what to do !!

have been ill since august my body just well the only way i can say it is it went as stiff as a bored couldnt move at all and was in extreme pain. since then has got a bit better but got sore fingers knees neck ectra . have not been told what i have by the doctors yet just seem to be getting know where at all. after various blood test and x a rays and alot of my moaning they finally sent me to a rhemy who did nothing and just took more bloods and x arays. just feel like im hitting my head againts a wall and getting know where and am not seeing the doc till 3 months really dont have the energy to keep going on at them . so can anyone surgest what i can do ??? sorry about my spelling fine it hard to type . xx

15 Replies

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  • Keep on at the doctors and consultants, have they given you anything for the pain. Have a go at your gp and see what they can do. If it is ra the sooner they get you on meds the sooner it will settle down. I'm afraid you will have to keep nagging.

    Don't apologise for having a moan and not spelling things right,we all doo that at times and as your in pain you can't expect anything else.

    You take care and we are all here to support you.

    Sylvi.x

  • arh thank you slyvi. the gp put me on diclofenac sodium and co codamal but the ra doc told me to stop taking them and didnt give me anything eles. just seems to me these doctors do not comunicate with each other at all. am hoping once it gets sorted i might be able to change hospitals cause the one i went to was alful staff just kept walking in asking about other patients even when the nurse was about to take my blood and shove a needle in my arm they put a letter in front of her face scared me to death and left a massive brusies in my arm not good. lol

  • That is horrible, rude, unethical, disrespect to a patient!! That should be reported! Especially since you got bad bruises from it.

    In their training, they should have been taught the patient in front of you is the most important at that moment. Should not have been interrupted.

    That makes me furious!

  • Complain to pals at the hospital where you were. Pals is a patient liasion service,contact them and put in a written complaint. xx

  • Emma, one of the many horrible things about this disease is how difficult it is to get diagnosed. Lots of the symptoms are very variable and docs don't want to give people really strong drugs if they're not 100% sure. But that's not much help to you when you're in pain! Lots of us have had foul experiences with GPs and hospitals, or very slow journey's to get a diagnosis, and as Sylvi says you just have to keep on at them. Ask you GP to see if he/she can get you an earlier appointment with the consultant as guidelines are that you should be seen as soon as possible. Or at least get you the number of the rheumy nurse so you have someone to talk to.

    Have you tried taking ibuprofen 3 times a day or the paracetomol/ibuprofen mixes? Lots of people find that really helps just as much as diclofenac. And try warm wheat pillows and/or icepacks on very sore joints to soothe them a bit.

    Lots of courage to you, and don't give up. Pollyx

  • Emma Totally agree with everything Sylvi and Polly have said.

    It is a very difficult disease to diagnose and the first stages of it can be very painful and scary.

    Do go back to you GP and don't be afraid to tell it him/her just how you feel.If it is RA there is treatment to help and better medication is emerging all the time.

    There are always people on this site to offer advice and support so don't feel you have to suffer alone.

    All good wishes xxx

  • Can I suggest calling the NRAS helpline (there number is on their website)

    They are very helpful and supportive and I am sure they will have some ideas to get things moving a long.

    They have been doing a lot of research and campaigning recently about the length of time it takes people to get a diagnosis.

    Becky

  • Sorry to hear you're in so much pain but believe me you are not alone. My gp gave me celebrex anti inflamms which helped slightly during the day when I was moving about but I went back to her because of the pain at night when I was in bed and not moving. She gave me amitriptylene which were great after the dose was increased the second week. Go back to your gp for pain meds !! I am fuming they have left you without an alternative. It does take a while to get diagnosed so hang in there. Don't worry about spelling I only usually use my phone and when hands are bad god knows what letters I am pressing hahatake care hun and good luck xxx

