how do you come to terms with ra

robosh1976
robosh1976 Member Posts: 7
edited 15. May 2015, 10:53 in Living with Arthritis archive
i am 38 year old and i am having to give my carreer up as a coach driver as i can barley drive my car without being in tears through the pain in my hands wrists elbow and shoulders and my knees just relised writing down here where it hurts i should of just put my whole body would of been easier lol what really makes it hard for me is i have a wife and 3 kids and the youngest is only 5 months old and at times i really struggle to pick her up because the pain is that bad i have been to the doctors and had blood test done and they came back as negative and the doctor has said it is more than likely sero-negative rheumatoid arthritis but has refered me to a rhumatoligist to confirm everything

Comments

  • stickywicket
    stickywicket Member Posts: 26,278
    edited 30. Nov -1, 00:00
    Hello robosh1976 and welcome to the forum.

    That's a tough question and I'm probably not the best person to answer it because I've had over 50 years worth of practice and it does get easier. But you are 38 with family responsibilities and that is hard on so many fronts. I remember devising several odd ways to pick up my babies. Folding them over my forearm usually worked but I scared my mother-in-law.

    You are due to see a rheumatologist, hopefully get a diagnosis and then be put on medication which will, with luck, slow down the disease. That's the good news. However, constant, unrelenting pain can, like a weed, take over all our lives and cloud even the good stuff. Has your GP given you anything to help while you're waiting? In the case of arthritis, painkillers do not do what it says on the packet but they can ease things a bit. When things are really bad I try to lose myself in some favourite activity – watching cricket, reading a good book, doing computer games.

    Coming to terms with arthritis is an ongoing process. And a battle. We have to concede some defeats in order to stay strong and win the war. I've given up a lot of stuff over the years but I keep trying new things too. You'll learn when you must 'give in' and when you can tell yourself 'It's only pain'. It all takes time. You might find it helpful to read the thread on 'acceptance' above. You'll see you're not the only one who finds it difficult.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • robosh1976
    robosh1976 Member Posts: 7
    edited 30. Nov -1, 00:00
    all the doctor has given me is tramadol and some anti depressants as i am feeling very very low at the min
  • dibdab
    dibdab Member Posts: 1,498
    edited 30. Nov -1, 00:00
    Oh dear, I can feel your pain both physical and emotional. Coming to terms with RA is something that takes time, and it's really important to talk it through, here is a safe space because lots of the folks have been in just that place you are today, and together we're working our way through it. Perhaps the scariest thing is imagining what the future looks like, but try not to panic.

    Once you've seen a rheumatologist and got a diagnosis there are all kinds of medicines that can begin to control the disease, as yet there isn't a cure, but the sooner you get a diagnosis and start getting on top of the symptoms the less lasting joint damage will be done. In the meantime ask your GP about decent pain relief, and try to work out what causes the worst of the pain, sometimes you can work out ways of changing how you do stuff that takes pressure off sore joints. I have sero neg RA and the hospital are marvellous , as is my GP, it really is something you learn to live with, but in my experience it's important to share honestly with the nearest and dearest how and when I'm struggling, otherwise they feel excluded and they really do want to help as best they can.

    Hope your appointment with the Rheumatologist comes through soon, maybe try to take some one with you to help listen to what they say , it's hard to take it all in when you're there.

    Deb x
  • stickywicket
    stickywicket Member Posts: 26,278
    edited 30. Nov -1, 00:00
    Of course you are feeling low. I hope the antidepressants help a bit.

    There are other painkillers (or, to be more accurate, paindullers) . Different people find different ones help. There are also anti-inflammatories and steroids but they can make diagnosis harder so docs often hold back on them. The quicker you can get diagnosed the better. While you're im the waiting stage just try not to overdo things which will only make things worse. It's hard.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    Hello, I am so sorry you have had to find us and I can understand how low and frustrated you are feeling. I am nineteen years in with this nonsense and occasionally feel the same despite being an old-hand. :wink: I am on a daily low dose of Citalopram to help me cope with matters and it helps. Firstly (although I doubt you will see it this way!) your GP is really on the ball in knowing that sero-negative arthritis exists and is to be congratulated in referring you so rapidly. The rheumatologist is the one who knows a lot about a little and will, hopefully, be able to shed further light on your condition and set up some proper meds to tackle it. Over the years I have been attending my clinics I have seen the benefits of quicker diagnosis and getting on the right meds sooner rather than later.

    Secondly, arthritis not only affects our joints, it affects our emotions, our relationships, our work life, our family life: it's grubby little ripples reach out and touch everyone and everything in our lives.

    Thirdly, I was only 37 when my troubles began but as I have a history of auto-immune troubles this, although a shock, was just more of the same. I've never known good health so for someone who has it must be an absolute horror to find your body letting you down.

    Please let us know when your appointment comes through. In the meantime keep a dairy (nothing too lengthy) of pain and tiredness levels, what helps and what hinders so that when you see the rheumatologist he will have a better idea of how you are being affected on a day-to-day basis. I wish you well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • LignumVitae
    LignumVitae Member Posts: 1,972
    edited 30. Nov -1, 00:00
    I have little helpful to add but I do send you much sympathy. Time to adjust to your new circumstances helps with coming to terms. It's a two sided project, firstly you have to find ways to adapt to doing things differently so as to minimise pain and angry joints, secondly it's about readjusting your emotions and perspective of what the future will be. Neither are easy and both take time. I still find (15 years next month) that I grieve a little what might have been and struggle to adjust to what is. I still have to spend time working out how to adapt things to make them easier.

