Has anyone else been made to feel they're making it up??:(

I've had my 1st appt on tuesday at the hospital after being referred by my doctor after blood tests and previous hstory.

I ache and hurt all over, can't get enough sleep, feel like I've pulled muscles I didn't know I had and my reason for going to see my GP was that my hands had started to hurt and where very stiff and painful especially in the mornings. I had also had previous trouble with my left hip which my GP picked up on.

Anyway that is a brief discription and I know my symptoms aren't as bad as many others.

Over the last couple of years I have been very low and am being treated for depression and anxiety, so just going to the hospital is quite emotional for me.

I didn't see the Consultant, and I don't think she was a nurse (no uniform)

I had taken a list of all my symptoms (maybe my 1st mistake but I can't rely on my memory or brain function to remember things at the moment) The doctor didn't seem too impressed.

She examined me, and asked me questions but then said that although theres is inflamation that they need to get sorted out she thought my mood was also an issue......I'm not suprised, no sleep and constant aches and pains surely wouldn't make anyone exactly lively!

I have had my hands and ankles x-rayed, more blood taken and have to go back in a month.

But the more I think about it the more I feel that she thought I was making it all up.

Sorry for the long, disjointed tale but just had to get it out

9 Replies

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  • Hi Suz, sorry your feeling so low and in pain at the moment.

    The first thing I'd say is did she think you were making it up or is your low mood making you feel a little paranoid? I ask because I went through a similar thing for a good few yr before I was eventually xrayed and referred straight to a Rheumatologist. I even had a Occ health doctor tell me it was in my mind and the best thing was to get back to work!

    If she thought you were making it up would she have taken bloods or sent you for xrays (with all that cost) then given you a follow up appointment?

    I don't think so as that would have been a waste of her time. She does believe you and hopefully will get you started on some sort of meds at your next appointment.

    In the mean time what painkillers do you take?

    Have you tried counselling this can help by talking through your experiences and how the pain affects you, it can also help you feel there's someone who believes you.

    Counsellors trained in dealing with people with chronic painful conditions can at times be a lifeline for your sanity and wellbeing.

    Go back to see your own GP and ask for some stronger pain relieve until your next appointment as managing the pain is so difficult due to lack of sleep. During a severe flair my GP gave me another painkiller to take with my other pain meds, it makes the Tramadol more potent and helps me get some rest (though I do turn into a zombie for a few days). Another thing which helps me is mediation or doing breathing exercise while listening to soft relaxing music.

    Sorry I can't offer more support and I hope this helps you. One other thing I will say is, this is a great site for getting emotional support when needed so don't be afraid to ask.

    Best wishes and take care

    Beth xxx

  • Thank you Beth, you're right I didn't think about the cost of x-rays etc. I have also just received my next appointment letter.

    Thank you again, just getting it off my chest and your reply has made me feel much more positive. I have some painkllers but not too strong, I'm due to see my GP Monday and will have another chat with him.

    Best wishes

    Suzanne xxx

  • Hi Suz,

    I totally agree with Beth, it is just how you feel at the moment. It is a very emotional experience. I remember before I got the right meds, was terribly depressed, and the pain so very hard to deal with not to mention my fears and what was happening.

    i am glad to hear you are seeing your GP on Monday, you are not alone feeling ;like this very hard at this stage as it is outside your own control.

    By the way anxiety and depression go hand in hand with pain, and you should in no way feel ashamed, that is what docs are there for to listen.

    The very best of luck, Gina.

  • Dear Suz,

    I am sorry that you are feeling so bad, My guess is that you saw a registrar/ junior Dr, Nhs doctors some times do some rhuematology training as part of their rotation, it sounds that she hadnt learnt any patient care skills!

    When you are feeling low/ depressed and having no sleep pain levels become elevated, obviously she didnt explain this in a helpful way!

    I think she probably needs the x-ray results and blood tests to help with her diagnosis.

