In pain :-(

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lynnemarie1123
lynnemarie1123 Member Posts: 295
edited 3. Jun 2014, 17:52 in Living with Arthritis archive
Hey guys. Hope you are all well. I'm struggling at the moment. I've been diagnosed for over 5 years now with unspecified seronegative arthur. Upon my last visit to rhumy he said I was developing oa too :-( and sent me to physio which was fine! I'm on sulfa an s/r diflofenic x anyway I've got a lot worse in the pas few weeks x having to take 30 500 co codamol to sleep! I have a v active job and manage well z until I come to sit on a evening and relax all my body stiffens :-( I can hardly climb the stairs yo lift one leg in front of another is agony!! ) I'm due to see consultant again start if July. X what do you think the next step will be ? I've had no further x rays taken since my diagnosis xx I'm 37 xx Tia xxx
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  • As5567
    As5567 Member Posts: 665
    edited 30. Nov -1, 00:00
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    Sorry to hear you are having a bad time, it sounds like your condition isnt very well controlled right now and it might be a good idea to call your hospital's rheumatology helpline to see if they can do something for you in the meanwhile such as a steroid injection of some sort or maybe bring forward your appointment with the doctor.

    I'm not sure what the next steps would be, but I suspect your doctor would want to have blood tests and possibly add/amend your medications?

    I hope your appointment goes well in the future!
  • lynnemarie1123
    lynnemarie1123 Member Posts: 295
    edited 30. Nov -1, 00:00
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    My bloods aren't good at the moment x I'm anemic which isn't helping the situation!! It hurts to sleep ( I know it sounds strange but I can't turn over in bed without agony!! ) well n truly fed up ;-(
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    I'm surprised that you are only on sulph and diclos, how long have you been on them? Have you tried anything stronger? To my thinking you are not that well-controlled at the moment but that's a matter for you and your rheumatologist. I can empathise, I've been like this for years now and it's far from pleasant. I have OA in both ankles, both knees and both hips, all resulting from the PsA and keep the pain relief to a minimum so I have an escape lane when things escalate (which they do every now and again, 'tis the nature of the beasts :roll: ) DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • lynnemarie1123
    lynnemarie1123 Member Posts: 295
    edited 30. Nov -1, 00:00
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    What else is there to take x I have amitriptline when I'm not working n 30/500 cococadmol. I've been on sulpha for about 5 years now xx
  • stickywicket
    stickywicket Member Posts: 27,731
    edited 30. Nov -1, 00:00
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    There are several other DMARDS besides sulph not to mention the biologics. If your disease isn't well-controlled your rheumatologist can prescribe something else either in addition to the sulph or instead of. The amitryp etc deals only with the pain not the underlying disease. Try ringing your rheumatology helpline.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • lynnemarie1123
    lynnemarie1123 Member Posts: 295
    edited 30. Nov -1, 00:00
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    Ahh I never realised there were others! I'm hesitant in ringing the helpline! I once rang in agony and they told me it wasn't anything to do with my condition and told me to go to gps x Gp said it was my condition and refered me to physio x introduced me to amitriptline ( which btw makes me feel depressed and headachy - is this normal ? ) app at consultant is 5 weeks away ! Best just put up with the pain til then !!! Xxx
  • stickywicket
    stickywicket Member Posts: 27,731
    edited 30. Nov -1, 00:00
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    Only you can decide if the pain warrants trying to bring forward your appointment or not but don't be put off by one bad experience. I f, like me, you have both an inflammatory arthritis plus OA, the GP will deal with the OA and the rheumatologist with the inflammatory arthritis. Keep a diary of what is happening between now and your appointment. Take photos of any inflammation. It will all help.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • lynnemarie1123
    lynnemarie1123 Member Posts: 295
    edited 30. Nov -1, 00:00
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    Your right! I have let it put me off x I can't imagine them bring my app closer! I'm supposed to be seen 4 months after my last app in November!! It will be 8 months when I c them x I will keep a diary x it's a good idea x they haven't def diagnosed oa yet! They Just thought that was happening. I had x rays done when I was diagnosed over 5 years ago - but had none since! Swimming even hurts me now and I love swimming :/( xxx
  • stickywicket
    stickywicket Member Posts: 27,731
    edited 30. Nov -1, 00:00
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    I'm not surprised at the delay. All NHS departments are over-stretched now. It used to be that your 6 monthly appt was made as you were leaving the current one. Now it's just a recommendation. They often, if not usually, get put back. At least they're still free.

