How do you cope?

I've recently been diagnosed with rheumatoid arthritis and have never been so miserable and unhappy in my life. A lot of the time I just wish I would die. I hate it ,everything I enjoyed has been taken away from me and I am in pain all the time . This is not living.

How on earth can I move on from here as I know this is not healthy.

Comments

  • Ellen
    Ellen Moderator Posts: 1,569

    Good morning @CrazyrunningDog a very warm welcome to the Online Community from me.

    I see from your post that you have recently been diagnosed with Rheumatoid Arthritis (RA) and are feeling clearly dreadful physically and mentally.

    I hope I am able to offer you some words of hope because so many of us have been where you are now and are here to tell you the tale.

    A diagnosis like this is a huge huge shock and living in pain is very very hard to cope with. However your Rheumatology team's aim is to reduce the symptoms you are currently experiencing as low as possible. I don't know what medication they have put you on, but you should be being monitored closely. I hope you have shared how bad you are feeling with your medical team? If not Rheumatology then your GP?

    We have a helpline here please do ring them they are incredibly supportive and knowledgeable:

    In addition, do please read this it has been especially compiled for people like you who are newly diagnosed the section entitled 'How to adapt...' is very relevant to your situation.

    I'm very glad you have posted Crazyrunningdog you are now no longer alone with this you have a huge community of people behind you.

    Best wishes

    Ellen.

  • Thanks Ellen I really don't know what to say every time I think about it I just burst into tears I hurt all the time I hate waking up in the morning as I don't know which part of me will be next in line and everything is ruined. Ive been prescribed Methotrexate 8 weeks ago and it is a little better but still hell. Im just trying to hold on as I was told it can take up to 12 weeks for it to fully work.

  • frogmorton
    frogmorton Member Posts: 29,242

    Hello @CrazyrunningDog

    I am so sorry you are suffering so much.

    When this kicked off for me I did so much crying too. I went to bed hoping the next day would be better it was so painful even the weight of sheets in bed hurt me (mine started in a hot May many years ago now, but I have never forgotten). I pictured myself in a wheelchair within months a liability to my (new) 2nd husband and an embarrassment to my children. Luckily none of that came true well apart from embarrassing my kids, but that's just me.

    You've just said to Ellen that you've started MTX 8 weeks ago and I am heartened that you can already see an improvement. Sometimes it can take a few different DMARDs before they find the right combination. Some of us are given additional meds like prednisone (steroid tablets) to tide us over while it kicks in. I was given a depot steroid injection in my rear.

    The turning point for me was probably coming here and finding other people who understood. Every kind reply made me cry more. I rang the helplines twice and both times just bawled and bawled for what seemed embarrassingly long before being able to speak. They were so kind and understanding and patient. Ring them honestly you won't regret it.

    When are you next at Rheumatology?

    My best advice? get informed reliably and safely - here is good.

    Keep talking to us lot - we won't be as upset as your friends and family who no doubt feel helpless.

    Be kind to yourself this really is massive and you are entitled to wallow for a while.

    Believe things will get better and talk to your medical team (Rheumatology helpline or GP) about just how bad it is for you the next chance you get.

    Take care

    Toni x

  • Thank you for your kind words and encouragement I spoke to someone from VA and I found it really helpful and felt so much better after crying and complaining. People who don't have RA don't seem to quite get it and keep telling you what you should do etc when all you really want is for them to shut up and let me talk and cry. I know they only want to help but it just feels like they want to solve it or shut you up because they can't cope. I had a steroid injection when I went to the hospital which seemed to work and I was feeling much better but it has been wearing off and I was just getting so depressed and miserable. I think the worst thing is not knowing what a so called successful result would feel like. My feet still hurt and my shoulder can be really painful making everything difficult but I guess I just have to be patient and give the medication time to work. I will be seeing the specialist nurse next week so will speak to her about what next. It's just really tough trying to keep positive. Thanks again and it is really good to know that I am not going mad and that everyone else has been through what I am experiencing and there is light at the end of the tunnel and it isn't a train coming in the other direction.

