An Aussie feeling a long way from home

rissfish
rissfish Member Posts: 22
edited 3. Oct 2010, 09:15 in Say Hello Archive
It's strange how speechless I'm feeling at the moment because I am usually very verbose and a little over-dramatic.

Yesterday I received a letter from my rheumatologist announcing that my bloodwork showed a strong positive to rheumatoid arthritis. On our next visit, the letter says, the rheumatologist will recommend I begin treatment with DMARDs.

Saying I'm scared is quite an understatement. I have been living in London for only a year now (I'm from Brisbane in Australia) and this is certainly an occassion I'm feeling very far away from home. I'm 24 and moved out of home to come travelling. Telling mum and dad over the phone about the prognosis made the 10,000 miles feel even further. My mum blames the RA on the UK ('the bloody cold weather'), my dad doesn't believe the diagnosis ('but you're too young').

I guess my questions are this - what should I be asking the rheumatologist about DMARDs when I finally go in, in two weeks' time and does anyone have any experience of having a second opinion in the UK (my parents want me to do this)? I imagine going back through the NHS will take forever, and I'm not sure what to expect with the cost of going private (if my parents decide to pay for that).

I'm not used to the hospital system and always had private health insurance in Australia (which I don't here). I hope someone can help as everyone seems very understanding here.

Marissa

Comments

  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Strewth. (That is a word I often use on here and is not meant in any Ozzy-baiting way). Hell's bell's girl, I am so sorry - what a load to be dumped on you and so far away from home. I am not going to offer many sage words of advice apart from these: take some time out. Do some deep breathing, swig a glass or four of something lovely (if indeed that is your thing: I suggest red or white grape juice for grown-ups) and try to gather your thoughts.

    I guess you have been having trouble for some time if things have got this far. When, and how, did it start? What joints are affected? Is tiredness a major problem? What painkillers are you taking? Do you have any friends around to give you moral support at the mo? Which bit of the UK are you in? Ummm, that's enough questions I think!

    You have indeed come to the right place and well done on finding us so quickly. Arthritis is a pernicious disease in so many ways: I have PA (psoriatic arthritis) but my PA is different to others' PA - we are all affected differently but given 'umbrella' titles. We also all react differently to the same drugs. Hang on in there girl, we'll do our best to help you. Dreamdaisy (DD)
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • gickygawky
    gickygawky Member Posts: 478
    edited 30. Nov -1, 00:00
    Hi Marissa,

    I am sorry to hear about what you have been dealing with lately and know exactly how it feels being so far from home.

    I am an Aussie too and live in the UK - I was diagnosed in here four years ago.

    At the moment I have match sticks holding my eyes up after taking my night time pills so will send you a private message tomorrow morning that will hopefully contain some helpful info.

    In the meantime feel free to drop me a line and most of all keep your chin up, you are not alone :)

    Arna x
  • rissfish
    rissfish Member Posts: 22
    edited 30. Nov -1, 00:00
    @dreamdaisy

    I was referred to the rheumatologist about 3 months ago as my GP wanted to uncover what was giving my sciatica to the right side of my body. Only in the last few weeks, I had new pains which started first in my shoulders and then moved into my wrists (and to a lesser extent in my feet). It was very much a shock when I went in with my back pains (and what I thought was RSI in my wrists) and came out with 'most probably some form of arthritis'. I'm still in a lot of pain even though I've been prescribed meloxicam. I guess it was all just coincidence that these pains started right before my rheumatology appointment (I'm still not sure if the back pain is linked and have an MRI scheduled for the beginning of next month). I am still waiting for a thorough explanation seeing as all I have seen is a letter with the doctor's diagnosis and lots of blood test letters and numbers!

    Yeah, I'm tired but not sure if that's because I work waaaay too much! In the past couple of weeks I have been sleeping literally all weekend so fatigue is becoming an issue.

    Yes, fortunately us Aussies (and my Aussie friends) are at near infestation proportions in London where I live with my boyfriend (who has been wonderful through all the tears etc).

