  • frogmorton
    frogmorton Member Posts: 29,417
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    Hi @Jennyrose

    just wanted to say hello. I am so sorry you are suffering with your Osteoarthritis especially your back it's pretty awful when your back plays up I know.

    It sounds as though you've tried everything have you had injections in your spine I haven't but I know two people who have them regularly and another chap who has that nerve debridement? I think it's his facet joints.

    I presume you've tried a pain clinic too?

    Take care come in and chat to us lot distraction does help a bit I think.

    Toni x

  • Jennyrose
    Jennyrose Member Posts: 4
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    Thank you for your replies. I didn't quite finish before I accidentally pressed the enter button. I have been taking cbd gummies for nearly a month but they do not help with the pain at all. I have tried physiotherapy recently and also 6 years ago but still didn't help the pain in my back. I have 4 vertebrae in my neck affected and 6 vertebrae in my lower spine. It is the lower spine that is the most painful and walking is getting worse by the week to the point that my husband wants to get a stair lift fitted . I get up the stairs by going on all fours, quite a comical sight . He also wants to get a wheelchair for me but I am really not happy to do this .

    I do have steroid injections in my knees and that is very successful but I have been told they are not possible in my spine.

    My GP is very kind and recently sent me for blood tests and x Ray's because I have lost 7cm in height within the last three years, 3.5cm within the last 9 months.

    I have tried anything that has been advised by my GP but the fact remains, standing up and walking is getting worse.

    My husband is very supportive thankfully but it has restricted us in getting out and about. We used to love walking miles but obviously not now.

    So, do I just accept my life is now different and just get on with it? My Mother had quite a challenging life and I once asked how she coped. She told me that you just have to live the life you have and not waste time crying for a life you can't have. Wise words but not so easy to do.

    Sorry for the long ramble but nice to have found such a welcoming place.

  • frogmorton
    frogmorton Member Posts: 29,417
    edited 22. Sep 2022, 05:26
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    Morning @Jennyrose

    It sounds as though you have a really good support system at home and a lovely husband (luckily for me so do I😊)

    Your GP is interested in your loss of height so I wondered if he/she was thinking along the lines of osteoporosis were you thinking the same? If it is there is medication available which can things down.What a shame you can't have steroid injections in your spine. The nerve debridement isn't steroids though in fact I know very little about it myself although think they do something to the nerves which cause the pain to stop them working.

    What a wise woman your Mum is. A few years ago when my daughter had leukaemia there was a lad who was dying I used to talk to and he said 'you have to play the cards you're dealt' so wise for such a young boy. He and your Mum are/were right if we can't change things we have to work out how best to cope.

    There's a lady here who says for everything she lost she took up something new.

    Maybe the time has come to think about a really good (possibly electric) wheelchair (or rollator if you can still walk without too much pain). I hope you are in receipt of PIP (or DLA) which should help cover the cost. there really are some excellent chairs and rollators designed for - I want to say 'off roading', but you still need to choose your walks reasonably carefully! I have a friend who has an NHS electric chair and she even does some of the easier woodland trust walks.

    I do hope you'll decide to hang about you sound as though you have a lot of experience which would help a lot of people here.

    Take very good care.

    Toni x

  • Jennyrose
    Jennyrose Member Posts: 4
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    Thanks for your reply Toni

    I am waiting for a bone density test although the X-rays I had do not show any signs of fractures so my GP doesn't think I have it but still wants the bone density test just to make sure.

    I have thought about a wheelchair but not an electric one. I don't think I could be trusted not to run into people 😅 We have just come back from a holiday in the Yorkshire Dales and I did struggle. We looked at hiring a wheelchair but there wasn't anywhere near enough. We have a very good mobility shop near where we live so I think we will go and have a look to ser what aids they have that could help.

    I have today received some cbd cream that has good reviews and which I can use as well as my other medication. Just have to wait and see if it does any good.

    I haven't applied for PIP as I don't think I would qualify as I still do get about , just not as much or as far as I used to. I'm finding this site so helpful so I will keep looking in to see what is going on .

    Jenny x

  • Jeanni
    Jeanni Member Posts: 2
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    Before you go to the Mobility shops and spend a lot of money ask your physio or doctor for an Occupational therapy assessment. Don’t worry, they don’t teach basket weaving ( which is what I thought) but will assess you in your home and see what you need which can be provided free of charge. My husband has Parkinsons and recently was given a Rollator which helps him walk more safely. It is not means tested and other things we have had is a step up to the shower. Attachments to our beds to hold onto to make getting in and out much easier & safer. A (litter) stick to pick things up off the floor or to extend your reach. A seat to increase the height of the toilet and various trolleys to carry things on.

    Im sure there are other things but I suggest you try them first.

    Best wishes with living you life now, I’m still trying.😂😂😂

    . Jeanni.

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