Fed up

Hi I've had RA for just over 2 yrs, I have a swelling on my upper arm just where my mussel would be if I'd got one! Had a scan as I can hardly move my arm, can't raise it up enough to shave under my arm can't lie on in when I'm in bed if I move the wrong way it's really painful, the scan said that they couldn't really find anything wrong, maybe a nerve touching, had injection in my shoulder, which has made it worse, just wondering if anyone else is having or had this problem, my nurse has now said, oh I don't no, maybe some physio and acupuncture might help, not sure if I'd be able to stand the pain to be honest, I'm so fed up, they don't seem to understand how tired I am how crap I feel most of the time,

3 Replies

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  • Push for a diagnosis. It's difficult to have treatment for something if you don't know what it is!

  • This sounds awful! I think the trouble is, medicine isn't always an exact science and sometimes they don't know for sure why a certain pain is caused, especially if the scan isn't showing anything obvious, so it might come down to trying something like physio to see if it helps. The important thing is to not suffer in silence. Just because they aren't sure what it is doesn't mean you should sit back and put up with it, as it's important that they know it's still a problem. However, it may be trial and error to see what helps, so it you might have to try the physio and see if it improves things. At least once you've tried their suggestions, if these haven't helped you can say that to them and see what else they can suggest. If they can't help you, they might be able to refer you to someone who can!

    It's also important to do your best to make them understand how much you're struggling in general. Even healthcare professionals can struggle to realise how much someone struggles and can be tricked into thinking things like 'you look so well', so make sure you're telling them if you're struggling. Keeping a diary can be a good way of doing this, as it helps you to summarise to them how things have been since the last appointment.

    Hope you get relief from this pain soon.

    Victoria

    (NRAS Helpline)

  • Thanks Victoria, I did tell my nurse that the injection didn't work, so I'm waiting to get an appointment, that's a great idea about writing things down, I'm going to start doing that, and your right, when I see people who I haven't seen for a while they say don't you look well, and I think omg I feel like terrible most of the time, I even told my husband when he rings me (he works away during the week) to stop asking how I feel, lol but thanks for your reply

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