Struggling with Diagnosis

tanglette

Hi Bowzer,

I have to admit I know roughly where you're coming from. I'm 27 and was diagnosed with Seronegative RA, Secondary Fibromyalgia and IBS with incorporated Raynaud's and Sjorgren's on 17th November 2011. Nobody else in my immediate family have any of these conditions.
It's hard, it's damned hard to see the wood for the trees sometimes. It's such a vicious cycle: you feel angry, upset, depressed at the "slightest" thing. When you have to start making choices as to activities where you would once have been able to do 10 things a day etc.
If I'm completely honest, I'm still in freefall over the diagnosis. I've adopted an almost matter-of-fact attitude to the meds because it the only thing I can have control over - although sticking a needle in my leg once a week with cytotoxic fluid wasn't exactly in my master plan for my life!

But...you need to surround yourself with people who can pick you up when you hit the floor (in a figurative sense). You have to learn to accept the limits and re-map your lifestyle. But in the end, we have no choice in the matter. You have a family who love you and need you around...giving up isn't an option, however it's perfectly acceptable (and wholly understandable) to hit rock bottom every so often.

Hugs
Tanglette

petals

Hi Bowzer,

Just wanted to say good luck today at your rhumy appointment.

Please be honest with your consultant, do not minimise your symptoms in a hope that they will dissapear because if it is RA then they simply wont. This is your big chance to get this thing sorted.

You are very lucky to get an appoinment so soon, my hospital has a three month waiting list and I myself had to wait 6 months for my first appointment due to a cockup in the booking system (that's a whole other story) by which time I was in considerable pain.

As others have said, once you are on the correct drug for you you will begin to feel much better. Before I was diagnosed I was often reduced to tears because of the pain in my hands and wrists. However, once the drugs started to work the relief was immence.

Just try to take one day at a time, if I wake up and feel reasonably mobile and pain free then I try to make the most of that day, sometimes when I don't feel so well I recognise that I need to take things more slowly and so try to adjust my day accordingly.

This is not a punishment for anything that we may have done, its just real life. Yes it is a serious condition, and yes it can impact on our lives but at least it is more treatable now than it used to be. For that I am very grateful.

Keep your chin up buddy and go nail this sucker. You are in very good company on here.

Best wishes, Petals x

tkachev

Hope today's appointment goes well Bowzer. Let us know how you get on.

Elizabeth

bowzer

Hi Everyone,
Had my Rheumy appointment today. Had to travel 35mile to get such a quick appointment (as was the case for 'Petals', my local hospital had a 3 month wait!) My wife was able to come along in the end, I think to make sure I told 'the whole truth and nothing but...' God bless her.
The doc asked questions then physically examined me. I also had x-rays (feet/hands/spine) and some more bloods, the results of which I have to go back for in 3 months. I asked lots of questions and got lots of answers, but somehow I'm still a little confused.
The way I'm reading it is this - my elevated CCP level means that I'm all but guaranteed to get RA at some point, but I don't present with enough of the physical signs right now to warrant the diagnosis as yet. Please don't get me wrong, it's a result I'm happy to grab with both hands for now, but I feel a little numb. The info I've read insists on treatment with DMRAD's ASAP for best results and I simply don't want to miss the boat.
The thing is, if my aches/pains/stiffness aren't RA, WHAT ARE THEY?? Never happy eh? Either way, I'll be attending a dedicated clinic for folk with elevated CCP where I'll be monitored (quaterly I think) for the earliest signs of RA. Though I'm not happy at the prospect of a RA in the future, knowing it'll be addressed at the earliest opp helps a little and I'll get the chance to discuss with a specalist any worries I have on a regular basis. Also have a helpline number should my symptoms worsen in the meantime.
The support forum's like this one can provide can't be underestimated in my view either, many thanks to all of you, I only wish we'd chatted under different circumstances.

stickywicket

That really does sound like a good appointment.

1.You are being taken seriously.
2.You have had bloods and x-rays.
3.You will continue to be monitored by people who really know what they are about.
4.You have a helpline number in case things go pear shaped in the meantime.
5. Yes, it is important to get early DMARD treatment if you have RA but you are now, to all intents and purposes, assured of that.

And, I’m so pleased Mrs. Bowzer managed to attend. Two sets of ears are better than one.

As for wishing we’d ’chatted under different circumstances’ – I guess it’s the ‘silver lining’ thing, Bowzer. We’re all grateful for it.

skezier

hi Bowser,

I love the name, and actually could do with one

Sorry i am late to this, i haven't really been about much for a min.

Its hard to take on bored for sure and the fears run riot for a bit but once they have your bones under control it does get easier.

Sounds like a decent appointment to me as well and just hang in there and take one day at a time for a min. Sometimes that one day at a time thing can really help. Nice to meet you and as sticky said its a shame its not under different circumstances. Cris x

Oh keep in touch and I so agree sometimes just writing t all down helps relieve some of the pressure and this lot make brilliant listeners

dreamdaisy

Well, I would say that 70 mile round-trip was worth it, yes? At least you know that you have an 'in' for the next few months so should anything alter you can be seen (hopefully) quite quickly. Like Aunt Ada Doom you do have 'something nasty in the woodshed' but for the moment it's staying relatively hidden. This is a good thing too - yes, a quick drugs response is definitely a good thing in helping to bring matters under control but it does help if there is clear evidence of those matters and at the moment there is not as such, it's more of a hint. These drugs are not to be taken lightly, Bowser, it's best to have 'em when the need is clear.

