Newly diagnosed...feeling alone


I was just diagnosed a few days ago after having several episodes of fatigue and pain over the past few years, the current one being the worst by far.

Although it is somewhat a relief to know that it hasnt all been in my head I feel like my head is spinning from the diagnosis and I dont know what to do next. Nobody around me understands or can offer advice. I feel very alone and scared right now. Have been prescribed mtx despite not having bloodwork results yet. Is that normal?

14 Replies

  • First lesson I found hard to learn - to pace yourself! There was a time when a weeks bed rest went with the mtx. After 15 years I have accepted that I cannot race around as I did before RA but I am now rarely confined to bed I have adapted the way I do things. I found the RA went through phases which were very hard to cope with also it isn't the same for everyone so you have to work out what is right for you. I hope mtx works for you.

  • Don't feel that you are alone, there are lots of people on here that have been in the same boat. Take your time with things that need to be done and don't worry about having to take time out for yourself.

    There is lots of good advice out there and loads of information can be found. Talk to your gp or nurse they are there to help. There may be a group in your area where you can meet others like you.

    I was put on mtx before my bloods too, it takes a while for it to start working but you may find it helps. The gp will monitor your bloods to check its progress and you can speak to them if you feel it's not right for you.

    Take care, you are not alone in your journey.

    X 😀

  • Oh bless you.I know how scary medical diagnosis is as I am like you just been told I have something else as well.Then we scare ourselves more by going on the web but sometimes it does help.We are all on here to try and help each other and pull our moods up but your best best is talking to the professional people and insist on proper explanations.Loved ones don't understand and friends just see you looking normal n think all is ok then they just go about their own lives.

    Don't know if its normal to go on MTX without blood results.I have been on it for a while but only after having to go in hospital for a week as was too bad to walk n get out of bed.I hope it helps you.

  • Your not alone we have all been their. It takes alot to get your head around your diagnosis. I was diagnosed 7mths ago and still struggle. Start the mxt and do alot of reading and research about whats going on in your body. Alot of ppl wont understand. Main thing to do is rest when you can and dont over do it.

  • Hi Sam,

    I understand you feel scared, you have to get used to the fact that you have got this rotten disease, I have RA for more than 20 years, with ups and downs with operations and all kind of medicines , including biologicals.

    My advice, try to fit it in to your life, take your rest, talk about it with friends and family! Take time to realise that it will have effect your life, but there is still a lot to live for!

    Wish you all the best and a lot of love!


  • It's a lot to get your head round and you will soon find you have to do things differently,this site is great as we are all in the same boat

  • Hi

    Why not give the NRAS helpline a call and have a chat to one of the team who can also put you in touch with one of our telephone volunteers or check to see if there is a group in your area. The helpline can be contacted on 0800 298 7650 Monday - Friday 9.30-4.30.

    Best wishes


  • Hi Sam,

    Firstly I'm sorry you have been given this diagnosis and are experiencing pain and fatigue. You are not alone, rest assured.

    I was diagnosed in January after two years of pain and fatigue and RA was my diagnosis despite negative blood work. I too was also put on Dmards before blood work results which was a relief in a way because at least I knew the illness wasn't all in my head. I went to a patient information group set up by the rheumatology team and saw for myself that others are living with AID.

    No one around me understands either, everyone wants to give advice but none of it is very helpful. What got me through my first month of diagnosis was lots of research into the disease, what is it, how do other people cope with struggles I have too, what drugs are effective, and what other treatment options do I have. Without researching I wouldn't have got through the diagnosis at all, I was desperate and even had thoughts that I wanted to end it all. I know now that this was all part of acceptance of diagnosis and of grieving for my old 'healthy body'. First, I did a tiredness diary as suggested by arthritisuk, which showed me that I could reduce fatigue myself by prioritising what tasks truly needed doing. I was kind to myself as much as possible by congratulating myself when I was able to do certain tasks e.g. Get washed and dressed. I began growing some vegetables as a way of being outside even when I felt fatigued. I hated everyone telling me to go and do things when I literally couldn't be bothered to get up and brush my teeth.

    Pain is tiring. Balance doing anything with rest, my body tells me when I've had enough, listen to your body.

    Don't be afraid to get general steroid injections if you feel you are flaring (becoming more tired or experiencing more pain) whilst the MTX starts working.

    As a 28 year old party goer gardening was not my first choice but it's given me joy and purpose when life has felt pointless. Maybe find something to do that is similar for you that you can do at your own pace.

