Fed Up! (just a little rant) you don't have to read just makes me feel a little better!

3 weeks ago I went back to my GP because my medication was not reducing my pain to a level in which I feel I can carry on with my daily activities, he said that he was unsure on what to give me as he had tried everything that he knew might help. I got a letter through today saying that my emergency appointment to see the consultant will be in another 4 weeks! By the time I get to see my hospital consultant it will be 7 weeks of pain relief that does not seem to be helping. My family keep negging and saying that I am an 18 year old girl I should be going out with my friends and having a job to enjoy my younger days but they do not seem to understand that I am not coping and in a lot of pain.Its got to the point where I can no longer take part in family activities or activities in which my friends are. One fed up AJ :(

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  • Feel for you. Does your rheumatology department have a nurse helpline you can contact for further advice. If not try your consultants secretary and see if they can help. You need early treatment to try and avoid joint damage. (((( )))) Farm

  • I have contacted my rheumy nurse and she said that I have got to slug on until I see the consultant.. the secetary said that she gave me the most appropriate appointment possible.. I just dont get how it can take 7 weeks for an appointment as I used to go every week and on a Thursday would make an appointment for the week after but now when I need one they dont have one for 7 weeks...

  • Oh my. We forget that there are some so much younger than us not able to enjoy what we used to. It's a precious time when nothing should be holding you back from doing all that you want to do. I don't know what meds you're on but it does sound as though they're not doing all they can for you. I would suggest seeing your GP again, or even another in the practice if possible & nicely but assertively explain as you have here that the pain relief isn't working & if you get no more joy you really need an earlier appointment with your consultant, who knows your RD history & has a full understanding of the disease & a greater understanding & knowledge of what will relieve your pain. It's possible one or more of your meds aren't working & possibly adding another to the mix wouldn't help anyway. Seems to me you need a review & as such at your age the quicker you see him the better. Has your name been put on a cancellation waiting list? If not, maybe ask your GP to do this for you, if it's possible in your area.

  • I wonder if your GP could refer you to a pain clinic if he feels that he can't help you himself? Learning to manage pain yourself is really important with long term conditions and the support of someone who's job is dedicated to the management of pain might really help you. I hope you can get some help sooner rather than later - it seems all wrong to me that young ones such as yourself aren't prioritised with rheumatology lists. Mind you rheumy appointments are like gold dust for all of us I suppose.

  • I cope with the pain well and I have been to see all sorts of people over the 5 years but they all seem to patronise me and make me feel like im incapable. Just recently nothing that normally works is helping and im at a loss at what to do with myself.

  • My sympathy. Just a warning, I wish I'd looked at the problems with the pills they dish out. Steroids are great to make you feel a bit better but can be difficult to come off them. They also make other illnesses worse. The suggestion about pain management is a good one esp if they tell you how to manage and not get hooked on painkillers. But you should be a priority in terms of your age. I hope you can get some relief soon.

  • I'm so sorry to hear you're going through all this. I completely understand how you are feeling as I was once an 18 year old myself coping with this horrible disease. I suppose that all Rheumatology departments work in different ways working within their own protocols. However I am wondering why when you rang your rheumy nurse she didn't suggest you go along for a steroid injection to tide you over whilst you wait to see your Consultant? I will be thinking of you and really hope that things pick up and you can start enjoying life again. Pat x

  • I normally cope extremely well but after 5 years my family don't really seem to care anymore, now im having a bad spout they just seem to have other things to worry about. I can hardly move out my bed today and they have all gone out and im not home alone. All i got told when i rang my rheumy nurse is that she doesnt know what to say and that i have been given the first available appointment and she will sit in on the consultation.

  • Hi Justanotherteen,

    sorry to hear that you are feeling so bad and are having such a horrid time. There is a very good publication from Arthtritis Research UK called " Living with long term pain - a guide to self management" that has a lot of information about various methods of pain management. I have put the link to it below. You can either order a hard copy for free or download it:

    arthritisresearchuk.org/sho...

    You can also contact our helpline to talk about things that may help and we can send you information that you can give to your family which may help them understand better how RA affects you. Our number is:

    0800 298 7650 Monday - Friday 9.30am - 4.30pm

    Hope that this information may help

    Regards

    Beverley (NRAS Helpline)

  • my heart goes out to you AJ. its bad enough when your that bit older but i get really angry when i hear of people so so young having to deal with this awful disease.

    as others on here have suggested call your rheumatology dept at the hospital and ask them for advise. i had to confront my GP and tell him that i wasn't being looked after well enough in the practice. you know your body better than he does. your best bet is to get the rheumy team to send a letter to you GP telling him what you need.

    i wish i could do more than offer suggestion but unfortunately that and my own experience is all i have to offer. please keep in touch and come on to this site wheneve your feeling down. it does help.

    not all that long ago was was really at the end of the road.....i was very ill with this disease. my partner had walked out on me and i was left on my own.....it was not a nice place at the time.......i had lots of support from good people on this site and of course from others who rallied around me. my disease is now under control and my life is looking so much better. its not perfect and i'm limited in what i can do but i have adapted and life is alright now.

    please let us know how you get on......go to your GP and PUSH for the relief you need and contact your hospital rheumy team, they can be a huge help. all the best love. XX

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