    I'm a couple of years younger than you with two year olds. If you have any questions about how to adapt with looking after a baby I am more than happy to see if I can help from my experiences. Feel free to message me. When it comes to picking up, I found that slings were useful sometimes, I still find the suggestion of a physio to make sure when I am sitting having a cuddle I have cushions (or a bean bag) under my arms to help support the weight of the cuddly bundle, an invaluably helpful idea.

    Good luck and do come and talk to us on here, we might not have the answers but we all understand where you are coming from.
    Hey little fighter, things will get brighter
  • LemonMerigue
    LemonMerigue Member Posts: 62
    edited 30. Nov -1, 00:00
    I'm sorry you're here Robosh. The only advice I can offer in regards to coming to terms with it, is to just take it a day at a time. The confusion and anger will eventually subside. There is no magic cure for wrapping your head round what your body is doing. I know just how you feel though. I'm newly diagnosed (March this year) with PsA. I'm 25 and have a 6 year old who is so energetic and playful but I can't even get on the floor to play lego with him and I can't push him on swings for longer than 5 minutes. Sometimes I can't even bend to tuck him into bed at night. It's truly heart breaking.

    It seems like your GP has been very "with it" on getting the ball rolling for your diagnosis. Once you have the right meds and the right support team things will start to get better, albeit slowly. I also agree with DD with regards to keeping a diary of pain etc. It's really very helpful. It helps you work out what your limits are. As I'm sure you know by now if you over do it one day, the next day the pain is so much more debilitating. Don't feel guilty for needing a rest. Listen to your body.

    Wishing you all the best.
  • theresak
    theresak Member Posts: 1,998
    edited 30. Nov -1, 00:00
    Hello again Robosh - I just posted on the "Hello " thread.

    Coming to terms with RA is a long process for most of us, and your diagnosis will have hit you hard because of your age and circumstances. It`s almost as if you have to have time to grieve for the person you were. However, there will be some light at the end of your particular tunnel, as there are now far more drugs available than in the past. Hopefully you will find the one/combination that suits you and brings some control over the RA.

    As others have said, you will find a way to pace yourself, and to adapt to the changes in your life. I used to cry my eyes out because I couldn`t lift up my first grandson, but by the time his brother came along a couple of years later I was in a much better place, physically and mentally, and the right drug combo has hugely improved my quality of life.

    Please post and let us know how you are doing.
  • robosh1976
    robosh1976 Member Posts: 7
    edited 30. Nov -1, 00:00
    well just had my referal come through and its for the 13th of july seams a long time to wait but at least there is a little light at the end of the tunnel
  • barbara12
    barbara12 Member Posts: 21,107
    edited 30. Nov -1, 00:00
    Hello robosh1976
    Welcome to the forum only sorry you had to look for us in the first place
    I count myself lucky being in my late 50s when I stated with OA...I have been on ADs and they really did help,but only after they were changed.
    Sorry I cant offer much advice but I do wish you well for the future glad to see you have your appointment through, and you will find its helps by talking to us lot.. :)
    Love
    Barbara
  • oxon
    oxon Member Posts: 2
    edited 30. Nov -1, 00:00
    hi, your appointment is 2 and a half months away, if youre a suspected rheumatoid/inflammatory arthritis patient, you need to be assessed much quicker than that.
    Speak to your GP and ask if you were referred urgently or routinely. Any suspected inflammatory arthritis must be referred urgently (means should be seen within 3-6 weeks). Im sure most hospitals have an "early arthritis clinic" - if you dont ask you dont get.
    That's what i would be doing if i was in your situation with your degree of pain. A steroid injection may quiten your symptoms somewhat also.
    good luck, i know what its like with teh psychological effect, was planning on getting married and trying for a family early next year - started Methotrexate 2 weeks ago and will have to come of it 4 months before we try - bit of a setback...
  • stickywicket
    stickywicket Member Posts: 26,278
    edited 30. Nov -1, 00:00
    Hello oxon and welcome to the forum :)

    I'm sorry your diagnosis has made a mess of your plans for starting a family. I'm afraid that's happened to quite a few on here. I hope things will work out for you at some point.

    I've never heard of an 'early arthritis clinic'. Is that early as in 'young' or as in 'for people newly diagnosed'. Also could you please let us know who says that 'Any suspected inflammatory arthritis must be referred urgently (means should be seen within 3-6 weeks).' Is that a national guideline or an imperative ie is it enforceable? I'm sure many of our forum members wait longer than that.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • robosh1976
    robosh1976 Member Posts: 7
    edited 30. Nov -1, 00:00
    well been on the phone for almosta hour trying to get my appointment brought forward and to no avail been told this is the only appointment availible the next one is in august so looks like i am going to have to grin and bare the pain until july 13th which is my birthday :) thank youso much for all yourkind messages
  • stickywicket
    stickywicket Member Posts: 26,278
    edited 30. Nov -1, 00:00
    I don't know if anyone's mentioned this before but, if you are mostly available, you could tell the hospital you could take a cancellation slot. That helps both parties.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • trepolpen
    trepolpen Member Posts: 504
    edited 30. Nov -1, 00:00
    I would ask your GP if they can give you a steriod injection to help you until you see the consultant , it will help & may get you back to work

    if your blood test has come back negitive for rheumatiod factor , there is another test they can do called Anti–citrullinated protein antibody (ACPA) for RA & ask what your inflamatory markers CRP & ESR , there about 200 forms of arthritis & thats why you need to see a consultant
  • littleelf
    littleelf Member Posts: 69
    edited 30. Nov -1, 00:00
    So sorry for your situation. I can't imagine the affect it must be having on your young family. :(

    I'm very new to this forum to, but it looks like they are such a supportive bunch and are ready to answer questions if they're able.

    Hope you get your appointment through soon. I too am having to push to get seen. Not easy at all.

    Good luck
    True strength is smiling when you want to cry; laughing to hide the pain; and going on, no matter what. <3