  • Crizmiff
    Crizmiff Member Posts: 9

    Hi, I was equally distressed and in so much pain I could hardly get out of bed and needed help to dress myself. I’m a 65 year ex copper who cycled about 50-70 miles a week during the summer until this hit me. It brought me to tears as well and I could still breakdown. I have a loving wife without who I don’t know what I would do. On the bright side, until I was prescribed steroids I was still immobile and in pain. One week on and the improvement is immense. MTX is the next move so my advice is to hang in there if you can, meds do exist to alleviate the symptoms and allow a return to normal life.

    ATB

  • Thanks for taking the time to reply.

    I found prednisone worked really well but the minute I stopped the RA returned .

    When I saw the specialist I was given a steroid injection and have now been taking MTX for 8 weeks.I think about 2 weeks ago the steroids stop working and since then I have had a couple of flare ups but not as intense or for as long as before.

    I was so disappointed that the symptoms had returned that the past 2 weeks I have been very down. I talked to the help line and that really helped and now that I can remember how awful it was earlier in the year I realise I have made progress just not perfection yet.

    I like you cycled to work every day did an hours yoga and walk the dog 5k a day. 8 weeks ago I couldn't walk and having gone from the guy who was always asked to" can you open this for me " to finding it absolute agony wiping my bum. It's so humiliating.

    At the moment I can walk the dog it does hurt a bit and have started to ride my bike a bit to the shops etc not that far really but progress.

    Hope that you do well on MTX and my experience is that sometimes I feel really optimistic and at others totally depressed and hate it. I don't think I have ever cried so much except for when I was about 1years old but at least I feel some what better after it.

    It really is a rollercoaster of a ride and Ive only just sat in the seat will have to see where it takes me.

    All the best Martyn

  • Woofy
    Woofy Member Posts: 254

    I was also diagnosed fairly recently with R A. It is really hard to get your head around isn’t it. I have a small dog walking business, and it has been so so hard keeping going, but I try because I just don’t want to give up. I have felt like you on so many occasions.

    I just keep telling myself things will improve. I am also waiting for my meds to kick in. I had steroids, and they made me feel almost normal again. Alas you can’t stay on them forever. I try to think about folk that are worse off than me, and I know lots on here have had this going on a lot longer than I have. We are all here for each other, and the help line are fantastic, I have also sobbed down the phone to them. I am still at the stage where I am in quite a bit of pain most days, but it isn’t as bad as it was in the beginning.

    i have been sort of keeping a journal with my journey, and it has helped jotting things down. I rest when I can. You have to be kind to yourself. I try to take each day as it comes, and don’t look too fair a head. Chin up.

  • frogmorton
    frogmorton Member Posts: 29,242

    Good morning @CrazyrunningDog

    this thread is making me cry it's just so wonderful seeing everyone supporting each other.

    This is what this forum is about .

    I am so very very glad you braved talking to the helpline and allowed yourself the space to cry. It is not pathetic to feel what you feel this is awful, but really really should get better.

    Our families and friends just don't know how to help and yes they'd rather you felt well. That question 'how are you'? is a greeting and not really meant to mean 'how are you'? very often. Most people want you to reply with 'fine thanks you?' I also hated the 'you look well' statements hoping to elicit another 'fine' type reply.🙄There are a few people who genuinely want to know how you are of course.

    Someone 'strong' being ill frightens them, I think, it makes them realise it can happen to anyone including themselves. I just tell myself that, smile and say 'not too bad'.

    Finally I very much hope the nurse has some further suggestions for you - maybe another depot because it does sound as though the MTX is starting to kick in. While things settle for you please do keep posting and one day it will be you supporting another terrified newly diagnosed person who is in agony.

