Banging my head against a brick wall!

mrsdalloway
mrsdalloway Member Posts: 161
edited 19. Jun 2009, 03:12 in Living with Arthritis archive
Having started humira in February all excited because it worked straight away, I feel I am back to square one. All joints are swollen and sore again and inflammation has risen. Have just got off the phone to rheumy nurse to ask for knee x-ray when have next appointment (because the other one is on its way out) and to chat about my foot. She replied 'why whats up with your feet?' in a really surprised way. I explained that am in a lot of pain with them and that when doing DAS scores no one seems to want to look at them. She said ok then will have a look when you come in. Starting to feel as though shouldn't have said anything. I thought that if I gave a couple of weeks notice of stuff I wanted to chat about that would help her to organise something for me. Wish I hadn't bothered now!! I am starting to wonder whether it is me as when I read posts everyone seems to be offered MRI's and x-rays without any hassle. Please assure me that isn't the case and that you have to fight for them as well!? Sorry having a feeling sorry for myself day, thanks for reading x

Comments

  • tracey22
    tracey22 Member Posts: 41
    edited 30. Nov -1, 00:00
    I can sympathise i toohave to fight for xrays whilst others just seem to get them. Next time you go demand an xray, thats what i did and it worked. You dont have to be abrupt or anything just state your case.
    Hope you get it sorted out.

    tracey 22
  • debatat
    debatat Member Posts: 659
    edited 30. Nov -1, 00:00
    Sorry you are having a bad day. My experience has been that you have to ask for everything until I have felt as though I am a nuisance. It seems as though unless you ask they assume you are okay. Also I think although they are trained to treat the condition they have no real experience of living with the condition so don't always understand just how much it affects us.

    That's just my thoughts, I am sure that someone far more knowledgeable will come along and help you. I still think if you don't ask you don't get.

    Take care

    Deb
  • lindalegs
    lindalegs Member Posts: 5,398
    edited 30. Nov -1, 00:00
    Hi Mrsdalloway,

    I'm sorry but I can't reassure you that this is normal, not for me anyway. I don't have to fight for anything and my Rheumy team really take care of me - yours sound c**p to be honest.

    Is there any chance of you being referred to another Consultant or even having a chat with your GP about your problems with your present Rheumatolagist?

    As far as I can see this just adds more stress and doesn't help your condition at all.

    Luv Legs :|
    Love, Legs x
    'Make a life out of what you have, not what you're missing'
  • mrsdalloway
    mrsdalloway Member Posts: 161
    edited 30. Nov -1, 00:00
    Thank you both I do try and ask but am made to feel as though it is unnecessary, which worries me because I have already had tkr. I now have that many joints that are being affected by this current flare which has been on and off for about 18 months that a couple of months back I asked for an MRI or something more comprehensive than an x-ray and I was told that they never considered an MRI on someone who has not hit menopause (I am 38).
  • lindalegs
    lindalegs Member Posts: 5,398
    edited 30. Nov -1, 00:00
    I must say you write very well for a three year old Mrsdalloway and your married too - thought that was against the Law :shock: :wink::lol:

    Personally I don't know the criteria for MRI scans but if you have to wait for the menopause does that mean blokes never have them - I think not :roll: It sounds as though they're trying to fob you off if you ask me. :|

    Luv Legs :D
    Love, Legs x
    'Make a life out of what you have, not what you're missing'
  • kezzad
    kezzad Member Posts: 81
    edited 30. Nov -1, 00:00
    in my experience and this is only in the past few months i have had to fight for everything! Feel like i am in constant battle with my rheumy to get things done even to the point where i am hysterical with pain down the phone at him (but have found tht works sometimes!) I have had an MRI on my spine but still waiting for the results, think my rheumy has just forgotten to look for them and have had to wait nearly 4 months for a scan on my wrist and hands even though it is quite clear they are severly damaged and i am only 22.
    I feel for you, its just so frustraiting
    xx
  • mrsdalloway
    mrsdalloway Member Posts: 161
    edited 30. Nov -1, 00:00
    :oops: just re-read am 38 but feel that acting like a 3 yr old might help! would stamp my feet but that would hurt!! you are right at the moment they are crap but this is 2nd referral the first hospital left me so long without any proper treatment that I ended up having tkr at 35. This hospital was really good at the beginning so don't know what has happended over last 18 months or so. Just really worried as I know the consequences of what can happen when they are not interested. But will give rheumy nurse benefit of the doubt and see what happens on next visit if not will take advice and go and see GP see if they can suggest anywhere else.
  • lesleygraham
    lesleygraham Member Posts: 91
    edited 30. Nov -1, 00:00
    Hi folks
    I feel like I'm at the end of the road with treatment for my RA. I've tried al the drugs but invariably they have not worked or stopped working. However, Enbrel was fantastic while it lasted, it worked the next day and I had a year of very little pain and stiffness. It started to wear off and I tried new infusion treatment. (can't remember name). Again, no effect. Steroid injections only lasted a week, then I went into hospital for steroid infusions over 3 days. Thats lasted a week. I'm now in so much pain that I've just took morphine.
    I'm on the sick from work with no prospect of getting back. They have mentioned retiring on ill health, suppose they want rid of me, not surprising really.
    Anyway, Enbrel is great but for some it doesn't last long.
    Take care
    Les

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