What do you expect?

Hi - Just reading some sad questions and I have had to tap on the keypad when will it ever get any better?

RA is all doom and gloom, the prospect of operations in the future scares me so, im not into operations- not that anyone is, unless its self inflicted like lipo, or cosmetic perfection.

I dont want to think that I am confined to a chair, or sat in a hospital bed

I want (as we all do ) to remain active, pop a pill to keep things under reasonable control, enjoy life to the full.

RA leaves you with daunting thoughts that every thing is going to end up miserable

Anyone else feel like me?

:-(

13 Replies

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  • it's natural to have these thoughts. no-one can predict the future and we are all unique, but if it helps I've had re for 35 years and :I'm still up and about, I have good & bad times, but you learnt to adapt compromise and applaud achievements. I've had no ops for it but would if it helps.

    take one day at a time,

    regards,

    sandra.

  • Oh yes I feel exactly like you.

    Ive had ra since November 2011 and still not sorted with meds. Finally diagnosed April 2012.

    The longer it takes for them to sort the meds, the more joints its affecting.

  • Live for the day.. days even.. says me at home sick I WILL get well again . I had sixteen months remission on gold now stopped working . Most people do not end up in wheel chairs x

  • Just be aware that the people who use message boards like this are the folk who either are fairly new to RA and haven't yet gone into remission on treatment, or are having flare ups or have more severe disease that is harder to control. The vast majority of folk with RA don't have such a need for this kind of forum because they have got to the point of being well controlled, aren't having flare ups and are doing well. It takes some folk a lot longer than others to get to that point, but most people will, so keep up hope, and if you aren't satisfied with how well your treatment is working right now, make sure you keep on reporting back to your rheumatologist and rheumatology nurse, and keep on asking them what happens next, what more can you try, what can they offer you. If they ever say they can't offer you any more, then get a second opinion (which you are entitled to in the NHS) or change doctors.

    Most folk WILL get their disease controlled pretty well, many to the point where on treatment they barely know they have a chronic disease and don't have any real limitations. It just takes time and trial and error sometimes to get to that point.

  • I'm a worrier but I don't feel at all doom and gloom anymore. I think it's important to keep our sense of humor as Allanah and Sylvi both do and be positive. There are young ones who come on here and they know they have so much longer to live and cope with this disease that it's important to keep perspective. I come on here and although I have my fears and sometimes voice them - I have many more good days where RA is not first and foremost in my mind. I have a close friend who lost her only child at the age of 19 a few years ago and if I ever feel sorry for myself I think of what she bears and pull myself right up out of it almost instantly - since she is one of my closest friends and we can often laugh together like drains it seems churlish to allow negativity to prevail.

    Go with the flares and the pain and the lows for a while but then remember to also count your blessings if possible because there are lots of very positive things going on on this site too and good news stories are found on here too. As Summer says live for the day - there are lots of people with RA who live a full and operation free life nowadays. Tilda x

  • I did feel like you to be honest but since being diagnosed over 12 months ago, and suffering for some years before that, I am now feeling so much better after a few hiccups with medications. I TOO WAS SO DEPRESSED THINKING THE WORST, BUT NOW FEEL COMPLETELY DIFFERENT AFTER FINDING THE RIGHT DRUG FOR ME. yes, i AM NOT PAIN FREE, BUT THE AWFUL PAIN AND TIREDNESS HAS DECREASED TO SUCH AN EXTENT THAT i CAN DO EVERY DAY THINGS WITHOUT CONTINUALLY THINKING ABOUT 1-WHETHER i COULD DO IT OR 2-what effects will I feel in 24 hours. Please think positively. Things can always improve.

    All the best

    Carolyn

    (Sorry I obviously hit caps lock somewhere along the line!)

  • My mum had RA diagnosed in 1950s she didn't need wheelchair

    They're closing surgical wards because the treatments are do much better.

