Struggling with Diagnosis

bowzer
bowzer Member Posts: 8
edited 24. Feb 2012, 06:16 in Living with Arthritis archive
Hi All,
This is my first post on any forum ever. Rcently felt stiffness in joints, very tired, tingling in hand etc. I've ust had blood test results back from GP showing elevated CCP. She says that's a good indicator that I have RA. I have an appoitment booked in a week or so with a RA consultant.

I'm 43, married with 2 beautiful daughters (5 an 1) and am the family breadwinner with all the usual responsibilities that entails. Last night I found myself hugging my girls even more then usual and could hardly stop myself from bursting into tears. Having now read lots of info on living with RA and its possible implications (particularly on my family), coming to terms with it seems a long way off. It seems the live I may have to live in the furture is so far removed from my live now that I just can't get my head around any of it. It's the first time I've ever felt not in full control of my own life. Apologies for what must seem like an abundance of self pity, reading some of the posts from others with RA or similar makes me feel a bit of wimp to say the least.
As I write this in my office at work I feel I'm about to breakdown or just walk out.
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Comments

  • stickywicket
    stickywicket Member Posts: 27,764
    edited 30. Nov -1, 00:00
    Bowzer, you are NOT a wimp. This is so much to get your head round in so short a time. That is, in one way, good news but it won’t seem like that right now. I say it’s ‘good’ because you’ve had a quick diagnosis and a quick referral to a rheumatologist and this also means that treatment can start quickly. The sooner it starts, the less likely it is that all the scarey things will happen.

    I understand your fears as breadwinner etc. It’s an old cliché but try to just take one day at a time right now. It’s easy to say and so hard to put into practice but much better to save your energy for more important things. Worry is very debilitating.

    Why not contact our Helpline people. (Phone no. at top of page). They will listen to all your fears and worries and are very highly thought of by people on here. And you can always rely on us for support.

    I’m sorry I’m in a bit of a rush right now but please don’t let that put you off. Others will be around soon.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • GraceB
    GraceB Member Posts: 1,595
    edited 30. Nov -1, 00:00
    Bowser,
    firstly I'm sorry that you've had this diagnosis.
    I have OA so I can't imagine what it's like to have an RA diagnosis. I know there's lots of Forum Members with RA so I'm sure you'll get more appropriate responses.
    Just seen SW's response. You'll get loads more I know.
    Please, please ring the helplines - they're open 10am-4pm. Have a chat with them.
    Then have a look at the information that AC produce.
    Take a little time to let everything sink in, take a few deep breaths and focus on your beautiful girls and what you can do. This is all new to you and you must give yourself time to get to grips with everything.
    In the meantime, keep posting and keep venting your feelings. The Forum Members have been wonderful to me and I know they'll be wonderful for you too.
    Take care,
    Grace
    Turn a negative into a positive!
  • prefabkid47
    prefabkid47 Member Posts: 1,316
    edited 30. Nov -1, 00:00
    Hi Bowzer
    Welcome to the forum.It's a shame to had to find us,but now you have you will find us a supportive bunch and a wealth of knowledge gained from personal experiences.

    Your immediate reaction to your diagnosis is understandable but normal!Once the dust has settled you to will feel a bit more settled.

    Let us know when you have your appointment with your RA consultant and we will jump in your pocket and come with you (it's what we call pocket duty,there's a lot of it around!).

    Once you are on some course of medication you will feel far more positive about things.Yes,it can impact on your life but since you have been diagnosed early before any real damage may have occured this will be minimised.

    I have RA in ankle and both hands (as well as OA in the ankle) medication has allowed me to lead a near normal life (yes I can't play football or ski,but I didn't before!).

    Please feel free to post or moan anytime,there is always someone there to listen.

    Ron
    ''Beer is proof that God loves us and wants us to be happy''. Benjamin Franklin (1706-1790)
  • sulkycat
    sulkycat Member Posts: 71
    edited 30. Nov -1, 00:00
    Hi,
    I did the opposite - I just laughed it off, not having a clue what RA was - it was other people's reactions that had me scurrying to the internet! THEN I did the shock bit.

    I live alone and am totally reliant on my wage, but am now not working and manage on what I get by way of benefits / DLA. It is possible despite being scary - and of course it may not to come to that stage for you at all.
    DLA is not linked to earnings so you may be eligible for even some help financially. I am still in the relatively early days (diagnosed last April) and yes it is a strange place to be mentally (and physically) but accept all the help and all the information you can get hold of. I recommend getting as many Arthitis Care leaflets and magazines as possible and whilst not scaring yourself silly with all the stories, get to know as much as possible.