    Take very good care

    Toni

  • Thank you all for taking time to comment. I do feel slightly better this morning sometimes it's just is so overwhelming and scary. I must admit that a good cry and moan does make me feel better at times. It's just so hard living in a body that doesn't feel like yours. A year ago I cycled to work did an hours yoga every morning walked the dog 5k a day and now I hobble around like an old man and wake up each morning wondering which bit of me is going to be giving me hell today.

    Sometimes it is hard to remember how bad it was and even though I am still in pain it really is a great improvement on where I was 8 weeks ago. I couldn't walk even going to the toilet was agony. So things are getting better.

    I think what was getting me down was not knowing what "normal" is going to feel like when the meds fully work.Will I be in pain but not agony etc.I will have to wait and see. From what I have read here normal seems to be mostly pain free or am I delusional?

    Im also very angry at times and I also find myself feeling very sorry for myself it really is a very emotional experience and having to live day by day and not being able to make plans etc is really hard.

    I guess I just need to be patient as this is going to take time to adjust to.

    Thank you all and knowing others have managed it gives me hope that I will.

  • jamieA
    jamieA Member Posts: 667
    edited 23. Nov 2022, 13:47

    Hi @CrazyrunningDog

    I can really relate to your second paragraph in your last post - the simple things in life become extremely difficult if joints aren't working and you are in pain.

    I think one thing I've learned in the last 2 years since I was diagnosed - in my case with rapid onset psoriatic arthritis - is there's no set path to some form of recovery as everyone is different and reacts differently to the drugs. I'm currently on sulfasalazine, MTX and the biologic adalimumab. I remember the rheumatology nurse saying she was really glad the first biologic I was given worked as there were 7 different ones they could have tried - so I don't think it's an exact science.

    I'm not able to do many of the things I could just over 2 years ago but I've adapted. I've bought a number of helpful gadgets to allow me to function. I'm by no means pain free but have made the conscious decision to steer clear of heavy duty opiod pain relief as I 'lost' much of 2021 when I was on them. I was referred to a pain clinic which helped as well as getting a couple of courses of physio.

    I hope you get stable soon.

  • Thanks for writing . Just doing really basic stuff feels like a triumph. It's so weird within the space of 12 months I've changed into a really old man. A little extremely light gardening and I have to admit maybe Ive overdone it a bit. Dragging my "shopping trolley" round the supermarket whilst everyone else whizzes around is really disorienting.

    I am sure I will ajust in time but at the moment I am just hoping the meds work and I regain some sense of normality in time.

    Naproxen is the only pain killer that works for me but every time I take it I panic a bit as I also have kidney problems and I don't have the emzines in my liver to process Codeine Etc.

    My dog keeps me going he is 12 and needs me around to look after him in his last few years.

    I've become an old man with his old dog shuffling along the street.

    Just hope I don't become bitter and grumpy.

    Oh well at least it is sunny here today and I have developed an appreciation for small pleasures in life.

    All the best to you Martyn

  • Jewels
    Jewels Member Posts: 201

    I really relate to this thread I've got oa in my hip waiting to go on the list for a thr my shoulder has also started with oa and for the past couple of months I've been getting sore elbows heels and one part of my foot is really painful it's like a hot poker my gp has referred me to rheumatology as I have psoriasis and my inflammation markers keep going up so he thinks I may be starting with phsoratic arthritis along with anxiety and depression and I suffer from silent migraine it's like my body just keeps on giving im 47 and the mother of 5 kids all growing up now and it's like i can't do the things i could or want to do anymore I've got a beautiful granddaughter who's only 1 and just trying to play or pick her up is soo hard it really hurts emotionally and I hate how my body has broken down so much in the last few years it's a lot to deal with but this site is really great as everybody can relate to you somehow just thought I'd put it out there xx😁

  • frogmorton
    frogmorton Member Posts: 29,242

    I'm just finding this thread so heartening.

    I can't comment it's made me well-up again.

    Great people great support. Wonderful and what this is all about.

    🤧

    Toni xx