Failed by the NHS, again.

claircoult
claircoult Member Posts: 62
edited 3. Sep 2011, 04:05 in Living with Arthritis archive
I don't know really know where to start but right now I am so upset and angry and I feel completely let down again by the NHS.

4 weeks ago I complained about my rheumy, I felt she wasn't listening to me or taking me seriously. Today I got a response. Basically because the blood tests she did were normal and because she hasn't seen me with a swollen joint she doesn't think there is anything wrong with me.

I've been diagnosed with both Palindromic Rheumatism and Reactive arthritis in the past but she says I have neither of these conditions because Reactive Arthritis is commoner in children and she can't find evidence of infection (she tested once) and PR always causes marked swelling of the joints, which she hasn't seen in me.

All she can offer me is gabapentin (tried it, hated it) or a referral for CBT (I don't have a problem dealing with the pain, I just don't want it in the first place!)

I don't know what to do. I've run out of options. She offered to send me to the rheumy at my local hospital (which my GP refused to send me too because he's not very good) or back to one I saw 2 years ago who refused to treat me.

I really don't know what to do. I'm still ill, I'm still in pain but they say nothing is wrong?

Luckily I have an appointment to see my GP in the morning so I guess I'll have to discuss things with her but I don't know where I can go from here. Something is not right, I've had low grade fevers and sore throat on and off for the past 2 months, my right thigh is so swollen I can't get my jeans on, my ankle ligament sprain is still swollen and causing me pain and my joint pain has got worse since I stopped the hydroxychloroquine. I think I need a real life Dr House!

Clair

Comments

  • elnafinn
    elnafinn Member Posts: 7,412
    edited 30. Nov -1, 00:00
    Hi Clair

    I am so sorry to read your posting and previous ones too but I just do not know what to suggest. You say that your rheumy has not seen any swelling, but you say your thigh and ankle are swollen today. Why not take photographs of your thigh and ankle and send them to her? That is proof, surely? I do hope that your gp is able to help you.

    Elna x
  • traluvie
    traluvie Member Posts: 2,579
    edited 30. Nov -1, 00:00
    Hi I am so sorry to hear your story. . It's hard enough dealing with things on a daily basis but having to try and convince a professional that something wrong must be really draining. . I do not understand why just because your bloods are normal means your ok. Lots of people on here have normal bloods but have some sort of arthritis. . A good discussion with gp about how to move forward with this is needed. . A new referal elsewhere? Photos are a great idea. . They are proof of swelling. . Let us know how you get on at doctors.
  • frogmorton
    frogmorton Member Posts: 28,076
    edited 30. Nov -1, 00:00
    Clair

    you have to take her up on the offer of a referral. You have to you have little choice but to try the one who may be not so brilliant if your GP has no ther ideas. He/she can back you up on the temperature etc....there is real evidence when this happens

    Maybe more diagnostic tests could be done such as ultrasound/those bone thingies which show inflamation and bloods could be repeated again??

    I am so so sorry you are suffering so much...l do remember how you have beeen struggling with this one.

    Love

    Toni xx
  • skezier
    skezier Member Posts: 11,333
    edited 30. Nov -1, 00:00
    Hi Clair,

    I kinda agree with Toni and maybe the one your gp says isn't too good will at least listen to you and try and get to the bottom o it? Might be worth a try.

    The other thing I wonder is would a referral to the pain clinic help you maybe? They also can diagnose and well you need some help and they might be a back door way in to getting some?

    I hope your gp has some ideas when you see them and really hope someone will just do something to find out what is going on cus obviously something is...... The rumo, I think, should have seen you more than once before deciding there is nothing wrong. Hang in there and I really hope your gp can think of something. Cris x
  • claircoult
    claircoult Member Posts: 62
    edited 30. Nov -1, 00:00
    Just got back from seeing the GP. Basically I have reached the limits of modern medicine. Apparently I've had all the tests done they can and they still can't find why I get the pain. I could see 100 rheumys and get 100 different answers so there is no point seeing any more consultants. She said I'm best off being my own consultant and all they can do is treat the symptoms.

    I'm having another trial of hydroxychloroquine as I seemed to be slightly better on that. My GP agreed that gabapentin would not be helpful to me and that CBT would be of no benefit as I've already figured out my own ways of coping with the pain.

    They cannot explain why I get the symptoms I do so I just have to get on and live with it.

    I'm gutted.

    :cry:
  • skezier
    skezier Member Posts: 11,333
    edited 30. Nov -1, 00:00
    Hi Clair,

    Your gp does sound like they are willing to help treat the symptoms and that has to include the pain. Hope very much that they have given you something to hep with that?