    Hope that helos

  • Hey Reikimaster,....... I know how you feel but remember, there are worse things than RA ,,,, i have suffered with RA for 16 years & when i go out ( in my wheelchair or my electric scooter ) & i see people much much worse then me i thank God for only having what i have ..... now don't get me wrong i have PAIN DEEP PAIN i have been like it for years you learn to adapt, if thats the right word and ofcause with the Help of a good Consultant and Medication it helps a lot......, I do find having a Hobby helps me,..... i do CRAFT WORK at Home i make Greeting cards it really does help to RELAX me & i love doing it...., I do remember when i was first diognosed with RA I THOUGHT MY WORLD HAD TURNED UPSIDEDOWN but you know what .... i was not going to let it get the better of me sooooo i kicked it in the BUTT and said this is my life and i am GONA GET ON WITH IT, Please try not to let it drag you down i know it can be very difficult,.... take care ,..... lots of love to all you lovely people,..... xx

  • I let myself get maudlin now & again I consider it a necessary release of pent-up pessimism! Having a chronic condition just is bad news but there's so much more to all of us than our health or lack of it. And anyway, whilst it can be good to face reality, the reality of RA is that surgery and hospital beds and wheelchairs probably WON'T feature for most of us so it's not so dreadful.

    You are not alone with your dark thoughts, it's just normal, but don't forget to banish them before they drag you down.

    Luce x

  • Dear all

    Thank you for sharing your thoughts. I guess I was feeling a little sorry for myself because of the state of my hands. I get these awful pains in my hands and feet. I have such weakness in my hands these days which stops me from doing things I took for granted, like decorating even writing hurts.

    I dont know if anyone else has the terrible pains that need pressure to ease, I mentioned this to my consulatant a few months ago when I last saw her - she reckons its not related to RA she has no idea what it is.

    I have to wear these compression gloves which are great- but worry that I over wear them- they do help.

    Best wishes

    Caroline xXx

  • Hi Caroline - when my hands were at their worst they did hurt a lot and I found writing difficult and even putting hand in my handbag to fish anything out or do up zips or cook, chop etc. But the MTX has really sorted this out although they do vaguely ache still and are definitely getting a bit more squint all the time and they are weaker and not so deft as they used to be. As I've said on other posts I don't know if this is RA or OA but yours sounds much worse than mine just now anyway. I don't know what other things affect the hands but I take it you've tried hot paraffin wax baths and running them under hot water for some relief? I think Fibro and OA can both make hands sore too.

    I know it's easy to get low when you're in pain - hope things improve. Tilda

  • Hi Tilda

    I have not tried the paraffin- do I get this from the chemist? or just melt a candle??????

    I am due to see the consultant in a couple of weeks so I am interested what she may do- I was promised anti TNF last November which did not materialise.

    I was joking about the candle- but is it such a bad idea?

    Enjoy your weekend xxxxx

    Caroline ;-)

  • hi, I've been where you are....I felt so low...with so much of my life ahead of me...I'm mid 30's and have had problems for about 5-6 years....I was dignosed a few years ago....and haven't got relief until the last few weeks....

    be honest and open with your consultant, state what your expectations and needs are so that he can understand where you want to be... and treat you approrpiately...don't pretend things are OK when they aren't....get all the help you can....you don't get medals for struggling alone...(although I'm my own worst enemy at this one cos I don't share my problems with my hubby kids family and friends, I put on my brave face and get on with it!! I am a mum, I work, I exercise (gently), I'm doing a masters degree (lifelong ambition), I clean my own house cos I can do it myself rather than pay someone else so more satisfaction! (just about but getting easier! my hubby hoovers for me!) etc etc...its all about positivity and frame of mind)

    Things will get better it just takes time which is very frustrating....and earthwitch is right.....only people who need support are on this forum...theres millions of others getting on and living their life who don't come on here....so its a skewed perspective, but one that I found helped me get my own life in perspective, theres so many others worse off than me...!

    Good luck x

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