Hip Arthritis

Nicj
Nicj Member Posts: 7
edited 6. Oct 2021, 11:51 in Living with arthritis

I was diagnosed with advanced hip arthritis 10 months ago . So far I have tried, co codamol all strengths, naproxen, tramadol, morphine patches, and now meloxicam and I can honestly say none of them have helped at all. I feel I am worse every day, I have terrible referred sciatic pain in my knee which sometime wakes ne up screaming. I now find that both knees are also becoming stiffer and painful as I am finding it so difficult to move. I have had physio but most days it is too painful to do them. I cannot understand how I have gone from no pain to constant excruciating pain in 10 months. I have not even seen an orthopaedic surgeon yet let alone been put on a waiting list. My mental health is now starting to suffer as all I can see ahead is being totally immobile.

Comments

  • Lilymary
    Lilymary Member Posts: 1,613

    Hi @Nicj I'm sorry to hear you're in so much pain. I'm afraid it can come on and deteriorate very suddenly. I went from minor random niggling pains and a slight painless limp to total agony after a tumble, and it was very rapidly down hill from there. I spoke to two ortho surgeons who said it can come on sudenly, and another hip patient in my ward also said she had the same experience. It can be a lot to get your head around, and it can leave you feeling pretty low.

    I was on 2 x naproxen and up to 8xcocodamol 30-500 (2 at a time) a day, and all it does is knock the edge of it. The referred pains can be as bad as the arthritic joint. Like you, I found the physio exercises too painful to do, although my job kept me active to some degree (painfully). If you can keep them up, do try, as if you do need hip replacement, having the muscles that support your hip in good shape can aid recovery, and may help with reducing pain meanwhile.

    I found many of the tips in this link helpful - there are times when you need more than drugs to manage the pain. Try to find things that will take your focus off the pain, such as distraction (absorbing yourself in something you enjoy, eg a movie, coffee with friends, pottering in the garden, a good book, crafting etc) and mindfulness were helpful to me - the latter particularly for managing pulses of referred pain.

    To try to stop the rest of you seizing up, try the "Let's Move with Leon" sessions on this site. You can do as much or as little as your body allows, but they're quite good fun and can be as gentle as you need them to be (he does them with his mum). It will also help lift your mood a little.

    You could also ask your GP to refer you to a pain clinic, and chase up your ortho referral.

    Do come on here for a moan or a natter as often as you need to - the lovely people on here got me through an awful time when I was going through the same as you. We all know how rubbish this can get.

  • Nicj
    Nicj Member Posts: 7

    Thank you for your kind words. I will def try the exercises with Leon. As you say the referred pains are horrible, it’s a pain that makes you feel nauseous. Thanks also for advice re mental health, I go out with a group of friends once a month for a meal and a natter. I have miss3d the last two due to pain but am determined to go tonight even if I have to take a cushion to sit on! Fair play they have chosen a venue which they think will have the most comfortable seats! Sitting on a hard dining chair is a no no. My grandchildren also lift my spirits and take my mind off the pain for a whike. Thanks again for your advice,

  • Lilymary
    Lilymary Member Posts: 1,613

    Cushions, always take cushions! I found them useful for propping me up in bed in a position that accommodated my grumpy joints. You could give that a try too. If there are any activities that you've had to give up, always try to replace them with something new that you enjoy. That way you don't feel your horizons are shrinking. Have a lovely time with your friends. x

  • Coddfish
    Coddfish Member Posts: 85

    Hi @Nicj, I suspect you are going to have to hassle to get assessed by an orthopaedic surgeon. Without that, you won’t get on a list. With the current pressures on waiting lists, you will probably find there’s a lot of push back. I am in the lucky position of being able to afford to go private and am immensely aware not everyone had that choice. I think I might have begged and scraped to get the assessment and X-rays done privately, even if I hadn’t been able to afford to do the operation privately, because it would have got the process started. Most consultants run private and NHS lists.