I hope you are feeling better in yourself now, and I too am very pleased that Mrs B was able to go with you. Mr DD comes to all my appointments and he is very good at remembering what was said, whereas I am not. :oops: I could manage stuff without his support but I wouldn't be able to cope as I do without him, if that makes sense. Take care and rest assured that if you need us at any time, we'll be here. DD

bowzer

Hi everyone,
As ever, thanks for your posts, they're much appreciated and calming.
Of course, you're all right, it was a good appointment (if that's possible!). I just wish I could sort my head out and settle down a little quicker.
You've no doubt guessed, but I'm a bit of a worrier and security freak to say the least.Therefore the promise of such an unknown future has more than unsettled me. As I do the normal every tasks I've always taken for granted, such as putting the bins out, giving the kids piggy back rides to bed or driving to work, I find myself questioning if I'll be able to do them in the future and get myself into a blind panic. Sometimes I also feel a bit like I'm a step removed from my own life, watching it from a distance and not really being a part of it anymore if that makes any sense.
Sorry if that sounds overly dramatic, I find myself shaking my head as I read it back but it's just hard to explain. As my Doc said, I've not been diagnosed yet, but already given up on my career, lost the house and let the family down!
I'll go now and kick myself up the backside (one time from each of you!)
Best wishes, bowzer.

bowzer

Hi again everyone, hope your all in good form...

It’s been a around a month since my first Rheumy appointment with two more to go before my next check-up. That said, I think I’m going to try and get one sooner. I can slowly see the pains/stiffness in my body (especially my hands) increasing daily, albeit very slowly and I’m finding that incredibly hard to accept. I’m starting to dread mornings. I awake, then lie in bed, slowly stretching and flexing every part of my body in turn to check where else I don’t feel like my old self.

As some of you suggested, I contacted the NRAS for a chat. They suggested I maybe get a second opinion (privately if possible) and see if some milder DMRAD’s might be an option at this stage. Also a private appointment might allow for extra time to talk through my concerns & worries a little more thoroughly. Though totally understandable considering the pressures upon the NHS, so far I’ve felt I’m against the clock when trying to talk things through with clinicians. My GP(s) seem to want to nod their heads politely, prescribe me some painkillers and leave the rest to the Rheumy. On the other hand, my Rheumy seemed to glide quickly over many questions. That meant I found myself asking some questions twice in a roundabout way, even then I wasn’t sure if I’d got an answer or not which left me feeling a little dumb for not understanding in the first place. I suppose it’s all just everyday routine to them.

That said, at the time I was happy with my appointment and felt it went as well as it could have under the circumstances. Maybe I’m being unfair as I become increasingly frustrated with it all, but there definitely seems to be a huge disconnect between being diagnosed with RA (or in my case being told to sit tight, it’s just around the corner) and any structured support in the meantime to help you take it all in. I’m sure the 3 or 4 GP visits I’ve recently had could have been addressed in one single appointment.

Anyhow, strangely I’ve found myself drawing up a type of a ‘bucket list’ (not that I intend to sign out just yet!), wondering if I should make the most of my current dexterity just in case things get considerably worse. For example: learning to play the piano, getting on with the DIY I should have finished ages ago, sorting the garden out, clearing out the garage, putting stuff in the loft, editing the holiday videos on the computer (the kids love ‘em, honest!), etc, etc...

I think this stems from my fear of things RA may prevent me from doing in the future. A bit bizarre really, I admit. I think my perspective on things has become rather skewed of late. I‘ve certainly changed somehow: good, bad, or just different, I don’t know yet.

I know this is an old thread and your past replies superbly address all the new grumblings raised in this new post, but I just felt like tapping away a bit...
Best wishes, bowzer.

dreamdaisy

I am sure it was said before, Bowzer, we're always here to listen and we are. There are a fair few of us who don't get out and about too much for various reasons so I can guarantee you that!

I did my bucket list way too late (about ten years after the event) and mine included learning to do cartwheels, ice skating (preferably of the speed variety) tap and ballroom dancing. :roll: It is so true, you don't know what you miss 'til it's gone. Having said that, please try NOT to do the daily check for things that are maybe not as they were yesterday: although it is entirely understandable surely it only increases the anxiety, frustration and irritation levels. There could be all kinds of reasons why bits of you don't feel as they did the night before, including advancing calendar years. I think this is another facet of arthritis, we tend to link everything that happens to us to it, and sometimes it just ain't.

Keep as positive as you can, if you can't come and tell us, good luck with the list and don't fret if you don't get it all done! Take care and I wish you well. DD

tkachev

It is good that you are being monitored as they will prescribe the correct meds as soon as needed. 3 months is fine I'm sure.

Very best of luck
Elizabeth