    I wish there was something I could think of to suggest you could try but except for wondering if a pain consultants could help, I am afraid i just hope it will respond to the hydroxie and you will start to feel so much better.

    Take it easy today and a I so hope you will find it does improve and you feel a lot better. Cris x
  • elnafinn
    elnafinn Member Posts: 7,412
    edited 30. Nov -1, 00:00
    Hi Clair

    I would be feeling gutted too, if in your shoes. So it looks as though you are best discussing things with your gp and managing as best as you can doing what you do to feel a little better. Let's hope the hydro med works better this time for you.

    We are always here to listen and try to support you so do call in and let us know how you are.

    Elna x
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Neurologist perhaps? They know about nerves etc, perhaps they could offer an insight. Is the pain localised, all over, intermittent, continual? I dunno why the rheumatologist thinks it can't be reactive arthritis, it isn't only children that get it, surely she should be a little more open minded. Could it be a form of lupus or Lyme's Disease?

    Take some time out now. Stop battling and fighting, this aggravation and frustration won't help the symptoms. I know you have travelled far and wide to try to get some help so ease up on it now, take some time out, be kind to yourself and when your batteries are as recharged as they can be, battle on. We will support you in any way we can. DD
  • diamond
    diamond Member Posts: 396
    edited 30. Nov -1, 00:00
    So sorry to hear you feel that nothing is getting moved on in a positive direction.It is bad enough being in pain without feeling let down.Unfortunately sometimes it can take years for a firm diagnosis to be made.Hope you are feeling better soon.x
  • frogmorton
    frogmorton Member Posts: 28,076
    edited 30. Nov -1, 00:00
    Hi Clair

    l reckon you have a good GP there at least.

    Glad you got the hydroxy back because it did help and after all that is what matters isn't it?

    It is always possible that at some time in the future 'something else' will present itself and enable a definitive diagnosis.

    Love and hugs

    Toni xx
  • claircoult
    claircoult Member Posts: 62
    edited 30. Nov -1, 00:00
    Thanks for your help and support everyone! I've been thinking about it and I don't want to take it lying down. If I give up now I'll always wonder if there was something they could have done to make things a little better. I know there won't be a magic cure and it might not even be arthritis but I have to try.

    I know what my rheumy said about reactive arthritis and palindromic rheumatism is wrong and I can prove it, I just don't know what good it will do.

    She reckons I don't have them because I don't have swelling or inflammation, which is kind of ironic because I was looking stuff up on the computer this morning when I noticed my right elbow getting more and more painful. It felt slightly warmer to the touch than the left so I asked my cleaner is she thought one elbow was hotter than the other. She said the right was definately warmer then she asked me to turn around and said it's probably because it's really swollen. I hadn't noticed because you can't really look at the back of your own elbow can you! So I got my daughter to take a photograph and yes it's swollen. I have no idea why but at least I have the photograph if the rheumy ever wants to see me again.

    Thanks again for listening!
  • elnafinn
    elnafinn Member Posts: 7,412
    edited 30. Nov -1, 00:00
    There you go, Clair, you have proof in a photograph. That is evidence, no one will be able to dispute that. Try to get as many photos as you can - I think you said one of your thighs was swollen and you could not get your jeans on. Also I am pleased to hear that you are not going to take this lying down, why should you, you know your own body more than anyone else, you are not imagining it. I would take this further, somehow or other. I wish you well with that.

    Elna x
  • frogmorton
    frogmorton Member Posts: 28,076
    edited 30. Nov -1, 00:00
    Clair

    l take photos too. l have even taken measuresments too and recorded my temp at different times of the day.

    Good girl l am proud of you for not giving in.

    Love

    Toni xx
  • skezier
    skezier Member Posts: 11,333
    edited 30. Nov -1, 00:00
    Hi Clair,

    Like Elna and Toni I agree you shoud push this one further.

    Photo are a really good idea and also keep a pain diary.... a daily account of ho its effecting you etc. It all heps.

    If the only rumo you can get to see is the one the gp doesn't really rate i would still see them armed with the photos and the pain dairy and really push it.

    Meanwhile I so hope the hydroy will hep you.

    I know you said you have tried gabapentin but have you tried the pregabalin? Its the next generation and has a better function than the gabs. It Messes with your head initially but for me it was worth having it do that for a while, while I adjusted to it better cus it was just so good.

    Might be worth trying?

    Hang in there flowr and though its wrong you have to fight i am glad you will do cus this isn't fair or right. Cris x
  • niecsey
    niecsey Member Posts: 75
    edited 30. Nov -1, 00:00
    Dont give in !!! alot of people are in the same boat lve learnt hear stories all the time me been one of them !! Good luck x

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