    @ all does anyone have any experience with second opinions within the NHS at all?

    Thanks for all the support already, it's amazing!
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    I'm guessing Earl's Court area - always a favourite spot! Morning hun, I hope you had a decent-ish night with some rest. OK. let's see whjat we can come up with today.

    Firstly, I would hold off on the second opinion as we don't really know what the first opinion is yet. Arthritis takes many forms and can be very hard to diagnose. Whatever this is, it seems to be spreading at a rate of knots and there are some forms that can do this. There is also Lupus to take into consideration, another form of auto-immune condition. Both have considerable tiredness as a side effect - the body uses a great deal of energy as it attacks itself - god, it's a bl**dy stupid thing sometimes, the human body. Don't fight the tiredness - sleep as and when you need. Try to cut down on in-essential activities so as to preserve your energies for the things you want to do.

    Let the docs do their tests and investigations. It will take time but enquire about better pain relief, your GP should be able to help on that front. Get the tests done - any questions about those post them on the Living with Arthritis forum - that's where we tend to deal with the medical aspects of it all, and you will get a wider range of replies. No questio is too small or too trivial - we remember well the chaos and confusion of the early days as we deal with the chaos and confusion of the later days! Chin up girl - we'll see you through. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Evening rissa. I hope you have gotten thro the day OK. Chat tomorrow, maybe. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • rissfish
    rissfish Member Posts: 22
    edited 30. Nov -1, 00:00
    Hi DD,

    No, I'm not another Earls Court/Fulham Aussie! Though they are all starting to migrate around the clapham/Brixton area.
    I'm up north at West Hampstead. It's lovely :)

    My mum has booked me an appointment with a rheumy in Australia. I'm going back in about 6 weeks for a holiday, so at least I'll get the second opinion and make her happy :)

    I haven't been sleeping all too well as my shoulders and neck really ache at night and I wake up every time I turn on my side...but I stole my boyfriend's pillow last night which seemed to help a little.

    Hope all is well with you, thanks again for the support.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Boyfriends have many uses - did he miss his pillow tho?! Sleeping a little higher may well help aches and pains, as do keeping the affected area warm and taking some painkillers. I hope you are OK today - any frets come and talk to us. So, home for a holiday in 6 weeks - lovely! Which bit of Australia are you from? Will you return to the UK after, or will you be sensible and stay in the sunshine? Vitamin D is good for arthritics. If you have a wobble over anything, come and talk to us. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Afternoon rissfish. Just a quick hello from me - I'll be away tonight and for part of tomorrow. I hope you are OK and looking after yourself. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • frogmorton
    frogmorton Member Posts: 29,332
    edited 30. Nov -1, 00:00
    Hi rissy

    you must be in a state of shock.

    Glad you found us though and welcome form me.

    Wise idea to get another opinion at home - even if it's only to calm the parents down. :wink:

    Whatever happens dont panic!!

    It takes time to get your head round it all but once you dio and are on the right meds you will be ok. Life will be fine.

    You take care

    Love

    Toni xx
  • rissfish
    rissfish Member Posts: 22
    edited 30. Nov -1, 00:00
    Hi DD and hello Toni, thanks for the shout out...

    Things are ok, I'm just so busy at work. On top of everything going on, it looks like they are extending my probation which is so ridiculously unfair for so many reasons, but my, that's a long story! Don't worry, I've already met with HR and they're completely on my side there...they also think it sounds very odd. I'm also supposed to be doing a speed typing course tomorrow which I signed up for about 2 months ago (before my hands ever started hurting), and I got in trouble for saying I didn't want to go anymore, haha, oh what can I do but laugh :)

    Besides that, the shoulders and hands are killing right now (hence why I'm not too keen on 8 hours of speed typing). Luckily I'm back at the rheumy on Tuesday...wish me luck! Going to find out what all my results mean and apparently begin DMARDs (according to the report sent to my GP).

    I hope everyone else is doing ok! I'm going back to the sunshine in Aussie Land in 6 weeks...yippee!!

    Riss :)
  • rissfish
    rissfish Member Posts: 22
    edited 30. Nov -1, 00:00
    DD I forgot to respond to your questions properly...

    I'm from Brisbane (Queensland) and will definitely be soaking up the sun, I can guarantee that. Am in the process of getting my sister to book a place at my favourite beach spot (Noosa) for a few nights.

    And yes...I will be coming back to a nice, freezing cold November in London. Which I'm sure will hit me like a spare tyre falling off the back of an open-tray utility (trying to avoid the 'tonne of bricks' cliche, hehe). I was planning to stay for at least another two years (I have an EU passport) as boyfriend has to wind up his business etc before we move to Aus permanently...but now, who knows? I may be wishing for the warm weather after this winter...

    How does winter bode with you?
  • cebeem
    cebeem Bots Posts: 472
    edited 30. Nov -1, 00:00
    Hi rissfish and welcome!
    Worked in physio for years until 1990 (still connected but in a different job) ...so encountered lots of people with arthritis. When I was diagnosed I feared lots ..but was reassured that early intervention (which we have now due to the great things they can do with bloods etc) with DMARDS etc helps prevent progression as we knew it years ago.... so good luck mate!

    *CB*
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hi rissfish, just wondering how you are getting on. I hope all is well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • frogmorton
    frogmorton Member Posts: 29,332
    edited 30. Nov -1, 00:00
    Hi Rissy


    How did you get on at rheumy's??

    What has he put you on?

    Hope you are feeling ok with it all.

    Love

    toni xx
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hi, I hope things are OK with you, or as OK as they can be. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • rissfish
    rissfish Member Posts: 22
    edited 30. Nov -1, 00:00
    Hi all,

    Sorry for the delayed response but as usual, work has got the better of me and I feel like I've got no time to relax!

    I was back at the rheumy last week. In fact, I saw a new doctor this time (as the other one was filling in for her last time). So I got my second opinion, which turned out to be the same opinion of RA. Aaanyway, I got a steroid injection which hasn't helped at all so after calling NHS Direct, they've advised to go to the GP and I'm back there again tonight to try figure out some sort of pain control.

    All very frustrating to say the least - when it hurts to brush your teeth you know something ain't right.

    Thanks for the support again all. I want to hear if you're all well (doing better than me at least)!

    Marissa
  • rissfish
    rissfish Member Posts: 22
    edited 30. Nov -1, 00:00
    Oh, and the other thing the rheumy has advised Toni is to start DMARDs when I return from Australia (which will be in November).

    xxx
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Wel, it sounds as tho things are on the move for you, which is a good thing. About the teeth - have you tried an electric toothbrush? They remove a great deal of effort from that job! Take care. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • rissfish
    rissfish Member Posts: 22
    edited 30. Nov -1, 00:00
    dreamdaisy wrote:
    Wel, it sounds as tho things are on the move for you, which is a good thing. About the teeth - have you tried an electric toothbrush? They remove a great deal of effort from that job! Take care. DD

    A major pharmacy (I don't know if we're restricted to saying brand/company names on this forum) has 50% off all electric toothbrushes until Oct 12! I will certainly be getting one come pay day tomorrow :)
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    It is worth it, you don't need an all singing and dancing one, basic is fine. It ease the strain on hands and wrists, and it's bettter for your teeth too, apparently! DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • trisher
    trisher Member Posts: 9,263
    edited 30. Nov -1, 00:00
    Hi Marrisa

    Popped in to say Hi and welcome to the Forums. I have RA so I know what you are going through.

    I had the Depo Medrone injections. They help for a while then eveything comes back again. I hope they find a painkiller that can help you.

    My dream is to go to Australlia one day for a holiday.. I do have relative's who live out there.

    Well, nice to meet you.

    Love Trish xxx
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hiya riss - did you get the toothbrush? Does it help? I hope everything is as OK as it can be. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben