“There’s nothing more we can do...”

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Hopijohn
Hopijohn Member Posts: 3
edited 28. Nov 2023, 14:04 in Living with arthritis
Hi all - I have just joined this forum and am at the end of my tether with the pain and am finding it very hard to cope any more. To cut a long story short, I was told I have severe osteoarthritis throughout my body but it is worse in my neck and shoulders than anywhere else. I have had all the standard treatments, including a short term steriod tablet treatment, this was amazing, i had forgotten what it was like to have no pain. But then they ran out and I was told I cannot have any more and there is nothing else they can do. It is getting worse and I cannot function well, I am a self employed children’s photographer and don’t know how I can carry on with the level of physical activity that involves but have to earn a living. Help please?

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  • [Deleted User]
    [Deleted User] Posts: 3,635
    edited 30. Nov -1, 00:00
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    Hi Hopijohn,

    Welcome to the forum. I am sorry to hear you are having such a difficult time but please know you have come to the right place. I can see that the osteoarthritis in your neck and shoulders is having a big impact on your day to day activities and causing you some distress. We understand what you are going through and most of the members here will be able to share their experiences with you.

    Dealing with pain is complex, and sometimes can feel like an impossible task, however, I can provide you with some information on possible next steps regarding the management of your pain. The following link is a good place to start.

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

    Also, here is the number of the knowledgeable & supportive Helpline team who are available to talk to you in confidence.

    Helpline: 0800 520 0520 (9am - 8pm, Monday - Friday).

    Please take a look around the boards & join in anyway you feel comfortable.

    Let us know how you get on.

    Best wishes,
    Alice
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Hello, it's nice to meet you and I am sorry you have had to find us. You are discovering one of the most amazing and uncomfortable truths about osteoarthritis - there is nothing to be done. The standard treatments achieve very little for some and, unless one is fortunate to have it in joints that can be replaced, then that is it. I am the lucky winner of the arthritis lottery, I began an auto-immune when I was 37, which in turn led to OA diagnosed when I was 48. I am now 60 so know a little about living with arthritis and pain.

    Steroid treatments when they work, are wonderful but the pain always returns because the steroids merely mask, not cure. The steroids work by thinning ALL body tissues, not just the naughty ones, which is why they are not a long-term solution. I manage my OA with minimum pain relief (which merely dulls the sharper edges but that is enough to let me get on) rest and exercise but I am lucky in that it is only in my major joints, not those of my neck and spine. Every move hurts and has done for years which is fine, I know where I am with it. I was able to carry on working for seventeen years but it was not a physical job. The meds I take for the other one do nothing for the OA which is fair enough, that has a different cause.

    There are around two and a half million people in the UK who have cancer but around ten million with arthritis, the majority having OA. As a disease ours lacks the dark glamour of a potential killer but more and more cancers can be cured: not one form of arthritis can claim that distinction. Ours is a very common condition which leads to be it being very misunderstood, not taken seriously and dismissed by those who don't have it as is having a few aches and pains in the damp weather. If only. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 27,719
    edited 30. Nov -1, 00:00
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    Hello and welcome from me too.

    It must be very scary to feel you could lose your ability to do your work. Add to that the pain and life must be tough right now. Unfortunately, there isn't a great deal GPs can do for OA other than prescribe anti-inflammatory pills and, sometimes, ever stronger 'painkillers'.

    We can help ourselves with exercise (Ask to see a physio if you haven't been referred), a sensible diet and weight and a sensible lifestyle ie not overdoing things and taking note of what our bodies say to us. This doesn't sound like good news for you and, alas, many on here have had tó change their work for something more congenial to achey joints. Is there any way yours could be adapted?
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • frogmorton
    frogmorton Member Posts: 29,493
    edited 30. Nov -1, 00:00
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    Hearing what Stickywicket said about adapting....maybe the 'subjects' you photograph could be put at a more comfortable height for you and the same with your camera/lens??? Just to avoid having to bend your neck too much...?

    I would also recommend seeing a physio for advice to strengthen the muscles which support your spine.