    X-rays don't tell the full story. Blood tests can be more revealing.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • barbara12
    barbara12 Member Posts: 21,281
    edited 30. Nov -1, 00:00
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    Hello Lynne
    I am with the other you don't seem to be getting the best of care, I would go back to your GP or Rheumy and get it over to them how you are suffering..I do hope you get some help very soon..
    Love
    Barbara
  • lynnemarie1123
    lynnemarie1123 Member Posts: 295
    edited 30. Nov -1, 00:00
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    Just had a family day out and my deteriation seemed more apparent :-( x I've phoned the rhumy helpline they are open tom 9-11 so going to ring and have a chat with them - hopefully!
    I am aware that blood tests tell more - I have my 3 monthly ones - however can osteo show on blood tests ???
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    OA won't show on blood tests, what are your bloods showing? If your ESR and CRP are raised then to my amateur eye it's evident that the meds are not cutting the mustard. Over the years I've tried methotrexate, leflunomide, cyclosporine, sulphasalazine, Enbrel, infliximab and humira. I've also had steroid injections and spent three years taking oral steroids (and one year coming off them). You do not seem to be receiving anything like the level of care that you should - it's time to make a polite fuss. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • lynnemarie1123
    lynnemarie1123 Member Posts: 295
    edited 30. Nov -1, 00:00
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    I was brave and spent 45 mins trying to get thru to rhumy helpline x spoke to a v nice male nurse who said things needed to change on their behalf!! He is contacting my Gp and my consultant! He agreed I'm doing everything on my side as far as pain management is going! I felt like crying in the phone! Telling him how much pain I was in and how it's effecting my day to day life xx he's going to contact me today or Monday ! Which just so happens to be my birthday!! :-) will let u know what he says x thànks guys xx
  • stickywicket
    stickywicket Member Posts: 27,731
    edited 30. Nov -1, 00:00
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    I hope he gives you a good birthday present :) I think pain can rob us of our self-confidence so well done on braving the helpline. Please let us know the outcome.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • lynnemarie1123
    lynnemarie1123 Member Posts: 295
    edited 30. Nov -1, 00:00
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    I took a amitriptline last night and the usual co codamol etc to get me thru the night! Needed a good sleep before my boys 9th bday today - o my days! Worst night ever! Shooting pains whenever I moved! Hardly any sleep at all - normally when I have amitriptline it knocks me out! This morning he pain was sooo intense I was in tears!! Could hardly move! Luckily mum n friends came to help with the birthday BBQ! All I could do was sit n feel sorry for myself x I can feel the heat from my hips and see the swelling in my lower back!! I'm scared to what's happening to me! I feel so helpless and worried to why this is happening ( is it anything I've done wrong ) xx sorry to moan but I've been in tears most of the day! I'm so used to running about and not having a problem with my body :-( xx
  • stickywicket
    stickywicket Member Posts: 27,731
    edited 30. Nov -1, 00:00
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    I'm sorry you had such a dreadful night but glad family and friends rallied round to help with your boy's birthday party. I hope you'll have a better night tonight.

    You ask is it anything you've done wrong and say you're used to running around and not having a problem with your body. I wonder if you're still doing too much running around. Clearly you're flaring right now and, even if you feel capable at certain times of living as you normally do, your body just can't cope right now and will bite back later. If that's so, please ease right back until you get to see the rheumatologist.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • lynnemarie1123
    lynnemarie1123 Member Posts: 295
    edited 30. Nov -1, 00:00
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    Your so right x I push myself far too much x exercising and dieting n trying to run a house and a full time job! I guess it's just hard to face up to the fact I'm not super woman and a failure :/( stupid body !!!
  • destiny0321
    destiny0321 Member Posts: 88
    edited 30. Nov -1, 00:00
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    The thing is we have to listen to our body if it needs rest give it a rest,
    If you can do some gardening do some but when body says enough you have to pack it in there is always the next day. Hope you feel better soon.
  • stickywicket
    stickywicket Member Posts: 27,731
    edited 30. Nov -1, 00:00
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    I guess it's just hard to face up to the fact I'm not super woman and a failure :/

    There is a vast area between 'superwoman' and 'failure' and it's where most of us live. You should try it :wink:
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Am I right in thinking you've been having this trouble for the past five years? It's evident to me that you are not on enough medication to control matters and you seem to be unaware of other meds which are available; this leads me to wonder just how honest you have been with your rheumatologist, if you say that you are carrying on much as usual he will take that to mean that things aren't that bad so won't offer alternatives.

    After my first five years I realised that things would have to change in the way I approached my life and they have. I am now in my eighteenth year and yes, my life is very different to how it was (and how I hoped it would be) but there again I am used to living with a rubbish body, I have done since I was eighteen months old. :wink: If you want things to improve then you should instigate the necessary changes, the first step being getting in touch with your rheumatologist and telling him everything that is going on. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • lynnemarie1123
    lynnemarie1123 Member Posts: 295
    edited 30. Nov -1, 00:00
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    Hiya daisy x I'm waiting for rhumy to get back to me was supposed to be Friday for today and nothing x although today has been slightly better than yesterday tonight isn't good and you can now see the swelling on my lower back and the heat radiating from there and hips is anazing!! I have been jobest with my consultant it's only the last year where problems gave been arising and I've only had one appointment in that year x in which I laid on the line how much pain I was in and how it was effecting my daily life ! His response was physio ! Which didn't really help!! X I'm considering going to Gp in morning because I can't carry on like this and I can't wait around for the rhumy to get back to me! The rhumy helpline is open tom pm so I'm going to try get they to them too! I feel totally out of control with it!
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    What does the word 'jobest' mean? :? I've checked my keyboard and still cannot make sense of it. :oops:

    Obviously rheumatologists have more than one patient even though they shouldn't :wink: A rheumatology nurse explained to me today they have the strangest of departmental oddities in that their patients can now be around for forty years plus - the NHS is not geared for that.

    Arthritis affects every aspect of our lives - and the lives of those around us. In this day and age it seems unreasonable, yes? DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • lynnemarie1123
    lynnemarie1123 Member Posts: 295
    edited 30. Nov -1, 00:00
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    ha! i meant honest lol xxx honest with my consultant xx
  • stickywicket
    stickywicket Member Posts: 27,731
    edited 30. Nov -1, 00:00
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    The GP can't help other than maybe to get in touch with rheumatology on your behalf. In your shoes I'd forget the GP and just ring rheumatology again. It's no good one person being very sympathetic if nothing happens as a result. Don't let them forget about you. This is their failure to do as they'd promised, not yours.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • lynnemarie1123
    lynnemarie1123 Member Posts: 295
    edited 30. Nov -1, 00:00
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    Sticky x like you said he will chase the rhumy for me x I'll chase them myself tomorrow xxx he's going to ring me on Friday to update me xx