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rhamatoid consultants

kilmunladykilmunlady Posts: 2
Hi I have been attending rhematology clinic for 4 years now. I am being treated for rhematoid arthritis affecting both hands, elbows, forearms, shoulder and cervical spondolysis of neck. My RF factor is normal. |I see a different consultant every 6 months I attend. I had an appointment today and came back in tears. The consultant looked at my hands and said - good no sign of infllamation - the medication is controlling it! My hands at this present moment when I am home are very swollen - pity the consultant cant see me now. My elbows were particularly sore today so i mentioned this - he looked at them and said i should refer myself to a physiotherapist at my local health centre. On the whole he was very unsympathetic and really made me feel that I was wasting his time. The pain I suffer is real and affects my ability to function in a normal way. I am also suffering from depression at the moment and am on medication for this. I am not minimising the pain and discomfort I am in but am being made to feel a time waster. I am unable to express myself clearly at appointments as I get worked up so cannot defend myself. Any advice on how to deal with this would be greatly appreciated.

Comments

  • elnafinnelnafinn Posts: 8,043
    edited 30. Nov -1, 00:00
    Hi Kilmunlady

    First of all welcome to the forum. I am sorry to hear about your very disappointing rheumy appointment. You are not alone with feeling like this. It is very difficult sometimes to talk to these consultants especially when they throw you off course by some flippant remark. It is a shock and can make you feel so inferior etc. You must not feel that you are wasting anyone's time, because you are not. You pain is real to you. It also cannot help seeing a different consultant each time.

    Could you take someone you know into the appointment with you? This can help a great deal because the other person remembers things that were said that maybe you did not and also they can perhaps step in, where you feel unable to do so. They often think of questions to ask that you may not have thought of too.

    It has been suggested to other forum members who come up with the same sort of thing at appointments to take photographs of the swelling and so on and take them along to their next appointment.

    We also suggest that you write down how you feel about your situation, your pain, how it is affecting your daily life, medication not doing it's job etc and pass this over to the consultant to read.

    Look after yourself,

    Elna (a forum member)
    The happiest people don't have the best of everything. They just make the best of everything.

    If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.
  • RichCRichC Posts: 260
    edited 30. Nov -1, 00:00
    Hi Kilmunlady ,
    I have problems with my RA/PsA consultant too , but have developed a good rapport with his secretary .
    I actually went on my Hospitals website , and found out from the site the email address of the secretary , and then sent her a breakdown of issues i had and of things i had forgotten to say.
    She promptly passed this to the consultant and i received answers by return .
    I have also taken to sending in a diary of how my condition effects me , and have found that at the next appointment , he has a fuller picture , rather than a 10 minute Q and A session.

    I have also requested that i am CC'ed into all reports sent to my GP , and all blood test results are also sent to me .

    This ad-hoc method seems to work in what appears to be a Department that is severely under funded.

    Regards
    Rich :)
  • helpline_teamhelpline_team Posts: 2,009
    edited 30. Nov -1, 00:00
    Hi Kilmunlady,

    Thanks for getting in touch and I'm sorry to hear that your experiences with the rheumy make you come away feeling so upset. It's very difficult
    for me to add anything as Elna posted such a brilliant reply (as usual) and Rich's suggestion gives you another angle for getting more info out of the rheumy without having the anxiety you've experienced in a consultation. I do think that like Elna suggested, taking someone with you to your next appointment and passing written details of how the pain affects you in daily living (along with photos of inflamed joints) to the consultant would make it impossible for him to ignore/brush aside.

    Best wishes
    Paul
  • dobbie59dobbie59 Posts: 4
    edited 30. Nov -1, 00:00
    Hi Kilmunlady, :evil
    This sounds al too familiar,

    I have been diagnosed just over three and half years ago with RA,OA and gout.
    Had all the usual xrays and blood tests and have been on Pain medication and some steroid injections only due to Renal transplant 18years ago and normal arthritis medication causes me big problems.

    Well recently I was seen by a different consultant, he read my notes, examined me then stated I don't think you have RA as your blood results doesn't confirm that??? You uric acid levels are through the roof and I need to control this before I can definately say anymore.

    I explained that I have been taking Allupurinol since my transplant and do experience gout about two-three times a year, and when needed take Colichine when an attack is very bad!!!
    He as told me to increase my Allupruinol to 300mg, stated that I need a ankle fusion due to reduced movement in my ankle, have had a load of bloods taken along with new xrays of hands/feet and ankle, and then said see you in Six months???????

    As stated in previous threads I think I will be making a daily dairy and take photo's of effected joints for next time.

    Hope you feel better soon and sort your rhuemy out asap.
  • ratfaceratface Posts: 62
    edited 30. Nov -1, 00:00
    Hi Kilmunlady,

    Does your rheumy. department have a specialist rheumy nurse? If it does perhaps you can put a 'phone call in to her. Talk to her and she may suggest another appointment either with her or your consultant. Ask her which consultant you are actually under, you may have seen trainee consultants recently. (I saw a new consultant recently - she had to keep leaving the room and go along to my usual consultant and come back with an answer, I left feeling as though my appointment had been a waste of time as it had been very dis-jointed). I realise that they do have to train (but not on me please). I have found my rheumy nurse worth her weight in gold, plus she has a sense of humour.

    As suggested by others it is very helpful to take either diary pages or notes of some kind and also any questions you want answered, with you to appointments. Take a copy for yourself and then you can go through it with them and get anything answered you want.

    Regards, Ratface
  • suzygirlsuzygirl Posts: 2,005
    edited 30. Nov -1, 00:00
    Hi, and welcome to the site. I could have written your post myself as am in a similar situation. I did take photos of my swellings and rashes to show my consultant, and it did the trick. My joints can be ok in the day and by the evening swell horribly.

    I am now under a rheumy nurse and she is brill. Just to see the same person is amazing, it helps a lot. I also have a number to call if things get bad.

    The others have given you excellent suggestions and I hope this helps you. Next time you go to clinic ask to see the specific consultant you want to see, the nurses don't mind.
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