  • Ditto to everything said here. I take ibuprofen 400mg x3 per day and you can buy the liquid ones they are better for the tummy - my GP prescribed them for me and they make a huge difference to me. If I stop it all comes roaring back and when I'm on them it's just background pain and I can get on with my life. I also take a co-codimol at night and between 1-2 amitriptyline and if I stick to this things are manageable while I'm waiting for the MTX to start working hopefully. I don't see how a rheumy can expect you to function on no meds at all and apart from the amitriptyline and MTX the others I mention are all available over the counter and don't stay in the system for long so I can't see why you wouldn't be encouraged to take them? Be firm and insist on explanations if you can? Tilda x

  • Eleven years ago I was on holiday - cliff walking in Cornwall. My knees hurt but I put that down to a gruelling schedule up and down paths. Then one day Ii woke up with stabbing pains in nearly all my joints. Stayed in bed was completely blown away by it all. When I got home I went to GP who I'd been seeing for a while - a youngish man, quite good I thought. He just looked at me and told me to lose weight and this was just wear and tear.

    Now my mum had RA - she developed it when I was about 10. So I knew a thing or two, so I went to the senior partner GP and said that, and that I wanted to 'eliminate' RA please. He sent me to the local orthopaedic hospital in Oxford and after some blood tests they diagnosed RA on the basis of raised inflammatory markers. It took a lot longer to get stabilised on meds that worked, but that was almost a decade ago and we know a lot more about anti-TNF which do work! - at least for me.

    Now I can cope with most everyday jobs, though I still have what Tilda describes as 'background' pain and sometimes, like today with snow on the way, I get nasty pains mainly in the knee.

    I think the main conclusions I'd draw is to persist. There's no need to fall out with medics - although I never went back to that doctor who dismissed me! But we usually have a choice and NRAS will be able to advise you on the best approach to take, questions to ask etc.

    And I also think that stress makes my symptoms worse, so taking it easy and pacing myself - short rests between tasks, not too many tasks either - that's a big help which lots of people on this site talk about.

    X Cathie

  • Hi

    Poor you, I would go back to gp and ask them to restart your nsaid and pain relief. Nsaids are used to treat a variety of arthristic conditions, we all start of with them, until rheumy confirms diagnosis and then we get the dmards.

    Seek a second opinion at a different hospital, maybe you might get a firm diagnosis and better patient treatment.

    They must of given you the rheumy nurse help line - it will be on the hospital website, call them, they have to help!

    Hang in there, the road to recovery can be long & rocky, but You will get there.

    You are in our thoughts

    Sci x

  • Hey Sci - just to point out that not all of us are given our rheumy's contact details, or secretary or have rheumy team/ nurses to turn to. I asked my consultant and he said that there were very few rheumy nurses in this part of Scotland and no one apart from my GP who I can contact if any problems - who will then contact him if needs be. Maybe not that easy to get second opinion either - I know I couldn't have if I'd needed one unless I traveled South and went private. It really is a postcode lottery out there but GP should be the first port of call I imagine - it was for me when I was in this boat and still is now really. TTx

  • Hi Emma

    Just to reiterate Becky's suggestion, you are welcome to call our helpline on 0800 298 7650. If you prefer, you can also email us at: helpline@nras.org.uk. The helpline is open from Mon-Fri9.30-4.30 but will be closed between Christmas and New Year.

    As others have said, you need to be forceful about this, but it can be a very difficult condition to diagnose. The main thing is to make sure that you are not being left without a plan of action, so find out what medication (such as painkilers and anti-inflammatories) you can take now, and what the next step is in terms of further tests, plans for another GP or rheumatology appointment etc, and find out what their current thinking is. Are they ready to rule out RA? If so, what else are they looking at this being? If not, what are the next steps towards getting a diagnosis? Having the answer to these questions and understanding what the next step is could really help to put your mind at rest. It is awful to be left in limbo.

    As I said, please call us if it will help.

    Kind regards

    Victoria

    NRAS Helpline & Information Coordinator

  • I am so sorry to hear of your bad experience. I hope things get sorted for you soon xx

    Alison

  • thank you everybody for all your help xxxx

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