Hi all, just been diagnosed with RA. Just waiting for the hodpital, at Hillingdon, to arrange my first appointment. What now, worried!

I had planned to retire in 2 months time and play lots of golf. Not sure whether I will be able to now, play golf that is definately going to retire. Any thoughts on what I can expect over the next few months would be very helpful. I am also due to go abroad on holiday in September this year. Will I still be bale to go or am I just being a 'worry wort'?

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  • You will be able to play golf,but at a slower pace than you intended. When they get you meds sorted out you will be aable to do most things,yes even go on holiday. The trick with ra is pacing,do a bit rest a bit like that. It will be hard to do as i'm the worst for resting. When i get it in my head to do things i don't always think and boy do i pay for it.

    Worry wort is a good word to use,its a auto-immune disease you have and it won't kill you,but you will have to change your life style a bit. Do what you can think you can do and see how it affects you. Plan days when you want to play golf and make sure you rest up the day before,then you will be able to enjoy yourself.

    There are plenty of good people on here who will advise you and ypou can share your good days and your bad days, and believe you me you will have a few bad days.

    Best of luck. sylvi. x

  • Thanks Sylvi, much appreciated. I've always felt that the best advice generally comes from those in the same boat. Certainly more practical and knowledgeable anyway. Not sure what to expect from my firsat appointment so i'm sure it will be an adventure, of sorts anyway. It looks like the key to this is to not let RA define you as a person, it is just a part of you. That's my positive for the day, no doubt until I hobble out of bed in the morning!!

    Richard

  • Stay positive and pace yourself Richard, and you ll still be able to play golf and enjoy retirement. There are so many forms of RA and degrees & speed, at which it arrives.

    Hopefully, for you will be slow, and just a case for some methotrexate. There are plenty of great treatments for RA, just finding the right one might take bit of time.

    Welcome on here, and I'm sure you will find plenty great tips.

    Gina.

  • Thanks, Gina, I need to hear this too! I'd like to know more about 'degrees and speeds' and how this is assessed and what I should be asking for - because my dx didn't come quickly (took a few years!) and mtx does not agree with me - but the fear was put into me by a doctor, and now I need to feel calmer - information will help, where can I find it on the 'degrees and speeds'? Many thanks

  • I don't think there's any easy answer to that one Mads because we are all so different -unique if you will. But you could try phoning the NRAS helpline if you are worried it's all coming too slowly and at too high a price for you to deal with (and heaven knows I feel that too!). Go back to the doctor who put the fear into you to begin with and explain your fears and demand some answers - go to your GP if you aren't getting answers fast enough from rheumatology. On one hand they tell us that there is a short window of opportunity to treat the disease before ireversable damage happens and on the other they leave us in the mess and muddle while they drag their very well paid heels and ponder on what to do with us next?! TTx

  • I don't mean 'just' methotrexate, it also is a toxic med, but readily available and with a long and proven track record. :)

  • If you are going on holiday to the sun, then you will probably feel much better. One of the best self helps for RA is vitamin D = sunshine.

    But if you are going mountaineering or somewhere damp, well that's a whole different kettle of fish.

    I treat my regular visits to the Canaries as my own alternative therapy!

    PS take a friend or a note book to your appointment. They can give you too much information all in one go sometimes!

  • Hi there, sorry to hear you've been diagnosed. But it's the first step to getting life back in order, and chances are that things will improve hugely for you. For the first appt the important thing is to tell the doc how it is for you - keeping a pain diary is good as you may well forget details and reminding yourself can help order things in your mind. But sadly there isn't a quick fix pill for RA, most of the drugs take months to take effect so do need to make sure you discuss pain control with your GP too.

    The other thing that the rheumy's don't often discuss much is that it can be a bit of an emotional battle to come to terms with having a chronic and incurable disease - so don't be hard on yourself, and allow yourself to grieve if you need to. We all have bad days.

    I can't say I've very tried golf - but if I wanted to I could now, and 2 years ago I was struggling to hobble across a room. But personally I prefer cold & grey weather - many of the drugs can change your sun sensitivity so I now hate the heat!

    Good luck, let us know how you get on.