    Getting an accurate diagnosis can be the slow bit but you have got that started, so that's good. Ask questions at the hospital, explain how worried you are etc - from my experience the RA nurses in particular are excellent.

    Very best wishes, Julia
  • liesa
    liesa Member Posts: 821
    edited 30. Nov -1, 00:00
    Hi Bowzer

    many of us have walked in your shoes,please dont apologise your allowed to feel pity for yourself... i was diagnosed with RA many moons ago then i was told it was polyarthritis, then it was osteoarthitis, now i havent a clue what it is, at first it was palindromic.... now im just downing the pills like a good little patient and dont know why im taking them... i ended up with severe pain in my left leg and nearly 5 years ago was given a new knee.... and thats turned my world upside dwn, the pain ive been left with is worse then what i ever expeienced before the op... im popping pills left right and centre and have no life, i stay at home on my own most days, ive 6 kids and a very lovng and patient husband Steve who does anything he can for me and gets upset wishing he could swap places and take my pain away, i have a lot of support from my kids who all stick their heads round the door a lot of the time and offer to help but pride gets in the way and brave face comes on... lol

    what im saying is give yourself the time to absorb things are gonna have to change and let people help you in order to keep life as normal as you can, im sure once things have ll settled and tests are all done your Dr will give you some medication that will help with stiffness and pain... just dont go overdoing things on good day or you will pay the price somewhere down the line...

    take care, someone is always around on here fo you xxxx
    love and hugs
    8997C823B17A6252CBCA252F4BF2932D.png
  • prefabkid47
    prefabkid47 Member Posts: 1,316
    edited 30. Nov -1, 00:00
    Hi again Bowzer.
    I meant to add to my first post that there are hell of a lot of forum members who because of early diagnosis and response to treatment lead near normal lives.Therefore they don't post because they are too busy doing other things and there is nothing to report.
    Ron
    ''Beer is proof that God loves us and wants us to be happy''. Benjamin Franklin (1706-1790)
  • traluvie
    traluvie Member Posts: 2,579
    edited 30. Nov -1, 00:00
    Hi and welcome,

    When you are first faced with diagnosis it can be VERY hard for things to sink in and can take time too..
    It can also take time to get the right treatment for you..What works for one may not work for someone else..
    I know reading other peoples stories can be very scary, but not everyone is the same. We on here are just a small proportion of the world with arthritis, there are many people out there who can lead a normal active life or who can change things in there life to make things better..
    It is too scary to be thinking to far into the future as no-one can predict how you are going to be..My best advice would be to take each day as it comes and concentrate on that day and listen to what your body is telling you, if your body is telling you it is tired you need to listen and rest and pushing yourself sometimes can cause more problems..
    You may find doing a pain diary or symptoms diary may help for when you go and see specialist, give them a clearer understanding..
    In the meantime we are here to support you..xxxx
    th_tn_TisFORTIGGER.jpgxxTracyxx
  • stickywicket
    stickywicket Member Posts: 27,764
    edited 30. Nov -1, 00:00
    Hi again Bowzer.
    I meant to add to my first post that there are hell of a lot of forum members who because of early diagnosis and response to treatment lead near normal lives.Therefore they don't post because they are too busy doing other things and there is nothing to report.
    Ron

    I'd endorse every word of this and also add that there are even more people out there, diagnosed with arthritis, who've never even come near the forum because things are going so well for them.

    Please remember that many of us have had arthritis for a long, long time and, for some, the arthritis took hold before they got onto any meds that would hold it in check. That is very unlikely to happen to you.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Colin1
    Colin1 Member Posts: 1,769
    edited 30. Nov -1, 00:00
    Hi Bowzer
    Hang on in there girl its not all doom and gloom I was diagnosed RA and PA in 1982, I never got what I call really bad with it until 2002 by that time my kids had grown up and fled the nest. The other thing is early intervention and your GP is on it now. It doesn’t effect us all the same way and the medications are varied , what suits one doesn’t always suit another. However they will find a med that suits you and it will make things easier. I know its hard to cope I used to think I was really bad off till I found this place. I have a soft spot for ladies with young kids as its extra hard work for them whilst us men just moan and be sick the ladies tend to just get on with things.
    ( Dont tell the guys I said this ) they’ll run me out of dodge. I done the crying bit but I’m past that now but I believe the RA coupled with the psychological effect does tend to make you more emotional (Me I’m just a total wreck with my emotions cant even watch the news ) I have no doubt you will make life changes but hey!! bowzer they could be 20 years away. Its true it takes away from you it’s probably the only thing in my life that I had no control over as for your abundance of self pity that’s ok that’s why we are here . You will go through many stages and the next one will probably be the why me thing. But your ok we all go through these stages its part of the RA. Now sit yourself down and ill make you a cupper oh and come here have a big hug there now feeling better.
    Look don’t worry take it as it comes just let the whole thing unwind and I’m sure you’ll be ok Stress doest help the RA but hey if you need to cry get it out your system now.
    You will have lots of nice people here who will help and support you all they can always someone to talk to about anything. Lets hope its not your last post and that you keep us updated on how you get on. Just keep in touch. I know its hard but keep your chin up.
    When god gives you lemons make lemonade
    Colin
    WHEN GOD GIVES YOU LEMONS MAKE LEMONADE
  • Colin1
    Colin1 Member Posts: 1,769
    edited 30. Nov -1, 00:00
    Its me again forgot to welcome you so welcome to the forum
    I was thinking about you when i came accross this its worth reading as this young lady has had RA for 10 years and wanting to have a baby.
    By the way RA comes in all shapes and sizes just cos its diagnosed doesent say it will be bad, theres all different grades of it.



    Methotrexate and pregnancy by katie 2012
    Take care
    Colin
    WHEN GOD GIVES YOU LEMONS MAKE LEMONADE
  • frogmorton
    frogmorton Member Posts: 29,901
    edited 30. Nov -1, 00:00
    Dear dear Bowzer

    Of course you will want to hug your kids really close.

    You weren't expecting this to happen to you or anyone you know were you? It wasn't in the life plan.

    What l will say is similar happened to me a few years back and l bawled all day every day for at least a week :oops: Then l saw a rheumatologist, got some medication...added some others a bit later on....then some more...did an a/c course on managing your condition.

    Here l am a few years down the line kids all teenagers now and my fears were not so founded. l am still ambulant and well the vast vast majority of the time.

    there IS life after diagnosis...you wont believer me now, but trust me there is. Not exactly the same as before, but pretty good in my case.

    Love

    Toni xx
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hi Bowser, what a shock, what a blow, what a bolt from the blue has been thundered at you. I am so sorry.

    I endorse what sticky had to say about the early diagnosis being a good possibility for you and so getting some meds on board, that can only augur well. I also endorse what prefabkid said about the 'successful' arthritics not posting, because they don't as they are too busy doing stuff I only dream about being able to do.

    Although the forum is a wonderful place it can appear to be very skewed as many of us regular posters have been arthritic for some time, have been there and done that with the meds and (for whatever reason) are still struggling with stuff (both emotionally and physically). Everyone's arthritis is different (though the labels may be the same one person's RA is not like another's), it develops at different rates, we all respond differently to the meds, and as to type, well, it can be hard to accurately diagnose. We will do what we can to help you with stuff over the next few hours, days, weeks, months - however long it takes there will always be someone here to listen. I wish you well. DD (fifteen years in and still wondering what the hell went wrong! :lol: )
    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
    Hello Bowser, how are you today? I have been thinking of you. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • bowzer
    bowzer Member Posts: 8
    edited 30. Nov -1, 00:00
    Hi Dreamdaisy and everyone else that kindly posted me a reply, I'm genuinely grateful. Everything you all say makes absolute sense but I'm finding it tough to see the wood for the trees at present. My wife (sorry, forgot to state my sex last time, I'm a guy!) is trying to stay positive & keep a check on her emotions until my consultant visit but I can see the fear/hurt in her eyes and that's the hardest thing to cope with so I'm trying not mentioning it too much (maybe partly in the hope that it was all just a big mistake and it'll all just dissapear). I even resorted to looking at RA checklists hoping to find symptons I don't have so I can convince the consultant I'm fine after all! My wife's told me stay offline as I'm not getting a balanced picture & scaring myself silly. I've become a RA professor at the school of Google.
    Maybe things won't turn out so bad but I've always been a bit of 'glass half full' guy. Only my wife and folks know the news so far, telling my brother and sister just makes me feel...I don't even know how to put into words. Reading this post I can see I'm swinging from positive to negative and back again.
    I woke up this morning and for about 3 seconds thought everything was fine, then I remebered and it hit me again as if I'd just heard the news all over again. Ok, I'm rambling now. Once again thanks to one all, I can't remember a time when I've told anyone so much personal stuff in my life, but it seems to help. Bye.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Of course you're finding this tough, I think everyone does in the early days. Don't bottle things up, Bowser, arthritis thrives on stress, feeds off it (it's the Herman yeast cake equivalent of illness) so if you don't want to burden your wife come and 'burden' us instead. I would advise holding off telling the rellies until it's all confirmed one way or the other as you do not need their stress being added to yours. Of course you must be straight with the consultant (although I understand why you don't want to be!) else he will not have the accurate picture and that will only be to your detriment. I think your wife is right, please stop googling because so much of the 'information' out there is anything but reliable: contact AC instead and ask about the guides etc they produce as that gives correct information, talk to us too as we know our stuff, there is also the National Rheumatoid Arthritis Society (NRAS) they should also be a reliable source of information.

