In a bit of a pickle :S

claircoult
claircoult Member Posts: 62
edited 14. Sep 2011, 07:44 in Living with Arthritis archive
I'm in a bit of a pickle this morning. Last night the Patient Service phoned me about the complaint I made about my rheumy. We had quite a heated discussion, she put all my concerns about my rheumy down to a "difference of opinion" and I got the impression she thought I was one of "those" patients.

Unfortunately we got cut off when the battery died on my cordless phone and by the time I'd gone upstairs for the other handset and found a letter with her number on it to call her back she'd been called to another meeting but she said she would phone me back today.

We'd got to the point where we were trying to figure out what to do next. As I understood it I could go back and see my rheumy, but from the 2 times I've seen her already I don't think that will do much good. She'd got it in her head already that I had ME and not arthritis (even though my symptoms are different) and the few tests she did came back normal so she won't treat me because there is no evidence of inflammation (2 normal CRP tests and no obvious swelling).

My other option is go to back to my GP and get referred somewhere else. This would be the best option except my GP has already stated she won't send me anywhere else because I've seen quite a few people already. In the past 21 years I've seen 2 neurologists, 4 rheumys, 2 psychologists and an anaesthetist who ran the pain clinic. I've probably had around 25 appointment in all that time. I have reached the limits of the NHS. I want to fight but I don't know how.

I got a bit upset last night, the thought of living like this for the rest of my life with no help and no hope of any treatment scares me. I'm frustrated because I know they are not looking at the big picture, they haven't taken on board all the evidence and they are missing something but it kind of feels like it's too hard and they can't be bothered.

I think I need a real life Dr House!

Comments

  • tjt6768
    tjt6768 Member Posts: 12,170
    edited 30. Nov -1, 00:00
    BY eck, you are having a tough time.. I am sorry that I have no wise words or sage like advice, but do want to wish you well..
    e050.gifMe-Tony
    n035.gifRa-1996 -2013 RIP...
    k040.gif
    Cleo - 1996 to 2011. RIP
  • elnafinn
    elnafinn Member Posts: 7,412
    edited 30. Nov -1, 00:00
    Hi Clair

    At least you put in a complaint and someone has come back to you. Actually having 25 appointments in 21 years seems hardly any to me. I would hate to even begin adding up how many times I have seen someone in the medical field and I have probably seen all the surgeons in the county. :roll:

    Have you phoned the helpline here? That may be an idea.

    Sorry I cannot be more helpful.

    Elna x
    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.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello CC, no doubt you are having a tough time at the moment and yes, it can all be very tiring, emotionally draining and physically frustrating. I think that none of us on here are happy with living with our conditions but I suppose most of us are 'lucky' as we are able to name what is ailing us. It must be difficult for you with feeling so rough but not knowing the reason why. I honestly don't know what to suggest but maybe a break from the constant searching might be helpful. It is putting you under so much pressure, I can understand how badly you need to know and I remember how far and wide you have travelled to find help, but now might be a good time to take a step back. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 27,764
    edited 30. Nov -1, 00:00
    I'm sorry things are still going badly for you, Claircoult. I hope, when the PALS lady gets back to you today, something constructive can come of it. I found them very good when I used them.

    I think I agree with both Elna and DD. I'm reliably informed our helpline people are very good indeed and they might well be able to help you.

    DD's alternative of just giving yourself a break from all this sounds good too. Sometimes we can get so deeply into something that we become too emotionally worn out to deal with it in the best way. A step back for a few weeks, just dealing with symptoms and forgetting all about the cause, might be a big benefit.

    I hope something will help.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • frogmorton
    frogmorton Member Posts: 29,822
    edited 30. Nov -1, 00:00
    Hi Clair

    you've been left up in there air there halway through a call haven't you? Still it has given you time to think more.

    I think you need to tell her some of what you just told us....that the thought of living the rest of your life in pain scares the life out of you and you just want some help.???

    Love

    Tonixx

    Ps if you find House...please send him over here eh?...sigh.......

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