    People close to you may never understand what you're going through, life is completely different now. I haven't been able in 8 months of diagnosis to change that feeling of people not understanding, but I have realised that being firm and saying no is ok. Stress caused by worrying that people do not understand makes pain and fatigue so much worse. I've educated people around me as much as possible, and where necessary reminded them that if I've had to let them down, it wasn't a choice, I would never have let anyone down before getting ill. That is all I can do.

    I went to an acupuncturist who helped relax me and reduce pain, again arthritisuk has information on the effectiveness of acupuncture, it certainly helped me, and can help with medication side effects as well as pain.

    I wish I could say that people will get how you are but they may never, so educate yourself, tell them your experience and release stress in a meaningful way to you. Share your story online, I wrote a timeline when I felt strong enough and it helped accept the massive changes that have been thrown at me,

    Having RA is hard work, don't forget that and be kind to yourself. Ask others for help and support if you feel comfortable to, you never know you may be surprised.

    Mind also do groups on talking health which is counselling on how to cope with chronic illness.

    Warm wishes,


  • I've found the helpline really good when needed. This forum is great for exchanging information and non- medical advice, though I try to remember that while we're in the same boat our experience of RA is a bit different. I think the advice you can get here about pacing and resting is invaluable but also check out NRAS advice on exercise.

    And we probably all benefit from having a good relationship with the Rheumy department. It's always possible to change Drs if you don't get on


  • It wouldn't be that unusual to start treatment without blood results for a couple of reasons

    - there is no blood test that definitively diagnoses RD

    - not everyone has positive Rheumatoid factor

    The results of your blood tests will only add to the picture the rheumatologist has from speaking to you and examining you. Since there is a very short window of opportunity that gives the best chance of getting the disease under tight control and minimising damage, doctors now tend to prefer not to wait to start DMARDs if your presentation is clear enough to them.

    The start is the scary bit. You will learn how to manage and adapt over time. Unfortunately, people don't understand. I've been at this half my life and people still don't understand......except for the people here. Let us know how you're getting on.

  • It is scary, and a huge shock. So don't feel as if you have to be Wonder Woman/ Wonder Man and just keep going regardless. Be nice to yourself, and be a bit selfish so that you look after yourself as it's important right now to rest, and live as healthily as you can. With luck the meds will kick in soon, and things will start to improve in a couple of months. But take it one step at a time, as this is a lot to take in. Just hold on to the fact that for the majority of us this disease can be controlled - I'm pretty ok now.

  • I felt the same as you, mine just started out if no where, you can't tell people how you feel in yourself because unless you have it then you would understand, I take mtx in injection form and without it I wouldn't be able to use my hands, the pain is unbearable, I couldn't even brush my teeth without being in pain, I have soreness some times but it's bearable, it's tiredness I struggle with, but your not alone there's loads of people on here who will talk to you and try to be of help, when I go to my RA clinic and see some people who have it really bad and can't hardly move, I think come on sue you ent that bad stop moaning, but I understand how you feel,

  • Hello sam and welcome. We can all remember what it was like when we first got our be honest I was a bit relieved at the time as I thought I was developing MS because I had lost all the strength in my hands! I though 'oh thats alright right then a wee bit of arthritis'!!!!!!

    When the disease hit me full force it literally knocked me off my feet. As others on her will tell you it is very difficult for others to understand exactly what your going through. They think like I did 'arthritis, sure I have that in my left knee', 'me auntie Rosie has that too' will hear all sorts like that. You have an autoimmune Disease where you own body is attacking your healthy blood cells. You do not have ware and tare ostio Arthritis. I don't mean to imply that ostio (spelling?) Arthritis is not a serious and very painful condition when I say it is different from RD but they are not the same. You are right when you say that people simply don't'll learn to find a way to deal with it in time......have a look at and let friends and family have a look, it might help a bit.

    Sam there is loads of help/advice to be had in here......anything from sex to vacuum cleaners, just ask and someone will come up with something for you.

    In the meantime get to know your rheumy nurse, he/she might become your best friend in the days and months to come. Don't be afraid to ask the professionals questions and write down the questions you want answers to and take the list to your appointments as there is so much being said and you my not remember everything. I used to take someone with me when I first started attending the Rheumy clinics. They would often remember something I had missed. If you want to talk about anything that this disease is effecting just come on here and let us all help you. I wish you all the very best Sam. It can be a bit confusing at the beginning, there is a lot to take notice of but as I said if you are confused, anxious, depressed, in pain, frustrated......what ever your feeling and you need a friend......we are all here to support you in any way we can. All the best Darlin. Jean.

  • Thank you so much for all your comforting responses. You have helped me feel like this is not such a lonely journey after all and I feel a bit more confident that I can make it through this. I will keep you posted how the mtx goes and I look forward to getting to know you better :)

You may also like...