    You are not alone, OK? You may well be feeling it but you're not, there is support on here. 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
    Sharing stuff does help, Bowzer, even when you're not the sort who normally wears their heart on their sleeve. This is a worrying time for all of you. DD is right. Arthritis feeds on stress. I know it's hard not to worry but googling is bad as the info out there is so hit and miss.

    I'm sure your wife is worried too, and is fearful, but remember that any 'hurt' there is caused by her fears for someone she loves - not by you. She's hurting because you're hurting. You have not caused her pain. It's what happens in marriage. Mr SW gets very upset if I'm in a lot of pain. You share the good times: you share the bad times. That's how it works.

    Keep talking to us. We understand all too well. But, even if it does turn out to be arthritis, remember there is life after diagnosis. And much of it is good.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • bowzer
    bowzer Member Posts: 8
    edited 30. Nov -1, 00:00
    Hi SW & DD,
    Thanks for your comments/advice. I know what you say makes perfect sense and comes with the compassion and understanding of first hand experience, I'm just struggling a bit to be positive about much right now.
    2012 was already looking challenging for us, as for many folk right now. Personally I'm currently trying to keep a company going admidst all this economic gloom (for the sake of my job and others) and had just put studying for my degree on hold to allow me even more time to do that this year, hence my stress levels were already heading north. With a probable RA diagnosis as a New Year present it's kinda pulled the rug from underneath me.
    I was lying in bed last night listening to my family sleep, envious of my old self from just a couple of weeks ago and thinking just how uncompatable my life is with a desease like RA. I guess I've reached the 'why me' stage as earlier posts suggested I would. I was probaly a 'grumpy old man' anyway, always thinking I could do better, but if I could turn back time jsut a fortnight I'd live my life like some demented latter day Scrooge following his premonitions! I know what comes my way may not compare at all to what others have faced in similar circumsatnces and hope I don't come across as ungrateful or self centred, I've just been lucky enough so far in life not to have anything to compare this with. B
  • barbara12
    barbara12 Member Posts: 21,281
    edited 30. Nov -1, 00:00
    Hi bowzer
    And a warm welcome to the forum from me
    The others have said it all really,everything you have mentioned really does ring bells with us all whether it be OA RA PA and many others.
    So dont forget we are always here for one another, and believe me it does work to talk to people that understand
    You take care
    Love
    Barbara
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    You are in the very early stages of this, the diagnosis is well on its way and the meds should soon be in place: now that should be a good help in controlling matters. There is a chap on here called William who is on tablet methotrexate and leading a totally normal life. You could be he, we just don't know that as yet. The essential you has not changed, the arthritis will not affect that, and it may not wreak the devastation on things that you seem to be expecting. It is not all gloom and doom, not by a long chalk. Stay as steady as you can - now for some futile words and advice: try not to fret too much about the 'what ifs' as you don't know what they are or what the future holds. None of us do. I too find positivity hard at times - I am currently finding solace in the fact that it's sunny! :smile: DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • prefabkid47
    prefabkid47 Member Posts: 1,316
    edited 30. Nov -1, 00:00
    Hi Bowzer
    'A RA professor at the school of Google'.Not always one of the best colleges to graduate from let alone be a senior staff member of!
    Many of the sites can be inhabited by a disproportionate number of 'doom and gloom merchants' and they post accordingly (more positive folks are too busy living their lives!).
    I had ankle replacement surgery last year (due to OA) and have never been so mobile and painfree for years.If I had taken notice of many of the postings I would probably now be in a wheelchair and in constant pain I'M NOT!
    Similarly my wife had a tonsilectomy last year,and a couple of hours post op was eating a sandwich!If she believed many postings,she would be living on liquids for months,spend weeks in bed,be in constant pain and expect to lose 2 stone in weight,SHE DIDN'T!
    Lecture over!Excuse the cliche,but it is always darkest before the dawn (especially if you are laying awake in bed!).Once your RA is confirmed (or otherwise) and some course of treatment has been put in place you will feel more settled and positive,we've been there.As we have said there are many people out there with RA living near normal lives who consequently don't post or have never joined the forum.
    Keep us posted as to your to appointment.
    Regards
    Ron
    ''Beer is proof that God loves us and wants us to be happy''. Benjamin Franklin (1706-1790)
  • stickywicket
    stickywicket Member Posts: 27,764
    edited 30. Nov -1, 00:00
    You are already learning one of the hard facts of arthritis ie just because you have it/may have it doesn’t mean to say you don’t also have to contend with all the normal shift of life.

