Hi everyone

creakyjoints
creakyjoints Member Posts: 16
edited 13. Dec 2016, 12:32 in Say Hello Archive
Hi everyone, I'm Sue and I have just registered. I've had a lot of problems with my back and with multiple joints for over 20 years now. I had an ESR test near the beginning and it didn't appear to be RA and now it all seems to be following the pattern of OA (both knees, both hips, both hands/wrist, elbows and sometimes shoulders). I have never seen a rheumatologist or had any x rays except once on my spine many years ago and this showed arthrocytes but I was told it was at a level that would not cause pain in everyone. I have had occasional steroid injections in both shoulders,one elbow and my spine but not recently as Iam much more careful of my joints now.
I have been prescribed NSAIDs, amytriptylene for sleeping and co-codamol for very occasional use all this time. It is all on repeat so I have not been to the doctor's much. Now the doctor I always had has retired and both times I have seen the new one I have had to see a student first and it has not all been relayed very well. The doctor didn't seem to have looked at my notes at all. Also i don't think she is willing to give me any co-codamol.
Anyway the reason I have joined this forum is that I have become more and more isolated over the years. Life seems to revolve around trying to get a night's sleep and keeping up with housework etc. Most people I know don't even know I have these problems and the one or two that I have said much to seem to choose to not know (if that makes sense). Sorry to moan but it is my only opportunity!
I just wondered - do most people get referred to rheumatology or is it the usual thing to just get prescriptions for donkeys years?
Anyway pleased to meet you all.

Comments

  • moderator
    moderator Moderator Posts: 4,088
    edited 30. Nov -1, 00:00
    Hi creaky joints,

    Good to meet you, you have managed really well for a long time which is fantastic, you deserve a big pat on the back but sending a gentle ((())) hug so as not to hurt you - or me for that matter!

    This booklet might help
    https://arthritiscare.org.uk/assets/000/001/060/Download_Living_with_Osteoarthritis_Factsheet_original.pdf?1441116617

    It sounds like osteo arthritis which is usually managed by a GP, it's never good when a GP who understands our condition moves on and we have to 'train up' a new one. There are tips for seeing your GP, like writing down the queries you have especially as it sounds like your condition has moved to a new phase.

    You won't be alone here, we all have arthritis so we 'get' the problems you are experiencing

    Take care
    Yvonne x
  • dreamdaisy
    dreamdaisy Member Posts: 31,552
    edited 30. Nov -1, 00:00
    Hello, it's nice to meet you but I am sorry you have had to find us. I too am twenty years in with multiple affected joints, it's far from fun isn't it? I have two kinds of arthritis, an auto-immune which has led to OA.

    There are around 300 kinds of auto-immune inflammatory conditions, some are termed 'sero-positive' because rheumatoid factor is present in the blood, others are 'sero-negative' (where it isn't). GPs are becoming more aware of the complex nature of the conditions and their diagnoses so I would hope that someone will now take a closer look at you and your history, to my way of thinking leaving you on endless repeats for this length of time is not good. Sometimes we have to make a fuss so people know what is going on and refer us to those who are better informed; your troubles are obviously increasing and maybe you need a change in medication, blood tests (to rule things either in or out) and fresh Xrays. Depending on what they show you may then get a referral to rheumatology but they deal only with auto-immune inflammatory conditions, not OA. DD
  • stickywicket
    stickywicket Member Posts: 26,619
    edited 30. Nov -1, 00:00
    Hi Sue and welcome from me, too.

    It is very true that arthritis of any kind can be isolating. We can be too achey or too tired to do, or enjoy, many things that others take for granted and, as a result, can easily feel cut off from the mainstream. One of the great values of a forum such as this is that we all 'get it'. (Indeed, we've all, unfortunately, got it :lol: )

    From my time on here I've realised that there are big differences with GP practices. I've just moved house. My previous practice revised my prescriptions annually but I've no idea what my new one will be like.