    Toni xx
  • Tara060692
    Tara060692 Member Posts: 3
    edited 30. Nov -1, 00:00
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    Hi maybe you could try the wheat bags or the heat patches on your neck and probably some ibuprofen as well as ur muscles or joints maybe imflamed and if your Rheumey has or go or Rheumey nurse prescribed any pain relief I no they don't like to prescribe it because they don't want u to get addicted to some of the nsaid or even cocodyamol coz of the addiction behaviour they can cause or ask ur go if u can have some diazepam for night time when u finish your work to help with the pain and to help relax ur muscles tendons and ligaments around the joints when your at home and in bed to sleep or during sleep do u wake up with the pains? Or isit when u just do your type of work? Only other thing I could think of to help is maybe a hot water flask and a hot water bottle as tht should help relieve the pain but I wouldn't pressure your gp or specialist to go on any morpheine or oramorph or any Opiete type of pain killer as the side effects are not nice for example if you dnt take it on time u go in withdrawal of the drug u are on u can also suffer shakes low blood pressure inflamed stomach and digestion tract and even bleeding from your back passage as well as mood swings and even sleep Apenia as well as the sweats very bad as well as sweat rashes which lead to sores I only found out now since being on them coz I used to say to my mum my brother needs to just learn how to deal with it and get off the morpheine patches and tablets or lower the dose then when he come down to a very low dose he's had nothing but health problems as well as his both hips and knees need replacing but he won't do it as he will have a long recovery due to delaying the operations but know I felt his pain when his patches weren't ready and they used to order it in in the pharmacy and he will have the withdrawal because they wouldn't even have one to tie him over to the next day and the gp wouldn't give him a prescription for a tablet til he could get his patches after work or the go was late prescribing or he was a few days to early for a repeat or they would ask him to go to surgery a lot and tell him to come off it but that was the only way he could do his job and earn money! Or just talk to ur Rheumey nurse or specialist or maybe try the pain clinic that may help you
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Hello again Hopijohn, just to clarify the last reply you do not need a rheumatologist, they do not deal with osteoarthritis because it has a different cause. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Hopijohn
    Hopijohn Member Posts: 3
    edited 30. Nov -1, 00:00
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    Hello everyone - I am Helen, John’s wife, we are so grateful to all your replies and have learnt things we didn’t know, I am on a forum for my cancer so know how helpful these places are. We wanted to say sorry that it looked like we never responded or got back to you all, but a day after John joined this forum he suffered huge pain in his neck and was bedbound, his hands seized up and he couldn’t use them at all, even to lift a cup of tea. It then got to the point that it hurt to breath so he was taken to hospital, they done an MRI which didn’t seem to show anything conclusive but said there were bulges in his beck so probably a slipped disc. He was sent home with the promise of an urgent appointment with the spine clinic. Hence why I am replying for him as he cannot use the keyboard. I know no one can help with this but wanted to let you all know and thank you. We just do not know what to do now, he cannot work, I don’t know if we would get any help with benefits, I myself get PIP because of the after effects of chemo and surgery. This one doesn’t seem to be getting better, he gets slight improvement one day and then seizes up again the next day. Hopefully as some of you have suggested that physio can help to strengthen some muscles maybe that is what the hospital will give him. Just one more question please - have any of you tried a chiropractor, we are clutching at straws as I imagine if they worked then everyone including the NHS would be doing it?
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Hello Helen, how kind of you to let us know what has been going on. I am sorry about your predicament, and John's too: what a difficult and frustrating time for you both.

    Chiropractors and osteopaths have a role to play for many but may not be helpful (let alone beneficial) for those with any form of arthritis. I think it more important for John to receive an accurate diagnosis before any kind of physical manipulation is undertaken, until it is certain what is happening with him it's best to minimise the risk of causing further complications. I am not a doctor but I have been plagued with ill-health since childhood in the 1960s and had to endure experiencing some of my Ma's more batty ideas to make me better. Needless to say none of them did (but they were nice little earners for the practicing charlatans). I wish you both well and please let us know how things go. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Mike1
    Mike1 Member Posts: 1,992
    edited 30. Nov -1, 00:00
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    I was discharged from the Pain Clinic about 10 years ago with the words "there is nothing else we can do, keep taking the Morphine" Neurosurgeon wouldn't do anything due to too great a risk of paralysis; Physio said that the GP only sent me to him to cover his backside as he should have known that there was nothing he could do. Thankfully the OTs have helped with aids around the house, neck brace, hand braces etc and the OTs from the RAFBF have been brilliant providing me with an electric wheelchair.
  • frogmorton
    frogmorton Member Posts: 29,493
    edited 30. Nov -1, 00:00
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    Helen

    I am so sorry to hear you poor husband has got worse! The poor man and you too recovering from cancer.

    My daughter used a chiropractor recently for her back pain and it worked really well for her - one half hour treatment. She had been sort of collapsing with it (she's 24 and a carer). I would think a good Chiro would not do something which would make anyone worse and would advise against it if he/she thought it wasn't in your husband's best interests. :?

    I am thinking maybe chase up the spine clinic apt and hopefully following on from that ask to see and OT to get some support like MIke1 had.

    I think PIP is worth a try for definite - I expect you could do with the money get some help for John at home! Not sure how long you have to have the condition for though

    Love to you both

    Toni x
  • JoeB
    JoeB Bots Posts: 83
    edited 30. Nov -1, 00:00
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    Assuming that your GP has exhausted their knowledge of available options and you have also been seen by an orthopaedist or rheumatologist, then I would suggest you request your GP refer you to a specialist pain management clinic.

    In the meantime acupuncture may be an option worth exploring.


    Arthur