    I am sorry that she didnt help you in more caring manner and im sure she didnt think you were making it up xxx

  • If like me your drs has the facilitity to access your blood test results your dr will be able to tell you what they are. When i had a blood test done a couple of weeks ago and as my dr had the ability to look at the blood results and told me what they were. Ask dr when you go back if they don't ask if they will be able to ring and find out for you. You can't go another month like that. I feel for the agony your going through. Its a sad fact of life some medics and nurses have no bedside many and they don't know how you feel. My consultant told me once that he's an expert and he also added that he knew very little about how it affects people. Unless you have ra no expert on earth can understand how you are feeling. It sounded like the person you saw was a bit ignorant of how you were feeling.

    Take care and i'm sending you my love.

    xxxxx

  • I can't thank you all enough for such kind replys, my Mom heard about this site on tv and told me about it.

    I'm so glad she did!!

    Thank you all again xxx

  • Hi Suz,

    20 years ago my RA started with 1 swollen finger (ring finger left hand) and went to see GP after a few weeks as it wasnt going down. My Mum had RA so perhaps I was a bit quicker in going to see GP - I think I was expecting the outcome.

    Anyway, had 2 blood tests and then was sent to see consultant rheumatologist at the hospital because of the results of the blood tests. (Here I dispute the theory I have heard voiced of wearing gold rings to help combat problem RA fingers - my ring finger sported a large gold wedding band - sorry I digress).

    When I saw the rheumy consultant he asked me 'what makes you think that you have RA ?' Told him that my Mum had it and that the GP had taken 2 sets of blood tests and it was the GP who had sent me. Consultant told me 'rheumatoid arthritis isnt necessarily hereditary'. Had another blood test done for him and a was given a follow up appointment. At the follow up appointment he told me 'I'm sorry to tell you that you have rheumatoid arthritis' !!!!

    So yes, I can believe you felt that the rheumy person you saw gave you the impression that you were making it up. You know you are not and probably at your next appointment you will get a better reception.

    We've all had bad days at work and I'm sure they do too. At your next appointment please go believing that she was just having a bad day if you see her - through the years I have found my rheumy team to be sympathetic - most of them choose to specialise in RA (and etc.) as their career - RA would I choose to specialise in RA? Definitely didnt, I chose the easier option of secretarial (hence my answers on here are rather lengthy !!!!)

    In most cases taking notes with you is helpful and some rheumy's are grateful for them as it often helps them to see how things are progressing - on the other hand some dont appreciate it. As far as I am concerned the notes are just as important for me to remember to tell them the problems I have been experiencing since my last appointment with them and if they dont appreciate them, it doesnt matter.

    Also, apparently some peoples early blood tests dont show a positive result for RA - I dont know why but no doubt someone on here will be able to tell you more.

    Meantime, hopefully you have managed to get some pain killers which work for you and hope you have managed a few hours sleep.

    Take care

    Judi

  • Hello Suz. I am newly diagnosed with RA and it's taken a year to get to this stage. I won't go on as you can look up my blogs and questions quite easily but just wanted to say hi and also agree with what has been said so far about it not all being in your mind etc. About a month ago a friend emailed me and said "don't worry - most of us feel troubled that doctors will think us time wasters". I replied that I wasn't worried that I would be thought a time waster - even if this was all to do with my mental state, which is wasn't, that is still something doctors should address. I was just struggling to believe that doctors would believe me because there was nothing much to see? I knew it was real of course but it was just a question of how to prove it to them?

    As others here have said you would not have been referred to hospital and for x-rays and blood tests if no-one believed you. I'm sorry if it's all ahead of you still - I've hated the past year and many, with sero-negative blood results have to wait far longer still I know.

    But I have at least learnt how to pace myself better and how to cope with uncertainty. The rheumy said to me the other day that with all these conditions we need to learn to live with and accept a degree of uncertainty - and I think he's right. I'm very impatient so working hard on this still but I'm at least relieved to be out of the biggest limbo of all at least. You may also find other sites and forums that are less specific to RA, such as Arthritis Care, that also help as I did while in limbo land?

    Good luck. TildaT

  • PS My rheumatologist never read my notes and observations, despite being offered them, but he did study my photos of swollen joints. If you have visible swelling it's a very good idea to record it with a camera and print off copies to show your GP and the consultant over the coming months. TTx

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