Grumble

sulkycat
sulkycat Member Posts: 71
edited 6. Mar 2012, 14:40 in Living with Arthritis archive
You have been warned ;-)

Having tried many other DMARDs and now on Leflunomide, and having been told in no uncertain terms there is very little else I can try, I am currently having a pretty bad flare up plus stomach problems (enough to cancel this morning's blood tests as I didn't think the nurse would appreciate me exploding in her room!).

I don't feel I have seen any improvement since diagnosis in April last year - throw in all the side effects of various meds combined with exhaustion and in many ways I feel considerably worse.

The RA nurse I saw last month said that also having ME makes me 'feel more pain than there actually is' and that 'if we did a touch test you would score extremely highly but it wouldn't necessarily be true'.
This despite my hand at the time being so badly swollen and tender my GP later checked it wasn't broken. I am not a wimp - I am a tough little Northern lass who has always gritted her teeth and got on with it - THIS BLOOMIN' HURTS!

She has ruled out biologics for the above reasons.

So where do I go from here? Do I pester them, or just accept that this is as good as it gets - some bearable days where I can get to the post office by taxi and home again, many days where I cannot leave the house at all. I have very little 'life' and zero social life.

I don't have an appointment at the hospital at all, other than for scans next month (every few months as part of the trial I am on).

Help or reassurance please! Thanks in advance and thank you for letting me off-load a bit here,
Fed up and very sore of Leeds ;-)

Comments

  • suzygirl
    suzygirl Member Posts: 2,005
    edited 30. Nov -1, 00:00
    Just wondering what pain meds you are on? Have you tried gabapentin etc? So many painkillers about, I would be lost without mine, even on DMARDS. I was told it takes a combination of meds to make life tolerable and that it would be always so from now on. I didn't understand at the time. Now my breakfast is a vast array of meds, I do. :lol:

    My rambling point is speak to the gp or the actual rheumy. Your nurse whilst she may be lovely if obviously not good at suggesting options for you. I ce packs, hot water bottles, gels, sprays, I have a vast array and use different things for wherever is hurting at the time. I am sure others will agree that they use lots of different htings.

    As for disease control, you really need to speak to the consultant, maybe steroids would help for a short while?? I have been on them for 3 years now, and am unable to lower them so far.

    I wish you well and hope my rambles make sense.
  • stickywicket
    stickywicket Member Posts: 26,771
    edited 30. Nov -1, 00:00
    Sulkycat, I've read this through a couple of times because (1) I know from your past posts you're 'a tough little Northern lass who has always gritted her teeth and got on with it' and (2) you're in Leeds so should have an excellent rheumatology team. Having said that, I think your nurse's comment about your feeling 'more pain than there actually is' was unhelpful and untrue. There is as much pain as you feel - no more: no less.

    I don't understand why she's ruled out biologics. Because of your ME? Your pain threshold? Surely a nurse can't make such a decision? It should be the rheumatologist.

    And I don't understand the 'no appointment at the hospital' bit. Is it that you don't have one booked yet or that they don't want to see you again at all? When I see my rheumatologist she gives me a time-lapse for my next appt so I don't know when it'll be (Other than the 3/6/12 months she's written on the sheet until they contact me.)

    Something isn't right here, sulkycat. You need more than you're getting. Your GP seems sympathetic. Maybe you should start there. But don't give up.
  • sulkycat
    sulkycat Member Posts: 71
    edited 30. Nov -1, 00:00
    Thanks for the replies.
    I am on several pain killers and anti-inflammatories.

    I feel I am walking a fine line between standing up for myself and being labelled a pest!
    I definitely left the nurse appointment feeling like a hypochondriac.

    She said no biologics until the scans show definite bone damage, NICE guidelines etc etc. She also made me feel a bit of a twit for having had bad reactions to the other meds so far (meths tablets and injections, sulfa etc). I asked outright if I should have made myself stay on them longer and ride things out and she said no, so why she was a bit off with me I don't really know.

    I am not a rude person - I have no qualms about asking questions, but I am not a stroppy patient.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    My bones were fine when I had my first anti TNF, it was granted because sulph, meth, lef and cyclosporin had all failed (individually and in various combinations) to bring the inflammatory arthritis under control. Rheumatology nurses know some stuff but not all stuff as they are NOT rheumatologists. There is one new R nurse at my hospital who is ridiculously ill-informed for the job she is doing, and I reckon you've found another one. Get thee to your rheumatologist soon, sulky, they are the ones who know what can be done within the rules and guidelines for your area. DD
  • Numptydumpty
    Numptydumpty Member Posts: 6,415
    edited 30. Nov -1, 00:00
    Hi sulkycat, I don't get this feeling more pain than there actually is bit!
    Surely the pain is what you feel, not what she perceives it to be. Therefore the pain you feel is the pain there actually is. Or am I missing something?
    Wishing you well,
    Numpty
  • sulkycat
    sulkycat Member Posts: 71
    edited 30. Nov -1, 00:00
    Have had the worst night ever, gave up at 5am and came downstairs, finally nodded off on the settee at about 7am.

    Riddled with pain (fingers, left hand, knees, right foot, back) and the good old flu-like side of a flare up.

    Am going to try to get another hours kip then will ring the RA line and see if they ring me back. Even if it just goes on my records I think they need to know I am really suffering.
  • tillytop
    tillytop Member Posts: 3,460
    edited 30. Nov -1, 00:00
    Oh sulkycat you are really suffering aren't you and I am so sorry.

    I agree with what the others have said - it seems to me that you are not being given the care you deserve and no-one with inflammatory arthritis should be left without regular appointments.