    If you are not used to dealing with docs it can be hard to be assertive but I've always found the straightforward, upfront but friendly approach to be best. If you think you might have an auto-immune form of arthritis you are perfectly entitled to ask what they think and even for a referral to a rheumatologist. Is there anyone in your family with auto-immune issues? When your joints are bad are they hot to the touch? Do you feel fluey? These are all signs of an auto-immune arthritis.You are also with your rights to ask not to be seen by a student if that's your preference. Nor do you have to stick to whichever GP you have been allotted in your practice. Anyone will see you.

    You don't actually need a prescription for low dosage co-codamol. It can be bought over-the-counter. But it would be better to have a proper meds review.

    If it is definitely OA you will be dealt with by your GP. My rheumatologist deals only with my RA. The consequent OA is left to my GP. Physio might be an option. Certainly we all benefit from keeping as fit as possible but not all forms of exercise are suitable for everyone. I have to keep up with my exercises to maintain my (slight :roll: ) range of movement.

    I do hope you can get some answers but, in any case, stick with us because we can at least help with the feelings of isolation :)
  • creakyjoints
    creakyjoints Member Posts: 16
    edited 30. Nov -1, 00:00
    Thank you for your replies. Yvonne, my old GP was pretty rubbish anyway but at least he knew how long I'd had problems and had mentioned the possibility of joint replacements when I was older so I felt that if I ever did get to the point of needing one or more it would be considered. I know feel as if I am seen as only just presenting with symptoms despite my very long history. It is partly my own fault for hardly ever going to the doctor. Also my surgery operates telephone triage and because it is a long way and I don't drive I allow myself to be fobbed off quite easily.
    DD, it most probably is osteo.They thought of other possibilities when I was in my early forties but now I am older it is seen as almost to be expected at my age. It sounds from what you all say as if it is quite normal not to have much in the way of investigations. I suppose I am lucky that I am not that much worse than I was back then apart from at night. I take more care not to do the things which cause most problems and have retired so am no longer doing jobs which killed me.
    StickyWicket, Yes I know about non-prescription co-codomal thanks. My old doctor prescribed 2 x 30mg so quite a difference I very rarely took them because they give me abdominal pains but it was good to have some in for an absolute crisis. No, my joints don't feel hot except when I have had frozen shoulder. I do feel fluey quite often but it's probably not connected. It must be awful for those of you with both inflammatory and osteo arthritis.
  • stickywicket
    stickywicket Member Posts: 26,619
    edited 30. Nov -1, 00:00
    feel as if I am seen as only just presenting with symptoms despite my very long history.

    An interesting point. I'd guess, with OA, that's how it is for many, if not most, GPs. A collection of symptoms until they can hand people over to the surgeons. They can't cure it and even relieving the symptoms is mostly in the hands of the sufferer – exercise, diet, weight etc.

    Re the abdo pains – cocodamol isn't usually one of the worst offenders there. NSAIDS are the real villains and, if you're on them regularly, you should have also been prescribed a stomach-protecting med to go with them – omeprazol or lansoprazol usually. Also always take them with food as that helps too. It doesn't have to be a meal – just a plain biscuit or piece of fruit helps. I hope that might help a bit.
  • creakyjoints
    creakyjoints Member Posts: 16
    edited 30. Nov -1, 00:00
    Thanks, I know it is the coco because I take them so rarely.They just make my guts seize up which I think they do for a lot of people. I do take Omeprazole with the Diclofenac.By the way I think when I said arthrocytes in my first post I probably meant osteophytes. It was so long ago I couldn't remember.
  • stickywicket
    stickywicket Member Posts: 26,619
    edited 30. Nov -1, 00:00
    Just a thought that might be worth running past your pharmacist.

    If you only take cocos rarely then the 15 / 500 might do the job when needed and might not mess up your stomach if the culprit is the codeine element.
  • creakyjoints
    creakyjoints Member Posts: 16
    edited 30. Nov -1, 00:00
    Yes, I was thinking that. I'll get some in to try next time. Thanks

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