  • LizB12
    LizB12 Member Posts: 38

    @Lilymary @Nicj Thank you for your timely reminder to do Leon and Janet’s exercises video. I am hoping that my arthritic hip and lower back pains, due to inflammation of sacroiliac joints and bruised coccyx (as physio advised) is settling a bit after 4 weeks and will start gently on the videos. I am still taking paracetamol and codeine for on-going pain and tenderness but I can get around the apartment so much more easily now. My hip pains too got worse after a fall but I am hoping 🤞that this is a flare up. I use a special‘coccyx cushion’ which helps too. I am hoping to manage an eye test appointment on Tuesday and gradually want to start little walks again. I sometimes get ‘4 wallitis’. I still have to have patience with it. I am hoping to go to a family wedding in November

  • RogerBill
    RogerBill Member Posts: 152

    Hi @Nicj I found an alternative route for getting a referral was via the NHS physiotherapy service. In my area its Dynamichealth who provide the service for the NHS and you can self refer by completing an online form. After assessing me and then having tried their exercises without success for three months they referred me to a local NHS hospital for an x-ray which confirmed I had severe osteoarthritis in my hip. They then checked waiting lists at local NHS hospitals for me but as they were 12+ months and as like @Coddfish I was in the extremely fortunate position of being able to afford to pay for a private operation, I asked to be referred to a private hospital.

  • LizB12
    LizB12 Member Posts: 38

    @RogerBill the dynamic health service sounds excellent. Although I am not in their area the website has very useful info.

    @Nicj I do hope that you can move your case forward soon.

  • Nicj
    Nicj Member Posts: 7

    Thank you all for advice. After having repeat x ray have been told that hip is now bone on bone. There is an 8 - 10 month waiting list to see consultant then 2- 3 years for op. Have been in tears all day - just cannot see how I can cope with this pain much longer. I have had to stop taking Meloxicam as they have caused my bllod pressure to rise so am back to ibuprofen! Today cannot put foot on floor and bed is just impossible, sleeping in chair so permanently shattered which makes situation worse! NHS - what NHS?! I need to win the lottery!

  • Lilymary
    Lilymary Member Posts: 1,613

    Oh nicj, that’s awful. That must have been devastating news for you to hear. Have you tried different hospitals in your area? You can also ask to be referred out of your area (I was referred to the Wrightington in Wigan, which is in a different healthcare trust to our local one). You may be able to find shorter waiting lists, although tbh most are awful at the moment. Meanwhile, ask if you can be referred to a pain clinic to better manage your symptoms. Sending you a big hug. ((x))

  • Nicj
    Nicj Member Posts: 7

    Thank you Lily - was a bit devastated to be honest especially as only had symptoms for less than a year. Strange thing no arthritis in other hip at all or anywhere else! Might be coincidence but I spent 18 years delivering Meals on Wheels in and out of the car at least 20 times a day 4 times a week leading with left leg! Still will never know and just have to limp along! Can’t afford to go private but might pay just to see consultant if only to see if I can maybe have steroid injections. Our local health board has suspended operations again for the last 3 months. A friend who has been waiting 2 years has been referred to a private hospital in Worcester! She’s jumped at the chance but as you can imagine not looking forward to a 3 hour car journey home 3 days post op! Thanks for support and advice, will enquire re pain clinic x

  • Coddfish
    Coddfish Member Posts: 85

    @nicj If seeing the consultant up front privately is an option for you, it might be worth doing this. I started off seeing my chosen consultant privately when I was quoted 8 weeks just to get an X-ray.on the nhs. It cost £200 to see him and I got in his office within 5 days of calling his secretary. I also had to pay £160 directly to the private hospital for the X-rays he needed on the day as these hadn’t already been done. The consultant had been recommended to me but I checked he also worked in my local nhs trust as well as doing private operations before seeing him. I could then have gone onto his nhs list if I had wanted to but chose to carry on privately when I understood the length of both waiting lists. The operation itself plus all aftercare was a fixed price at just over £13k, done just over 2 months after my initial appointment.

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