    Has your rheumatology nurse ever carried out a proper DAS (disease activity score test)? You may already be aware of these but, if not, they are the generally recognised method of determining current disease activity, taking in relevant factors such as current blood test results, number of tender and/or swollen joints and your own score of the way you are currently feeling. This information is then fed into some kind of computer programme which then spits out a number which can then be used to help determine effectiveness (or otherwise) of current meds and to aid the consultant in making decisions about what help you need. It is also used as part of the NICE eligibility criteria for biologics. As for your nurse telling you that you have to have joint damage BEFORE you qualify for biologics - well that is just not right - my understanding of the point of all the meds we take is to stop the damage occurring in the first place, or if that isn't possible, to slow it down as much as possible.

    I well understand the feel of being a hypochondriac and I also know from experience that when you are so unwell it is very difficult to stand your ground and to fight your corner. I feel that you are absolutely right to push for more help and I think that what you need is proper assessment by a rheumatologist and, ideally, for them to see you while you are like you are now. I would hope that your rheumatology clinic would have an emergency clinic to see people in your situation so maybe this is something you could ask when you ring the helpline again.

    The links below to the National Rheumatoid Arthritis Society (NRAS) website will take you to their booklet on Biologics - page 27 details the NICE eligibility criteria - and to their booklet explaining the DAS tests
    both of which might be useful for you so the nurse can't "fob you off" so easily next time.

    http://www.nras.org.uk/help_for_you/publications/publication_detail.aspx?id=a0B80000008XzmxEAC

    http://www.nras.org.uk/help_for_you/publications/publication_detail.aspx?id=a0B80000005CJTnEAO

    Really, really good luck with speaking to the hospital - and if you get no joy, hopefuly your GP can move this forward for you quickly.

    Thinking of you.

    Tillyxxx
  • pinkbritishstars
    pinkbritishstars Member Posts: 731
    edited 30. Nov -1, 00:00
    Hi Sulkycat

    First of all, big hugs. I know how you feel - certain people in my life make out that I have no pain, fortunately those of us on here know that that isn't true nad that our pain is very bad.

    Hope you get to see the rheummy.

    Let us know how you get on.

    xx
  • stickywicket
    stickywicket Member Posts: 26,771
    edited 30. Nov -1, 00:00
    sulkycat wrote:
    will ring the RA line and see if they ring me back. Even if it just goes on my records I think they need to know I am really suffering.

    Absolutely the right course of action, sulkycat. I very much hope you don't get the same nurse. And don't worry about that 'fine line' you're treading. We all do it at times. Needs must. Please let's know how you get on.
  • bubbadog
    bubbadog Member Posts: 5,544
    edited 30. Nov -1, 00:00
    Dear Sulkycat, I do hope you get to see an actual Rhummey consultant instead of a nurse! And I want to say never give up and if your not happy with what someone says like what the nurse said to you, never just except it as that's it. If you have a good relationship with your G.P tell them what's been said and see if you can get a second opinion.
    I send you a big (((HUG))) and hope you get some answer's from someone who know's what their talking about! And you get your pain sorted. Have you got your tummy problem sorted? As I suffer with problem tummy! Do you get bad cramps and does it feel like you've been 10 rounds with David Haye? I do hope you get it sorted. Keep us updated Sulkycat I would like to know how you get on.
  • tillytop
    tillytop Member Posts: 3,460
    edited 30. Nov -1, 00:00
    Hello Sulkycat

    Just wondered if you managed to speak to someone at the hospital? Really do hope so.

    Thinking of you.

    Tillyxxx
  • sulkycat
    sulkycat Member Posts: 71
    edited 30. Nov -1, 00:00
    Hi - thank you all for the fabulous replies. I thought my knitting group were brilliant, you are all on a par!

    No reply from hospital as yet, it can take a week to hear back from them.

    Today has thankfully been better, managed some time in my tiny garden and loved being in the sunshine and air. Had a sleeping tablet last night so got some decent sleep, what a difference that makes.

    Will post as soon as I hear anything.
  • pinkbritishstars
    pinkbritishstars Member Posts: 731
    edited 30. Nov -1, 00:00
    Hi Sulkycat

    Well done for getting out in the garden - it's been a glorious day - let's hope we have more of them!!

    Hope you hear back from the hospital soon hun.

    Pink xx
  • sulkycat
    sulkycat Member Posts: 71
    edited 30. Nov -1, 00:00
    Wasn't it beautiful!
    We have had the mild temperatures but no sunshine, today was just beautiful (forecast to be cold next week so I am making the most of it).

    I hope everyone else has managed to grab a bit of that lovely sun.
  • mig
    mig Member Posts: 7,152
    edited 30. Nov -1, 00:00
    Hi Sulky cat, love the name just how i feel sometimes.Just wanted to wish you well and they get back to you soon.(((()))) Mig
  • sulkycat
    sulkycat Member Posts: 71
    edited 30. Nov -1, 00:00
    I finally had a reply from hospital, one of the RA nurses rang and said I have a choice.
    Can either go in as an emergency and have steroid treatment, maybe directly into my hand this time, or wait until 21st March (my scans) and see a Dr then.

    After much info hunting on his part he rang back to confirm I DO need to see a Dr on 21st (no mention of it at all in my paperwork and appointment) and that having treatment before then would obviously skew the results.

    So I am gritting my teeth and waiting until then, and in his words 'Do not leave the hospital until you have seen a Dr!'

    So better than nothing, and for once they seem to be taking the level of pain seriously.
  • stickywicket
    stickywicket Member Posts: 26,771
    edited 30. Nov -1, 00:00
    Good. (I think.) Start knocking off the days on the calendar, sulkycat.

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