    Polly

  • Hopefully your appointment will give you chance to express any fears/ queries take a list with you!

    Hope it goes well x

  • Hi,

    I recently had my first rheumy appointment, that was because i had the RA positive factor re-blood test, I am still waiting for a diagnosis.When i saw the consultant he said i should have Ultra Sound on my feet and hands fingers havnt got results yet.Given Anti inflamatory drugs and lyrica.I suffer with quite a few aches and pains in most of my joints,luckily i can do most things on a good day.If your playing golf now ok carry on, exercise helps! The Holiday will be wonderful do you a world of good.

    .Best of luck with your treatment Let us know how you get on.

    Pat.

  • Hi there

    I've had ra for a long long time - and still the best advice given to me was the original "use but don't abuse" your joints. When a spell is particularly bad, remember brighter days will come eventually.You WILL get to manage it all better; remember to tell all your worries- its your life to manage and enjoy. Drugs vary with everyone...Good Luck! hopalong......

  • If you have a smart phone with a recording app on it then I suggest you turn it on before your consultation so you can play it back to yourself afterwards in case everything goes out of the window! I was only diagnosed last November formally but had been struggling with the symptoms that my GP was sure were caused by RA for about 10 months already. This place is where it's at for support and good info and advice. TTx

  • I wonder if Sylvi has ever played golf. I have, 11 years ago, and I got down to 10 handicap. It’s not the actual playing that’s the problem; it’s the 4 mile walk that goes with it, 3.5 miles if you’re a good player. My advice is to invest in a buggy and have your grips thickened to make them easier to hold when your hands are bad. You will feel very tired at the end of a game and the advice given of resting before and after is good advice. I’ve given up my golf but please keep going as much as you can, even if it’s just 9 holes, stick at it.

    I find that swimming helps build up any muscles, as it’s weightless exercise, whatever you do, don’t give up!

  • Thanks to everyone for their advice and encouragement. Much appreciated and needed. I do have bad days when I think a 'normal' life is finished and I will just become a burden on my nearest and dearest. I also have good days when I think that I will not let RA define me as a person. I think this is possibly one of the hardest times when, just having been diagnosed, I now have to wait for the hospital to send me my first appointment time. Don't they know I am the only person in the world who needs treatment (DOH!)

    I am glad that I have found this site and other people who have gone through what I think I'm going through. It is always helpful to hear from like diagnosed people about the fears and possible humps in the road ahead.

    Thank you all.

    Richard

  • Hi - I think one of the most important things trhough this is to try to stay upbeat and positive and it sounds as though you are doing that! And yes I agree it's good not to let RA definte you as a person - probably one of the trickiest things though!

    Good luck with that appointment and hope you get to play a lot of golf! Holiday should be fine - just remember all those meds plus extra just in case of any delays (you know like volcanic ash, snow etc)!

  • Hi Richard,

    Your head must be swimming, I was diagnosed 4 months ago, and am still trying to get my head around it. The NRAS helpline is very good and they have a lot of good literature including a book called newly diagnosed. This forum is briliant because you get info from people who understand. The rhumy will ask a lot of questions, like when it did first start, what is the pain like, what do you have problems doing, any joint problems in the family, just have a think, and if you are able write down a list. Also, ask what meds will I be on, and what help is there available to help me come to terms with it? My rhumy rushed throught the appointment and shoved a leafter about RA across the desk and the door is that way.

    Most of the information I have gotten from the internet, don't be afraid to ask questions, the buggy for playing golf is a great suggestion, that walk can be a killer, as long as you pace yourself the day before you play and the day after and maybe have the buggy to speed you round the game of golf is still there. As for a holiday, the relaxation of it will help. I am still trying to figure out the pace yourself bit, that is one of the hardest things is the tiredness. We all learn in different ways. With the meds, what works for one may not work for another, and some may have bad side effects while others have none. For everyone one of us R.A. is different, you too, will have unique expereinces along the way. Lots of luck with your appointment, take someone with you, and hope you get the support. We are still a person, the R.A is part of us, but there is a lot to us too in our interests, and that we have families etc. Take care, Paula x

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