    You write of your life being incompatible with arthritis. That may, or may not, be so. As DD and Prefabkid have said, there are many, many arthritics out there leading near ‘normal’ lives. Sometimes it’s just a matter of hitting on the right meds. Learning to listen to your body helps too. Deciding on what stuff is really important to you and being prepared to let go of the other stuff. Or postpone things.

    You don’t ‘come across as ungrateful or self-centred’ – just as someone who is living with the uncertainty of potentially having a chronic disease. It’s normal and natural. No need to apologise.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • bowzer
    bowzer Member Posts: 8
    edited 30. Nov -1, 00:00
    Hi everyone,
    I had a reasonably normal weekend trying to be positive, mainly thanks to your posts. However, I didn't mention RA to anyone, not sure if I'm coping with the issue or just ignoring it. It still doesn't seem real and I find myself forgetting for an instant then the dissapoiontment floods back like a tidal wave. The last couple of days have been a real struggle (not with pain, but with myself/thoughts/worries/grief), particularly last night.
    So far I've had no real pain, just some minor aches & a little stiffness which is making it harder to appreciate where this whole thing might lead and that it'll be with me for the rest of my life.
    I'd foolishly always thought I'd have the inner strength rise to such challenges in life, but unfortunately find myself falling way short.
    I haven't contacted the AC advisors for advice as yet, as I don't think I'm ready to face the everday black & white truths right now, counter productive I'm sure. My appointment with the RA consultant is on Monday morning, going alone for practical reasons. Not looking forward to it.
  • tkachev
    tkachev Member Posts: 8,332
    edited 30. Nov -1, 00:00
    It is early days Bowzer, take one small step at a time. Try not to fear the first appointment with the consultant. This is your time to get on a roll medication wise, which will in turn help with any pain and inflammation.Write down a list of a questions you want to ask beforehand- it is easy to forget at the time.

    I left my first appointment 12 months because I had just moved house and hadn't a GP sorted(couldn't sort without attending a hello medical and wasn't well enough to walk or drive to surgery-catch 22) and had had my Son the month before and thought I'd overdone it at the Gym. I so wish I had had some knowledge of R.A beforehand to speed me along to GP so I could have had some help dealing with the pain.

    It is all a bit unreal at the moment and a shock. It takes time to get used to and i'm certain your inner strength will shine. At the moment it is early days and a lot to take on board.
    I wish you well at your appointment and hope you will let us know how you get on.
    Elizabeth
    Never be bullied into silence.
    Never allow yourself to be made a victim.
    Accept no ones definition of your life

    Define yourself........

    Harvey Fierstein
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hi Bowser, how are you today? I'm just popping in to wish you the best for tomorrow, don't be afraid to ask questions, take notes or even record the interview on your phone - it's amazing what one can 'miss' when one is under stress (and these visits can be stressful). The rheumatologist may order more blood tests and/or scans, that is entirely usual and does not denote anything extra to concern you. Please let us know how you ge on. I wish you well and take care. 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
    Don’t be so hard on yourself, Bowzer. As/when/if you are diagnosed with some form of arthritis, you will find the inner strength you need. It’s that little glimmer of hope that complicates things right now. You are, quite naturally, hanging on to it. So would I.

    I hope your appointment goes well. Just tell it like it is. Don’t minimise or maximise pain, stiffness etc. If you think you might forget stuff (It’s so easily done) take notes in with you.

    You will not be going alone. We’ll all be there encouraging you.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright