Hi, newly diagnosed and bewildered

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Paleogirl
Paleogirl Member Posts: 75
edited 18. Sep 2016, 04:15 in Say Hello Archive
Hi *waves* to everyone.

My doctor sent me to see a rheumatology consultant as I had a slightly higher than normal anti ccp test. Everyone told me they doubted I had RA, though my grandmother died of it and I was just moaning about getting older (46) and everyone else puts up with the usual aches and pains

I was so confident I would be sent away from the clinic with a flea in my ear I only put 1 hour on the car in the car park.

Three hours later, I am walking out with fists full of drugs. The consultant tells me all my joints are swollen, I've definitely got it, they give me an injection in my glutes, which has made my symptoms much worse and I am left bewildered looking at leaflets telling me my hair is going to fall out and I'm going to get an horrendous list of side effects. The only person I've been able to discuss it with is someone at work who reacted badly to all the drugs they've put me on and I don't feel I've had a chance to discuss anything. I was told I have to take these drugs and that is it. That once they kick in I will realise how ill I've been. No more Friday night drink, no more outdoor swimming, no more life is how it feels.

Sorry that's all sounds very miserable but I'm feeling rather shell shocked

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  • [Deleted User]
    [Deleted User] Posts: 3,635
    edited 30. Nov -1, 00:00
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    Hi Paleogirl
    Welcome to the forum, there are several forums you can go to popular ones are Living with Arthritis and Chit chat.
    You will find a lot of lovely people you can share with and will give you great support,As well as being friendly and helpful.
    Wishing you all the best.
    Christine
  • frogmorton
    frogmorton Member Posts: 29,414
    edited 30. Nov -1, 00:00
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    Paleogirl

    I am so sorry to hear of your diagnosis.

    My bloods were very like yours no positive R factor, which makes easier diagnosis, but raised inflammatory markers and super-swollen joints 'stuck' in position. I was glad someone actually believed me I think.

    For a while I also thought life would be over I really did. I stopped doing anything or planning anything and if my husband said "Shall we book tickets for something?" I would reply "How can I? I don't know how I'll be!"

    I read the medication leaflets and came on here. I realised I am lucky to live in an age where there are medications to help me and prevent some of the damage I have seen in people older than myself. Possibly like your Grandmother who died probably with damaged joints from her RA.

    I was in so much pain that I happily took the medications given to me and over time realised that actually life is ok. My hair is fine and I still exercise as regularly as I can. I eat well and do drink my couple of drinks on a Friday exactly as I always did.

    I had thought life was over. In some respects I was right because life as I knew it was....but life now is absolutely fine....slightly modified, but fine.

    It's almost like a bereavement and so totally reasonable for you to feel lost, scared, angry, resentful or many other emotions. Over time you will work through these and use your own strength (you must have a LOT to do that sort of swimming!!), to carry on. You are still you that I can promise.

    Please do come along in here and join us lot taking strong medicines is scary, but most of us do and we will support you.

    Take care of yourself, read sensible information about the subject like you will find on the main Arthritis care site, maybe ring the helplines on Monday? I did. I rang and BAWLED!!! they waited and helped me.

    Sending you huge ((()))

    Toni xxx
  • Paleogirl
    Paleogirl Member Posts: 75
    edited 30. Nov -1, 00:00
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    Hi Toni

    Many thanks for your lovely words xx
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Hi, what a terrible shock for you this must be. I am fortunate that good health as always eluded me (I was born with auto-immune troubles) so this is just more of the same: no big deal but for you? A very different thing indeed. To paraphrase Kathy Lette good health prepares you for ill-health in the same way that making lace prepares you for round-the-world yachting.

    I began my auto-immune arthritis (psoriatic, PsA) back in 1997 when I was 37 but my symptoms were not recognised by my then GP (your GP has shown how much some GPs' knowledge has moved on in the past few years). I now take two medications (including methotrexate) and have no trouble with side-effects whatsoever: the doses we take are considerably smaller than when it is used for other conditions. For me it was a no-brainer, I've been on medical drugs since I was twelve but this is a very big deal for you. A friend of mine also benefited from a quick diagnosis and his PsA is extremely well-controlled on just six sulphasalazine tablets per day. He is still working, running 10Ks and cycling up to 100 miles at a time. Sadly I'm not able to do any of those things because I began the meds with too little, too late; I am fairly sure that if I had been diagnosed more quickly I wouldn't be in the pickle I am now.

    I am 20 years in with this malarkey and yes, things have had to change but I am still enjoying life, even with my limitations. There is more to me than my disease, there always has been and always will be. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Paleogirl
    Paleogirl Member Posts: 75
    edited 30. Nov -1, 00:00
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    Hi DD thanks for that. I think the major bit of the shock is my health hasn't been good for years with other things, couple of major ops and a trip to Bristol Spinal Unit with back problem that nobody could identify. But the medical profession's attitude has always been I'm a malingerer with nothing really wrong.

    I swapped GP practices because the previous one told me everything was in my head. They referred me to a counsellor who promptly referred me back saying she was pretty sure my issues were entirely physical.

    I remember walking in to this new GP and apologising for wasting his time. He said to me you are ill, you look it. Let's just find out what it is.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    I am sorry to read that you have been having not a good time recently, but even so this is still bewildering, yes? Many GPs are not aware enough of the various forms of auto-immune inflammatory conditions (around 300) and don't understand how it can affect people: they are the ones who know a little about a lot whereas the rheumatologists know a lot about a little. Back in '97 my left knee was swollen, my GP said it will sort itself out. I asked (when it hadn't) to have it drained, she said there's no point, it will sort itself out. I was so used to doctors knowing more than me I believed her - now I know that was a mistake! By the time action was taken it was 27" in circumference and pictures of my op are now in orthopaedic textbooks. Fame at last! :)

    You have a familial connection with arthritis which is something your previous docs should have asked you about but, as I say, they know a little about a lot so some fine detail will be missing from their knowledge. I was born with eczema and developed asthma aged 7, this was back in the days before inhalers and they was scary times. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • barbara12
    barbara12 Member Posts: 21,281
    edited 30. Nov -1, 00:00
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    Hello Paleogirl and a warm welcome form me
    Like the others have said we are all here to support one another..when you get another appointment or if you think you need one sooner go along with a list of any questions you have ..and dont forget we are always here...
    Love
    Barbara
  • Paleogirl
    Paleogirl Member Posts: 75
    edited 30. Nov -1, 00:00
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    It was a bit surreal this time. Normally it is the GPs trying to convince me nothing is wrong. This time it was the consultant trying to convince me something was wrong.

    She was telling me I had fluid in on my knee, swollen joints everywhere and I hadn't even noticed
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Do your swollen joints feel warm to the touch? Some of mine occasionally do, even though I am well-controlled. I can't see the swelling but the heat tells me it's there. I found that bags of frozen peas made very good ice packs because they would 'mould' to the joint (you should place a cotton teatowel between the pack and the joint to stop your skin being affected by freezer burn, and label the pack so you don't eat them).

    Us auto-immuners are all afflicted by the 'same' conditions but in different ways because we are unique. My troubles are not yours and yours are not mine but I can (and do) empathise. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Paleogirl
    Paleogirl Member Posts: 75
    edited 30. Nov -1, 00:00
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    Consultant said some of them were hot but I hadn't noticed.

    My symptoms have flared since they gave me the injection. This mirrors what happened when they insected steroids round my spine, also promising relief, instead it made everything far worse.

    Seems I react badly to the stuff
  • frogmorton
    frogmorton Member Posts: 29,414
    edited 30. Nov -1, 00:00
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    Paleogirl wrote:
    Consultant said some of them were hot but I hadn't noticed.

    My symptoms have flared since they gave me the injection. This mirrors what happened when they insected steroids round my spine, also promising relief, instead it made everything far worse.

    Seems I react badly to the stuff

    That is a shame as for some it brings wonderful relief for a good while. If the tried a course of oral steroids of course it could be different.

    I hope things settle down for you quickly ((()))

    Love

    Toni xxx
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